Recognize, Assist, Include, Support, & Engage (RAISE) 

Family Caregivers Act

Initial Report to Congress

Prepared by: RAISE Family Caregiving Advisory Council

With assistance from: Administration for Community Living, 

an operating division of the U.S. Department of Health and Human Services

Recognize ASSIST INCLUDE SUPPORT ENGAGE

September 22, 2021
Contents

The Family Caregiving Advisory Council . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 

Letter from Acting Administrator of the Administration for Community Living . . . . . . . . . . . . . . . . . . . . .  i

Executive Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1

I. Background & Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

Incremental Progress in Recognizing Family Caregivers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26

Role of the Administration for Community Living (ACL) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30

Establishing the Family Caregiving Advisory Council . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32

II. Current Understanding of Family Caregiving . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 41

Who Are America’s Family Caregivers? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 41

Family Caregiving Tasks . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43

Forgotten Caregivers: Children and Teens . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 46

The 2019-2020 ACL Request for Information (RFI) on Family Caregiving . . . . . . . . . . . . . . . . . . . . . . . . . . . . 48

The Intersection Between Family Caregiving and the Direct Care Workforce . . . . . . . . . . . . . . . . . . . . . . . . . 52

It’s Time to Include Family Caregivers in Systems and Policies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57

III. Existing Federal Approaches to Assisting Caregivers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 62

Supporting Caregivers in Indian Country: Insights from the ACL Title VI Programs . . . . . . . . . . . . . . . . . . . . . 69

Inventory of Federal Caregiver Support Programs and Initiatives . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 71

The Interplay between Family Caregiving and the Medicaid and Medicare Programs . . . . . . . . . . . . . . . . . . . 76

IV. Recommendations to Recognize, Assist, Include, Support, & Engage Family Caregivers . . . . . . . . . 85

Goal 1 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 90

Goal 2 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 94

Goal 3 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 100

Goal 4 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 106

Goal 5 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 110

V. International Approaches to Supporting Family Caregiving . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 118

Implementation of a Caregiver Strategy in Australia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 120

Engage Family Caregivers Every Step of the Way . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 121

VI. Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 125

Scope of this Report . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 125

Acronyms and Abbreviations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 127

Works Cited . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 128

Acknowledgements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 140
RAISE Family Caregivers Act Initial Report To Congress Page i

The Family Caregiving Advisory Council

The Family Caregiving Advisory Council at its inaugural meeting in August 2019.

The Recognize, Assist, Include, Support, & Engage (RAISE) Family Caregivers Act 

of 2017, (Public Law 115-119) called for the establishment of the Family Caregiving 

Advisory Council (the council) to advise and provide recommendations, including 

identified best practices, to the Secretary of the U.S. Department of Health an

Human Services (HHS) on recognizing and supporting family caregivers (RAISE Family 

Caregivers Act of 2017, 2018). The report that follows is the council’s initial report to

Congress

This report outlines progress to date on the council’s efforts to evaluate and 

document the experiences and unmet needs of the nation’s family caregivers in the 

current environment. The report includes 26 recommendations that were developed

in response to a broad range of information-gathering efforts conducted between 

2019 and 2021. These efforts included a formal request for information (RFI) from

family caregivers, a series of listening sessions and focus groups, and more than 

a dozen briefings from experts in the field, along with the considerable personal 

and professional insight members of the council brought to its deliberations. These

recommendations, each of which includes a rationale statement developed during 

council meetings, will serve as the foundation for a forthcoming National Family 

Caregiving Strategy. The strategy is described in section 3 of the RAISE Family

Caregivers Act
RAISE Family Caregivers Act Initial Report To Congress Page ii

The RAISE Family Caregivers Act called for the appointment of 15 members of 

the public to serve as voting council members. In addition to providing a wealth of

professional expertise, several members are family caregivers or individuals with 

disabilities who receive assistance and support from one or more family caregivers

The appointed council members include: 

■ Ben Bledsoe, M.H.A., President/CEO of the Consumer Direct Care Netw

■ Joe Caldwell, Ph.D. family caregiver and the Director of the Community Livin

Policy Center at the Lurie Institute for Disability Policy, Brandeis University

■ Diane Caradeuc, family caregiver and federal government retiree

■ James S. Cheely, family caregiver and project manager with a General Contracting

company from Glasgow, Kentucky

■ Jisella Dolan, family caregiver and Global Chief Advocacy Officer for Home Instead 

Senior Care®

■ Brenda Gallant, R.N., Executive Director of the Maine Long-Term Care Ombudsma

Program

■ Catherine Alicia Georges, Ed.D., RN, FAAN, family caregiver and AARP’s Nationa

Volunteer President from June 2018 to June 2020

■ Rhonda J.V. Montgomery, Ph.D., family caregiver and co-founder of TCARE,

■ Nancy Murray, M.S., family caregiver and President of The Arc of Greater Pittsburg

at ACHIEVA

■ James Murtha, III, MSW, disability rights advocate and mental health therapist/faithbased counselor for St. Vincent Catholic Charities of Lansing, Michigan

■ Casey R. Shillam, Ph.D., RN, family caregiver and dean and professor of t

University of Portland School of Nursing

■ Alan B. Stevens, Ph.D., family caregiver and the Vernon D. Holleman-Lew

Rampy Centennial Chair in Gerontology at Baylor Scott & White Health 

■ Deborah Stone-Walls, family caregiver and member of the National Association of 

Area Agencies on Aging (n4a)

■ Theresa Tanous, MHA, family caregiver and federal government retiree

■ Carol Zernial, M.A., Executive Director of the WellMed Charitable Foundatio

The RAISE Family Caregivers Act correspondingly called for participation from nonvoting members representing the federal departments and agencies that play a role 

in caregiver support, long-term services and supports (LTSS), labor and workforce, 

government financial policies, community service, and impacted populations. The

statute specifically called for participation from the administrators (or designees) of the 

Administration for Community Living (ACL) and the Centers for Medicare & Medicaid 

Services (CMS), both within HHS, and the Secretary for Veterans Affairs (or designee)

In addition, the following agencies are represented on the council:
RAISE Family Caregivers Act Initial Report To Congress Page iii

■ The Administration for Children and Families (ACF)

■ AmeriCorps

■ The Centers for Disease Control and Prevention (CDC) 

■ The Consumer Financial Protection Bureau (CFPB) 

■ The Food and Drug Administration (FDA)

■ The Health Resources and Services Administration (HRSA) 

■ The Indian Health Service (IHS) 

■ The National Institute on Aging (NIA), National Institutes of Health (NIH)

■ The Office of the Assistant Secretary for Planning and Evaluation (ASPE)

■ The Office of the National Coordinator for Health Information Technology (ONC) 

■ The Substance Abuse and Mental Health Services Administration (SAMHSA)

■ The U.S. Department of Agriculture (USD

For more information, visit the RAISE Family Caregiving Advisory Council website
RAISE Family Caregivers Act Initial Report To Congress Page iv

Letter from the Acting Administrator of the 

Administration for Community Living

Family caregivers have long been the backbone of America’s caregiving infrastructure

Each year, more than 53 million people provide a broad range of assistance to 

support the health, quality of life, and independence of someone close to them 

(AARP and National Alliance for Caregiving, 2020). Millions of older adults and people

with disabilities would not be able to live in the community without that support, 

and replacing it with paid services would cost an estimated $470 billion each year 

(Reinhard, Feinberg, Houser, Choula, & Evans, 2019)

Providing that support is rewarding, but it can be challenging. When family caregivers

do not have training, support, and opportunities for rest and self-care, their own 

health, well-being, and quality of life suffer. Their financial future can also be put at risk

– lost income due to family caregiving is estimated to be a staggering $522 billion each 

year (Chari, Engberg, Ray, & Mehrotra, 2015)

About 1 in 7 of us is serving as a family caregiver at any given time, and more than 

two-thirds of us can expect to need assistance with some tasks as we age. With the

populations of both older adults and people with disabilities growing, there has been 

an increasing recognition in recent years that supporting family caregivers is a critical 

public health issue that affects all of us

The COVID-19 pandemic laid bare the fragility of our nation’s system of LTSS. Together,

we witnessed the impact of the longstanding shortages in the workforce that provides 

paid care, our dependence on volunteers, and the extent to which family caregivers 

must fill the gaps when services are not available. The pandemic also exacerbated the

challenges of family caregiving. Balancing work, family, and caretaking became even

more difficult, and in many cases, caregivers had to completely leave the workforce. The

pandemic has created a new urgency and momentum to address caregiving

We now have an unprecedented opportunity to achieve – and go far beyond – the 

goals Congress established in the RAISE Family Caregivers Act. As part of our

country’s recovery from the COVID-19 pandemic, President Biden has made clear 

that strengthening our care economy is key. Under his Build Back Better plan, he i

calling for significantly increased funding for home and community-based services, 

and propose to increase pay and benefits to address the direct care workforce crisis

The Build Back Better plan also calls for paid family and medical leave, which is crucial 

to supporting family caregivers. Those investments, together with the National Family

Caregiving Strategy that will be informed by this report and the ongoing work of the 

RAISE Family Caregiving Advisory Council, have the power to transform our system
RAISE Family Caregivers Act Initial Report To Congress Page v

Of course, this transformation must include the voices of family caregivers, and 

this report draws heavily from input received through more than 1,600 comments 

submitted by caregivers and advocates and from listening sessions the council held 

during the COVID-19 pandemic

I want to express our deepest gratitude to the members of the council for their hard 

work on this report, and to the family caregivers who shared their stories and input

I also want to thank the National Alliance for Caregiving (NAC) for their support in 

collecting and publishing caregiver stories that introduce each of the chapters in 

this report and so poignantly illustrate the needs it addresses. Finally, ACL thanks

our partners, without whom this important work would not have been possible: The 

John A. Hartford Foundation, the National Academy for State Health Policy (NASHP),

Community Catalyst, the LeadingAge LTSS Center @UMass Boston, and the panel of 

nationally recognized experts on family caregiving convened by NASHP to support the 

council

As this report shows, we have our work ahead of us if we are to truly Recognize, 

Assist, Include, Support, and Engage the millions of family caregivers in the United 

States of America. We stand on the edge of a once-in-a-lifetime opportunity to bring

that vision to life, and we are committed to seizing it

Alison Barkoff 

Acting Administrator

Administration for Community Living

U.S. Dept. of Health & Human Servi
RAISE Family Caregivers Act Initial Report To Congress Page 1

Executive Summary

The U.S. population is currently experiencing exponential growth in the populatio

of older adults and people with disabilities. This increase is expected to accelerate

over the coming decades. By 2030, there will be 77 million people 65 years and older

(United States Census Bureau, 2017). Many of these people will experience “limitations

in physical health and functioning, mental health, and/or cognitive functioning” 

(National Academies of Sciences, Engineering, and Medicine, 2016). For example,

today, more than 5 million Americans live with a diagnosis of Alzheimer’s disease or 

a related dementia (ADRD). As the population of older adults increases, researchers

anticipate the number of people living with ADRD will double by 2060 (Matthews, 

et al., 2019). The majority of these individuals will need day-to-day assistance an

support from one or more family members in order to retain their independence, quality 

of life, and well-being

Meanwhile, the population of people of all ages with disabilities and functional 

limitations is also growing. According to the 2018 American Community Survey (ACS),

40.6 million Americans (12.6% of the population of children and adults) currentl

have a disability or impairment (United States Census Bureau, 2018). While some are

eligible to receive assistance through state and federal programs, most people who 

need community-based care rely on uncompensated assistance from family caregivers 

(Reinhard, Feinberg, Houser, Choula, & Evans, 2019)

Despite the fact that humans have always cared for each other (and will continue to 

do so), family caregiving as a public health issue has been largely overlooked until 

recently in many public policy areas (National Academies of Sciences, Engineering, 

and Medicine, 2016). Developing the infrastructure and systems to appropriately

recognize, assist, include, support, and engage family caregivers has never been 

more important. This is true for individuals, families, communities, and the nation as a

whole. Many people are happy to provide support to their friends and family members

and willingly step into this role. They find it rewarding and are glad that the person

they support receives the care and assistance he or she needs. However, without

education, counseling, assistance, and support, the experience of caregiving can be 

a difficult one for some people. Despite the rewards of caregiving—the satisfaction

and comfort of knowing that the person they support is receiving quality care—many 

describe the journey of caregiving as a “lonely” experience (AARP and National Alliance 

for Caregiving, 2020)
RAISE Family Caregivers Act Initial Report To Congress Page 2

“How do we create a world where caregiving is central to who we are, as opposed 

to something that diverts us or is a sideline of our real lives?”

-Carol Zernial, M.A., caregiver & Family Caregiving Advisory Council member

When it comes to determining the exact number of family caregivers in the U.S.

national estimates vary. These differences make it difficult to statistically gauge the

need for support and develop systems of evidence-informed supports to address 

those needs. For example, the 2017 Panel Study of Income Dynamics estimated

that 26.4 million people were providing caregiving support to adults with physical 

limitations in “a typical week” (Freedman & Wolff, 2020). That number more than

doubles if the reference period is expanded to one year. In the 2020 update t

Caregiving in the U.S., AARP and NAC estimated that 53 million people supporte

“an adult or child with special needs” in the past year (AARP and National Alliance for 

Caregiving, 2020). Caregiver prevalence rates are also shaped by other factors such

how researchers define caregiving, the types of caregivers interviewed, the ages of the 

people receiving support, the methods used to identify and recruit caregivers, as well 

as survey instruments used (Mudrazija & Johnson, 2020)

Even though estimates of caregiver prevalence vary, one thing is not in dispute: Our 

nation’s system of long-term services and supports (LTSS), which includes both 

community-based services and institutional care such as that provided in nursing 

homes, could not function without the contributions of family members, who provide 

a wide range of assistance and supports across all care settings. In fact, the nation’s

millions of family caregivers are commonly referred to as a “safety net” to millions of 

Americans who rely on their support for quality of life, independence, and autonomy, 

all of which are important components of self-determined living

Researchers estimate the economic value of the unpaid support family caregivers 

provide to adults with limitations in daily activities at $470 billion (Reinhard, Feinberg, 

Houser, Choula, & Evans, 2019). But the contributions to the lives of others—including

society as a whole—are impossible to measure. These contributions, however, often

leave caregivers financially, emotionally, and physically depleted and socially isolated

When family caregivers are untrained, unsupported, and do not have opportunities to 

engage in meaningful self-care and rest (i.e., respite care), the experience of famil

caregiving can negatively impact their physical health and mental health. For example,

multiple studies have shown that caregivers are at greater risk of depression and 

mental health issues when compared to non-caregivers (Mudrazija & Johnson, 2020)

A significant portion report “high physical strain,” “substantial physical problems,” and 

are more likely to report experiencing “fair or poor health” than the general population 

(Mudrazija & Johnson, 2020). However, a growing body of research has shown that

when caregivers receive assistance that is appropriate to their needs, both they and 
RAISE Family Caregivers Act Initial Report To Congress Page 3

the people they support experience improvements in well-being and quality of life 

(National Academies of Sciences, Engineering, and Medicine, 2016)

“As a nurse and palliative care scholar, I have the knowledge and skills to manage 

the most complex of patient situations. Yet, the moment I became a family 

caregiver for my parents, I had no idea what to do. I was no longer the palliative 

care “expert,” but the scared daughter of parents I dearly love. I now have a very 

different perspective: regardless of one’s education, background, or experience, 

family caregiving is very personal and complicated, even for an ‘expert.’”

-Casey Shillam, Ph.D., RN, family caregiver and co-chair of the 

Family Caregiving Advisory Council

Supporting caregivers also can address some of the financial challenges that come 

with caregiving. When family caregivers have to take time off work or leave the work

force, it can impact their financial health over both the long- and short-term (Mudrazija 

& Johnson, 2020). For individuals providing long-term caregiving, lack of workplace

flexibilities and limited access to paid leave for caregiving can make it difficult to 

balance employment and assisting a family member. As a result, many family caregivers,

especially those in low-wage or part-time jobs, may reduce work hours, switch to parttime work, or temporarily leave the workforce (Mudrazija & Johnson, 2020). In one study,

15% of adult caregivers who stopped working reported that they did so “because their 

job provided inadequate flexibility” (Spillman & Urban Institute, 2016)

When Congress passed the Recognize, Assist, Include, Support, & Engage (RAISE) 

Family Caregivers Act, it established the RAISE Family Caregiving Advisory Council

(the council) and authorized the development of a National Family Caregiving Strategy

The aim of the strategy is to enable family caregivers to provide the best care possible 

without sacrificing their own physical, mental, emotional, and financial well-being in the 

process

Even though family caregiving includes a wide variety of activities and is provided by a 

cross-section of people representing all ages and backgrounds, the council identified 

five unifying characteristics of the experience of family caregiving that drive the need 

for a more holistic approach to supporting family caregivers:

1. First, there is a significant personal relationship (or connection) betwee

family caregivers and the people who receive support. Some caregivers provide

assistance out of a wellspring of love and concern, but personal feelings are not 

always the driving force. Other caregivers provide care in response to tradition,

culture, family expectation, and other factors. Often some combination of these

reasons shapes the experience of family caregivers
RAISE Family Caregivers Act Initial Report To Congress Page 4

2. Second, caregivers provide support so that family members and close friends ca

maintain their independence, dignity, engagement, and/or quality of life

3. Third, they often provide this support without a formal assessment of th

needs of the person receiving care or the caregiver’s own needs. That means they

may have to take on tasks they do not know how to do, or do not feel comfortable 

doing, and have little access to training or assistance. They learn on the job

and “in the moment,” which can make an already complex task both stressful 

and exhausting. On top of this, there is little recognition of the difficulty of their

responsibilities

4. Fourth, the nature of family caregiving is becoming ever more complex i

the modern era as it extends to more medical, administrative, and care 

coordination activities than ever before. Whereas caregiving at one time might

have meant helping with activities of daily living (ADLs), now it can include 

medication management, dealing with insurance payers, technical support for 

electronic equipment and medical devices, coordinating care across systems,

and much more

5. Lastly, because they often are overlooked and have few consistent supports, th

experience of being a family caregiver, no matter how emotionally rewarding, can 

leave caregivers financially, emotionally, and physically depleted and 

socially isolated

While family caregiving often takes place in the home or similar setting, it is important 

to note the responsibilities do not end when the person receiving support goes into a 

hospital, nursing home, or hospice. Many times, the family caregivers’ responsibilities

then shift from that of a direct support provider to those of an administrative or care 

and services coordinator role. In other situations, family caregivers might assist with

the care provided in a nursing home or serve as a bridge between facility staff and 

the care recipient, helping to smooth the way for care to be provided or to build trust 

between their family member and staff. In these situations, the support needed by

family caregivers might shift caregivers’ responsibilities, which means that caregivers 

will need to learn new skills, sometimes on short notice. These family caregivers also

need support

As the population of older adults and people with disabilities grows and the need 

for supports and services to sustain their independence and well-being increases, 

government spending on long-term care will become unsustainable without 

the contributions of family caregivers. Timely action to strengthen the national

infrastructure of policies, structures, and systems to ensure sustainability by 

supporting family caregivers today and in future decades, cannot be overstated. To do

this in a meaningful way, however, recommendations must focus on areas that have 

the potential for greatest impact
RAISE Family Caregivers Act Initial Report To Congress Page 5

The first step in such an approach is understanding the needs of family caregivers. For

that reason, the members of the council were appointed based on their professional 

expertise and personal experiences. Council members recognized that because the

experience of caregiving is so varied, even their own perspectives are not enough 

to address the multiplicity of caregiver circumstances and needs across the nation, 

especially in today’s rapidly changing environment

As a result, to understand more fully the diverse experiences of family caregivers amid 

the dynamic nature of the current landscape, the council embarked on a multifaceted 

effort to solicit input from a broad range of experts and thought leaders. Efforts

included reviewing the work of other caregiving-focused councils and task forces, 

convening focus groups, and conducting interviews, all of which were made possible 

thanks to generous support from The John A. Hartford Foundation. The counci

also gathered information about existing federal support for caregivers through the 

development of the Inventory of Federal Caregiver Support Programs and Initiatives 

(required under the RAISE Family Caregivers Act). They received briefings from a

range of nationally recognized experts on key caregiving issues, and opened council 

meetings to participation by members of the public via live chat after social distancing 

mandates necessitated a shift to online meetings starting in March 2020

The most significant information-gathering effort of the council was the release in late 

2019 of a formal request for information (RFI) through the Federal Register. The RFI

yielded more than 1,600 responses from caregivers of every age and walk of life. Some

of these responses were deeply moving testimonials detailing the joys and heartache 

of providing support to others while trying to navigate complex health care and social 

service systems, raise children, maintain employment, and find time for self-care. Other

responses came from professional and advocacy organizations providing nuanced 

insight into such topics as nutrition, education, mental health, and how the challenges 

faced by the paid caregiving workforce, or direct support professionals, overlap with 

the needs of unpaid family caregivers. More than 30 quotations from the RFI responses

are included throughout this report

The RFI results were interpreted and analyzed by researchers at the University of 

Massachusetts. The resulting report, In Their Own Words-Caregiver Priorities and

Recommendations: Results from a Request for Information by Pamela Nadash, 

Ph.D.; Taylor Jansen, M.S.; Eileen J. Tell, M.P.H.; and Marc Cohen, Ph.D.,

quantitative and qualitative analysis and discussion of the trends identified in the RFI

To address the broad mandate of the RAISE Family Caregivers Act, the council also 

commissioned two other subject-specific reports to explore the interaction between 

the Medicaid and Medicare programs and family caregiving. The reports include:
RAISE Family Caregivers Act Initial Report To Congress Page 6

■ Medicaid Supports for Family Caregivers by Neva Kaye and Salom Teshale, Ph.

■ Issue Brief: Medicare and Family Caregivers by Judith A. Stein, Executive Director,

and David A. Lipschutz, Associate Director, of the Center for Medicare Advocac

These three documents were developed with funding from The John A. Hartford

Foundation and assistance from the National Academy for State Health Policy (NASHP)

They were published independently of this report in 2020 and 2021 to assist the council 

in its deliberations. They do not necessarily reflect the views of ACL or HH

The council used the findings of its information-gathering efforts to develop the 

recommendations presented in this report. The recommendations include

■ Five recommendations that address the need for increased awareness of family 

caregiving

■ Five recommendations for increased emphasis on integrating the caregiver into 

processes and systems from which they have been traditionally excluded

■ Nine recommendations for increasing access to services and supports to assist 

family caregivers

■ Four recommendations to increase financial and workplace protections for 

caregivers

■ Three recommendations to drive better and more consistent research and data 

collection to assist in the development and dissemination of systemic policies and 

interventions that can help family caregivers in meaningful ways

Each of the 26 recommendations is supported by a 100-250 word rationale statement 

that explains why the council believes the recommendation, if implemented widely, can 

positively impact family caregivers. These statements were developed by members

of the council during a series of sub-committee meetings. The council agreed that

the recommendations should be further illustrated with the voices and stories of 

real caregivers. The National Alliance for Caregiving (NAC) identified and interviewed

26 diverse caregivers representing a range of caregiving situations and needs

Their voices are featured throughout this report as a series of section dividers that 

personalize and underscore the recommendations, while emphasizing the need for 

action. Most stories include a hyperlink to a video of the actual caregiver intervie

The recommendations are the first step to developing a national strategy that will drive 

increased recognition and support for family caregivers. The recommendations will

provide the foundation of the strategy, which will also include details about specific 

actions and timelines for the advancement of the recommendations. The strategy

will outline critical actions that can be taken at the federal and state levels, by local 
RAISE Family Caregivers Act Initial Report To Congress Page 7

communities, philanthropic organizations, and educational bodies, as well as health care 

and LTSS providers, and others to better support family caregivers in ways that reflect 

their diverse needs. The strategy will focus on areas such as person- and family-centered

care; assessment and service planning; information, education, and training supports; 

respite options; and financial and workplace security issues. The strategy will also provide

a roadmap for the nation to strengthen its support and recognition of the critical role family 

caregivers of all ages play in health care and long-term support systems

As the nation considers how to address inequities in communities across the nation 

and rebuild the economy in the wake of a worldwide pandemic, the needs of family 

caregivers must be considered. The nation’s millions of family caregivers give selflessly

so others can live meaningful lives with dignity and independence. Their contributions

to the well-being of others and the nation’s economy can come at great personal cost 

to themselves, their families, their finances, and their health

The release of this report is an initial and critical step in helping family caregivers 

move toward a better future. In this future, as they are integrated into existing systems

and policies, family caregivers will have a culturally sensitive, flexible, and affordable 

system of supports that meet their needs and support them in meaningful ways

They will be recognized for their contributions and will recognize their own efforts 

as part of a formal activity. They will receive the assistance they need to perform

their tasks, whether it is education, advice, or practical help. They will be included

in key decisions, including policy decisions, about family caregiving. They will

receive support, whether financial or practical, so they can choose to continue to be 

caregivers. And perhaps most importantly, as the true experts in family caregiving, they

will be engaged in all efforts to assist other caregivers who are just starting out

The council recognizes that achieving this ambitious vision will take time. The field of

caregiving is so diverse that there are few simple solutions. The challenges to ensuring

family caregivers are supported, so that they, in turn, can assist others are significant

Working with ACL and its partners, the council is committed to surmounting every 

obstacle and creating a better future for all caregivers of older adults and people of all 

ages with disabilities

The nation’s millions of family caregivers and the people they support and assist 

deserve nothing less
RAISE Family Caregivers Act Initial Report To Congress Page 8

Why Recognizing Family Caregivers is Critical

It is no accident that the first word of the RAISE Family Caregivers Act acronym is 

“recognize.” Across the nation, millions of parents, partners, spouses, adult and minor

children, friends, and neighbors provide billions of dollars in unpaid assistance and support 

each year to individuals of all ages with chronic or other health conditions, disabilities, and 

functional limitations. Their tremendous sacrifices of time, energy, and financial support

enable people receiving support to maintain their independence, dignity, and quality of life

Yet, until recently, family caregivers have gone largely unrecognized in the community, in 

social service and health care settings, and even within families

To support the council, 26 caregivers from across the nation shared their personal 

stories with National Alliance for Caregiving (NAC). The recorded interviews are

available on the ACL YouTube channel. Throughout this report, they appear as brief

sketches to highlight the diverse ways that caregivers support their family members, 

and how that support, in turn, shapes the life of the caregiver. The stories are 

testament to the complex and demanding responsibilities that caregivers take on, often 

with no training and little formal recognition or acknowledgement

Too often, the public—and even professionals—do not fully understand the role 

families play in helping people with disabilities maximize independence. They

underestimate its complexity, the time and energy required, and the benefits of 

support. Debbi, who lives in Minnesota, is an example of a caregiver who has learned

“on the job” how to advocate for her son while also educating providers about her role 

as a caregiver. Her efforts underscore how increased understanding and decreased

bias can pave the way for a more holistic approach to connecting caregivers and 

people with disabilities with the services and supports they need. For more, refer to

Recommendation 1.1 and Recommendation 3

When Debbi’s son was born premature and bleeding in his brain, the 

doctors gave him two weeks to live. Debbi has now been caring for 

him, along with the rest of her family, for 27 years.

Debbi is not a stranger to hardship. Her husband was a career 

Marine and was often gone when their children were young. 

Her family has experienced racial prejudice and harassment 

because of her son’s disability, resulting in neighbors turning the 

sprinklers on her son’s nurses or calling the police to get their cars 

ticketed. A past employer discriminated against her and spoke 

openly to colleagues stating that the time she needed to take off for family medical leave was 

problematic. She had frequently encountered doctors who judged her based on certain biases 

and dismissed her concerns.
RAISE Family Caregivers Act Initial Report To Congress Page 9

Her son required 24/7 nursing, and it was difficult to find ethical and trained nurses. Sometimes 

he was harmed through negligence, causing more acute hospitalizations. Debbi has had to fight 

constantly to get insurance to cover his needs and keep him stable. Once, while he was in brain 

surgery, Debbi had to stand in the parent surgery waiting room and call an attorney because 

insurance would not cover the cost of the procedure he was receiving at that very moment.

Before her son was born, Debbi had experienced some serious health problems with her other 

children, which turned out to be a blessing in disguise. When her oldest child was sick, Debbi 

found an extremely supportive pediatrician/physician team. These doctors stuck with Debbi for 

a long time and took on her younger son’s case when he was born. They got her the training 

and resources she needed to be a caregiver, and they taught her to be an advocate. 

Family caregivers are often critical to ensuring that people who need assistance 

receive high quality care. However, for this to happen, it is important for providers

to assess the caregiver’s needs, their concerns, and their comfort level with specific 

tasks. Les lives in Washington State. His story illustrates the value of culturall

sensitive assessments to determine which services and supports will best enable 

people to balance the responsibilities of caregiving with addressing their own needs

For more, refer to Recommendation 2.

Now in their 80s, Les and his wife have been together since 

they were 16 years old. In 2014, his wife began having cognitive 

impairments and, through several tests, it was determined that she 

had Alzheimer’s disease. Her diagnosis was caught early. Over time, 

as her cognitive function declined and she began forgetting how to 

make coffee and needing some help with grooming and dressing, 

Les felt he couldn’t leave her at home alone anymore, he realized he 

was becoming a 24-hour-a-day caregiver. 

He and his wife ran into an issue Les says he has heard about from countless caregivers: 

independence versus safety. Les felt the need to protect his wife while she wanted to maintain 

her independence; these competing priorities continue to be a struggle.

Les feels cognitive assessments should be a routine part of visits of older patients to 

physicians, and physicians need to learn the correct questions to ask caregivers about the 

person for whom they are caring. Les and his wife have a fantastic support system in their 

community, from a local caregiver support group for those with cognitive impairments, to 

neighbors and congregation members who spend time with her going on walks, doing puzzles, 

and bringing them wonderful meals. It was through this network that Les has been able to 

learn about problems he may face as a caregiver and how to deal with them. By a friend’s 

recommendation, he found a trained companion for his wife, whom she gets along with, 

providing care for Julie while allowing him respite and time to run errands.
RAISE Family Caregivers Act Initial Report To Congress Page 10

Helping families maintain their financial health is a core element of maintaining the 

caregivers’ well-being and is critical to meeting the overall goals of the person 

receiving support. As a caregiver who left her career at a young age, Jennifer M., wh

lives in Florida, is an example of a caregiver at greater risk of impoverishment later in 

life. Her story demonstrates how, without early identification and assistance, family

caregivers can easily spend down their own resources, leaving them at significant 

financial risk later in their own lives. For more, refer to Recommendation 1.3 an

Recommendation 4.

Jennifer M. is a caregiver for her younger brother, who was wounded 

in Iraq in 2005, and her mother, who suffered a stroke in 2007. 

Jennifer feels that early intervention for caregivers is important 

because it can help alleviate some of the negative impacts, both 

physical and mental, of caregiving. The longer anxiety and stress 

build unchecked, the greater the negative long-lasting physical 

impacts. Jennifer M. feels health care providers should create 

care plans for caregivers, not just for care receivers. Learning the 

importance of self-care at the beginning of someone’s caregiving journey will enhance their 

overall resiliency and longevity. 

Jennifer M. left her career at a young age. During that time, she couldn’t save for retirement or 

contribute to Social Security and, because she is not the spouse of the people she supports, she 

didn’t have health care benefits. Jennifer would have benefited from early access to financial 

and legal planning tools. Jennifer M. believes people aren’t saving to become a caregiver, so 

when they do, they are making great financial sacrifices. Personally, her caregiving journey has 

cost her over $750,000 from medical, travel, respite, and childcare expenses, as well as a lack 

of income. 

As a participant in VA’s Program of Comprehensive Assistance for Family Caregivers, Jennifer 

M. received a stipend, access to mental health care, and respite care. These resources were 

valuable to her; however, she wishes the respite care was provided directly from the VA, and 

not a third-party vendor that added to the complexity of receiving the benefit. Additionally, the 

respite care providers often weren’t familiar with military conditions resulting from war, such 

as traumatic brain injuries which occurred during bombings. This required Jennifer’s brother to 

re-tell his story over and over, which could be emotionally draining. She feels most respite care 

providers are prepared to care for older patients, not someone younger like her brother. 

Jennifer would like policymakers to understand that every caregiver and person receiving 

support is unique; solutions and services don’t work the same in every situation. We need 

programs that offer one-on-one social support to identify and provide what a caregiver needs 

and support them in learning how to ask for and accept help.
RAISE Family Caregivers Act Initial Report To Congress Page 11

Caregiving youth, like Nayma, often put their own lives on hold to support family 

members, but they frequently go unrecognized. As a sibling caregiver, she often

misses time at work to perform caregiving tasks for both of her siblings and to support 

her parents. The adoption of policies that increase federal, state, and local recognition

of caregivers, including sibling caregivers, and that offer flexible employee-centered 

workplace policies and practices that support work/life balance are just two examples 

of supports that can assist younger caregivers. For more, refer to Recommendation

1.4 and Recommendation 4

While Nayma’s siblings live with their parents, Nayma is the backbone 

of her siblings’ care team. Their parents came to the United States 

from Mexico as adults and have faced difficulties overcoming the 

language barrier. Nayma’s past, present, and future are shaped by her 

role as a caregiver, yet her contribution is often discounted. 

Her brother was diagnosed with autism spectrum disorder (ASD) 

when he was three years old. He couldn’t speak until he was six 

years old. Before then, Nayma was the only person in the family who 

could understand what he was trying to convey. Nayma’s brother is now twenty-four years old 

and has significant support needs to maintain his quality of life. He has depression and takes 

medication, which is a dynamic Nayma struggles to navigate. Her sister is fourteen years old 

and was only recently diagnosed with ASD. Her trouble with social skills, such as keeping 

appropriate distance from others around her, has made it difficult for Nayma’s sister to make 

friends. Her sister relies on Nayma to help her handle the challenges of being a teenager while 

also living with an intellectual disability. 

As a millennial, Nayma recently entered the workforce. However, Nayma’s part-time job 

didn’t qualify her for paid sick leave or paid family and medical leave benefits to support her 

caregiving responsibilities. Nayma’s caregiving situation became even more difficult when her 

mother became sick and had to be hospitalized and put on bed rest, preventing her from being 

able to work. Like Nayma, Nayma’s father didn’t have any paid leave benefits available to him 

and was expected to continue to go into work in order to bring home a paycheck to help support 

his family. Nayma has no other family in the United States to help support her parents and 

siblings. Ultimately, a tremendous amount of responsibility has fallen on Nayma’s shoulders. 

Nayma walks a fine line as she is expected to be a sister, a daughter, a caregiver, and the family 

communicator. She agonizes over what is going to happen when her parents are gone—Nayma 

knows she will be her siblings’ caregiver for life.
RAISE Family Caregivers Act Initial Report To Congress Page 12

Young adult caregivers, like Autumn, are often overlooked by medical providers. Often,

caregiving education materials and supports do not apply to their age demographic 

and needs. Autumn’s story highlights the value of adopting policies that include family

caregivers of all ages in the care team, and increasing access to culturally appropriate 

services and supports. For more, refer to Recommendation 2.1 and Recommendation 

Autumn was 32 when her mother was diagnosed with a progressive 

neurodegenerative disease. As the only child of a single mother, 

Autumn knew she would be her mother’s caregiver one day, but 

neither she nor her mother expected that day to be when her mother 

was only 59. As her mother’s condition worsened, she moved her 

into Autumn’s studio apartment. Eventually, Autumn moved them 

both into an apartment that could better accommodate their needs. 

Autumn was able to get her mother approved for Adult Day 

Care Center Services provided by the Department on Aging in 

Washington, D.C. These services were essential in allowing her to keep her mother at home 

while Autumn continued working full time. She was able to drop her mother off three times 

a week at the adult day care center. Autumn paid for an in-home aide for the other two days 

of the week. Autumn feels that these services saved her sanity, but she admits her stress 

continued to increase exponentially as her mother needed increasing levels of care. She often 

felt she was on a hamster wheel, as she constantly needed to reassess and ramp up services as 

her mother’s condition continued to decline. She recalls countless sleepless nights, tears, and 

constant grief over slowly losing her mother, all while continuing to try to provide the best care 

possible. Additionally, the financial strain continued to grow, and she ultimately had to take out 

medical loans, which she is still paying off four years after her mother’s passing. 

Autumn wants our society to recognize and normalize the experience of younger caregivers. 

She wants policy leaders to recognize the need for more funding in the Aging Network to cover 

home based community services for the pre-Medicare and non-Medicaid population. She 

wants legislators to increase awareness of the challenges of caregivers and raise the country’s 

commitment to caregivers. Autumn says caregivers need to have access to support and those 

services need to be available in a timely manner – not weeks, months, or years.
RAISE Family Caregivers Act Initial Report To Congress Page 13

I. Background & Introduction 

“As we know, there is a shortage of caregivers of all kinds and the 

modern family structure does not have a homemaker to take on that role. 

We need to stop looking at caregiving as a family role only and recognize the 

appropriate intervention that will address the problem.”

-Response to the ACL RFI

Every day, in all communities across the nation, millions of family members and friends 

set aside their immediate and long-term needs to support parents, grandparents, 

spouses, partners, siblings, children and adults with disabilities, and others who 

require their assistance to maintain independence, health, and quality of life 

(AARP and National Alliance for Caregiving, 2020). These family caregivers provide

uncompensated assistance each year to others with everything from household 

chores to providing assistance with activities of daily living (ADLs), such as eating, 

bathing, and dressing; instrumental activities of daily living (IADLs), such as shopping, 

managing finances or handling transportation; or medical/nursing tasks, such as 

managing medicines, wound care, or preparing special diets (Reinhard, Feinberg, 

Houser, Choula, & Evans, 2019). They also supervise paid workers, coordinate

services, and advocate for the people they support

The exact figures vary depending on the research source and methodology. This

disparity reflects the fact that family caregiving has many manifestations and 

definitions. It is so deeply entwined with daily life that it is notoriously difficult to count

and measure. Some people are not even aware that their efforts on behalf of others

count as “caregiving.” Nonetheless, researchers estimate, based on 2017 survey data,

that at least 26.4 million people serve as family caregivers each week (Freedman 

& Wolff, 2020). That number rises to 53 million people (1 in 5 Americans) when

researchers seek information about caregiving over the past year (AARP and National 

Alliance for Caregiving, 2020). Almost 40% of these people identify as racial and/or

ethnic minorities (AARP and National Alliance for Caregiving, 2020). Other researchers

have used the Department of Labor’s American Time Use Survey to estimate that 

caregivers provide 30 billion hours of uncompensated care each year (Chari, 

Engberg, Ray, & Mehrotra, 2015)

These figures do not include the populations of caregivers that are often missed in 

prevalence research. For example, according to the American Community Surve

(ACS), 2.3 million grandparents are responsible for the basic needs of one or more 

grandchildren under age 18 living with them (United States Census Bureau, 2019)

Meanwhile, approximately 3.4 million child caregivers under age 18 are serving as 

secondary caregivers for an adult. Information on the number of children who are

primary caregivers to other children or their parents or grandparents is incomplete, but 
RAISE Family Caregivers Act Initial Report To Congress Page 14

it could be as many as 5.4 million children (AARP and National Alliance for 

Caregiving, 2020)

There is a growing recognition in the U.S. of the need to support the paid caregivin

workforce—the direct support professionals, many of whom are women of color who 

provide long-term services and supports through Medicaid or private agencies. Closely

linked to this is the need to also recognize, assist, include, support, and engage family 

caregivers. Just like professional caregivers, they are part of the engine that drives

this nation—just as roads, bridges, and information technology infrastructure connect 

people to work and school, so too do caregivers, both paid and unpaid, connect 

people who need support to lives of independence and meaning

Family caregivers support a broad range of people and needs across a range of 

settings. They play an integral part in helping older adults maintain quality of life and

independence. They support children and adults with physical, sensory, cognitive,

intellectual, developmental, and psychiatric disabilities in maintaining their dignity 

and autonomy as they navigate social structures that can limit opportunities for full 

community inclusion. They support injured veterans returning from new wars and those

who bear the physical and mental scars of decades-old battles

The vast majority of caregivers take on their responsibilities at short notice and with no 

training, and provide their assistance with little public acknowledgement. They work

relentlessly, sometimes for years without breaks of any kind. In so doing, they may

neglect their own health, putting them at higher risk for a range of conditions, including 

heart disease, diabetes, anxiety, and depression

Because their efforts are often intensely time consuming, some sacrifice their financial 

security by reducing work hours or leaving the work force entirely. This increases

the likelihood—especially among women—of living in poverty as their age advances

These challenges increase for people in underserved populations who are already at 

significant risk of health disparities, such as communities of color, rural, and frontier 

communities, and LGBTQ+ populations (American Psychological Association, 2011)

Caregivers who live with disabilities experience all of these factors in addition to the 

challenges associated with living with a disability

There are multiple names for these individuals: the most common is “family caregiver,” 

with the word “family” used to underscore the emotional connection between the two 

parties and to remind us that these caregivers differ from those who provide care to 

others in the course of their employment. At the same time, some disability advocates

may use the terms “care partner” to emphasize the equal standing between the person 

with a disability and the person helping to facilitate their independence and autonomy

Among some families, depending on cultural background, the word “caregiver” is never 
RAISE Family Caregivers Act Initial Report To Congress Page 15

even used. In many cultures, assisting older adults and people with disabilities is seen

as “just what family does”—regardless of the complexity, stress, or financial cost

No matter what we call them, these millions of people who support others share 

common life experiences. First, there is a significant personal relationship or

connection between caregivers and the people receiving support. Some caregivers

provide assistance out of a wellspring of love and concern. Others provide care

due to cultural traditions or family expectations. Often, some combination of these

factors shapes the experience of family caregivers. Second, they provide support

so that family members and close friends can maintain their independence, dignity, 

engagement, and quality of life. They often provide this support without a formal

assessment of their needs, with little training, no assistance, and little recognition. As

a result, their contributions to the well-being of others come at significant cost to their 

own physical, mental, emotional, and financial well-being

Against a backdrop of increasing prevalence of family caregiving, the nature of 

family caregiving is becoming ever more complex as it extends to more medical and 

administrative tasks and care coordination activities than ever before. Finally, because

they often are overlooked and have few consistent supports, the experience of being a 

family caregiver, no matter how emotionally rewarding, can leave caregivers financially, 

emotionally, and physically depleted and socially isolated

How this Report Defines “Family,” “Family Caregiver,” and 

“Person Receiving Support”

In this report and throughout the council’s work, the word “family” is used broadly 

to denote those with biological or legal connections and families of choice. It also

acknowledges the fact that “family caregiver” is not the same as “next of kin.”

The person receiving support has the right to decide and designate who their 

preferred family caregiver is—it should never be decided by social services or 

medical professionals

Because every family is unique, this makes it difficult to definitively define “family 

caregiving.” The Recognize, Assist, Include, Support, and Engage (RAISE) Family

Caregivers Act of 2017 defines the term “family caregiver” as: 

“An adult family member or other individual who has a significant 

relationship with, and who provides a broad range of assistance to, an 

individual with a chronic or other health condition, disability, or functional 

limitation” (RAISE Family Caregivers Act of 2017, 2018).
RAISE Family Caregivers Act Initial Report To Congress Page 16

In this report and the ensuing work of the RAISE Family Caregiving Advisory 

Council (the council) the term “family caregiver” is expanded to its broadest and 

most inclusive sense to encompass:

“All unpaid individuals of all ages who are caring for individuals with 

disabilities, chronic or other health conditions, and/or functional limitations.”

This term includes family members, partners, friends, kinship and grandfamily 

caregivers, and the untold millions of youth across the nation who care for 

family members, regardless of the type of assistance needed. It includes parttime caregivers and full-time caregivers. While it is used as a singular noun i

this report, the council also recognizes that in some families multiple individuals 

serve in this role. It is important to note that some federal programs define “family

caregiver” in statute. The statute definition may not be the same as the definition

used in this report

Terms also vary for the people receiving support. In many cases, they are referred

to as “family members.” This is especially true in the disability community. Th

council determined that to differentiate between family members providing 

support and those who are receiving support, the term “person receiving 

support” would be used

The New Landscape of Family Caregiving

In previous generations, women who were not in the labor force—typically daughters 

or daughters-in-law—provided caregiving to children, people with disabilities, or adults 

with functional or cognitive support needs associated with aging (Wolff & Kasper, 2006)

Even though many of these caregivers took on tasks associated with nursing (e.g.

wound care and administering medicines), there was a perception that caregiving mostly 

involved helping with activities of daily living—bathing, toileting, dressing, and eating

“Most all of the images of caregivers show a late middle aged adult caring 

for an elderly adult. The image of the disabled adult child being cared 

for by the parent are more rare (sic). And, rarer still, the image of the older adult 

caring for the younger adult child with mental health diagnosis.”

-Response to the ACL RFI

Today we recognize that family caregivers do so much more. They perform a wide

variety of time-consuming tasks from interacting with medical and service providers, to 

making appointments, to navigating an increasingly complex landscape of insurance 

and health care coverage requirements. Fifty-eight percent of family caregivers help

manage the finances of the person receiving support, and more than half serve as 

an advocate either at the clinical level or with community services and government 
RAISE Family Caregivers Act Initial Report To Congress Page 17

agencies (AARP and National Alliance for Caregiving, 2020). In addition, they are

increasingly providing ever-more complex health and medical care at home (including 

pain management), navigating complicated and fragmented health care and systems 

of long-term services and supports (LTSS), and serving as surrogate decision makers 

(National Academies of Sciences, Engineering, and Medicine, 2016). The majority

of caregivers—especially those who are low-wage workers—do all of this without 

adequate paid leave or job protections, forcing them to choose between supporting 

others and earning a paycheck (Mudrazija & Johnson, 2020)

While there are commonalities across caregiving, it is important to consider that 

caregivers and the individuals they support are not a homogenous group. No two

caregivers are the same, just as no two people who receive support are the same. As

a result, the strategies to support caregivers have to be informed first by supporting 

the caregiver as a unique person

More People Than Ever Before Need Caregivers

The need for family caregivers rises every day. By 2040, there will be more than 80.

million people over the age of 65, more than twice as many as there were in 2000 

(Administration for Community Living, 2021). As people are living longer, they are more

likely to acquire multiple chronic conditions. For example, while there are currently an

estimated 5 million people (1.6% of the U.S. population) living with Alzheimer’s disea

and related dementias (ADRD) in the United States, the prevalence is expected to more 

than double (to 3.3% or 13.9 million people) by 2060 (Matthews, et al., 2019). Car

for a person with Alzheimer’s or a related dementia can be particularly intensive. In

2020, caregivers of people with dementia provided an average of 1,369 hours of care 

per caregiver per year, with more than half of those caregiving providing care for more 

than four years (Alzheimer’s Association, 2021). As a result, more family caregivers

than ever before will be needed to help these individuals maintain their health, wellbeing, and quality of life (United States Census Bureau, 2018)

Meanwhile, the populations of people of all ages with disabilities and functional 

limitations is also growing. According to the 2018 ACS, 40.6 million Americans (12

of the population of children and adults) currently have a disability or impairment 

(United States Census Bureau, 2018). The vast majority of individuals needing

assistance with things like transportation, case management, homemaker services, 

and nursing care, rely on unpaid support from family and friends first. In some cases,

this support is supplemented by Medicaid-funded LTSS for those who are eligible. Of

the approximately 10.9 million individuals with LTSS needs living in the community and

1.8 million nursing home residents, 92% receive assistance from family caregivers, and

only 13% receive any form of paid assistance (Kaye, Harrington, & LaPlante, 2010)
RAISE Family Caregivers Act Initial Report To Congress Page 18

Currently, there is little national data about the prevalence and needs of people with 

intellectual and developmental disabilities (IDD). According to the Wingspread Report,

there are more than 4.7 million individuals who have IDD in the U.S. “More than 

percent of these citizens live in their communities without formal disability services 

and rely on their families for varying levels of support” (Hecht, Reynolds, Agosta, 

McGinley, & Moseley, 2011). In fact, the most recent report of Residential Information

Systems Project found that only 17% of individuals with IDD receive formal services 

from the IDD service system, and 60% of individuals receiving services live at home with 

family (Larson, et al., 2020). In 2019, 60% of family caregivers of people with IDD ar

themselves over the age of 60 (Administration for Community Living, 2021)

The population of people with IDD is expected to grow as adults with IDD are living 

longer at the same time that diagnosis rates among children are increasing (Auerbach, 

Perry, & Chafouleas, 2019). Many of these individuals will require assistance from

friends and family for their entire lives (Hecht, Reynolds, Agosta, McGinley, & Moseley, 

2011). A growing number of adults with IDD live at home with aging caregiver

Approximately 24% of adults with IDD living at home reside with family caregivers age 

60 years and older. Another 35% reside with caregivers between the ages of 41 to 59

years (Braddock, Hemp, Tanis, Wu, & Haffer, 2017). Those family caregivers will

need additional assistance and supports if they are to continue caregiving successfully 

over time

“At present, family caregivers of older adults with lifelong disabilities (Down 

syndrome, autism, cerebral palsy, intellectual disabilities, etc.) face a daunting obstacle: 

time. They are aging beyond their capacity to care for their aging children.” 

-Response to the ACL RFI

In recent decades, world events have also contributed to the increased need for 

family caregivers. Since 2001, the number of veterans with disabilities has increased

significantly. In 2019 there were an estimated 4.7 million veterans with a serviceconnected disability (United States Bureau of Labor Statistics, 2020). The post-9/

generation of injured veterans, those who served after September 2001, typically 

have complex care needs. Fifteen percent of post-9/11 veterans have paralysis or

spinal cord injury compared to 6.3% of veterans of other generations and 6.8% o

the general population. Veterans receiving support are also more likely than members

of the general population to have a disability that impairs physical movement, posttraumatic stress disorder, major depressive disorder, substance abuse disorder, and 

traumatic brain injury (Ramchand, et al., 2014). Because post-9/11 veterans are ofte

younger than other people receiving support, they will require caregiving assistance 

from parents, siblings, spouses, and children for decades into the future (Ramchand, 

et al., 2014
RAISE Family Caregivers Act Initial Report To Congress Page 19

In addition, as noted, millions of grandparents and extended families across the 

nation step up each year to care for children who cannot remain with their parents 

due to factors such as substance use, incarceration, death, and financial instability

A significant portion of those children have been exposed to trauma. As a result, they

often need a combination of education, counseling, health care, and other services 

and supports in order to learn and develop. Their kin and grandparent caregivers also

require support, assistance, and counseling. Many of the grandparents raising these

children have disabilities, and as they age, their own need for caregiving will increase 

(Generations United, 2018)

Finally, as the effects of the COVID-19 pandemic continue, more people than ever 

before are finding themselves becoming family caregivers with little preparation, 

training, or support. This is due to a number of factors including the absence of

in-person educational options, social isolation, reluctance to enter or remain in 

congregate care, and the still unknown complications related to post-COVID-19 

conditions and chronic COVID-19. As with other factors related to the pandemic, the

effect on women, particularly women of color, has been profound. According to the

U.S Bureau of Labor Statistics, women accounted for the majority of people leaving

the labor force in September of 2020 (United States Bureau of Labor Statistics, 2021)

Compound and Multiple Caregiving

It is important to note that not all caregivers support just one individual. Twenty-four

percent of caregivers provide care to more than one person at a time (AARP and 

National Alliance for Caregiving, 2020). This is referred to as “compound caregiving”

and is often seen with “sandwich generation” caregivers (the estimated 47% of middle 

aged adults who are caring for children and aging parents at the same time) and 

caregivers of people with IDD who also take on caregiving responsibilities for a partner, 

parent, or other child (Taylor, Parker, Patten, & Motel, 2013)

While most caregiving discussions focus on one primary caregiver, in reality, many families 

have multiple caregivers who collaborate to create a caregiving safety net that ensures 

the individual has the support he or she needs to remain independent for as long as 

possible. This can include a combination of family caregiving from multiple individuals

plus assistance from direct support professionals and, in some circumstances, help 

from volunteers (for example volunteer respite care). This “multiple caregiving” model is

particularly associated with intensive caregiving situations, such as dementia care. People

with dementia living in the community are more likely than other older adults to rely on 

multiple unpaid caregivers (often family members); a third of older adults with dementia rely 

on three or more unpaid caregivers (Alzheimer’s Association, 2021)
RAISE Family Caregivers Act Initial Report To Congress Page 20

Out of the Shadows

Because family caregiving typically takes place away from the public arena—within the 

heart of the personal home (i.e., bedrooms, bathrooms, kitchens), and during treasure

family experiences like vacations, parties, and weddings, or during critical health care 

experiences when the family caregiver is the sole care provider in a clinic waiting room, 

emergency department, or hospital room—the needs of family caregivers are often not 

recognized (National Academies of Sciences, Engineering, and Medicine, 2016). Family

caregiving in America has traditionally existed off-stage, away from the spotlight

“How do we create a world where caregiving is central to who we are, as opposed 

to something that diverts us or is a sideline of our real lives?”

-Carol Zernial, M.A., caregiver & Family Caregiving Advisory Council member

A consequence of this is that some people who support family members do not see 

themselves as caregivers. This is especially prevalent in ethnically and culturally diverse

communities where people are more likely to identify as a family member “doing what 

families do.” A lack of awareness of caregiving can make it difficult for agencies that

provide services to family caregivers to find and reach those individuals. It also means

that people do not seek out services that could assist them. This situation may hamper

data collection and measurement efforts. For example, if the number of caregivers is

unknown, it is impossible for providers to assess their needs and for economists to 

measure the economic value of their contributions to society

This challenge is further compounded by the fact there are few depictions of family 

caregiving in popular print and media culture. All too often, news media limits coverage

to stand-alone awareness-raising stories driven by advocacy organizations (e.g.

National Family Caregivers Month, which takes place during November). Despite the

fact that family caregiving is a significant public health issue, caregiver voices are not 

always part of public discourse; they are sometimes ignored by health care providers 

and their contributions can be overlooked or discounted by policy makers (National 

Academies of Sciences, Engineering, and Medicine, 2016)

The current national conversation on care and caregiving as part of the national 

infrastructure—with input from key stakeholder organizations (including faith-based 

communities) and the media, with similar messages and themes—is a good starting 

point for increased public awareness about the forthcoming National Family Caregiving 

Strategy. But there is a long way to go. Caregivers often describe the work o

caregiving as, while personally fulfilling, an exhausting and isolating task. Some even

lack awareness of the limited supports and resources available to assist them. That

is unfortunate because without support, the caregiving role often takes a significant 

toll and can lead to increased levels of stress, depression, physical and mental health 

impact, isolation, family strain, and financial and legal challenges
RAISE Family Caregivers Act Initial Report To Congress Page 21

Whether advocating for special education services, navigating an increasingly complex 

and fragmented health care system, or providing complex medical care, family caregivers 

benefit when providers and systems solicit input about their needs and take action 

based on that information. Inclusion in person-centered planning, with the agreement

of the care recipient, can ensure that the needs of both the caregiver and the person 

receiving support are understood and considered. Education, training, and support

services have the potential to enable them to be more effective in their caregiving and 

potentially even reduce the cost of care for the person receiving support

“Education is needed for all aspects of caregiving. We caregivers are expected to 

perform a greater and greater variety of medical procedures that we do not have 

the training or knowledge to perform.”

-Response to the ACL RFI

Reliable and current information from trusted sources on meeting the challenges 

their unique caregiver situations present can reduce burnout and stress. Access

to affordable, quality, and flexible options for respite care that allows them time to 

look after their own well-being, can enable caregivers to be more confident and 

continue to provide care for longer. Financial and employment assistance, if needed,

can help them balance the fiscal and time-based costs of caregiving with the other 

responsibilities and commitments in their lives (National Academies of Sciences, 

Engineering, and Medicine, 2016)

Recognizing and Supporting Family Caregiving is Vital 

Families and family caregivers are the safety net for millions of Americans, yet they are 

often the least supported member of the network. Successful outcomes from family

caregiving requires that caregivers are supported by training, financial assistance, 

greater inclusion in health care and social services systems, and opportunities to take 

a meaningful break

These basic caregiving supports are more important today than ever. Just at a time when

caregiving is becoming more complex, there are fewer people available to provide family 

care. Due to changes in family structures and the increasing prevalence of families where

both adults participate in the workforce, the share of families with a potential stay-athome caregiver—as was the case in previous generations—has sharply declined (Veghte, 

Bradley, Cohen, & Hartmann, 2019). That means a wider range of family members of all

ages are now taking on caregiving responsibilities, and they must balance those duties 

with competing demands for their time and energy. In many families, multiple part-time

caregivers are coordinating their efforts to support one person

While families across the nation provide caregiving support to family members, 

the burden of caregiving disproportionally affects families of color. Most studies
RAISE Family Caregivers Act Initial Report To Congress Page 22

indicate that Black and African American older adults are about twice as likely to 

have Alzheimer’s or other dementias as older whites. Some studies indicate Hispanic

older adults are about 1.5 times as likely to have Alzheimer’s or other dementias

as compared to older whites (Alzheimer’s Association, 2021). These individuals will

require caregiving support from family members, and as the disease progresses those 

caregiving responsibilities typically grow increasingly time intensive. “Caregivers of

people with dementia report providing 27 hours more care per month on average 

(92 hours versus 65 hours) than caregivers of people without dementia” (Alzheimer’s 

Association, 2021). As a result of their caregiving responsibilities, caregivers of people

with Alzheimer’s disease or other dementias who are employed are more likely than 

caregivers of other people to move from full-time to part-time work, take a leave of 

absence, lose their benefits, retire early, and/or “give up work entirely” (Alzheimer’s 

Association, 2021)

These significant disparities highlight the necessity of culturally sensitive services 

and supports, including caregiver assessments that uncover the unique needs, 

preferences, and comfort level of each individual caregiver within the context of his 

or her family. Of particular note is the finding that caregivers of color, particularly

African American and Hispanic caregivers, often report “feeling invisible” in medical 

settings. Even though may be knowledgeable about their family member’s history and

symptoms, they frequently experience a “poor response or dismissal,” when trying to 

communicate on behalf of a family member (Singleton, 2020)

Finally, the COVID-19 pandemic has focused a spotlight on the needs of family 

caregivers, the logistical complexities they face, and the prevalence of health 

disparities in underserved populations. According to the CDC, members of diverse

populations are “at increased risk of getting sick, having more severe illness, and 

dying from COVID-19.” They are also more likely to be negatively impacted by the

“economic, social, and secondary health consequences of COVID-19 mitigation 

strategies such as social distancing” (Centers for Disease Control and Prevention, 

2020). For example, to reduce the risk of infection, many health care providers

responded in some ways that impacted individuals that rely on family caregivers

Limiting visitors within health care delivery settings and a shortage of adequate 

personal protective equipment also affected family caregivers in complex ways

The pandemic has also underscored inequities in access to technology necessary 

to facilitate appointments. It has also increased caregiver burden and stress, most

notably through the unrelenting nature of pandemic caregiving, potentially causing for 

some, and greater risk of burnout. Just as the availability of vaccines gave people a

“dose of hope,” so too does the council hope that the recommendations contained in 

this report and the development of the National Family Caregiver Strategy can provide 

the millions of family caregivers across the nation with a dose of hope that more 

support and recognition for family caregivers will be forthcoming
RAISE Family Caregivers Act Initial Report To Congress Page 23

 “I would like to offer for any ‘decision maker’ to spend a day with me 

and my family and see what it truly takes to care for someone with 

significant impact of a disability. I think only then can we move forward 

with an actual picture of what we ... are up against.”

-Response to the ACL RFI

These combined forces are increasing the pressure on family caregivers in 

unprecedented ways. If left unaddressed, these pressures and the resulting effects

social isolation, burnout, financial impoverishment, ill-health—will negatively impact 

families for generations to come. Services and supports to assist caregivers must

be equitably available so that all caregivers can maintain their physical, mental, and 

financial health while supporting and assisting others now and into the future

Caregiving: A Force for Good

When caregiving is discussed publicly, it is often associated with terms such as 

“burden” and “caregiver stress.” While caregiving pressures are significant and

caregivers need support, education, and assistance, caregiving can be an immensely 

enriching experience and one that connects individuals across generations

In fact, several studies find that caregiving builds confidence and problem-solving 

skills and strengthens relationships. For example, a study of spouse caregivers found

that the time caregivers spent helping their spouse predicted positive affect; the more 

time they helped, the happier they felt (Poulin, et al., 2010). Caregivers also valu

the assurance of knowing their family member is receiving the support he or she 

needs (National Academies of Sciences, Engineering, and Medicine, 2016). Additional

advantages reported by caregivers include:

■ Spending meaningful time with the person receiving support

■ Strengthening intergenerational bonds

■ Knowing that a family member is receiving more holistic care that family 

caregivers provide

■ Increased self-confidence that comes with surmounting complex challenges 

(Mudrazija & Johnson, 2020)

■ Learning to become more compassionate and patient

The presence of these positive experiences can mitigate some of the challenges faced 

by family caregivers, however it does not fully erase those challenges. As the National

Academies Press noted, “these positive effects can co-exist with the negative impact 

of caregiving. Caregivers can simultaneously feel highly distressed and report that

they derive benefit from the caregiving experience” (National Academies of Sciences, 

Engineering, and Medicine, 2016)
RAISE Family Caregivers Act Initial Report To Congress Page 24

Day-to-Day Assistance to Millions

Family caregivers also benefit their fellow members of society. Millions of people are

able to live more independently, with dignity and self-determination, while experiencing 

a better quality of life thanks to family caregivers. Examples include:

■ Older adults and people with intellectual and developmental disabilities 

(IDD) who are affected by early onset Alzheimer’s disease and related 

dementias who require assistance with ADLs or IADLs. According to the

Alzheimer’s Association, nearly half of all caregivers of older adults are supporting 

an individual with Alzheimer’s or another dementia (Alzheimer’s Association, 2021)

■ People of all ages living with chronic health conditions—such as cancer, 

diabetes, and arthritis—who may need assistance navigating complex health care 

systems, managing symptoms and medication side effects, and maintaining quality 

of life

■ Frail older adults who may need assistance with bathing, toileting, dressing, and 

eating, or getting to doctor’s appointments and managing multiple medicines

■ Adults and children with IDD who may require practical assistance with ensuring 

that the individual’s basic needs and rights are respected and protected. They

also assist with access to and coordination of the supports needed for health, 

well-being, independence, and opportunities for community inclusion, integrated 

employment, and self-determination whether the individual is living with them or in 

their own home (Hecht, Reynolds, Agosta, McGinley, & Moseley, 2011). Parents

and other family members of individuals with IDD often provide medical, behavioral, 

financial, and other daily supports beyond what most families provide and they 

provide this assistance across the LifeCourse

■ Veterans with injuries or chronic conditions, including traumatic brain injuries, 

limb loss, and mental health issues like post-traumatic stress disorder (PTSD), who 

may benefit from care provided by individuals versed in military culture and caring 

for the unique needs of our nation’s veterans

■ Medically fragile children and adults who need round-the-clock care from a 

team of family caregivers and skilled nursing professionals working in close concert

■ Children in the full-time care of relatives such as grandparents or close family 

friends who may need special education, behavioral health services, and 

help to thrive despite previous adverse childhood experiences

■ People of all ages who reside in nursing homes, board and care, and assisted 

living facilities, and other residential care communities who rely on family 

caregivers for assistance to maintain their health, safety, welfare, and well-being
RAISE Family Caregivers Act Initial Report To Congress Page 25

 “The challenges and rewards of family caregiving are much more than any research 

study has ever captured. Families struggle, they look for help and support, they 

laugh, they cry. They do all of this for the family member that has the greatest 

need. Yet, the demands of work and the needs of other family members continue. 

Balancing all of the demands can be overwhelming.”

-Alan Stevens, Ph.D., family caregiver & Family Caregiving Advisory Council Co-chair

Society Benefits from Family Caregivers

Society as a whole benefits from the work of family caregivers. Numerous studies

have noted that the formal services of the system are not designed to replace family 

caregivers. Yet they are an essential component of a continuum of care that is

provided by family caregivers. In undertaking caregiving, unpaid friends and family

members are essential in supporting individuals with ongoing and long-term health 

and assistance needs. The services provided by family caregivers cannot be separated

from the services included within the nation’s LTSS system, based on eligibility

The estimates of the value of caregiving vary depending on how the value of 

caregiver’s time is calculated (Mudrazija & Johnson, 2020). Family caregivers of adults

with Alzheimer’s disease and related dementias provided an estimated $257 billion of 

unpaid care in 2020 (Alzheimer’s Association, 2021). Researchers at AARP estimate

that it would cost the nation $470 billion to replace all of the care across the lifespan 

and all conditions provided by family caregivers (Reinhard, Feinberg, Houser, Choula, & 

Evans, 2019). Meanwhile, using different data sources (the American Time Use Survey),

researchers estimate the economic value of caregiving just for older adults to be close 

to $522 billion (Chari, Engberg, Ray, & Mehrotra, 2015). In addition, grandparents save

the child welfare system billions of dollars each year by stepping up to become primary 

caregivers to their grandchildren instead of allowing them to be placed in the child 

welfare system (Generations United, 2018)

The availability of a family caregiver is also associated with fewer and shorter hospital 

stays and reduced home health care use for older adults. Several studies have found

that the availability of caregivers delays nursing home entry (Kelly, Wolfe, Gibson, & 

Feinberg, 2013)

The Costs of Failing to Support Family Caregivers

Policies and interventions that support family caregivers also have the potential to 

benefit society over time. Because long-term care is expensive and not covered by

Medicare, some people use Medicaid to fund their long-term care if they qualify

Enhancing caregiver supports and services that drive independence for older adults 

and people with disabilities is an important tool in managing federal long-term 

expenditures (National Academies of Sciences, Engineering, and Medicine, 2016). The

costs of failing to address caregiver needs are expected to increase as the number of 
RAISE Family Caregivers Act Initial Report To Congress Page 26

people across the lifecourse who require assistance increases. This is particularly true

in light of the growing population of older adults and the increasing need for caregivers 

to support people living with ADRD (Matthews, et al., 2019

Supporting family caregivers through education, assistance, and flexible workplace 

policies can have long-term financial benefits for the nation. Despite the benefits that

family caregivers bring, their efforts often come at significant personal and financial 

cost. Family caregivers also often have to choose between providing care to a person

receiving support and remaining in the workforce, saving for the future, or addressing 

their own basic needs. Helping caregivers flourish in their roles allows them to provide

care longer. This is important because the stress and physical demands of caregiving,

especially intensive forms of caregiving, such as dementia care, have been shown to 

have an impact on physical health (National Academies of Sciences, Engineering, and 

Medicine, 2016). In fact, a 2017 study of spouse caregivers found that decreased

caregiver well-being, especially fatigue, correlated with more emergency department 

visits and higher Medicare spending (Ankuda, et al., 2017

“Many families quit their jobs to care for family members, and lose not only the 

difference in income, but also the pay into Social Security.”

-Response to the ACL RFI

The importance of taking action now to ensure policies and services are in place to 

assist the family caregivers of those individuals cannot be overstated. The President’s

Build Back Better plan calls for opportunities to expand and train the direct care 

workforce to support these individuals—but paid care alone is not enough. Family

caregivers will continue to need to assist and support others. Recently proposed

changes to how the nation supports family caregivers have the potential, if passed, 

to create a national comprehensive paid family and medical leave program. This is

an important piece in supporting family caregivers, but they will also need education 

and training, services and supports like counseling and respite care, and increased 

ongoing recognition by society

Incremental Progress in Recognizing Family Caregivers

With the passage of the RAISE Family Caregivers Act, Congress took an important 

step in continuing more than four decades of legislative progress on behalf of family 

caregivers. In 1966, President Lyndon B. Johnson established what is now know

as the President’s Committee for People with Intellectual Disabilities (PCPID). This

committee advises the President on ways to improve the quality of life experienced by 

people with intellectual disabilities and their families. While the Great Society programs

of the 1960s did not include provisions for caregivers, by 1975 Congress had 

amended the Older Americans Act (OAA) to include funding for adult day care services

While the statute did not directly refer to adult day care as respite care for caregivers, 
RAISE Family Caregivers Act Initial Report To Congress Page 27

it laid the groundwork to providing caregivers complimentary and supplementary care 

options addressing respite and financial needs

In 1978, Congress clarified the use of adult day services as a form of family respite, 

placing it within a coordinated system of community long-term care services. This

legislation was significant because it formally established investments in the wellbeing of the family caregiver as a means of supporting the person receiving support

Additional amendments in the 1980s further solidified recognition—supported by 

research—of the significant positive impact the well-being and ability of caregivers 

can have on people living with Alzheimer’s disease and related dementias. Expansions

to Medicare and Medicaid in the 1980s continued the process of beginning to 

formally recognize the role of family caregivers. In 1981, family caregivers benefited

indirectly from the addition of Medicaid’s home and community-based services (HCBS) 

programs. The following year, Congress added a hospice benefit to Medicare that

specifically included respite care for caregivers

In 1990, Congress passed the Americans with Disabilities Act (ADA), a comprehensive 

law prohibiting discrimination against people with disabilities. The ADA also prohibits

discrimination against a caregiver based on “association with” an individual with a 

“disability” as defined by the ADA

This increasing recognition of caregivers continued through the 1990s with the 

inclusion in the OAA of training, counseling, and information services for caregivers, 

in addition to in-home respite care and expansion of eligibility limits. The 1993 Family

Caregiver Support Act (S.1072), for example, sought to amend the Social Security Act

to enable states to establish programs to support informal caregivers. Also in 1993,

the Federal Family and Medical Leave Act established worker rights of up to 12 weeks 

of unpaid, job-protected leave to care for oneself or certain family members: child, 

spouse, or parent. During that time, a number of states rolled out caregiver initiatives

offering such services as respite, information and resources, support groups, case 

management, and education and training programs

In June 1999, a landmark Supreme Court decision in Olmstead v. L.C., 527 U.S. 581

held that “unjustified segregation” of people with disabilities is against the law under 

the ADA. As a result, many states have expanded their HCBS systems as part of their

larger efforts to achieve Olmstead compliance

The establishment of the National Family Caregiver Support Program (NFCSP) in 

2000 marked a significant expansion in support for family caregivers by formally 

recognizing family caregivers and providing a range of services to allow them to help 

their family members remain independent for as long as possible. These services

include connecting caregivers to private and voluntary agencies that can assist them, 

counseling and training, and respite care options. Even more importantly, NFCSP
RAISE Family Caregivers Act Initial Report To Congress Page 28

funding is provided to every state, territory, and tribe, requiring the establishment of a 

basic set of services and supports available to family caregivers

That same year, the Developmental Disabilities Assistance and Bill of Rights Act of 

2000 (DD Act) stipulated that the 56 State DD councils include representation by 

people with disabilities and their caregivers, guardians, and/or parents paving the way 

for more family-centered community services, individualized supports, and other forms 

of assistance (Administration for Community Living, 2017)

In 2006, the Lifespan Respite Act expanded 

access to respite to people of all ages across 

the nation. It sought to increase availability of

respite options for family caregivers of children 

and adults with physical, cognitive, and 

intellectual disabilities

For further discussion on the 

NFCSP and the Lifespan Respite 

Program, refer to Section III, 

Existing Federal Approaches to 

Assist Caregivers.

In 2010, the Caregivers and Veterans Omnibus Health Services Act (PL 111-

163) directed the U.S. Department of Veterans affairs to establish a Program o

Comprehensive Assistance for Family Caregivers and a Program of General Caregiver 

Support Services, collectively referred to as VA’s Caregiver Support Program, thus 

establishing caregiver support in the nation’s largest integrated health system. The

National Academies of Sciences, Engineering, and Medicine convened an expert 

committee in 2014 to examine what is known about the nation’s family caregivers of 

older adults. The final report, Families Caring for an Aging America, found that while

the need for family caregivers across the nation is growing, efforts to address that 

need proactively were modest at best. Accordingly, the report recommended that

Congress convene a council to develop a National Family Caregiving Strategy (National 

Academies of Sciences, Engineering, and Medicine, 2016). That recommendation

engendered the passage of the RAISE Family Caregivers Act of 2017

Not all legislative activity on behalf of family caregivers has occurred at the federal 

level. Numerous states have begun enacting legislation to better recognize and

support family caregivers. The Caregiver Advise, Record, Enable (CARE) Act to support

caregivers when patients enter hospitals and to help caregivers understand what will 

be needed when patients are discharged. (Reinhard S. C., Young, Ryan, & Choul

March 2019). While provisions vary by state, since 2014, 44 states, the District of

Columbia, Puerto Rico, and the U.S. Virgin Islands have implemented CARE Ac

policies that require hospitals to advise people of their opportunity to identify a family 

caregiver (Reinhard, Young, Ryan, & Choula, March 2019)

The forthcoming National Family Caregiving Strategy builds on these previous efforts 

and the significant achievements from states and communities that have pioneered 

innovative caregiver support initiatives. When implemented, the strategy will chart a
RAISE Family Caregivers Act Initial Report To Congress Page 29

course for the nation to better support family caregivers to address their needs. It

will identify actions that communities, providers, government, and others can take to 

recognize and support the family caregivers who put their own lives on hold to assist a 

broad cross-section of Americans every day

Since the formation of the council, additional legislation has been passed that 

advances recognition and inclusion of family caregivers. The MISSION Act of 2018,

expanded access to the VA’s Program of Comprehensive Assistance for Family 

Caregivers to caregivers of eligible veterans of all eras, in a phased approach

Previously, only caregivers of eligible veterans who incurred or aggravated a serious 

injury on or after September 11, 2001 were eligible for this program. This expansion

represented one of the largest federal investments to date in a comprehensive program 

to support caregivers

“Unless we teach more families ‘how to fish’ we will bankrupt ourselves with 

burned out caregivers who go down before their care receiver, and/or need to 

prematurely place their frail loved one in a skilled nursing facility which depletes 

their funds at the speed of light, leaving taxpayers with an increased burden.” 

-Response to the ACL RFI

The RAISE Family Caregivers Act

The Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act 

of 2017, Public Law 115-119, which was signed into law in January 2018, seeks to 

address this diverse and complex issue through the development of a National Family 

Caregiving Strategy. To achieve this vision, Congress directed the Secretary of HHS to

■ Establish the council of federal and non-federal representatives to provide 

recommendations and identify best practices to promote improvement of the 

federal, state, and community systems that support family caregivers. A key

expectation of the RAISE Family Caregivers Act was that council deliberations and 

recommendations be informed by extensive public engagement

■ Develop the National Family Caregiving Strategy with detailed 

recommendations designed to recognize and support family caregivers, and deliver 

effective and efficient mission-aligned programs, supports, and services that place 

the person receiving support and the caregiver at the center of person- and family 

care delivery, as appropriate, in all care delivery settings, and assessment and 

service planning, including advance planning services and hospice- and palliative 

care. Additionally, the strategy will identify and integrate evidence-based or

promising practices and innovative models undertaken nationally or internationally, 

including respite options, financial security and workplace issues, information, 

education and training supports, referral, and care coordination
RAISE Family Caregivers Act Initial Report To Congress Page 30

■ The purpose of this initial report to Congress is to document the progress 

of the council since its inception in 2019 and to provide the council’s initial 

recommendations for recognizing, assisting, including, supporting, and 

engaging the millions of family caregivers who provide support to others. As

required by the RAISE Family Caregivers Act, this report includes:

◆ The identification of challenges faced by family caregivers, including financial, 

health, and other challenges, and existing approaches to address such 

challenges

◆ An overview of federally funded efforts to address those challenges

◆ A discussion of how family caregiving impacts the Medicare program, the 

Medicaid program, and other federal programs

◆ Recommendations to improve and better coordinate federal programs 

and activities to recognize and support family caregivers. Also included

are opportunities to improve the coordination of such federal programs 

and activities with state programs and to effectively deliver services based 

on the performance, mission, and purpose of a program while eliminating 

redundancies, avoiding unnecessary duplication and overlap, and ensuring 

the needs of family caregivers are met

The public input requirement, intended to inform recommendations, involved efforts 

to collect, analyze, and synthesize input from stakeholders, including members of the 

public. Most notably, the council invited caregiving thought leaders to brief the council

on a range of caregiving-related issues. In December 2019, ACL issued a formal

request for information (RFI) from the public through the Federal Register and on the 

ACL website on family caregiver needs, challenges, and priorities

To reach the broadest possible cohort of respondents, the RFI was also promoted 

on ACL’s social media platforms and through its digital newsletter. More than 1,60

responses were submitted to the RFI. Researchers at the University of Massachusetts

in Boston conducted a formal analysis of the responses. That analysis and the input

received from guest speakers, along with the council’s own expertise informed their 

deliberations along with the development of the recommendations outlined in this 

report. Section II offers an overview of an RFI analysis conducted by researchers at the

University of Massachusetts in 2020

Role of the Administration for Community Living (ACL)

In May 2019, the Secretary of HHS delegated authority for implementation of the 

RAISE Family Caregivers Act—and the related Supporting Grandparents Raising 

Grandchildren (SGRG) Act—to ACL. The work of the SGRG Advisory Council

complements the efforts of the RAISE Council by focusing on the needs of 
RAISE Family Caregivers Act Initial Report To Congress Page 31

grandparents and other older relatives who are raising children. A 2020 amendment to

the OAA formalized ACL’s authority to implement both Acts

Since 2000, ACL has administered the NFCSP. ACL also administers the Lifespan

Respite Care Program, which funds community-based respite services for “family 

caregivers of children and adults of all ages with disabilities.

Understanding and addressing the needs of caregivers is integral to the mission of 

ACL. The agency was created in 2012 around the fundamental principle that older

adults and people of all ages with disabilities should be able to live where they 

choose, with the people they choose, and with the ability to participate fully in their 

communities. ACL’s formation brought together AoA, the Office on Disability, and the

Administration on Developmental Disabilities. Since its creation, ACL has continued

to grow and assume new responsibilities each year. ACL funds services administered

by the Aging and Disability Networks, which include national, regional, state, and local 

organizations that support community living options for older adults and people with 

disabilities. ACL also advocates across the federal government for older adults, people

with disabilities, and families and family caregivers; and invests in training, education, 

research, and innovation

Public, Private Partnership 

Recognizing the importance of developing a National Family Caregiving Strategy that 

included the voices of all stakeholders, The John A. Hartford Foundation (JAHF),

collaborated with ACL starting in 2018 on implementation of the RAISE Family 

Caregivers Act to ensure consistent representation and sharing of resources across 

programs, states, and leading not-for-profits focused on caregiving. JAHF was a key

driver of the landmark 2016 study, Families Caring for an Aging America, which called 

for the development of a national caregiving strategy (National Academies of Sciences, 

Engineering, and Medicine, 2016)

JAHF awarded a three-year grant to NASHP to provide the council with resources and 

expertise in state and regional planning. The grant established NASHP’s RAISE Family

Caregiver Resource and Dissemination Center as a national focal point for resources, 

technical assistance, and policy analysis for states and the broader stakeholder 

caregiver community

Since late 2019, the council, ACL, and NASHP have been actively gathering public 

comments and compiling research on best practices and supportive public policy 

so that the council has access to timely information on how federal, state, and local 

governments—together with non-profits—can do a better job of supporting family 

caregivers. Key NASHP activities include
RAISE Family Caregivers Act Initial Report To Congress Page 32

■ Convening a faculty of nationally recognized experts and thought leaders from 

across the aging and disability continuum to provide consultation and insight from 

previous efforts to support caregivers

■ Synthesizing key recommendations from 27 family caregiving reports—covering 

aging and disability populations around the world—written in the past decade to 

create a tool for assisting the council in developing its own recommendations (FoxGrage, 2020)

■ Engaging Community Catalyst, in conjunction with The LeadingAge LTSS Center 

@UMass Boston, to analyze public responses to the RFI and conduct the listening 

sessions

■ Collaborating with the National Alliance for Caregiving to produce a series of 

caregiver stories from their national network of caregiving coalitions

Establishing the Family Caregiving Advisory Council

Within the RAISE Family Caregivers Act, Congress stipulated that the council 

reflect the diversity of caregiving situations today. Accordingly, it called for nonvoting members representing the federal departments and agencies that play a

role in caregiver support or LTSS. The RAISE Family Caregivers Act also called for

participation from members of the public who could represent each of the following 

caregiver constituencies: 

■ Accreditation bodies

■ Employers

■ Family caregivers

■ Health care and social service providers and providers of LTSS

■ Individuals with disabilities, veterans, and older adults who need LTSS

■ Paraprofessionals

■ State and local officials

ACL published a call for nominations in the Federal Register in October 2018; 270 

unique nominations were received, many of them from highly qualified individuals

In selecting the nominees, ACL weighed breadth of experience, qualifications, and 

geographic and regional distribution to ensure the council reflected the dynamic nature 

of the family caregiving landscape. Of the council members selected, many are—or

have been—either caregivers, people receiving support, or both. A complete list of

council members along with their biographies is available on the Family Caregiving 

Advisory Council website
RAISE Family Caregivers Act Initial Report To Congress Page 33

Council Deliberations

In August 2019, the council convened in Washington, D.C. During the meeting—an

subsequent in-person and virtual meetings—council members and guest speakers 

shared and discussed personal experiences, results, and strategies from advocacy 

efforts, and findings of national research and state-driven task forces. Throughout 2020,

the council conducted substantive deliberations—moving to an online platform during 

the COVID-19 pandemic. Common among all discussions were the following themes

■ The importance of recognizing the diversity of needs among caregivers and 

people receiving support across the lifecourse

■ The need to support the well-being of family caregivers and the people receiving 

support

■ A shared vision for integrating family caregivers into—and empowering them 

within—the health care system

The public participated in the virtual meetings through chat discussions. ACL staff

reviewed the transcripts and comments submitted via the chat to ensure all perspectives, 

resources, and suggestions were considered for this report and the strategy

“Life is complicated, and families are complicated; we need to be able to address 

the needs of all families and their complexities...”

-Melissa Gerald, Ph.D., program director at the National Institutes of Health (NIH)

Inherent in council discussions was a focus on balancing the perspectives and needs 

of caregivers of older adults with those of care partners and family members of people 

with disabilities. To ensure the council was working for a shared understanding of the

diversity of caregiver needs and situations, NASHP provided technical assistance to 

the council by developing an annotated bibliography of key family caregiver research

that included an overview of several of the major studies conducted in recent decades

This resource contributed to the work of the council by providing a nuanced portrait of 

how the nature of caregiving is shaped by age, geography, education, income, cultural 

background, and health of both the caregiver and the person receiving support. In

addition to the resources provided in the annotated bibliography, the following reports 

informed the development of the council recommendations:

■ Building a National Agenda for Supporting Families with a Member with Intellectual 

and Developmental Disabilities

■ Military Caregivers: Cornerstones of Support for our Nation’s Wounded, Ill and 

Injured Veterans
RAISE Family Caregivers Act Initial Report To Congress Page 34

■ Raising the Children of the Opioid Epidemic: Solutions and Supports for 

Grandfamilies

■ NASHP Inventory of Key Family Caregiver Recommendations

Over the course of its first full year of deliberations, the council received briefings from 

the following recognized experts in the field of family caregiving:

■ Richard Schulz, Ph.D., director of the Center for Caregiving Research Educatio

and Policy, University of Pittsburgh, spoke on the challenges of caring for an 

aging America

■ Grace Whiting, J.D., president and CEO of NAC, addressed national trends an

issues, specifically those observed in four landmark statistical studies conducted 

by NAC

■ Tamar Heller, Ph.D., director of the Institute for Health Research and Policy at th

University of Chicago, provided an overview on research findings related to the 

needs and experiences of caregivers of people with disabilities

■ Donna Benton, Ph.D., research associate professor of gerontology at the Universit

of Southern California Leonard Davis School of Gerontology, shared insights and 

lessons learned from the California Task Force on Family Caregiving

■ Lynn Friss Feinberg, M.S.W., senior strategic policy advisor at the AARP Publ

Policy Institute, outlined the need for a comprehensive paid family leave for 

employees

■ Jill Kagan, director of the ARCH National Respite Network and Resource Center, 

provided a presentation on respite care and how it affects caregivers

■ Scott Beach, Ph.D., director of the Survey Research Program at Center for Socia

& Urban Research, University of Pittsburgh, and Joe Caldwell, Ph.D., director of th

Community Living Policy Center at the Lurie Institute for Disability Policy, Brandeis 

University, gave a presentation on data and research specifically highlighting 

the major gaps and the enhancement needed to improve caregiver access to 

resources

■ Judith A. Stein, J.D., and David Lipschutz, J.D., executive director and assoc

director respectively, of the Center for Medicare Advocacy, presented an overview 

of a brief they developed for the council on Medicare and Family Caregivers

■ Bea-Alise Rector, M.P.A, director of the Washington State Department of Soci

and Health Services Medicaid and State Programs provided an overview of state 

models for supporting caregivers of people eligible for Medicaid
RAISE Family Caregivers Act Initial Report To Congress Page 35

■ Pamela Nadash, Ph.D., associate professor in the Department of Gerontolog

at the University of Massachusetts, and Eileen Tell, M.P.H, a researcher with Th

LeadingAge LTSS Center @UMass Boston, provided multiple briefings to the 

council including qualitative analysis of the findings of the RFI from the public about 

family caregiving and the findings of over a dozen caregiver focus groups

■ Helen Lamont, Ph.D., senior long-term care analyst in HHS’ Office of Disability

Aging, and Long-Term Care Policy, led a discussion exploring ways the council 

could coordinate its recommendations with those of the National Alzheimer’s 

Project Act (NAPA) Advisory Council on Alzheimer’s Research, Care, and Services

Collectively, the broad efforts of the council and its partners have ensured the goals 

and recommendations proposed below were considered in the context of previous 

recommendations made by other task forces and committees considering the needs 

of family caregivers, and are based upon the fullest possible understanding of the 

experiences and needs of today’s caregivers and their expanding role

Family Caregivers Can’t Do It Alone; They Need Assistance

The second word in the RAISE acronym is “assist.” This is important because one

universal truth of family caregiving is that most caregivers need a hand. Multiple

caregivers responding to the RFI called caregiving a “lonely” experience, in large part 

because caregiving is something each person learns to do on their own, typically on 

short notice and usually while juggling the rest of their lives at the same time. The

stories of caregivers that follow illustrate how helping people navigate the world of 

caregiving—for example, applying for benefits, understanding eligibility for support 

programs, obtaining information about proven practices, supervising paid workers, and 

learning to advocate on behalf of themselves and their family member—can make a 

dramatic difference in their ability to provide the best support over time

Help for caregivers—and by extension, the people they support—can come in many 

forms. It can include access to trusted websites, phone consultations and follow-ups,

accompanying a family member on appointments to apply for services or benefits, help 

completing forms and paperwork and understanding eligibility requirements, and can 

be delivered by a range of people including case managers, options counselors, social 

workers, direct support professionals, and trained volunteers

According to a recent analysis conducted by the Alzheimer’s Association, 11.2 million

caregivers in the U.S. are currently providing uncompensated care to family membe

Sixty percent of those caregivers are women (Alzheimer’s Association, 2021). Sheryl,

who lives in New York, is like many of these dementia caregivers in that she rarely 

has time for a break. She often finds herself “on call 24/7.” Her story underscores th

importance not only of providing relevant services, but also of conducting rigorous 
RAISE Family Caregivers Act Initial Report To Congress Page 36

research to develop evidence-based programs and services so that diverse caregivers, 

like Sheryl, have the freedom and flexibility to pursue outside interests. For more, refer

to Recommendation 5.

Sheryl’s husband has dementia and Parkinsonian symptoms. Sheryl 

does everything in the household from finances to house repairs 

and cooking, cleaning, and maintaining their way of life. Sheryl has 

found it hard to take over her husband’s duties as well as her own. 

Two years ago, when her husband was officially diagnosed, 

Sheryl took over his finances and found unpaid bills and double 

subscriptions. When she attempts to change the name on their 

accounts over into her name, companies want to talk to her 

husband, which is not possible due to his condition. She must continuously fight to prove she 

is her husband’s proxy. She says she feels like a widow but without the authority becoming 

an actual widow provides. Like many individuals who come out as LGBTQ, Sheryl doesn’t feel 

safe revealing her sexual orientation. In her case, this includes to medical professionals, whom 

she worries will not take her or her concerns about her husband seriously in light of her sexual 

orientation. Carrying the weight of this worry, on top of caregiving, is incredibly stressful for her.

For Sheryl, caring for someone with dementia means you are on call 24/7, and it is beyond 

anything she said she had experienced as a mother. With a child, she could find breaks and 

alone time, but Sheryl doesn’t find this to be the case with her husband since she can never be 

sure he will stay safe. There are locks on everything in the house. 

Although Sheryl has used respite before, she also finds it very stressful because someone else 

is coming into her space. She has provided years of free service and care to her husband and 

feels the least that can be done is to make services easier to access, such as removing the red 

tape needed to get Medicaid. Sheryl has been told to hire a lawyer to help her, but she neither 

has the money nor the energy to make that happen.

Whitney, who lives in Maryland, experienced “high-intensity caregiving,” which is 

where the caregiver is providing many hours of care with little to no support. While

she was able to maintain full-time employment while caregiving, she nonetheless 

struggled to meet her caregiving expenses. Because of her work, she did not qualify

for caregiving support. Her story highlights just one of the many gaps in caregiver

supports and services available for working families. It underscores the need for asset

protection for all caregivers and the benefits of increasing the availability of counseling, 

training, and peer support to help them manage and navigate the financial instability 

associated with the caregiving experience. For more, refer to Recommendation 3

and Recommendation 4.
RAISE Family Caregivers Act Initial Report To Congress Page 37

Caring for both her two-year-old and her husband, while maintaining 

full-time work as an attorney, was the hardest thing Whitney 

ever had to do, and she constantly battled with whether she was 

providing enough care and attention to each of them. Whitney cared 

for her husband, who was diagnosed with brain cancer, for more 

than forty hours a week due to a decline in cognitive function that 

he experienced preventing him from being left alone. 

Whitney believes that having a medical professional stop by 

occasionally to help with medical tasks would have helped her 

immensely. Yet, Whitney neither qualified financially for any program that would provide this, nor 

did she have enough money to pay for it herself. As she was learning to navigate the confusing 

system of receiving her husband’s financial benefits, she had to get her Congresswoman involved 

because the money wasn’t coming, and the mortgage on her home needed to be paid. Later, when 

her husband spent 9 months in hospice, Whitney was able to borrow leave from coworkers so she 

could care for him, which made her feel supported and valued as an employee. 

Whitney described her time as a caregiver as living in a bubble with a high amount of emotion, 

stress, and worry, where it was impossible to think straight. She would have benefitted from a 

connection to caregivers going through the same experience as her.

Tom, a Minnesota caregiver, is one of the 39% of family caregivers who identify as 

male. His story is an example of how important it is that caregivers, service providers,

and health care professionals have access to a robust body of trusted, standardized, 

and evidence-based information about caregiving and how best to support family 

members. Without this body of work, many family caregivers, like Tom, have to make

decisions based off their own best guess of what they feel is best for the person 

receiving support. To address this issue, the nation needs a national infrastructure

of standardized information and best practices about family caregiving. For more on

establishing a national infrastructure with standardized data on caregiving, refer to 

Recommendation 5.

Tom’s wife started asking her doctors about her memory issues 

at age 52 but didn’t receive the official diagnosis of early onset 

Alzheimer’s disease until age 57. His wife’s condition led Tom to 

ultimately leave his non-profit work and move him and his wife into 

Senior Housing. Five years later, as his wife’s condition continued 

to get worse, Tom had to place her in a memory care group home. 

His wife struggled with what was happening to her. Her new reality 

was hard for her to accept. Three years after that, Tom had to move 

her again to a memory care environment that included nursing 
RAISE Family Caregivers Act Initial Report To Congress Page 38

care. She tested positive for COVID-19 and was placed in a COVID unit where 18 people died. 

Fortunately, she recovered but is now receiving hospice care. Tom’s caregiving efforts revolve 

around her end of life needs. He makes sure family members can see her via Zoom meetings, 

and he is arranging for her burial place and final services. 

Tom found navigating the health care system very challenging and felt as if the providers and 

specialists weren’t communicating or collaborating with one another. He often made decisions based 

off his own best guess – not with any real guidance from any provider. He feels he was successful in 

receiving services only because he was so persistent and applied for services more than once. Tom 

thinks it’s important for caregivers to connect with someone, such as a care manager, who knows 

the system and can help navigate all the different agencies and departments.

After his wife’s diagnosis, Tom and his wife reached out to their community and were part 

of forming the first “Giving Voice” chorus, which helped those with the disease and their 

caregivers sing together. This program has now gone international. They also found a support 

group specific for those with early onset Alzheimer’s and their caregivers. The members of 

this group provided helpful tips and resources, including the importance of hiring an elder 

law attorney to help financially plan for current and future expenses. Tom admits the elder 

law attorney was expensive but worth it. Tom feels that his spiritual strength has helped him 

through his caregiver journey. He believes spirituality should be practiced every day, just like 

exercise. He says it has helped him frame each day, helping set a context into moving into 

a new day and letting go of what happened the day before. His faith community has been a 

source of comfort during the past 10 years. 

Jennifer H.’s story illustrates the critical importance of supporting caregivers during

emergencies. For example, the current pandemic has disproportionately affected

family caregivers. Her story also serves as a reminder of the importance of training

professionals to recognize caregivers and treat them and their family members with 

compassion and respect, as well as make appropriate referrals that can help them 

carry out their tasks in the best possible way. For more, refer to Recommendation 2

and Recommendation 3.

In 2011, Jennifer H. first noticed that her mother was having trouble 

with her short-term memory. Jennifer didn’t believe it was serious 

at first, but, over time, her mother’s condition escalated to include 

paranoia, getting lost or confused easily, suffering from hallucinations, 

making calls to 911 to report serious crimes that hadn’t happened, 

and leaving home for days at a time without telling anyone where 

she was going. Jennifer’s family tried watching her all the time, but 

found this wasn’t possible, and Jennifer’s mother continued to leave 

home without her family’s knowledge. When they took the car keys away, her mother took the golf 
RAISE Family Caregivers Act Initial Report To Congress Page 39

cart, and when they took that away, she wandered away by foot. One night in 2018, after leaving 

her home on foot, Jennifer’s mother was hit by a car. This unfortunate event ultimately helped the 

family finally get an official diagnosis of dementia and secure care in an assisted living facility. 

The COVID-19 pandemic has brought new concerns about the care her mother is receiving. Since 

visits to her mother’s assisted living facility aren’t allowed, Jennifer hasn’t been able to witness 

the care received and hasn’t been informed of any of her mother’s health changes. However, 

due to a recent hospitalization, she learned her mother is now completely incontinent. When 

she asked the staff at the assisted living facility about it, they commented that her mother really 

needed plastic mattress pads. Jennifer worries her mother has been laying on a soiled mattress 

for months. Now, the family has hired a full-time caregiver to be with her mother to ensure she is 

receiving proper care but wonders how long they can afford that additional expense on top of the 

$6,000 they are already spending per month for the assisted living facility. 

Jennifer was surprised by the insensitivity she encountered by specialists and feels that 

health care providers and community services, such as police departments, need systemic 

improvements on aging related social issues and health conditions. Although the police 

department had been trained to handle Alzheimer’s, the main obstacle with care was her mother 

being an adult. They could not take her in for assessment under [a local law], which is used 

for mental health crises. There is a huge barrier for the family getting family members with 

dementia the care they need, especially those with paranoia and hallucinations. She found 

there to be huge gaps in time between the initial recognition that there is a problem, getting 

an official diagnosis, and finally getting help. Education for social services needs to focus 

on caregiver needs, how to obtain in-home care for families to be able to keep their family 

members safe, and how to financially plan and manage the expenses of caregiving. 

Gabe, who is from Florida, is just one of an estimated 3.4 million child, tween, and

teen caregivers in America. Many caregiving youth assist parents or other relatives who

are also caregiving. That is why Gabe calls caregiving a “team sport.” That idea speak

to the importance of a holistic approach that values and recognizes caregivers of all 

ages by using culturally sensitive and age-appropriate strategies to identify and assist 

caregivers; when everyone works toward the same goal, the whole team wins. For

more, refer to Recommendation 1.3 and Recommendation 2

A recent high school graduate, Gabe grew up in a household with 

his mom, 3 siblings (he is the youngest), and his grandpa who had 

a serious mental illness. Gabe spent much of his childhood helping 

around the house and caring for his grandpa. Being a caregiver 

at such a young age was difficult as he didn’t really know how to 

handle his grandpa’s outbursts, wandering or talking to himself. His 

behavior was confusing, but it was also Gabe’s norm.
RAISE Family Caregivers Act Initial Report To Congress Page 40

As Gabe got older, his responsibilities grew. By 8th grade, he was routinely helping his family 

by doing the laundry and grocery shopping. Once Gabe could drive, he would take his grandpa 

to his medical appointments. Living in Florida, the family has had to worry about disaster 

preparedness because they had to factor in his grandpa’s mental health condition, his age, his 

ability to leave the house, and their ability to get him to safety. 

Gabe has always felt older than his peers. He routinely had to miss out on school opportunities 

and events, because there was always stuff that had to be done. He says he essentially became 

the man of the house. He was able to fix things when they broke, and he helped his mom make 

family decisions. While Gabe was juggling home, school, and caregiving, his mom was juggling 

home, work, and caregiving. She was burnt out too. He was often frustrated, but he learned to 

deal with each moment, each day. 

Although his grandpa passed away in 2020, Gabe has been shaped by his caregiving journey 

and wants the memory of his grandpa to live on. Gabe wishes society would remember that 

it’s not just the person who needs care that needs help—the family needs help, too. He wishes 

more people would talk about mental health. He has struggled with his own mental health and 

knows how hard it is to share those feelings. He thinks society should view caregiving as a 

team sport—in which everyone works to help each other.
RAISE Family Caregivers Act Initial Report To Congress Page 41

II. Current Understanding of Family Caregiving 

Family caregiving is as old as humanity itself, yet it did not emerge as an important area 

of psychological research until the 1980s. In 1980, Steven Zarit, Ph.D., and colleagu

published a study that explored the experience of stress among caregivers of older, frail 

adults living with dementia. The study found that the so-called “caregiver burden” was

decreased when the caregivers received assistance from other relatives. Over the ensuing

40 years, extensive research has expanded our understanding of the psychological, social, 

health, and economic impact of caregiving and the effects of interventions and public 

policies on caregivers. Yet, despite such progress, today’s family caregivers continue to

provide hundreds of billions of hours of uncompensated care each year while remaining 

largely unrecognized as the primary social safety net that they are

 “My husband and I have three adult children with Down syndrome, and that is a 

lifelong journey and adventure.”

-Nancy Murray, M.S., caregiver & Family Caregiving Advisory Council Co-chair

The passage of the RAISE Family Caregivers Act comes at a pivotal time in our 

nation’s history. While the role of the family caregiver has always been part of American

family structure, the nature of the tasks is changing. Family caregiving today involves

more intense and complex care, including performing non-medical (i.e., administrative

and medical tasks and managing multiple health conditions that often include pain 

management (Reinhard S., et al., 2019). At the same time, the people who are ab

to undertake caregiving responsibilities is also changing. Today’s family caregivers

are a diverse population spanning all ages, genders, education and socioeconomic 

levels, ethnicities, and cultures. Because of this rich diversity, interventions to support

them must be equally diverse and flexible enough to understand and meet their needs 

(Reinhard S., et al., 201

Who Are America’s Family Caregivers? 

As previously discussed, the number of family caregivers is difficult to determine, in 

part due to the many definitions of caregiving and differing methodologies for counting

According to the Caregiving in the U.S. 2020, more than 1 in 5 Americans (53.0 million 

adults) have provided care to an adult or a child with a disability at some time in the 

past 12 months. Other data collection sources that look at different spans of time or

use different definitions of caregiving, arrive at different figures, and those differing 

figures have implications for estimates into the economic value of caregiving

These numbers do not include the millions of grandparents age 60 and older who 

are responsible for the basic needs of one or more grandchildren under age 18 living 

with them. Nor does it include child caregivers between the ages of 8 and 18 who are
RAISE Family Caregivers Act Initial Report To Congress Page 42

helping adults in their homes with caring for siblings, parents, or aging relatives. It also

does not include the invisible caregivers—children who are primary caregivers for their 

parents, grandparents, and others

Despite the many unknowns, one theme is consistent. The number of caregivers is

expected to grow significantly, as the population of people living with multiple chronic 

conditions and disabilities increases in the coming decades and more complex care 

shifts to community-based care

Family caregivers are a demographically diverse group that reflect the U.S. populati

In fact, family caregiving is so commonplace that when former First Lady Rosalynn 

Carter testified before the Senate Special Committee on Aging in 2011 she noted that 

“...there are only four kinds of people in the world-those who have been caregiver

those who are currently caregivers, those who will be caregivers, and those who will 

need caregivers.” (Family Caregiving Issues and the National Family Caregiver Support

Program, Written Testimony of Former First Lady Rosalynn Carter, 2011)

Family caregivers live in every state and community: rural areas, small towns, and large 

cities. Some caregivers participate in paid employment; some are part-time caregivers,

others care full-time for one person or for multiple individuals. Caregiving occurs in all

family types and at all incomes and educational levels. It also affects people of all gender

identities and sexual orientations (AARP and National Alliance for Caregiving, 2020)

Yet, caregiving is such a diverse activity that these statistics still fail to tell the whole 

story. Significant differences exist within racial and ethnic populations of family

caregivers and those differences affect the experience of caregiving. The experiences

and cultural values of diverse communities, including how and where they choose to 

care for family members vary widely. “Each racial and ethnic community has its own

unique needs, responds to caregiving differently, and is informed by expectations, 

traditions and cultural norms that are critically important” (Choula, Snyder, & The John 

A. Hartford Foundation, 2020). For example, researchers have found that Africa

American and Hispanic caregivers are more often in high-intensity care situations 

than white and Asian American caregivers (Choula, Snyder, & The John A. Hartford

Foundation, 2020). On the other hand, Asian American caregivers often report feeling

higher levels of emotional stress than African American or Hispanic caregivers. Even

within populations, there are different responses to caregiving (Choula, Snyder, 

& The John A. Hartford Foundation, 2020). Family caregiving is an activity tha

involves families working together over time; this can be complicated when different 

generations have differing perspectives on what constitutes the best care. Because

of these nuanced differences, approaches to supporting caregivers must be culturally 

sensitive, flexible, multifaceted, and adaptive. There is no one-size-fits-all solution to

the challenges faced by families when it comes to caregiving, and interventions to 

support family caregivers need to be individualized
RAISE Family Caregivers Act Initial Report To Congress Page 43

Estimated Number of U.S. Adults Who Are Caregivers (in millions)

Figure 1. 2020 Prevalence of adult caregivers in the U.S. of children with disabilities and adults over age 

18 according to the Caregiving in the U.S. 2020 survey conducted by the National Alliance for Caregiving 

and AARP.

Family Caregiving Tasks

“The time and energy that caregivers must devote to administrative and care 

management responsibilities cannot be overstated. As a professional in the field, 

I was well aware of the burdens of caregiving, I did not, however, fully 

understand the weight of time and frustrations that caregivers incur as primary 

advocates and care managers, until I became a full-time caregiver for my husband.”

-Rhonda Montgomery, Ph.D., caregiver & member of the Family Caregiving Advisory Council

The notion that caregiving is only about personal care or assistance with ADLs is 

outdated. While 60% of today’s caregivers do assist with at least one activity of daily

living, such as assisting with getting in and out of bed, dressing, toileting, bathing, 

feeding, or dealing with incontinence, they also take on a wide range of other tasks

These include:

■ Medical tasks: Research has consistently shown that a substantial portion of 

family caregivers are providing physical and mental health care support. According

to NAC, half of all caregivers give medicines, pills, or injections. African American

and Hispanic caregivers are more likely to help with medical tasks than white 

caregivers. Performing medical tasks also correlates to care intensity (the number

of hours of care provided); in other words, caregivers who provide more hours 

of care are more likely to perform medical tasks (AARP and National Alliance for 

Caregiving, 2020). Meanwhile, drawing on weighted estimates from linked nationally

representative disability and family caregiver surveys, the National Health and 

Aging Trends Study (NHATS) found in 2011 that of 14.7 million family caregivers

of community-dwelling older adults, 44.1% provided “substantial help with health

care activities.” The study found that these caregivers tended to be older than
RAISE Family Caregivers Act Initial Report To Congress Page 44

caregivers who provided no health care help, and were less likely to rate their health 

as excellent or very good than caregivers who provided some help. Among older

adults receiving “substantial help with health care activities,” 45.5% had dementia,

and 34.3% had severe disability (Wolff, Spillman, Freedman, & Kasper, 2016

In order to perform these tasks, family caregivers have to have and understand 

information and terminology about complex medical conditions, available 

treatments, and possible side effects. A significant proportion of family caregivers

provide physical, wound care, and other complex medical procedures and tasks

An increasing number manage chronic and acute pain. Caregivers also help make

decisions about participation in research studies, and they often take on the 

reporting, transportation, and other logistical tasks associated with involvement in 

clinical trials (McCleary, May 2019)

■ Emotional and mental health support: According to NAC, 8.4 million

Americans are providing care to an adult with a behavioral health issue

According to the CDC, an additional 1 in 6 U.S children under age 8 have a

mental disorder. The rates are higher for children who live in poverty; 22%

of children living below the federal poverty level have a mental disorder. The

caregiving tasks associated with mental health support vary widely. For some, it

may involve listening and talking through problems. At other times, it can mean

ensuring the person receiving support has opportunities to engage in enriching 

activities. For caregivers of people with serious mental illness, family caregiving

may involve bridging health care systems and providers, connecting the person 

receiving support to mental health services, support groups, or counseling, 

and administering or tracking use of prescribed medicines. Due to stigma

around mental health issues, half of caregivers say it is difficult to talk to others 

about the mental or emotional health issues associated with behavioral health 

caregiving. This is a key contributor to isolation and loneliness for this caregiver

population (National Alliance for Caregiving, February 2016)

“The time that can be wasted on hold on the phone just waiting for help is ridiculous.”

-Response to the ACL RFI

■ Administrative management: Caregivers’ responsibilities also often extend 

beyond traditional direct care to making phone calls, dealing with health insurance 

payers, and communicating with a wide range of professionals including: 

physicians, physician assistants, nurses, nurse practitioners, social workers, 

educators, psychologists, pharmacists, physical and occupational therapists, 

certified nursing assistants, home health and direct support professionals, 

and others. During these calls, caregivers must navigate the differing levels of

understanding among professions about the role of family caregivers and how 

best to integrate them into health care conversations. In circumstances where
RAISE Family Caregivers Act Initial Report To Congress Page 45

the person receiving support participates in a self-direction program, the family 

caregiver may be expected to supervise or train workers

These tasks can be extremely time consuming and often reduce available time to 

provide hands on care for family members. Analysis of data from the baseline 2011

NHATS and the companion National Survey of Caregiving found that more than 3 in 

4 caregivers were assisting with at least one health system interaction task in 2007

Activities that members of the council report completing in the course of their own 

caregiving include: 

◆ Making phone calls to multiple providers seeking appointments or advice

This task often includes repeated calls, spending time “on hold,” or leaving 

messages and waiting for return calls. It also may require navigating multiple

websites

◆ Coordinating schedules for medical procedures across multiple providers

◆ Repeatedly completing forms and explaining medical histories

◆ Dealing with, and paying, invoices from multiple providers even when the 

invoices stem from a single medical event

◆ Communicating with pharmacies to obtain, track, and administer medications

◆ Communicating with insurance companies to gain, or appeal for, approval to 

help assure payment

In addition, many caregivers manage all or some aspects of the personal finances 

of the person receiving support. Thirty percent of caregivers report this is a timeconsuming task (AARP and National Alliance for Caregiving, 2020). Caregivers wh

provide more hours of care per week, often report a greater burden associated with 

managing personal finances

■ Transportation: Eighty percent of caregivers assist with transportation, and 

lack of transportation is a key social determinant of health (AARP and National 

Alliance for Caregiving, 2020). Lack of transportation can have a significant effect

on quality of life and independence for people with disabilities and older adults 

as well as limit their ability to receive timely access to medical care. “The lack of

transportation in some communities makes it more difficult for individuals to get 

to doctor appointments, shop for groceries and other basic necessities, attend 

religious services, and participate in social events. Individuals who are cut off from

communities and interactions can feel socially isolated, impacting their health 

and well-being” (AARP, 2020). In areas with limited public transportation options,

providing transportation or helping an individual access transportation can be a 

critical aspect of caregiving
RAISE Family Caregivers Act Initial Report To Congress Page 46

■ Coordination and advocacy assistance: Family caregiving involves an array 

of medical, physical, emotional, financial, legal, and provider coordination and 

advocacy issues. Caregivers can serve as advocates, taking notes at medical

meetings and working with health insurance payers for authorizations. They also

interact with courts for legal concerns, child welfare agencies, schools, child care 

agencies, and adult day health and respite care providers. Care coordination is

not easy; a third of caregivers report finding this aspect of caregiving to be difficult 

(AARP and National Alliance for Caregiving, 2020)

Caregivers also participate in critical advocacy efforts in their communities to 

advance awareness of the needs of people receiving support. They work with and

arrange the services of community-based organizations, paid LTSS, and special 

education services (National Academies of Sciences, Engineering, and Medicine, 

2016). Over half of family caregivers report engaging in advocacy activities which

can include ensuring the needs of the person receiving support are met, and 

working with policy makers to champion long-term change (AARP and National 

Alliance for Caregiving, 2020)

■ Education: If the caregiver is a grandparent raising a grandchild, he or she 

may defer their own self-care to perform such tasks as taking a child to school, 

shopping for school supplies and groceries, coordinating special education and 

medical services, helping with homework and school projects, and planning 

enrichment activities (Generations United, 2018). If the grandparent becomes ill and

the role reverses, there is often no one to assist the child with their education

Forgotten Caregivers: Children and Teens

An often-overlooked segment of the caregiving 

community are children, teens, and young adults 

who care for parents, grandparents, and siblings

Advocates refer to these young caregivers as 

“caregiving youth.”

The COVID-19 pandemic 

is increasing the number 

of young people caring for 

family members. For a real-life 

example of how one teenager is 

adapting to her role as a family 

caregiver, read Role Reversal: 

Covid Increases Ranks of Child 

Caregivers, published in March 

2021 by Kaiser Health News.

Research on caregiving youth remains limited, 

in part because many families are reluctant 

to volunteer information on child caregivers 

(National Alliance for Caregiving in Collaboration 

with United Hospital Fund, 2005). A 2005 study

found that more than half of caregiving youth help with bathing, dressing, getting in 

and out of beds and chairs, toileting, and feeding. One in 6 child caregivers helps

a family member communicate with doctors or nurses, and 15% of those aged 12 

and older make calls and engage in care coordination. While data is still emerging,

research also suggests that younger caregivers are more likely to support someone 

with a behavioral health condition (Reinhard S., et al., 201
RAISE Family Caregivers Act Initial Report To Congress Page 47

Caregiving youth report feeling “appreciated” for this help, however it comes at a cost

They often have to choose between providing support and schooling, homework, 

sports, and friends. A fifth of students who drop out of high school do so to care for a

family member (Bridgeland, DiIulio, & Burke Morison, 2006)

 “It seems as though we’re trying to behave like an adult to support the person 

we’re taking care of but like we’re still children.” 

- Youth Caregiver response during August 2020 Listening Session

To expand the council’s understanding of how family caregiving impacts youth, the 

American Association of Caregiving Youth (AACY), Community Catalyst, and the 

LeadingAge LTSS Center @UMass Boston collaborated to conduct an online focus 

group in August 2020 that included a group of teens caring for family members with 

serious illnesses and/or chronic conditions. While the teens were all based in Florida,

they represented a broad cross-section of racial and ethnic backgrounds

The teens in the focus group reported that they supported adults with a range of care 

needs and conditions (e.g., cancer, arthritis, diabetes, and mobility challenges), an

performed many tasks, including transferring, help with mobility, personal care needs, 

medication management, and help with instrumental activities of daily living (laundry, 

housekeeping, meal preparation, and more). While the teens admitted to feeling stressed,

having to make sacrifices, feeling easily irritated and isolated, and having difficulty 

controlling anger or impatience, they expressed loyalty to the people receiving support

As anticipated, a noted observation of the listening session was the lack of existing 

support systems and learning opportunities in place for these caregiving youth. A

few participated in a school-based Caregiving Youth Project. This program identifies

caregiving youth in school and extends critical caregiving support services to the 

home, as well as providing out of school activities. For many of the participants in

the focus group, this program was the only formal intervention they received. A few

mentioned informal supports such as being able to talk to other family members who 

might also be teen caregivers

When it came to discussing the types of programs the youth thought would help, the 

idea of a summer camp experience or an online support group were well received

Some felt they could benefit from learning relaxation, meditation, and other selfcalming techniques. After one teen described her experience with an affordable mental

health intervention, others saw value in that as well. The notion of “taking a break” or

having a caregiver come to the home so they could have time off was well received

The teens talked about needing help handling certain situations especially around 

providing medication, helping with mobility, and care transfers
RAISE Family Caregivers Act Initial Report To Congress Page 48

 “I want to learn how to like, if she’s sitting on a chair...like I want to know how to 

properly lift her up without causing any pain to her.”

-Youth Caregiver response during August 2020 Listening Session

Despite the challenges, the teens, like their adult caregiver counterparts, agreed that 

caregiving was a source of tremendous satisfaction and pride. One teen expressed the

feelings of many caregivers—regardless of age—when they noted: “The more you pour 

into others, the more you have to pour into yourself. Being a caregiver can be very 

nice and rewarding because you know you’re doing something for someone that you 

care about.”

The 2019-2020 ACL Request for Information (RFI) on Family Caregiving

The RAISE Family Caregivers Act calls for the National Family Caregiving Strategy to 

include the perspectives of family caregivers. While the council brings significant and

broad understanding of the challenges and needs of family caregivers, there was a 

recognition that the rapidly changing and diverse nature of family caregiving would be 

best captured through a focused data collection effort

In December 2019, ACL issued an RFI inviting caregivers, family members, and 

other stakeholders to share their perspectives on family caregiving. The response

was unprecedented, yielding 1,613 unique responses, 75% of which were from 

family caregivers across the age spectrum and from a wide range of economic and 

demographic backgrounds. The remaining responses were from advocacy groups

(11%), community-based organizations (10%), government (2%), universities (2%), and 

other researchers (1%) (Nadash, Jansen, Tell, & Cohen, 2020)

A team of researchers at the University of Massachusetts Boston, led by Pamela 

Nadash, Ph.D., conducted qualitative data analysis of the RFI results. The researche

used an analytical approach called grounded theory to identify and tabulate caregiver 

priorities and concerns. Grounded theory differs from traditional scientific models of

research where the researchers develop a working hypothesis and then collect data 

to assess that hypothesis. Instead, the researchers reviewed each RFI response and

manually applied codes to mark key ideas and themes as they emerged

The effort involved coding the 1,600-plus caregiving responses, and resulted in 

a report that builds upon, and validates, previous research by identifying present 

caregiver priorities and concerns. As the authors note, “prominent among the themes

of the responses and recommendations were concerns about caregivers’ personal 

finances and future financial security, which caused caregivers significant stress and 

worry” (Nadash, Jansen, Tell, & Cohen, 2020)
RAISE Family Caregivers Act Initial Report To Congress Page 49

“As the person with disabilities, I not only have caregiving from family for medical 

appointments, food, medical care for seizures and helping with many other issues 

I have such as balance and weakness in legs and speech problems, but they 

also have to help with my 6 year old...They have gone above and beyond what 

they should have to do right before retirement and my coming in to live and be 

cared for gives them very little break. If they both need to go somewhere and it 

interferes with my rest then it brings on more seizures. They are my rock and they 

deserve to have some support and assistance also for what they are doing!” 

-Response to the ACL RFI

The RFI included three questions; for one of the questions, respondents selected which 

of a list of potential actions to support caregivers were important to them. They could

select as many actions as they preferred. Not surprisingly, the majority of respondents

indicated interest in services and programs that could assist them in their caregiving 

duties, particularly those that were person- or family-centered. In fact, these two topics

each garnered responses from at least half of respondents (See Figure 3). Meanwhile,

46% of respondents noted that respite options were important to them. An almost equal

number of respondents cited care transitions and coordination as an important concern 

(45%), followed by financial security (42.3%) and information, education, training, and/or

referral (39.5%) (Nadash, Jansen, Tell, & Cohen, 2020

Respondents also noted the importance of caregiver assessments (26.7%), developing

solutions to workplace issues (26.5%), the availability of care coordination in hospice

(21.5%), the importance of palliative care (21.5%), and the need for advance car

planning (24.4%). While these latter five topics received relatively fewer responses, it i

worth noting that in each instance at least 20% of respondents selected these items, 

highlighting the diversity of concerns affecting family caregivers and the importance 

of multi-dimensional responses. The study authors note that the priorities of family

caregivers tended to align with those of other respondents to the RFI (Nadash, Jansen, 

Tell, & Cohen, 2020)

Two of the RFI questions were open-ended, asking respondents to describe in their 

own words:

1. A pressing family caregiving need or conce

2. A suggestion for a recommendation that would help them address the identifie

concern

The ways that respondents answered the open-ended questions reveal the significant 

pressures caregivers face. Because ACL did not limit the length of each openended response, many of the respondents wrote deeply personal essays about their

caregiving journey. They shared their stories in writing that was immediate, raw, and at

times heartbreaking
RAISE Family Caregivers Act Initial Report To Congress Page 50

For the question asking about a pressing need, many respondents found it difficult 

to limit their response to a single item. One respondent appeared to speak for many

when they noted, “There isn’t a way to narrow this down to one need; the lack of 

support is far too great.”

Another wrote, “Just one? Where do you start? I’m exhausted.”

And a third commented, “I cannot pick just one area: There are limited providers 

(behaviorist or others) who are capable and competent to help families and children 

with developmental disabilities and behaviors. There are limited competent, capable 

people and/or funds to assist in providing respite care. There are limited funds to 

assist with providing transportation.”

Across the RFI responses, respondents specifically requested stipends and 

tax deductions to alleviate the financial challenges created by their caregiving 

responsibilities. There were a number of calls for increased workplace flexibilities

for family caregivers. These requests seemed to encompass both a need for

actual flexibility with regard to taking time off and a need to shift the perception 

that caregivers are not able to be committed employees; a significant number of 

respondents remarked on missed promotions, lost benefits, and lower lifetime earnings 

due to being a family caregiver. One respondent noted, for example, “I do not have

children and am the medical power of attorney for my two aunts and uncle. I have 

spent a significant amount of time out of work caring for them and have only my paid

vacation time available to me to take that time off.”

Similarly, many respondents noted the challenges associated with hiring direct support 

professionals (or volunteer respite care) to supplement the support provided by family 

members. Other respondents, who were receiving caregiver supports and services,

commented on inflexibilities and inefficiencies in the delivery system that made the 

services they were receiving less helpful than they could be if they were more flexible

Respondents noted a need for education and training—both formal caregiver 

training and more medical providers taking the time to talk to them. Some of the

suggestions were practical in nature. For example, one respondent suggested that

medical providers dictate caregiver instructions into the patient’s medical file for future 

reference by the care team, the patient, and potential secondary caregivers

Finances were a prominent theme in the responses, both explicitly and implicitly. “Thi

theme included concern about the ability to accommodate care recipients’ needs 

(including costs associated with health care, health supplies and equipment, housing, 

and support services) as well as concerns about caregivers’ own financial needs, 

both in the short and longer terms. Concern about personal finances also frequently
RAISE Family Caregivers Act Initial Report To Congress Page 51

incorporated family caregivers’ ability to support other family members in addition to 

the care recipient” (Nadash, Jansen, Tell, & Cohen, 2020)

Figure 2. Close-ended RFI responses to a question in which respondents responded to a list of issue 

areas and selected all that were important to them.

“Respite is something that is DESPERATELY needed by every single caregiver of 

someone with the kind of long-term care needs l have described above! I know this 

because l am one of several thousand members of a Facebook group specifically 

for Caregivers of people with Parkinson’s disease. Everyday l read their post[s] 

and it’s truly heartbreaking, because most every one of them have no one, not one 

single person, who will come along side of them to offer relief!” 

-Response to the ACL RFI

Finally, woven throughout the RFI responses were references to the need for a health 

break. Respondents used a variety of terms for what professionals refer to as respite,

including “break,” vacation,” “time off,” “downtime,” and “relaxation.” Regardless of

terms used, respondents consistently remarked that caregiving can be all-consuming 

and deeply exhausting. This aligned with a body of research into caregiver burnou

Caregivers need time to rest. More importantly, they need time to attend to their own

financial, social, physical, and emotional well-being without sacrificing the safety and 

well-being of the person receiving support
RAISE Family Caregivers Act Initial Report To Congress Page 52

One limitation of the study is that the RFI closed in February 2020, before the full 

implications of the COVID-19 pandemic became apparent. While the results do not

include the impact of the pandemic on family caregivers, they do document the 

significant and pressing needs of caregivers—needs that the public health crisis 

has exacerbated. The final report, In Their Own Words—Caregiver Priorities and

Recommendations: Results from a Request for Information, is available on the RAISE 

Family Caregivers Resource and Dissemination Center website

The findings of the RFI reinforced and clarified existing understanding of the challenges 

faced by, and needs of, family caregivers across the life course. They also reflect the

findings of Families Caring for an Aging America a landmark 2016 report from the 

National Academies of Sciences, Engineering, and Medicine, which was developed 

through a meta-analysis of existing research into caregiving. That study looked at the

research around certain aspects of family caregiving, including psychological effects, 

both positive and negative, in addition to the physical and social effects. These

parallels appear most notably in the impact of caregiving on the caregiver. Both the

National Academies report and the RFI note physical and psychological outcomes 

of caregiving that have an overall negative effect on health and well-being, changes 

in health behaviors among caregivers (i.e., missing self-care appointments), an

changes in relationships. Both sources show, using different language and examples,

that the intensity of caregiving has an impact on the negative psychological effects of 

caregiving (National Academies of Sciences, Engineering, and Medicine, 2016)

The RFI responses, along with the qualitative analysis conducted by Dr. Nadash,

et al., contributed significantly to the council’s process for developing the 26

recommendations and ensuring those recommendations are responsive to the 

needs of today’s caregivers. They also used the information gathered in the RFI

about caregiver priorities to inform a series of focus groups designed to support the 

development of the National Family Caregiving Strategy. For further discussion of the

needs of family caregivers, as noted in both the RFI and through council deliberations, 

refer to Section II, Current Understanding of Family Caregiving

The Intersection Between Family Caregiving and the Direct Care Workforce

“The job of paid caregivers... should be elevated to establish caregiving as a 

professional career path... Direct care workforce jobs should not be seen as deadend jobs and all funding sources should be leveraged to increase their value and 

promote the profession of caregiving.”

-Response to the ACL RFI

The COVID-19 pandemic has brought attention to a crisis that has been developing 

over recent decades among paid caregivers. These professional caregivers are known

by a range of terms, in part defined by their specific tasks. Sometimes they are known
RAISE Family Caregivers Act Initial Report To Congress Page 53

as home health and personal care aides or, more generally, direct care workers. Some

paid caregivers are “certified Nursing Assistants” who are subject to state laws and 

regulations. For the purposes of consistency, this report uses the broadly general

term “direct support professionals” (DSPs) to describe the population of employees 

who provide caregiving support in the home or in assisted living communities, and 

other community-based residential care settings as part of their paid employment

That support can include “essential activities performed every day, including 

bathing, dressing, eating, toilet care, and transferring/mobility” or it can extend to 

“tasks associated with living independently, such as preparing meals, shopping, 

housekeeping, managing medications, and attending appointments” (Campbell, Del 

Rio Drake, Espinoza, & Scales, 2021)

While the mission of the Family Caregiving Advisory Council is to develop 

recommendations and a national strategy to support family caregivers, it recognizes 

the need to consider the many contributions of DSPs in supporting the autonomy and 

independence of individuals. The nation’s 4.6 million DSPs and the care infrastructur

they support are an implicit part of any discussion about family caregiving. That is

because they often complement the efforts of family caregivers either by providing 

support so they can take a break or go to work—or by working in tandem with them 

to ensure the needs of the person receiving support are fully met. Many people with

disabilities who receive state Medicaid-funded HCBS still need to augment those 

services with the assistance of family caregivers to remain maximally independent

“If family caregivers are the backbone of the long-term services and supports 

system— with appropriate support, connections and resources, paid caregivers are 

the connective tissue that keeps the backbone of the system together.”

James Murtha, MSW, disability advocate & Family Caregiving Advisory Council Member

In the past 30 years, the pipeline of direct support professionals has not kept pace 

with the need. Contributing factors include “low wages, scant benefits, limited training,

and lack of career advancement opportunities” for workers (President’s Committee for 

People with Intellectual Disabilities, 2017). The DSP workforce is predominantly female

(87%). It is extremely diverse and relies heavily on immigrant workers; the majority are

people of color, including 30% who are Black or African American, and 18% who are 

Hispanic or Latinx. Seven percent are Asian or Pacific Islanders and 4% identify as

other races or ethnicities. The direct care workforce also tends to be older; while the

median age is 41, more than a third are over age 55 (up from just 19% a decade ago)

Finally, and critically for this population, the median hourly wage for this population 

of workers is $12.27. In 2018, the average income was just over $20,000 per ye

As a result, 42% of the DSPs receive public assistance (Campbell, Del Rio Drake, 

Espinoza, & Scales, 2021). “The low level of compensation contributes to the
RAISE Family Caregivers Act Initial Report To Congress Page 54

difficulty of attracting people into these jobs, particularly when they can earn more 

at a neighboring hospital or fast-food restaurant” (Spetz, Stone, Chapman, & Bryant, 

2019). Those who do choose to work as DSPs often work more than one job—or

multiple part-time jobs—just to make ends meet

Other factors, such as occupational safety, lack of career mobility, and education and 

training challenges combine to further destabilize the DSP workforce. As a result,

home health agencies often struggle to recruit, train, and, most importantly, retain staff 

(Spetz, Stone, Chapman, & Bryant, 2019). The median turnover rate for DSPs in 2017

was close to 67%. This has implications for family caregivers because high turnover

has been linked to “increased risk of pressure ulcers, contractures, injuries, emergency 

department visits, and hospital admissions” for people receiving care (Spetz, Stone, 

Chapman, & Bryant, 2019)

The high turnover rate has been exacerbated during the pandemic as a population of 

mostly low-wage, female workers left the workforce (Ewing-Nelson & Tucker, 2021). In

April and May 2020, for example, Latinas and Black women had the highest levels of 

unemployment, 16.6% and 20.1%, respectively (Ewing-Nelson & Tucker, 2021). “As

result, [DSPs] and their employers have lacked sufficient resources to deliver quality 

care through this crisis, which has disproportionately impacted the populations that 

make up most of their clients and residents: older adults (specifically those with certain 

underlying conditions), people with disabilities, and people of color” (Campbell, Del Rio 

Drake, Espinoza, & Scales, 2021)

Many respondents to the RFI articulated frustration and challenges with finding and 

retaining quality DSPs for their family members. The shortage of workers is projected

to continue to grow as the population ages and more people need assistance to 

remain independent

“We need more qualified paid caregivers for AUTISTIC ADULTS. For many adults 

diagnosed with Autism Spectrum Disorder (ASD), the mother has been 

their only caregiver since they aged out of the school system. There is no family 

help for me as I age nor for my adult autistic son as he ages. I am 

dependent on paid caregivers. Ideally, we need two in-home paid caregivers 

and right now we can’t find 1. American[s] do not want caregiver jobs 

for seniors or ASD. The majority of [certified nursing assistants] CNAs and 

[licensed practical nurses] LPNs do not know anything about Autism.”

-Response to the ACL RFI

CMS notes in its Long-Term Services and Supports Rebalancing Toolkit that for 

Medicaid, “the impact of HCBS workforce issues, such as workforce shortages and 

staff turnover, on the quality of service is direct and immediate” (Centers for Medicare 
RAISE Family Caregivers Act Initial Report To Congress Page 55

& Medicaid Services, 2020a). Workforce issues increase costs for Medicaid providers

and reduce the cost effectiveness and quality of care for beneficiaries. People with

IDD, for example, who experience high rates of turnover among their direct support 

professionals, have more emergency department visits, experience more instances of 

abuse and neglect, and have more injuries than people who do not experience similar 

turnover (Friedman C., 2020). The well-being of family caregivers is also affected whe

they find themselves re-training direct care workers, repeatedly introducing their family 

member to new person, or covering for “no shows.

The challenges of the DSP workforce extend beyond families who receive support 

through Medicaid-funded programs. Even for families with the ability to pay out of

pocket for some support, it is difficult to find and hire qualified personnel, and families 

quickly find that over time the expenses add up or increase. Third-party payers, such

as private insurance or Medicare, often do not reimburse for the types of services most 

often associated with family caregiver support (e.g., counseling, information, educatio

and, in most cases, respite), leaving many families caught between lack of availability 

and lack of affordability

When professional assistance from DSPs is not available to families, either because 

it is unavailable or unaffordable, caregiving tasks typically fall to family members—

sometimes with no notice and without consideration of their other responsibilities. This

has been particularly notable during the COVID-19 pandemic, when many people with 

disabilities lost access to LTSS and their family caregivers were expected to step in 

full-time to provide support, while still juggling all the other responsibilities in their lives

While the Build Back Better plan seeks to create more jobs in the direct care 

workforce, this is only a first step. Real change for DSPs and family caregivers on this

issue will involve action from multiple sectors working together to improve training, 

opportunities for small businesses that provide community-based services, public 

awareness campaigns that change the narrative around what it means to provide care, 

and more avenues for collaboration between paid and unpaid caregivers. Recognizing

that DSPs are an important complement to the efforts of family caregivers, the council 

developed Recommendation 3.9 specifically to strengthen the paid workforc
RAISE Family Caregivers Act Initial Report To Congress Page 56

In the statement below, council member James Murtha, shares his perspective as a 

person who benefits from family caregiving in tandem with the support of direct service 

workers. His story also highlights the importance and value of a person-centered

approach that achieves the critical balance of supporting the caregiver without 

prioritizing his or her needs over those of the person receiving support:

“I am a member of the council, a social worker, a disability advocate, and a loving son. I am 

also a quadriplegic and receive help from a state home care assistance program. We are lucky 

to live in a country that provides this. However, I need 24 hour care but only receive five hours 

per day. My situation, and that of others with complex physical disabilities, as well as the 

elderly, is destitute and getting worse.

Family caregivers can’t do it all. It really does take a village. Nearly all families taking care of a 

family member rely on hired caregivers. Family caregivers are the backbone of the caregiving 

workforce; hired caregivers are the connective tissues that keep the family together. Not enough 

government dollars are given to people like me who need significant help. As importantly, 

it is withheld from home care providers that employ and pay the caregivers we need. Home 

care providers are expected to pay insurance, taxes, Social Security, and unemployment for 

employees. After these expenses and paying their workers, care providers only make three 

dollars an hour for every client served. Fewer and fewer home care providers are participating 

with Medicaid. Caregivers are often untrained, turnover and quitting is constant, and make 

minimum wage. 

There is a growing caregiver shortage. The population of older adults, as well as people with 

complex physical needs is also growing. The caregiver shortage is critical. Without changes, 

soon it will be catastrophic. Families can’t do it all. During Covid, all my caregivers quit, and I 

had to live with my parents. My parents are in their late 60s. My mom has arthritis in her hands 

and my dad has a bad back. I live with the guilt of deteriorating their health and quality of life. 

The federal government and states must prioritize the most vulnerable in society. 

We give the minimum to the people who need the most. We must change our paradigm and shift 

our outlook on what it means to thrive and how we value others. We as a society must realize 

that if we choose to build a nation that protects and ensures quality of life for those in dire 

need, each of us will guarantee our very own quality of life will be protected and ensured when 

our needs are dire.”
RAISE Family Caregivers Act Initial Report To Congress Page 57

It’s Time to Include Family Caregivers in Systems and Policies

Congress chose the word “include” for the RAISE Family Caregivers Act because 

there exists a longstanding pattern of policymakers and health systems overlooking 

the voices and needs of caregivers. In the stories that follow, five female caregivers

wives, mothers, daughters—demonstrate the tremendous contributions they can and 

do make to support the well-being of their family members and the system of LTSS

Yet, too often, their presence and efforts are taken for granted without consideration 

of their needs and preferences. It is time for the perspectives and needs of family

caregivers to be included in policy development and decisions, care planning and 

delivery, and the design of research studies and data collection efforts

Individuals with IDD have a civil right to support, to live and fully participate in their 

communities throughout their lives. Because of the role that families continue to play in

the lives of their family members with IDD, they must be included as part of the system 

of support. Yet, Katie’s story below is not unique—too many families of people with

disabilities continue to be excluded from care discussions even when they will be an 

integral part of implementing the plan of care. Her story highlights both the importance

of ensuring family caregivers are considered when policies and practices that affect 

beneficiaries are proposed and the need for increased availability of promising and 

evidence-informed practices to support family members of people with disabilities. For

more, refer to Recommendation 2.4 and Recommendation 5

Katie is the mother of a 20-year-old son born with physical and 

intellectual disabilities caused by a rare disease. The factors of her 

son’s care have been constantly changing, meaning the caregiving 

process has changed as well. As her son’s primary caregiver and 

advocate, Katie is the one who deals with the medical professionals. 

Even with a background in health care, switching her son from a 

pediatric team to an adult one when he turned 18 was extremely 

difficult. Katie has encountered doctors who she feels do not listen 

to her and question how she responds to her son’s symptoms. She 

feels she needs to essentially interview every new doctor to see if their approach aligns with 

the health goals she has for her son, and she has learned to be very direct in stating her 

expectations. Without proper supports in place, Katie cannot step back from her caregiving role 

to be a mother. 

Due to her care responsibilities for her son, Katie had to move into a part time position at her 

job, taking a pay decrease and losing her leave. She and her husband have not been able 

to save for their future, and her husband has had to work multiple jobs to cover the costs of 

traveling to see medical specialists for their son. They cannot claim a tax break on these trips 
RAISE Family Caregivers Act Initial Report To Congress Page 58

because of her and her husband’s income level—she feels she is being punished by the system 

for working.

Katie’s son’s needs require a whole team of doctors, yet Katie has never been able to sit down 

with them as a team. She is constantly managing medical professionals, making sure everyone 

has the same information and is going in the same direction. Simply being able to meet with all 

her son’s doctors at once would save Katie time, money, and a lot of work, improving the quality 

of her and her family’s life.

Jeannette, a post-9/11 military spousal caregiver, had to leave her job in order to 

provide her husband with the caregiving support he needed. Even in the presence

of paid supports, she had trouble finding the assistance she needed. Her story is a

reminder of the value of volunteers and volunteerism as a means of augmenting the 

support family caregivers provide, and the importance of developing policies that 

enable caregivers to stay in the workforce and build a secure retirement. For more,

refer to Recommendation 3.6 and Recommendation 4

Jeannette’s husband returned from Iraq with Post Traumatic Stress 

Disorder, Traumatic Brain Injury, signs and symptoms of Chronic 

Traumatic Encephalopathy, and advanced bone and disc degeneration. 

His symptoms got worse over time, but Jeannette knew things 

were forever changed from the very beginning when he was easily 

angered, confused, and often called her to ask where he was. She 

knew that their marriage roles had changed – she was now the rock, 

the decision maker, and 100% in charge of their lives. 

Jeannette cared for her husband at home but found difficulty in balancing her work life and 

home life, and she ended up leaving her beloved job. Once she quit, she felt that others didn’t 

understand why she couldn’t manage both work and caregiving, and she felt discriminated 

against because she chose her husband over her career. Later, when she tried to find part-time 

employment, she found it very difficult to find organizations willing to provide the support and 

flexibility she needed. She felt that once potential employers learned about her husband, her 

caregiving role, and that she left her last job due to her care responsibilities, they just weren’t 

interested in giving her a chance to prove herself. 

Jeannette participated in the VA’s Caregiver Support Program, and while she did receive some 

basic care training, the program didn’t prepare her emotionally for the challenges of caring 

for someone who struggled with anger, memory issues, and someone who had a hard time 

comprehending the world around him. Sadly, Jeannette’s husband can no longer live at home. 

His care needs have exceeded what she can provide. She would like to find a mid-level care 

home for him to keep his service dog, but the VA only offers State Homes, where his dog won’t 

be allowed to live, and in which Jeannette fears she will no longer be considered a caregiver 
RAISE Family Caregivers Act Initial Report To Congress Page 59

even though she will still be deeply involved in his care. Jeannette says that, “being a caregiver 

is the loneliest job you will ever have, but it is also the most grateful job you will ever have.” 

Many people do not learn about caregiving until life circumstances change. This

means that new caregivers often do not know what kinds of assistance would help 

them or where to start looking for assistance. Sherry, a working spouse caregiver,

is an example of the importance of family caregiver assessments as a first step 

to developing a caregiver support plan and recommendations that support them 

to remain in the workforce, while also reducing the negative financial impacts that 

all too many caregivers experience. For more, refer to Recommendation 2.2 an

Recommendation 4.

Sherry is a caregiver for her husband, who was diagnosed with 

Parkinson’s disease. At the start of her caregiving journey, Sherry 

struggled to find caregiving communities, and it was difficult for 

her to share her concerns with others. However, once she made 

those connections, and found others that shared her feelings and 

experiences, she felt more supported. 

Sherry believes that policy makers need to realize that services for 

caregivers and care receivers are similar. She feels a focus on the care team would be helpful 

and those services should be viewed as part of a family wellness plan. Services that Sherry 

believes would be helpful to her as a caregiver include in-home therapy for her or her children, 

in-home bible study, and a health coach so she can maintain her own health. These supportive 

services would help her be the best caregiver she can be. 

Sherry feels that once you become a caregiver, your identity changes. In the beginning of 

her journey, she struggled with depression, as she felt there was a stigma attached to all the 

changes her new reality brought about – and that stigma made difficult decisions even harder. 

As a corporate executive, she felt torn between her professional responsibilities and the needs 

of her husband. She felt judged at work for missing meetings, having assignments given away, 

losing a board seat – all part of her own story of loss. She wishes her employer had incentives 

to go beyond workplace policy and look for innovative and flexible ways to support her. 

Ultimately, it took her 7 years and 3 employers to find a place that truly allowed her to work and 

be the caregiver she and her husband needed her to be. Caregiving is an expensive experience. 

Sherry worries about finances a lot – many caregivers struggle with bankruptcy and ruined 

credit. Sherry agrees that there need to be innovative solutions to prevent these detrimental 

impacts of caregiving to minimize caregiver burden and loss. 

Respite care provides short-term relief for primary caregivers. It can be just an

afternoon off or a break that lasts for several days or weeks. Despite the welldocumented value of respite, many family caregivers literally never get a break. Thi
RAISE Family Caregivers Act Initial Report To Congress Page 60

can be due to lack of awareness of respite options, the cost of respite, or even 

difficulty finding trusted providers. Abena’s story below underscores the importance

of both early identification of caregivers and, once they are identified and assessed, 

connecting them to high-quality, setting-appropriate and caregiver-defined respite 

services. For more, refer to Recommendation 1.3 and Recommendation 

Abena’s husband was diagnosed with a brain tumor in 2013, shortly 

after she became pregnant with their first child. Her husband lived 

with his tumor for a little over four years before passing away. Abena 

did almost everything for him, from managing his medication to 

coordinating appointments, to discussing his care options. When 

her maternity leave ended, she was working full-time. She wasn’t 

sleeping, taking breaks, or going to the doctor herself, something 

she said she didn’t even manage to do until her husband had passed. 

She was unable to maintain her high intensity role at work and had 

to be moved to another position.

Respite, giving her and her husband time together without the kids to process what was 

happening, would have been a huge break for her. Abena thinks a regular check-in would have 

been helpful from someone who understood her situation, such as other wives of brain tumor 

patients. Abena believes that she could be that person for someone else now. 

Abena sees herself as lucky for having her and her husband’s co-workers donate leave to them. 

However, she thinks employers need to be given a structure to offer caregivers options that fit 

their needs, so that the employee does not have to struggle to find a solution. 

Abena received training to take care of her husband, especially when he was undergoing 

chemotherapy and taking steroids. Towards the end of her husband’s life, Abena wanted to 

bring him home from the rehabilitation hospital. In order to do so, she was taught everything 

from how to get him out of bed to how to administer his medication. She thought she was being 

taught these things as a back-up, but when hospice began, she realized she was expected to 

be a full-time nurse. At that time, she had to leave her job altogether in order to care for her 

husband. Abena feels that she cared for her husband in the way she wanted. She feels she did 

the best she could with the options available to her, and it was an honor for her to care for him.

Almost a quarter of family caregivers are caring for more than one person, an 

increasingly common phenomenon known as multiple caregiving. Melissa and caregivers

like her, often juggle responsibilities and have to make hard choices about where to 

focus their attention, especially when travelling long distances to provide support

The council’s recommendations that caregivers—including secondary caregivers—be 

included in care coordination, and its call to increase access to supportive services, 
RAISE Family Caregivers Act Initial Report To Congress Page 61

have the potential to make a big difference for this growing population of caregivers. For

more, refer to Recommendation 2.3 and Recommendation 3

Melissa was the secondary caregiver for her father, who had Lou 

Gehrig’s disease, and is now the primary caregiver for her husband, 

who suffers from chronic pain. With her father, Melissa realized 

right away she was a caregiver as he was on a ventilator, needed a 

feeding tube, and required many hours of care. For her husband, her 

role as a caregiver was a more gradual realization. Melissa’s father 

lived three hours from her, so when she was caring for him, she was 

not around for her husband, and sometimes, it was hard not to feel 

as if she was neglecting one of them for the other. However, Melissa 

enjoyed supporting her mother in caregiving for her father because they both understood how 

the other was feeling.

The COVID-19 pandemic made it difficult for Melissa to care for her husband because nonmedical treatment was harder to come by. Melissa’s hours at work also increased, intensifying 

her need for services and supports. Living in a rural area, supports were already hard to come 

by under normal circumstances. Melissa feels something helpful to caregivers in rural areas 

would be bringing care to people rather than making them travel to receive care. 

Melissa feels that making caregivers aware of the supports they are eligible for and where they 

can access them, would make their job easier, as well as putting caregiver resources in one 

location to reference. Telehealth appointments have been very helpful for both Melissa and her 

husband, and Melissa is hopeful that they will continue beyond the pandemic.
RAISE Family Caregivers Act Initial Report To Congress Page 62

III. Existing Federal Approaches to 

Assisting Caregivers 

Over recent decades, a number of approaches have emerged to support family 

caregivers, including direct support programs that address a range of caregiver 

needs, single service approaches where specialists offer interventions that fill specific 

caregiving gaps, training and education initiatives aimed at increasing confidence and 

efficacy among caregivers, and peer-to-peer interventions that include counseling, 

training, and respite. Often, successful efforts begin in communities or states, as either

grass roots efforts or part of a demonstration project

In fact, existing federal efforts to support caregivers were often an attempt to bring to 

scale successful approaches tested at the state and local levels. A proven example of

this is the National Family Caregiver Support Program, which had its genesis in several 

successful state caregiver programs. Despite limited funding, since the passage

of the National Family Caregiver Support Act in 2000, a growing body of federal 

programs and initiatives have emerged to coordinate and disseminate information, 

best practices, and services for family caregivers. Congress’ call for a National Family

Caregiving Strategy—which is to be informed by the development of an inventory of 

existing federal programs—is an important step in the realization of a vision where 

caregivers across the nation can receive the assistance they need in a coordinated and 

efficient manner

Overarching Considerations of Effective Caregiver Support

While there are many ways to assist caregivers, the recognized first step involves 

understanding caregiver needs in relation to the care needs of the person receiving 

support (Refer to Recommendation 2.2). Without a systematic approach to assessin

the overall needs of the family, developing a comprehensive system of support for the 

caregiver is compromised, which, in turn, exposes the family caregiver to negative 

consequences linked to the caregiving experience (e.g., burden, stress, depression

poorer than expected health outcomes)

“There are so many complex things and processes that have to be followed and, 

when in the midst of a crisis, [it is] very difficult for even the most educated and 

proactive to figure [it] out. The lack of education in the medical field and even the 

hospital settings, where it seems to be so routine for staff, that fail to recognize how 

this is impacting a family as a human being. I feel that most medical doctors and 

those that may not care for the elderly patient or one with super special needs is 

not there. Everyone ‘assumes’ that all is done for a person when in assisted living, 

skilled nursing, etc. There is no understanding of how medications are handled and 

what a nightmare it is when you have a hospital visit and then have to transition 
RAISE Family Caregivers Act Initial Report To Congress Page 63

back to assisted living and hope and pray the paperwork transfers without a hitch 

without errors. I find the lack of empathy on this entire topic with the majority of 

medical staff and hospital staff appalling and so frustrating. They forget there is 

truly another person at the end of the conversation.”

-Response to the ACL RFI 

Over the past two decades there have been increasing calls from professional 

societies, advocacy organizations, and consensus committees for a standardized, 

universally available assessment of the family caregiver as an important component 

of a person- and family-centered care planning process. Thus, the development of

numerous approaches and tools focused on caregiver assessment have merged in 

recent years. Some are designed for specific populations. Others are designed t

be a comprehensive assessment of a variety of caregiving situations. Two evidencebased approaches to caregiver assessment are 1) the BRI Care Consultation used

with caregivers of adults with dementia and other conditions, and 2) a comprehensive 

caregiver assessment tool, the Tailored Caregiver Assessment and Referral (TCARE)

Caregiver assessments can take place in the home or a clinical setting—or in some cases 

over the phone or via telehealth. A typical assessment might involve a trained professional

or peer caregiver asking the family caregiver—in a non-judgmental way—about:

■ Their caregiving tasks

■ Their comfort level and confidence performing these tasks (including the use of or 

interest in using technologies related to caregiving)

■ Their overall emotional and physical well-being

■ Their own goals

■ Their ability and willingness to continue to be a caregiver

■ The types of supports they feel would be most helpful to them

■ Their legal and financial needs

■ The levels of paid and unpaid support they currently have

■ Their basic eligibility for existing services and supports (level of impairment, 

household or individual income, VA status, etc.

The answers to these questions form the basis of a culturally sensitive plan for helping 

the caregiver continue to provide support. Interventions can involve education and

counseling, respite opportunities, soliciting other family members to assist with caregiving, 

role modeling caregiving for the caregiver, and fostering the idea that the family caregiver 

is not alone. As noted previously, caregiver assessments have the potential to improve

caregivers’ understanding of their needs, as well as determine their ability to continue to 

provide support. When implemented across populations, they can provide meaningful data

about systemic caregiving needs and identify gaps in programming
RAISE Family Caregivers Act Initial Report To Congress Page 64

Caregiver Assessment: A Tool for Understanding 

What the Caregiver Needs

Caregiver assessment is a systematic process of gathering information about (1) 

the caregiver’s challenges, needs, strengths, and resources; (2) the needs of the 

person receiving support; (3) the caregiver’s ability to help meet those needs; 

and (4) caregiver interactions or relationships with health care teams and/or 

LTSS systems. The findings of the assessment form the basis of a customized 

caregiver support plan and can include care consultation, training, respite, and 

other supports (Feinberg & Houser, 2012).

For further discussion about the important role of caregiver assessments in 

supporting family caregivers, refer to Section III. Existing Federal Approaches to 

Assisting Caregivers.

Comprehensive Direct Support Programs

Across the federal government, there are programs, supports, and other interventions 

designed to support family caregivers. One proven approach to directly supporting

caregiving is with a model of programming that offers multiple, flexible service options 

that are responsive to caregiver needs as they change over time (Avison, et al., 2018

Typically, these models include information and/or training for caregivers, assistance 

with navigating services (including understanding options for supports), counseling 

and/or training of community mental health professionals to better understand and 

address caregiver-specific needs, and respite care. Other ancillary services may

include employment assistance, transportation, or advice on accessing services 

and supports. These direct support models also can support indirect services and

infrastructure development through research and policy development that leverages 

their work with family caregivers

The federal government funds three specific programs that are structured to directly 

address a broad array of caregiver issues for eligible family caregivers:

■ The NFCSP, established in 2000 and operated by ACL, provides grants to states 

and territories that fund Area Agencies on Aging to provide a range of services that 

assist family and informal caregivers to care for their family members at home for as 

long as possible. Services include

◆ Information for caregivers about a range of supports, resources, and services

◆ Assistance in gaining access to services that help connect caregivers with 

services offered by private, public, and voluntary agencies or through insurance
RAISE Family Caregivers Act Initial Report To Congress Page 65

◆ Caregiver education/training, individual counseling, and support to help 

caregivers better manage their responsibilities and cope with the stress of 

caregiving

◆ Respite care provided by trained caregivers delivered at home, at adult day 

programs, or in other facilities, so that caregivers can rest or attend to their own 

needs

◆ Supplemental services such as transportation, home modifications, and medical 

or incontinence equipment

■ The VA Caregiver Support Program (CSP) offers an array of services to family 

members and friends who care for veterans, including on-line courses, face-to-face 

classes, telephone support, and peer support

■ These services are offered in addition to the support provided to families and 

caregivers across VA by clinicians as part of a veteran’s care. Every VA medical

center has dedicated Caregiver Support Program staff who assist with information 

and referrals to these programs. Many of the following programs are also available

to veterans who serve as the family caregiver to a non-veteran. These programs

include: 

◆ A 6-week online workshop for caregivers of veterans of all eras, with text support

◆ Caregiver self-care courses

◆ Website and Caregiver Support Line

◆ Telephone education and support groups

◆ Peer support

■ Kinship Navigator Programs are funded by the Administration for Children 

and Families (ACF). These services assist kin and grandparent caregivers in

communities across the nation in learning about and accessing programs and 

resources to meet the needs of the children they are raising, to provide help for the 

family as a whole to safeguard stability, and to promote partnerships among public 

and private agencies (Child Welfare Information Gateway, 2019). These federal

programs are models that show promise for holistically supporting the needs of 

family caregivers. A comprehensive evaluation of the NFCSP conducted from 2016

to 2018, found that “caregiver use of the services made available by the NFCSP 

helped them continue in their role for longer periods, an important factor in delaying 

or preventing the institutionalization” (Avison, et al., 2018
RAISE Family Caregivers Act Initial Report To Congress Page 66

Kinship Navigators Help Kin and Grandparent Caregivers 

Navigate a Path to Success

Kinship navigator program seek to provide information and offer referral and 

follow-up services to grandparents and other relatives raising children, to link 

them to the benefits and services that they or the children need. SHARE New 

Mexico is a successful example of an effective kinship navigation program 

embedded within a more comprehensive family caregiver program. SHARE 

serves as a “first stop” to connect caregivers with existing resources such 

as family support, trauma assistance, support groups, legal aid, benefits 

assistance, and community resources. 

Meanwhile, in an evaluation of the suite of caregiver services offered at the Atlanta VA 

Health Care System, the caregiver support programming was found to be beneficial 

to caregivers through such mechanisms as increased knowledge of dementia, greater 

social support, increased self-efficacy to care for the veteran, behavior modification, 

and an emphasis on caregiver well-being (Biello, et al., 2019

“With very limited funding under the National Family Caregiver Support Program in 

the state of [redacted], our Area Agencies on Aging have only been able to serve a 

very small and limited amount of the thousands of family caregivers in our state.” 

-Response to the ACL RFI

The significant challenge, as noted, relates to scalability. Each of these promising

programs limit eligibility to specific caregiver populations—in this case, Veterans, 

adults and/or their caregivers, or grandparent caregivers. Millions of family caregivers

do not fall into these groups and do not have access to a comprehensive direct 

support caregiver program. Instead, they are left to fashion their own support systems

while juggling the needs of the family member they care for and their own well-being. It

is worth noting that even within the programs, access is not equally distributed. There

are often lengthy waitlists for many of these programs and significant unmet need 

around the country for services for individuals who meet eligibility criteria

Single-Service Approaches 

An alternative to the wrap-around model of caregiver support is the use of stand-alone 

programs—such as respite care, counseling, or support groups—that address discrete 

caregiver needs. A key example of an effective single service is the Lifespan Respite

Care Program, which is administered by ACL. The program helps build and sustain

“systems of accessible, community-based respite care for family caregivers of children 

and adults of all ages with special needs.”
RAISE Family Caregivers Act Initial Report To Congress Page 67

Respite Care: An Essential Caregiver Support

While caregivers report significant emotional and spiritual rewards from the 

caregiving experience, they also experience physical and emotional issues 

as a result of the demands of their caregiving responsibilities. The concept of 

respite as a supportive service is based on the premise that giving caregivers 

a break from daily, ongoing caregiving responsibilities will benefit their 

physical and emotional health and enable them to provide caregiving support 

for longer. Despite the benefits, respite remains an underutilized support for 

family caregivers. To advance understanding of the value of respite, the ARCH 

National Respite Network and Resource Center convened a work group in 

2015 to develop a research agenda for respite care. The work group defined 

the term “respite care” as: 

“Respite is planned or emergency services that provide a caregiver of a child 

or adult with a special need some time away from caregiver responsibilities 

for that child or adult, and which result in some measurable improvement in 

the well-being of the caregiver, care receiver, and/or family system.”

For more information on currently available respite care programs, refer to 

Section III. Existing Federal Approached to Assisting Caregivers.

This is important because respite has been found in several studies to improve family 

caregiver resilience and benefit their physical and emotional health. One study found

that respite can improve resilience in caregivers of people living with dementia, which 

is often a particularly intense form of caregiving, especially when people are in the 

advanced stages of the illness (Roberts & Struckmeyer, 2018)

Single-service interventions, like respite care services, benefit from greater flexibility 

and adaptability to changing environments. However, many caregivers experience

barriers to accessing these services. The COVID-19 pandemic has increased

awareness among families of the need for respite at the same time that, due to risk of 

infection for both care providers and the people receiving support, many services have 

suspended operations. Recognizing the need for increased awareness of the value of

respite and greater access to services, the council developed Recommendation 3.2,

which specifically focuses on expanding use of respite care

“I have heard the phrase ‘I wish I had known about you sooner’ countless times 

from exhausted family caregivers.”

-Response to the ACL RFI
RAISE Family Caregivers Act Initial Report To Congress Page 68

Training and Education

A significant body of research has shown that caregivers need education and 

information to be more successful in their roles. Family caregivers need trusted

information on a range of topics, from how to perform functions necessary to provide 

care (e.g., dressing changes, managing pain, etc.), to how to deal with behaviors (

the case of dementia), to managing stress and emotional challenges that can come 

with being a caregiver

A successful example of the effectiveness of caregiver education and training at the 

federal level is ACL’s Alzheimer’s Disease Programs Initiative (ADPI). Caregivers of

people living with dementia receive training to manage the complex emotions and grief 

associated with dementia and to manage challenging behaviors. ADPI is dedicated

to meeting this challenge by developing what is known as “dementia capability” in 

states and expanding it in communities. This effort involves funding community-based

projects that include training and education specifically for family caregivers of people 

living with dementia. The program seeks to expand the network of local knowledge

and support by training members of the surrounding community in how to recognize 

the signs of dementia and interact with people living with dementia

To date, ADPI has trained a wide array of individuals, including paid caregivers, social 

workers, attorneys, financial professionals, law enforcement, first responders, food 

service workers, and small business owners. Together, this expansion of communitywide understanding of the needs of people living with dementia and their caregivers

provides a foundation for more effective systems of services and supports

Training is not the only effective method of educating caregivers so they can be 

successful in their role. Outreach in the form of educational materials also plays

an important role. The Consumer Financial Protection Bureau produces Managing

Someone Else’s Money guides for the millions of family caregivers who manage money 

or property. Since 2013, when the guides became available, more than 1,411,03

copies of the guides have been requested for distribution

Education and training is an area ripe for development because caregiver research 

has shown “that education and skills training can improve caregiver confidence in 

managing daily care challenges” (National Academies of Sciences, Engineering, and 

Medicine, 2016). Increased mastery can boost caregiver confidence, which in turn can

lead to reductions in stress and perception of burden

Peer-to-Peer Approaches

Peer support models pair individuals new to a caregiving situation with someone 

who has previous experience in the role. Nearly a third of family caregivers have

been providing support for five years or more years (AARP and National Alliance 
RAISE Family Caregivers Act Initial Report To Congress Page 69

for Caregiving, 2020). These family caregivers have amassed significant knowledge

and expertise that is different from the kinds of support formal systems offer. I

many cases, these experienced family caregivers are ideally positioned to lend their 

perspectives and expertise to others with less experience in the role. Peer-to-peer

supports can help to reduce reliance on the formal system; as such, it is effective for 

where there may not be many formal supports available

For people with IDD, the role of family is unique, and often central in the support and 

care provided across the lifespan. From 2012-2017, ACL funded the Community

of Practice for Supporting Families of Individuals with Intellectual & Developmental 

Disabilities to discover integrated, flexible, and innovative strategies for supporting the 

entire family, rather than focusing solely on formal services. One of the key approaches

identified was peer-to-peer support. One of the reasons for this is that parents of

individuals with IDD trying to identify and access appropriate services often find the 

systems of support complicated and overwhelming. Peer support enables families to

navigate systems more effectively, learn from the experiences of other families, feel 

less alone, and gain hope, ideas, and information

Caregiver peer support is not readily available in existing service delivery models. One

notable federal exception is the Caregiver Peer Support Mentoring Program which is 

available as part of VA’s Caregiver Support Programming

Supporting Caregivers in Indian Country: Insights from the ACL 

Title VI Programs

The OAA established grants for community planning, social services, research, and 

development for older persons. In 1978, the Act was amended to establish Title VI

programs to provide nutrition and supportive services for American Indians, Alaska 

Natives, and Native Hawaiians (AI/AN/NH). A further expansion added caregiver

support services to Title VI, including support for grandparents and other elders raising 

children. ACL administers the Title VI programs with recognition of the strengths

and resiliency of Native elders and with respect for Native communities’ sovereignty, 

culture, and self-determination. A core value of the Native American Caregiver Support

Services, as expressed by Tribal leaders, is that the program should not replace the 

tradition of families caring for their elders. Rather, it provides support that strengthens

the family caregiver’s role

In FY2020, Congress authorized $2.23 billion for ACL under the OAA. Despit

significant need, only half of one percent of that figure (just $10.3 million) was allocated

to support Native American family caregivers under Title VI. Currently, ACL oversees

233 individual grants to over 400 Tribal organizations across the nation for Title VI 

caregiver services; typical services offered by these grants include: 
RAISE Family Caregivers Act Initial Report To Congress Page 70

■ Information and outreach on topics related to providing care, such as insurance 

coverage, dementia, diabetes, and substance misuse. In 2018, the program

provided approximately 199,495 contacts to provide information on services and 

programs to 42,198 unduplicated AI/AN/NH elders and their families (Administration 

for Community Living, 2018)

■ Access Assistance. Examples include home visits to assess the needs of both

caregivers and recipients of care, help with accessing insurance, Medicare, or 

medical services and referrals to local health clinics or other medical providers

■ Counseling, support groups, and training. In 2018, the program provided 125,480

units of assistance to 18,346 unduplicated AI/AN/NH elders (Administration for 

Community Living, 2018)

■ Respite care, most typically in the form of payments to a respite care worker (often 

a family member) for a certain number of hours per week or per month. In 2018,

the program provided 245,586 units of respite services to 3,280 unduplicated AI/

AN/NH caregivers caring for elders or grandparents caring for their grandchildren 

(Administration for Community Living, 2018)

■ Supplemental services such as supplies and equipment available through lending 

closets, for example, that support them in their caregiving roles

A nuanced understanding of cultural beliefs and values toward caregiving in Native 

communities can assist providers of supportive services to integrate those values 

into services and demonstrate cultural humility and respect. This, in turn, can help

AI/AN/NH caregivers feel their values and beliefs are respected, improving trust and 

increasing uptake of beneficial supports. Since 2016, an evaluation team has been

conducting a three-year study of ACL’s Title VI programs to better understand how 

Tribal organizations operate their Title VI programs and to measure and document the 

impact of the programs

“You never know how wonderful respite is until you don’t have it. 

And you know, I never knew, so I just adjusted my time and my life to caring for 

my husband. But now to have it, oh it’s so lovely.”

-Tribal elder comment during a focus group as part of the ACL Title VI Evaluation

Year 3 of the evaluation focused specifically on caregiver support services, including 

support for grandparent and kinship caregivers. The evaluation used a mix of

information that grantees already collect, as well as new sources of information to 

describe the implementation and outcomes across services. During site visits held

in March, April, and May of 2019, the evaluation team conducted focus groups and 

interviews to understand caregivers’ experiences with the program, including met 

and unmet needs related to spirituality; social connectedness and isolation; physical, 
RAISE Family Caregivers Act Initial Report To Congress Page 71

mental, and emotional health and wellness; and independence and quality of life. The

evaluation and focus group findings revealed that:

■ Caregiving, including raising grandchildren, is a rewarding, yet challenging, 

experience for members of AI/AN/NH communities

■ Many caregivers do not self-identify as caregivers and as a result, may not consider 

themselves eligible for services

■ When services are received through Title VI, they provide important support to 

improve the caregiver’s overall quality of life

■ Many caregivers view their Title VI program’s services holistically and often do 

not distinguish between services specifically intended to support caregivers in 

comparison to services intended to support elders. For example, Title VI-supported

nutrition and supportive services offered to elders often supported caregivers in 

their caregiving role(s)

■ Many caregivers, including those already receiving some services, were not 

aware of the breadth of services available or had only recently become familiar 

with the program

AI/AN/NH families have a strong tradition of cultural emphasis on in-home care, 

respect for elders, and community. Yet various forms of historical trauma are significant

factors in the lives of Native families, and this history shapes how decisions are made 

to access services. Funding and delivering supports that recognize and respect the

dynamic nature of the caregiver/person receiving support relationships in Native 

communities is critical for the effective delivery of services to assist them. The final

report of the evaluation will be released in 2021 and will be available on the Services 

for Native Americans (OAA Title VI) webpage. ACL is using the preliminary findings to

refine program delivery, most recently in developing tools that Tribal organizations can 

use to improve data collection and stakeholder communication

To review an overview of the Year 3 evaluation, refer to Evaluation of the ACT Title 

VI Programs Year 3 Interim Report. For more information on supporting the needs of

caregivers in Native communities, refer to LTSS Research: Annotated Literature Review 

Caregiver Support in Indian Country. A series of case studies describing AI/AN/NH

caregiver support programs at six locations is available on the CMS website

Inventory of Federal Caregiver Support Programs and Initiatives

In addition to developing recommendations to support family caregivers, the RAISE 

Family Caregivers Act called for the council to develop a comprehensive inventory of 

federal programs that assist family caregivers. In 2020, the council embarked on an
RAISE Family Caregivers Act Initial Report To Congress Page 72

information gathering effort to begin developing such an inventory of federal programs 

that provide some form of direct or indirect assistance to family caregivers

Information-Gathering Process

Members from both the Family Caregiving Advisory Council and the Supporting 

Grandparents Raising Grandchildren Advisory Council representing federal agencies 

responded to a call for information from the ACL Administrator. Each Federal counci

representative was responsible for surveying his or her home institution to gather 

specific knowledge important to caregivers and their families and communities, and 

the staff and organizations who care for those caregivers. Council members also

provided referrals to agencies not represented on the council, such as the Treasury 

Department, to ensure a broad collection of information. When complete, the council

will use this information to increase transparency and improve alignment of caregiving 

support efforts across the federal government while at the same time avoiding 

duplication of effort and the creation of gaps in service when developing the National 

Family Caregiving Strategy

As of May 2021, the council had collected information from the following agencies:

■ U.S. Department of Health and Human Services (i.e., multiple operating divisi

■ U.S. Department of Educati

■ U.S. Department of Lab

■ Consumer Financial Protection Bureau

■ AmeriCorps

■ U.S. Department of Veterans Affai

Overview of Findings

Within the responses from these agencies, as expected, there was considerable 

variability in how agencies defined support to caregivers, program scope, level of 

administration, services provided, and targeted consumers. In fact, one of the main

revelations of the inventory is that there does not exist across the federal government 

a definition of what a caregiver is, nor are there clear definitions of what constitutes 

a program, as the GAO previously noted. Some agencies referred to collections of 

resources as “programs,” where others used to the same term to describe multibillion-dollar efforts that addressed a range of caregiver needs
RAISE Family Caregivers Act Initial Report To Congress Page 73

The inventory process identified 50-plus total programs, although not all federal 

agencies participated. Three programs funded by the federal government were

identified as ones that are holistically caregiver-centered and provide an array of 

services for a wide range of caregiver needs: 

■ ACL with its National Family Caregiver Support Program and Lifespan Respite 

Care Program

■ The Veterans Health Administration’s Caregiver Support Program

■ HHS’ Administration for Children and Families (ACF) Kinship Navigator Program

However, because by Congressional mandate each of these programs is limited to 

a subset of the population linked to the mission of the agency, the reach of these 

programs is limited. In addition, despite identifying a range of programs that offer

some level of support to family caregivers, in the initial review, the council was not able 

to assess or measure to what extent those programs met the existing needs of the 

nation’s millions of family caregivers

Different congressional authorities and legislative priorities have created a piecemeal 

approach to various aspects of caregiving. There are no programs that cover the

broad array of supports for caregivers of people with disabilities of all ages. In other

ways, the piecemeal approach has led to overlaps between disparate programs

For example, six separate programs operated by three different federal agencies 

address—to some degree—the needs of rural caregivers. The programs, such as

the Rural Health Care Services Outreach Program, a series of grants funded by the 

Health Resources and Services Administration (HRSA), tended to address isolation, 

much-needed improvements to care delivery, and access to timely quality care in rural 

settings. However, it was not clear on initial review which of these efforts included

practical resources that might benefit, for example, a rural caregiver in need of 

transportation to a medical appointment—an important challenge for rural caregivers

Nor were any programs identified in 2020 that addressed the pressing need among 

rural individuals for improved telecommunications and broadband access and 

increased digital literacy

In addition, several agencies identified person-centered initiatives and programs. An

example of this is the Patient Listening Sessions offered by the U.S. Food and Dru

Administration (FDA). Programs such as this are not aimed specifically at caregivers,

but caregivers are important stakeholders who benefit from their existence. If those

person-centered services were removed, it is likely that more tasks would fall to the 

family caregiver
RAISE Family Caregivers Act Initial Report To Congress Page 74

 “The bureaucracy is a stone wall that [family caregivers] don’t know how 

to climb, and there is no one to teach them. Hard earned money is spent 

when a grant is available. Services go unused. The ailing family member 

doesn’t receive the most care that they could receive because the family 

caregiver is left alone to find their way, blindfolded, exhausted, scared, and 

guilty that the one they love is depending on them and they aren’t able to 

find the help that they suspect is out there—somewhere.” 

– Response to the ACL RFI 

In sum, the council found that the federal government provides some level of support 

to family caregivers. However, this figure belies the fact that one of the most commonly

cited concerns of family caregivers is the lack of consistent government support. This

appears throughout the literature and in the RFI and reflects the experience of multiple 

council members and public participants in council deliberations. Moreover, the

existing patchwork of family caregiver programs is not flexible and culturally sensitive 

enough to address the needs of diverse populations, nor the size of the caregiving 

population. This was particularly evident in RFI comments indicating caregivers are

not aware of existing programs or do not feel existing programs are flexible enough to 

meet their needs

The programs identified during the information-gathering process were diverse in size, 

scope, and mission. There also appeared to be four root causes for the development

and maintenance of federal caregiver support efforts:

■ Caregiver specific funding was authorized or mandated by way of legislation

■ Caregiver support programming was developed because it was wrapped into a set 

of services and supports that addressed the needs of the given population

■ Caregiver support was an area of interest that was through specific funding lines as 

demonstration projects, or through research grants

■ Caregiver support education was considered so critical that the organization 

developed services or educational strategies within existing budget lines

Because of these foundational disparities, the programs identified rarely appeared to 

be holistically caregiver-centered in their design. Rather, the support of the caregiver

was often a secondary focus of the effort. For example, the programs administered by

HHS focus on health care or social services, even though some services to caregivers 

are available. Programs administered by the Department of Education, focus, as one

would expect on childhood education. There does not appear to be a unifying set of

definitions of caregiving or of ways of measuring caregiver needs and tracking efficacy

As previously noted, there is no consensus on the statistical prevalence of caregiving

This suggests that there are differing perspectives across federal agencies of the need 

for interventions to support family caregivers
RAISE Family Caregivers Act Initial Report To Congress Page 75

These disparities create dissonance between existing programs, which reduces the 

effectiveness of broad caregiver support efforts. A summary comparison of the list

of submitted program descriptions against the five priority (recommendations) areas 

identified by the council and adopted in November 2020 reveals significant gaps 

in programs and initiatives that focus on increasing awareness of family caregiving 

and those that address its related financial challenges. At the same time, while there

were a relatively robust number of programs that appeared to conduct research or 

engage in data collection about caregiving, there does not appear to be coordination 

across these efforts or a consistent mechanism for information sharing. Finally, while

the greatest number of programs offered services and supports to assist caregivers, 

the anecdotal findings of the RFI suggest that those services are difficult to access 

and many caregivers do not know they exist, suggesting a need for a mechanism for 

national coordination of information about services and supports, similar to the Kinship 

Navigator programs, described here

In addition, funding mechanisms also varied considerably, which can affect 

administrative flexibility. Some of the federal efforts, such as the National Family

Caregiver Support Program, are funded by way of public law and legislative authority

Other organizations appear to have developed pathways within their operations to 

pursue supports and strategies that have been found to be important and effective 

within a unique population served by the agency or within of the area expertise of the 

agency. An example of this is the Family Support Technical Assistance Center, funded

by the Substance Abuse and Mental Health Services Administration, which provides 

support to family and caregivers of children who experience serious mental illness and/

or substance use disorders

“Although there are many government agencies at all levels whose 

missions are to provide support, the reality is that the needed support is not there. 

I have checked online resources and have contacted various agencies but 

ultimately find myself isolated without support.” 

-Response to the ACL RFI

Most of the programs identified were modest in size and funding. Only three agencies

offered programs that focused specifically on the needs of the caregiver as a primary 

driver of program design: 

■ ACL’s NFCSP and Lifespan Respite Care Program

■ The Veterans Health Administration’s Caregiver Support Program

■ HHS’ Administration for Children and Families’ (ACF’s) Kinship Navigator Program

Because by congressional mandate each of these programs is limited to a subset of 

the population linked to the mission of the agency—the reach of these programs is 
RAISE Family Caregivers Act Initial Report To Congress Page 76

limited. Funding for these programs is also limited. This fragmentary and disparat

approach creates missed opportunities for more comprehensive support that comes at 

significant risk to the ability of family caregivers to support their family members over 

time. It also hampers the ability to develop and evaluate best practices for caregiver

support because most existing programs focus on populations defined by specific, but 

disparate factors such as disease (e.g., cancer caregiving), Medicaid status, age of th

caregiver or person receiving care (National Family Caregiver Support Program). These

categorizations limit the ability to collect data that reflects the true complexity and 

heterogeneity of family caregiver needs

A significant limitation of the information-gathering process was the fact that even 

within specific agencies, not all programs were easily identifiable as direct or indirect 

sources of support to family caregivers. It quickly became clear to ACL staff that

developing the inventory would necessarily be an iterative process as awareness 

increases across the federal government about systemic information gathering as a 

necessary step in developing programs that support family caregivers. For this reason,

the Inventory of Federal Caregiver Support Programs and Initiatives will be updated 

over time with updates provided to the council

The Interplay between Family Caregiving and the Medicaid and 

Medicare Programs

Two of the most significant and well-known programs that assist—or have the potential 

to assist—family caregivers are Medicaid and Medicare. The RAISE Family Caregivers

Act calls for an analysis of the relationship between federal programs and caregiving

Specifically, the statute calls for “an evaluation of how family caregiving impacts the 

Medicare program, the Medicaid program, and other Federal programs” (RAISE Family 

Caregivers Act of 2017, 2018)

The passage of Medicare and Medicaid in 1965 created health coverage systems for 

adults over age 65 and people with low income, and later for people with disabilities

Prior to Medicare, only about half of older adults had some type of hospital insurance 

(Moon, 1996). The program was expanded in 1972 to cover certain people under age

65 who have a long-term disability. Today, 60 million people (18% of the population)

receive Medicare benefits either through Medicare’s traditional fee-for-service 

program, or through Medicare Advantage plans, which are offered by private insurance 

companies that contract with Medicare

Medicaid & Caregiving

As previously noted, Medicaid is the primary payer of LTSS, covering just over half 

of all spending for such services and supports in the nation (Murray, Tourtellotte, 

Lipson, & Wysocki, 2021). Medicaid is administered as a joint federal-state program

between the federal government and individual states, the District of Columbia, and 
RAISE Family Caregivers Act Initial Report To Congress Page 77

the territories. According to the February 2021 Medicaid & CHIP Enrollment Data, 74.

million people were enrolled in Medicaid (Centers for Medicare & Medicaid, 2021)

Although the federal government pays a portion of Medicaid costs, individual states 

administer and operate the program within federal guidelines. Each state’s program

is unique; they differ from one another depending on beneficiary demographics, 

program goals, appropriations, revenues, and priorities of the specific state. To qualify

for Medicaid, individuals must meet certain categorical and financial requirements

Eligibility for specific long-term services and supports is then determined based on 

functional requirements of the individual (Centers for Medicare & Medicaid Services, 

2020b). These criteria differ by state. According to the Medicaid and CHIP Scorecard

some states have chosen to deliver Medicaid benefits and additional services through 

managed care delivery systems. States may also use statutory authorities to offer

coverage or extend specific benefits to a target population. This variability has a

significant impact on family caregivers trying to navigate the health care system

Most Medicaid-funded efforts to support family caregivers are through home and 

community-based services (HCBS). There are a number of Medicaid mechanisms

by which states can directly or indirectly support Medicaid enrollees and their family 

caregivers. These vary considerably by state and can include

■ Managed care plans

■ Health homes

■ 1915(c), 1915(j), 1915(k), and home and community-based services waivers

■ The section 1915(i) State Plan Home and Community-Based Services benefit, 

■ 1115 demonstrations

■ Money Follows the Person (MFP) demonstration grants

States can also establish specific policies relating to caregiver support, such as 

requiring caregiver assessments or offering referrals to services that can provide 

practical assistance to the caregiver, such as respite care (Aufill, Burgdorf, & Wolff, 

2019). “Consumer directed” or “self-directed personal assistance” benefits can be

provided under these programs and demonstrations, and can also be provided under 

section 1915(j) of the Social Security Act, and under Home and Community-Based 

Attendant Services and Supports State Plan Option (Community First Choice) under 

section 1915(k) of the Act; these sections can also allow a beneficiary to hire family 

members as paid caregivers. However, these are options provided to states and there

is widespread state variation in adoption of these Medicaid options and benefits (Aufill, 

Burgdorf, & Wolff, 2019)

Yet, despite the availability of multiple mechanisms within Medicaid to assist family 

caregivers, in reality, access to HCBS through Medicaid that enable family 

caregivers to continue to provide care is limited. Caregivers, including respondents
RAISE Family Caregivers Act Initial Report To Congress Page 78

to the RFI and members of the council, report confusion, frustration, and stress 

associated with understanding program and application processes and accessing 

Medicaid-funded services

“When it got to a point that I could no longer afford to pay for 24/7 care, I begged 

Medicaid and local [redacted] representatives to help me keep him home where he 

was happy and thriving. But they said that, in [redacted], if he wanted to remain on 

Medicaid, he would have to go into a nursing home. They were willing to spend all 

that money to institutionalize him, when just helping me financially would have kept 

him home. We already had a hospital bed and all the other needed paraphernalia....

So, my father unhappily spent the last year and a half of his life in a nursing home.” 

-Response to the ACL RFI

Many families find it difficult to access Medicaid waiver services even when they do 

qualify. Because funding for Medicaid waiver programs permits states to determine

the number of participants they will serve, and is in part dependent on appropriations 

within state budgets, there are considerable budget gaps which lead to lengthy 

waitlists and difficulties obtaining approval for these expanded services

According to the Kaiser Family Foundation, 820,000 people are on waiting lists for HCBS 

waivers across the nation, but because of differences in how states target populations, 

these waiting lists are not uniform (Musumeci, O’Malley Watts, & Chidambaram, 2020)

It is also important to note that for individuals with IDD, waiting lists may be a particular 

challenge in some states. The average wait time is more than three years but can be

decades for some individuals and their families (Friedman C., 2017

Even though federal regulations stipulate that Medicaid service plans cannot compel 

unpaid assistance by family members, in practice, many people who qualify for 

certain Medicaid services may encounter barriers to access because of definitions 

incorporating the presence of a family caregiver. For example, Florida’s “medical

necessity” definition allows MCOs to deny Medicaid-funded services on the grounds 

that those services are provided for caregiver convenience. This definition has been

cited in legal cases to justify reduced levels of services, even when the “convenience” 

is the caregiver’s need to maintain employment (Carlson, 2016). At least twelve other

states have similar provisions in their state’s Medicaid medical necessity definitions, 

creating significant barriers to family caregivers in accessing respite care, maintaining 

employment, and ensuring their own well-being (Carlson, 2016)

While managed care plan regulations acknowledge family caregivers, and about half 

the states now provide LTSS to some Medicaid beneficiaries through managed care 

plans, at present, caregiver support services are limited (Reinhard, Feinberg, Houser, 

Choula, & Evans, 2019). Managed care plans can voluntarily provide so called “value
RAISE Family Caregivers Act Initial Report To Congress Page 79

added services” to their enrollees, such as benefits counseling and behavioral health 

counseling for family caregivers, but it is worth noting that the cost of those services 

are not considered in payments to plans under the regulations at 42 CFR 438.3(e)(1

One program that does directly benefit caregivers is spousal impoverishment 

protection. While protections for spouses of people living in nursing homes have been

available for some time, it was only in 2014 that they were extended to the spouses 

of all people receiving Medicaid services in the community. A limitation of the program

is that states can only use the spousal impoverishment protections when they are 

authorized by Congress. Currently, that extension is temporary. It remains to be see

if family caregivers of the future will benefit from this protection, (The Consolidated 

Appropriations Act, 2021 (enacted on December 27, 2020) extended the HCBS 

spousal impoverishment protections through September 30, 2023). The amount of

assets that are protected vary by state; according to the 2020 Long-Term Services and 

Supports State Scorecard, only seven states permit a spouse to keep the maximum 

amount of income and assets allowed under federal guidelines (AARP, 2020)

Few states provide access to caregiver training or education in their HCBS programs 

(Friedman, Caldwell, Rapp Kennedy, & Rizzolo, 2019). Despite federal regulations

requiring caregiver assessments in some HCBS (i.e., 1915(i) state plan benefits

if unpaid caregivers will be relied upon to implement any elements of the personcentered service plan), the 2020 Long-Term Services and Supports State Scorecard 

found that while 41 states now conduct assessments of family caregivers, “most 

of these family caregiver assessments happen in smaller family caregiver support 

programs rather than in the broader Medicaid programs” (AARP, 2020)

Another consideration regarding support of caregivers is states’ movement toward 

providing enrollees options to receive services in home and community-based 

settings rather than in institutional settings. While historically, long-term services and

supports have been provided in institutional settings, recent decades have seen a 

shift toward providing more HCBS options. The process of shifting the proportion

of expenditures away from institutional settings and toward HCBS is a process 

known as “rebalancing.” Federal initiatives including the MFP demonstration and

the Balancing Incentives Program (BIP); rulings such as the 1999 Supreme Court 

decision in Olmstead v. L.C., which decreed that individuals with disabilities must 

have equal access to receipt of community-based services; and regulations around 

services provided through Medicaid authorities that require settings to be truly 

community-based, contribute toward supporting a movement of services toward 

home and community-based settings. This shift toward HCBS and person- and familycentered care has also allowed opportunities for Medicaid enrollees to receive care

from providers they are familiar with, including, in certain situations, family members 

(Centers for Medicare & Medicaid Services, 2020a)
RAISE Family Caregivers Act Initial Report To Congress Page 80

NASHP Issue Brief: Medicaid and Family Caregiving

To more fully examine how flexibilities to states as part of rebalancing impact family 

caregiving, especially in light of opportunities provided by CMS during the COVID-19 

pandemic, researchers at NASHP developed, Medicaid Supports for Family Caregivers

In this 2020 report, NASHP noted family caregivers play an important role in states’ 

rebalancing efforts to help Medicaid enrollees remain in their homes and communities 

rather than enter an institution (Kaye & Teshale, 2020). Their contributions also help

offset the cost of personal care services and can delay the need for more costly 

services, such as hospital and nursing facility services. While a detailed statistical

analysis of the economic value of family caregiving to state Medicaid programs has yet 

to be developed, the economic impact of caregiving is significant

State Medicaid programs support enrollees directly, and can indirectly support 

caregivers through training, services, and sometimes payment. However, the report

notes that “there are strong indications that family caregivers could benefit from 

additional supports, especially those targeted to meet caregivers’ specific needs

These supports would, in turn, benefit the Medicaid enrollees receiving their care” 

(Kaye & Teshale, 2020)

Innovative strategies to address critical issues in family caregiver support are underway 

in some states. The report provides detailed case studies on Medicaid innovations to

address critical family caregiver issues, including:

■ Colorado, for the In-Home Supportive Services (IHSS) program provided under 

its three 1915(c) waivers, waives scope of practice laws that dictate what medical 

services can be provided by which providers (and in some cases, the setting of 

those services). This flexibility enables family caregivers to be paid to provide skilled

health-related activities (Kaye & Teshale, 2020)

■ In Florida, the managed care organization (MCO) that serves children and youth 

with special health care needs (CYSHCN) provides behavioral health services for 

family caregivers as a value-added service, as required under the MCO’s contract

with the state (Kaye & Teshale, 2020)

■ Georgia has, within its Elderly and Disabled 1915(c) waiver, established a 

mechanism to identify and deliver individualized training to family caregivers that 

is based on information collected through the care coordination process (Kaye & 

Teshale, 2020)

■ Tennessee, via contract, requires its MCOs to conduct formal caregiver 

assessments and plan to meet needs identified in the assessment (Kaye & Teshale, 

2020)
RAISE Family Caregivers Act Initial Report To Congress Page 81

■ In Washington, the state developed two benefits that support family caregivers 

of older adults, paid for five years using federal funds provided under the state’s 

section 1115 demonstration. One benefit supports unpaid caregivers of Medicaideligible individuals (Kaye & Teshale, 2020). The other is for individuals at risk o

becoming Medicaid-eligible and incorporates supports for an unpaid caregiver or 

enrollee services for those who do not have an unpaid caregiver. Both benefits are

intended to support care recipient choice and avoid or delay placement in a longterm care facility (Kaye & Teshale, 2020)

An examination of these and other state strategies, research, and input from state 

officials by NASHP led to the identification by the authors of the report of four 

interdependent actions that the federal government could take to improve family 

caregiving as part of the National Family Caregiving Strategy

1. Foster the spread of innovative family caregiver support strategies tested by leadin

states

2. Support the efforts of states to continue to advance their existing innovations an

develop new ones

3. Conduct a comprehensive, systematic effort to identify and disseminate informatio

about states’ innovative and tested family caregiver strategies that would help 

other states choose and implement the strategies that would work best for them, 

especially in the areas of cost and effectiveness

4. Measure the number, demographics, contribution, needs, and priorities of the famil

caregivers who provide support to Medicaid beneficiaries (Kaye & Teshale, 2020)

NASHP concluded the report by noting that these important actions must be considered 

in light of the COVID-19 pandemic. The pandemic has had “an impact on state budgets

[that] will, at least temporarily, make it difficult for states to contemplate implementing 

any new policies, especially those that require upfront investments” (Kaye & Teshale, 

2020). However, aiding family caregivers in their efforts to help the people they support

to remain in their own homes could reduce the impact of the pandemic

In addition, NASHP noted the potential to expand on successful efforts to make HCBS 

accessible for beneficiaries and families during COVID in 2020, through flexibilities 

such as telehealth. “The pandemic, however, has also created a window of opportunity

during which the federal government can prepare to support states and [that] state 

officials can use to consider their options” (Kaye & Teshale, 2020)

Although more research is needed to determine the cost effectiveness of federal and 

state funded HCBS, they are much more aligned with priorities of consumers and 

their families (Spillman & Urban Institute, 2016). Such services are also in keeping
RAISE Family Caregivers Act Initial Report To Congress Page 82

with the U.S. Suprem

Court’s decision in 

Olmstead, which found 

that the “unjustified 

institutionalization of 

persons with disabilities” 

violates the Americans with 

Disabilities Act

Four Intersecting Actions to Promote State 

Family Caregiving Strategies

Identify and 

disseminate 

comprehensive 

information about 

states’ current family 

caregiver strategies

The federal 

government should 

support states 

seeking to adopt other 

states’ innovative and 

tested strategies

The federal 

government should 

help states improve 

their family caregiving 

strategies and 

develop new ones

Identify the 

demographics, 

contributions, and 

needs of family 

caregivers who assist 

Medicaid enrollees

Figure 3. Four actions that promote state family caregiving 

strategies (Kaye & Teshale, 2020).

Medicare & Caregiving

Medicare is the federal 

health insurance program 

for adults over age 65, 

people of all ages with 

disabilities, and people 

with end-stage renal 

disease. It pays for

some, but not all medical 

expenses. Different parts

of Medicare help cover 

specific services. Part

A covers hospital and 

skilled nursing facility stays 

as well as hospice and 

some home care. Part B

covers doctor visits, medical supplies, and preventative services. Part D helps pay for

prescription medicines (Centers for Medicare & Medicaid Services, n.d.). If a pers

participates in a Medicare Advantage Plan, he or she receives Medicare-covered 

services through a private company approved by Medicare

While Medicaid offers an array of avenues for supporting family caregivers, the picture is 

very different with Medicare, which provides payment for medical services and hospice 

care for beneficiaries only. It does not provide direct coverage for family caregivers of

beneficiaries. Nor does it compensate caregivers for time spent supporting the medical

needs of Medicare beneficiaries. To assist the council in fully understanding the role

Medicare could play in supporting caregivers of beneficiaries, The John A. Hartford

Foundation commissioned the Center for Medicare Advocacy (CMA) to develop an issue 

brief to inform their work. CMA’s issue brief, Medicare and Family Caregivers, “examines

the role Medicare currently plays, and could play, in assisting beneficiaries and their 

family caregivers” (Center for Medicare Advocacy, 2020)
RAISE Family Caregivers Act Initial Report To Congress Page 83

The brief raises two issues relevant to the intersection of caregiving and Medicare. As

noted above, Medicare does not provide any direct services and supports to family 

caregivers, however, some Medicare programs do indirectly assist family caregivers

The brief notes that of all of Medicare’s benefits, the home health benefit has the 

greatest potential to positively impact family caregivers through more comprehensive 

care of the beneficiary. This is because some family caregivers are providing

uncompensated services which Medicare would be liable to provide under the 

provisions of the home health benefit

For Medicare beneficiaries who qualify, the home health benefit provides health and 

rehabilitative care for persons who are homebound and can include:

■ Part-time or “intermittent” skilled nursing care

■ Physical therapy

■ Occupational therapy

■ Speech-language pathology services

■ Medical social services

■ Part-time or intermittent home health aide services (personal hands-on care)

■ Injectable osteoporosis drugs for women

According to the CMS Home Health Quality Reporting Program webpage, in 2019, 

5,266,931 beneficiaries received home health services through 7,439,849 quality 

episodes of care (Centers for Medicare & Medicaid Services, 2021). “These counts

include Medicare Fee for Service, Medicare Advantage, and Medicaid beneficiaries for 

whom Outcome and Assessment Information Set (OASIS) data collection is required” 

(Centers for Medicare & Medicaid Services, 2021)

Unfortunately, many families who legally qualify for the home health services benefit 

under Medicare are denied or do not have access to the benefit (Center for Medicare 

Advocacy, 2020). The brief noted that “As the population ages, and lives longer with

chronic conditions, the need for family caregiving, and support for caregivers, is 

increasing. Concurrently, however, access to Medicare-covered home health aide care

continues to decline” (Center for Medicare Advocacy, 2020)

One reason for this decline, the brief noted, is inaccurate and inconsistent information 

about eligibility, including the duration of care. “Medicare beneficiaries are often given

inaccurate information regarding Medicare home health coverage in general, and home 

health aides in particular. Sometimes they are told Medicare simply does not cover

home health aides” (Center for Medicare Advocacy, 2020)

If the beneficiary is not receiving Medicare home health services, families often 

find themselves providing caregiver support—and sometimes nursing care—at 
RAISE Family Caregivers Act Initial Report To Congress Page 84

their own expense, or foregoing care for the person receiving support. The council

determined that, without further study, it is impossible to assess the precise scale 

of uncompensated support caregivers provide and for which Medicare could be 

responsible, were the beneficiary deemed eligible

“It is extremely stressful caring for an elderly family member. In addition to caring 

for ourselves, the doctor [appointments], shopping, housekeeping, etc. Since by 

doing this care at home for FREE, it would be only most appropriate that Medicare 

pay for someone to come in and help the care giver. As we, the care givers are 

saving Medicare a HUGE amount of money by us taking care of our spouses.” 

-Response to the ACL RFI

To realize a vision of Medicare more fully supporting family caregiving, both legislative 

and administrative changes would be required. The issue brief concluded with three

recommendations that could, if implemented, increase support for family caregivers

The recommendations made by CMA in its issue brief include:

■ “Ensure the scope of current allowable home health benefits, generally, and home 

health aides, specifically, are actually provided. Simply put, ensure that current law

is followed

■ Create a new stand-alone home health aide benefit that would provide coverage 

without the current skilled care or homebound requirements, using Medicare’s 

existing infrastructure as the vehicle for the new coverage

■ Identify other opportunities for further exploration within and without the Medicare 

program, including additional Medicare revisions, demonstrations, and initiatives 

overseen by the Center for Medicare & Medicaid Innovation” (Center for Medicare 

Advocacy, 2020)

The council recognizes that these recommendations are substantial. In at least one

case, the creation of a new benefit using Medicare’s existing infrastructure is beyond the 

scope of the council to approve. Such a change would require Congressional mandat
RAISE Family Caregivers Act Initial Report To Congress Page 85

IV. Recommendations to Recognize, Assist, Include, 

Support, & Engage Family Caregivers 

“As we put together a report to Congress on FAMILY CAREGIVING, 

what better IMAGE than a HOME. We are talking about creating an 

environment where PEOPLE can obtain the most appropriate 

benefit to them to remain in their HOME—family care.” 

 –James Cheely, dad, caregiver & member of the Family Caregiving Advisory Council

While family caregiving is universal, there is no singular experience of caregiving

Caregiving takes many forms, and it changes over time. It is a vastly heterogeneous

activity that differs for each caregiving situation depending on a variety of 

circumstances. These include, but are not limited to:

■ Sociodemographic factors (e.g., age, sex, education, migration background an

ethnicity, religious affiliation, marital status, household, employment, and income)

■ The intensity and/or type of caregiving tasks

■ The caregiver’s perceptions of caregiving needs

■ The caregiver’s own health and functioning

■ The types of social/professional supports available to the caregiver

■ The stage of the illness or condition experienced by the person receiving support

■ The nature of the prior relationship between caregiver and the person receiving 

support

■ The physical home location and environment

■ When caregiving occurs within the life course of the caregiver

■ If the caregiver is caring for other members in the family including children

■ Whether the family has access to medical care and community based services

Some people become caregivers gradually and over time. For others, it happens in the

space of a few hours. The responsibilities can last for days, years, or the rest of one’s

life. For family caregivers of children and adults with IDD, caregiving lasts the lifetime

of the caregiver, and a significant concern for these caregivers is the well-being of their 

family member once they (the caregiver) can no longer provide support

The health of the caregiver also affects the caregiving experience. Many caregivers

forego their own medical care during times of intense caregiving and older caregivers 

are themselves at risk of illness and chronic health conditions. The presence or

absence of family or extended family who are available and willing to help is also a 

differentiator. The geographic distance between the caregiver and the person receiving

support, and the transportation and health care access challenges faced by residents 

of rural areas can have a dramatic effect on the caregiving experience. Lastly, cultural
RAISE Family Caregivers Act Initial Report To Congress Page 86

expectations shape caregiving and the kinds of supports that would benefit any given 

caregiver (Pinquart & Sorenson, 2005)

No two days in the life of a caregiver are the same. In fact, on any given day, caregivers

manage a range of responsibilities to help a care recipient maintain their dignity and 

independence. Each of these tasks is, in turn, shaped by a constellation of internal and

external factors, including, but not limited to, the needs of the person receiving support 

and the ability of the caregiver to meet those perceived and objective needs

 “Caregivers have taken on the role of nursing staff for these children with 

complex medical needs. Other family members do not feel comfortable providing 

the level of medical care these children require. This often leads to caregiver 

burnout/health issues, trips to the Emergency Department, and divorce among 

parents of children with special needs due to the stress.” 

-Response to the ACL RFI

The types of support that benefit caregivers also differ depending on family 

and situation. When it comes to caregiving, there is no one-size-fits-all answe

Interventions and policy changes must take into consideration the diversity of 

caregivers and caregiving situations. For example, during the COVID-19 pandemic, as

more caregivers provided round-the-clock care with reduced access to services and 

supports, there was an increased need for respite services. However, what constitutes

“respite” for the spouse of an older adult living with dementia (typically an adult day 

program) differs significantly from what the parent of a child with autism who also has 

educational needs would view as an equivalent form of respite

Yet, despite the immense diversity in the caregiving experience, consistent themes 

emerged in the council’s deliberations—both in the discussions of the existing 

research and their own experiences as caregivers and people receiving support. These

themes were supported by the findings of the RFI. Foremost among these themes is

the commitment among family caregivers to providing the best care possible for the 

people they support. Other significant themes to emerge from the council’s body of

analysis were that caregivers need assistance in the form of services and supports and 

that caregiving exacts a significant financial toll on families

Without services and supports, many families take a “do-it-yourself approach” to 

caregiving. This can leave them stressed, burned out, and often in poorer health than

when they started. Because caregiving is not something people generally plan for, it

is by nature reactive. Caregivers rarely receive training, which means they learn by

doing—putting them at risk of making mistakes and missing opportunities to adopt 

best practices. It also leaves them vulnerable to unexpected life events, changes in
RAISE Family Caregivers Act Initial Report To Congress Page 87

the condition of the person receiving support which they may feel they have somehow 

contributed to, and disaster situations—as most recently seen with the pandemic

They often provide their caregiver support without being included in discussions with 

providers about their ability or willingness to provide support—it is simply taken for 

granted that caregivers, regardless of their individual capabilities, will cover whatever 

tasks need to be done—including those not covered by public and private insurance

Finally, like anyone in a stressful job, caregivers need to take a meaningful and healthy 

break—but finding the time and someone to cover their caregiving responsibilities is 

difficult for many families

Caregiving also affects financial health. During the course of providing support,

caregivers often spend money out-of-pocket. If they leave the work force or reduce

working hours, they often experience reduced income. This means they save less for

the future, contribute less to Social Security, often forego medical insurance, and have 

a smaller cushion of savings to fall back on—if they have any savings. Some families

that responded to the RFI describe the financial fall-out of caregiving as “catastrophic.

Vision for the Future Where Family Caregivers are Recognized and Supported

These interconnected and overlapping challenges permeate the caregiver experience

If one need is left unaddressed (for example the need for respite), it can impact other 

aspects of caregiving (such as caregiver fatigue) and ultimately risks a person’s ability 

to continue caregiving. The council organized the challenges into five priority areas

which formed the foundation for a vision of a future state that recognizes and 

supports caregivers

In the council’s vision, when the National Family Caregiving Strategy is fully 

implemented, family caregivers’ physical, emotional, and financial well-being will be 

meaningfully improved as a result of expanded awareness, outreach, and education

about the tremendous work they do. Family caregivers will be recognized, engaged,

and supported as key partners with providers of health care and LTSS. To enable

them to carry out their caregiving responsibilities, they will have access to a broad 

array of flexible person- and family-centered programs, supports, goods, and 

services. They will meet the diverse and dynamic needs of both caregivers and the

person receiving support, recognizing that families will need different forms of support 

depending on their unique needs and circumstances—and these needs can and will 

change. At the same time, their lifetime financial and employment security will

be protected and enhanced. And finally, they will be active participants in a robust

national data and research infrastructure that seeks to document their experiences; 

translate evidence into best practices and develop person- and family- centered 

interventions; and measure progress toward the National Family Caregiver Strategy

From this vision, the council developed five goals encompassing awareness, 
RAISE Family Caregivers Act Initial Report To Congress Page 88

inclusion, services and supports, financial protections, and increased understanding 

through research

These goals were founded on a set of guiding principles adopted by the council at its 

inaugural meetings: 

■ “Family caregiver” is an inclusive and holistic term that includes all who are caring 

for individuals across the lifecourse with chronic or other health conditions, 

disabilities, or functional limitations

■ Promoting adoption of person- and family-centered care puts the person and family 

at the center of care teams, acknowledging the challenges of possible conflicting 

goals

■ Efforts to support family caregivers should advance the autonomy, choice, and 

ability of the person receiving support to engage meaningfully in their communities 

and include caregivers to help guide the care and support needed

■ Recommendations should recognize and support family caregivers in a fair and 

impartial manner that accounts for financial impact and respects and appreciates 

their complexity, diversity, and dignity

■ The National Family Caregiving Strategy will be a “living document” with ongoing 

actions, created in partnership with family caregivers, to be taken by federal, state, 

and local governments, communities, providers, and others while fostering crossdiscipline and cross-sector collaboration

Over many months, logical and practical recommendations emerged that could 

begin moving the nation toward the achievement of the stated goals. The council

heard presentations from experts in Medicare, Medicaid, Alzheimer’s disease, 

research, employment leave, respite care, and services and supports. Multiple

studies were reviewed in development of the recommendations. Most notably,

as part of its technical support to the council, NASHP conducted analysis on 27 

key family caregiving reports written in the past decade, reviewing more than 800 

recommendations. From this analysis, NASHP developed a list of the most common

recommendations, which the council reviewed and considered in the development of 

its own recommendations

On November 18, 2020, the Family Caregiving Advisory Council adopted 26 

recommendations aimed at establishing a national approach to addressing the needs 

of family caregivers of all ages and circumstances. These recommendations serve as

the foundation for the National Family Caregiving Strategy that will begin development 

this year. The strategy will outline critical actions that can be taken at the federa

and state levels, by local communities, as well as by health and long-term services 
RAISE Family Caregivers Act Initial Report To Congress Page 89

providers, and others to better support 

family caregivers in ways that reflect 

their diverse needs. The strategy will

focus on areas such as person- and 

family-centered care; assessment 

and service planning; information, 

education, and training supports; 

respite options; and financial and 

workplace security issues. The strategy

will also provide a roadmap for the 

nation to strengthen its support and 

recognition of the critical role family 

caregivers of all ages play in health 

care and long-term support systems

Expand Awareness, Outreach, 

and Education for, and about, 

Family Caregivers

Caregivers are often forgotten, invisible, overlooked. Many people—including medical

professionals—do not understand the nature of the work, the home environment, and 

the complexity of the responsibilities that caregivers take on. Amid a wide array of daily

tasks, most family caregivers are not aware of the services that could assist them—

especially when they are new to caregiving. By the time they do access services, they

are often in crisis mode

One reason for this is many people performing caregiving tasks do not realize they 

are caregivers. Sometimes people resist labeling their contributions as “caregiving” for

cultural reasons. Others think of them as inherent in their role as parent, spouse, child,

or neighbor or are reluctant to ask for assistance (McCleary, 2019). And finally, some

people do not want to take on the negative perceptions associated with the caregiver 

role (McCleary, 2019). As a result, many caregivers do not seek assistance in their

families and communities or through formal services and supports

“When I first entered my caregiving journey, I did not self-identify as 

a caregiver. I was just a daughter helping out her mom. But as 

her vascular dementia worsened, I accepted the reality that I was going 

to have to shoulder all the responsibilities that come with being a 

caregiver... This crushingly stressful experience is COMMON.”

-Response to the ACL RFI

Because of these factors, families are often in desperate need of information, support, 

services, and assistance to navigate the caregiving journey, but do not know what kind 
RAISE Family Caregivers Act Initial Report To Congress Page 90

of help is available, whom to ask, or if it is worth taking the time out from caregiving 

to find answers to these questions. As our population changes, language barriers may

also play a role in communication gaps. At the same time, many policy makers and

legislators are not aware of the needs, issues, and challenges faced by older adults, 

injured veterans, people with disabilities, and family caregivers. While social service

providers within ACL-funded Aging and Disability Networks and those funded by the 

Veterans Health Administration actively seek to address the needs of family caregivers, 

social services across many other domains are only beginning to include family 

caregivers in their planning. Many health care professionals are not aware of the needs

of family caregivers and do not refer them to the types of supports that could help 

them—if they were more widely available. Many grandparent caregivers report a lack of

understanding of their situations, even from education and health care professionals

The end result is that these groups are not reflected in data collection efforts and they 

miss out on critical services and supports that could promote their health and wellbeing and—indirectly—that of the person receiving support (Eifert, Adams, Dudley, & 

Perko, 2015)

Caregivers also report a lack of understanding and appreciation from their social 

networks and families. One respondent to the RFI spoke for many when they noted,

“Siblings not helping is another toll to contend with.”

The council recognized that assisting and supporting family caregivers requires both 

raising awareness and educating communities about family caregiving. To address this,

Goal 1 and the council’s first five recommendations focus on awareness and outreach 

to and for family caregivers. Additional action steps will be released as part of the

National Family Caregiving Strategy

Goal 1: Family caregivers’ physical, emotional, and financial well-being 

will meaningfully improve as a result of expanded awareness, outreach, 

and education.

Recommendation 1.1: Increase public awareness and recognition of the diverse 

needs, issues, and challenges family caregivers face and of the importance of 

recognizing and supporting them

Rationale: Family caregivers provide billions of hours of unpaid support each year

Their caregiving allows the person to remain in the setting of their choice, thus 

ensuring a higher quality of life than they may experience in a care facility. Th

family caregiver’s role—its complexity, commitment, and the benefits of support—is 

not fully understood by those who have not had the experience. As a consequence,

they often are unseen and unheard, working around the absence of tools, 

policies, and social networks. A better understanding of the family caregiver’s role
RAISE Family Caregivers Act Initial Report To Congress Page 91

throughout the care continuum—its breadth, depth, and many evolving activities—

can raise awareness and inform or motivate those in a position to increase 

support. Increased awareness and recognition of family caregivers creates a better

understanding, appreciation, and motivation for cross-disciplinary and crosssector collaboration to affect changes—in new products, services, policies, and 

legislation—that recognize, assist, include, support, and engage family caregivers 

in meaningful ways

Recommendation 1.2: Increase family caregivers’ self-identification and awareness 

of—and access to—information, services, and supports across a range of topics

Rationale: Many family members do not think of themselves as “caregivers.”

Instead, they self-identify as a parent, grandparent, sibling, child, spouse, partner, 

friend, or neighbor. As a result, they often do not look proactively for resources and

supports. Some may feel guilty looking for support because they feel it is their duty

to provide care. They are often not counted in data-collection efforts about family

caregiving. Self-identifying with the role, understanding the many facets of the

caregiver role, learning when and how to seek assistance, and knowing where to 

access needed education, training, and skills are important for meeting needs

Recommendation 1.3: Improve outreach efforts to family caregivers to ensure early 

identification and access to services and supports

Rationale: Families and family caregivers are generally a “safety net” of support

However, they often have little awareness of the wide range of medical, physical, 

emotional, financial, legal, educational, provider coordination, and advocacy 

assistance that may be necessary. They typically have little awareness on how

to obtain needed information. Effective outreach can increase awareness of

family caregiving—especially in multicultural or immigrant communities and with 

family caregivers from non-English-speaking backgrounds—allowing more family 

caregivers to be recognized and access beneficial programs and services

Recommendation 1.4: Support the development, or revision of, state, territorial, tribal, 

and local planning that focuses specifically on recognizing, including, and supporting 

family caregivers of all ages and is aligned with the National Family Caregiving Strategy

Rationale: Too often, families and family caregivers are not meaningfully included 

in the planning or policy development processes undertaken by state, territorial, 

tribal, and local governments. Often, the focus is only on the person receiving

support. Supporting families across the lifecourse should be an integral feature of

planning efforts and is an important opportunity to assist them in a holistic way

For maximal impact, such planning efforts should align with the National Family 

Caregiving Strategy
RAISE Family Caregivers Act Initial Report To Congress Page 92

Recommendation 1.5: Promote the expansion and role of public/private partnerships 

at all levels that recognize, assist, include, support, and engage family caregivers

Rationale: Public-private partnerships can be catalysts for needed change. To

create a system that truly supports families, multiple sectors—both public and 

private—must work together. No single sector can do it alone. Communities

health care providers, LTSS providers, and others can help by recognizing and 

supporting family caregivers in a manner that reflects their diverse needs. There is

a particular need to engage the private sector—employers and industry—to better 

recognize and support employees who are family caregivers

Engage Family Caregivers as Partners in Health Care and Long-Term 

Services and Supports 

Even though they are called upon to play an integral role in the care of others, today’s 

health care systems do not generally formally recognize family caregivers. They are

often excluded from care planning for which they will have to provide coordination 

and treatment decisions (National Academies of Sciences, Engineering, and Medicine, 

2016). A 2017 survey of family caregivers found that only 10.7% communicated ofte

with the health care team of the person receiving support (Wolff, Freedman, Mulcahy, 

& Kasper, 2020). One of the reasons for this involves a lack of awareness of the role

of family caregivers; health professionals are not trained in person and family-centered 

care and therefore may not be comfortable or see the value in including caregivers in 

discussions, or the care recipient may not wish them to participate

“All too often I see that our services and programs are too fragmented, difficult to 

interpret, left up to various interpretations and take far too long to be processed 

leaving caregivers to fend for themselves and perhaps even worse by giving them 

false hopes and too little help that comes far too late.”

-Response to the ACL RFI 

Family caregivers are often a critical link to ensuring that the instructions of medical 

providers are implemented outside of the physician’s office or hospital. They are often

also in the best position to identify symptoms that mean additional medical intervention 

should be sought out, suggesting that the inclusion of the family caregiver in the health 

care team has the potential to improve outcomes. Providing quality care for the person

receiving support—whether cancer treatment or community-based services—often 

requires a nuanced understanding of the family caregiver’s situation, their cultural 

preferences, their needs, and their ability to perform caregiving tasks. However,

rarely are these factors identified or addressed in the recipient’s medical records or 

care plan—even when the care depends upon the contributions of family caregivers 

(Feinberg & Houser, 2012)
RAISE Family Caregivers Act Initial Report To Congress Page 93

Moreover, when policies are developed, the needs of caregivers are rarely taken into 

account. Anecdotal accounts abound of people being discharged from hospitals

to homes that are unprepared to receive them because the caregivers were not 

involved in the medical and discharge decision making process. This problem is so

prevalent that of the 37 “typical failures in discharge planning” identified by the Health 

Services Advisory Group, the first item on the list is: “Failure to actively include the 

patient and family caregivers in identifying needs and resources and planning for 

the discharge.” In addition, electronic health records (EHRs) have the potential to

identify family caregivers; identify caregiver permissions, as authorized by the person 

receiving support, in various provider and care settings; and facilitate appropriate 

record and information sharing, yet at this time, the focus of EHRs has been on patient 

information, rather than the patient and his or her caregiver or caregivers (Wolff, Darer, 

& Larsen, Family Caregivers and Consumer Health Information Technology, 2016)

Numerous studies have shown that talking with caregivers directly to better 

understand their needs, problems, resources, and strengths helps them to maintain 

their health and sustain their ability to provide care. This, in turn, enables them to

prevent or postpone nursing home placement—when appropriate—of the people 

receiving support (Kelly, Wolfe, Gibson, & Feinberg, 2013). As of 2021, 44 states have

passed the CARE Act to address these issues, but all care transitions—whether from 

a hospital to a skilled nursing facility or between providers of social services—should 

take into consideration the needs of the people responsible for carrying out the plan

Sixty-five percent of caregivers report communicating with doctors on behalf of their 

family members (AARP and National Alliance for Caregiving, 2020). Yet they are not

universally identified in health records and in many systems do not have access to 

EHRs. The predominant focus of health information technology to date has been

directed at use of EHRs by patients (Wolff, Darer, & Larsen, Family Caregivers and 

Consumer Health Information Technology, 2016). People with complex medical

needs—the types of conditions more likely to benefit from integrated information—

are far more likely to require assistance from family caregivers. Accordingly, these

caregivers typically perform a range of tasks that are included in EHRs, such as 

scheduling appointments, communicating with providers, coordinating care and 

care transitions, and tracking and managing medications. Yet, their role in health

information technology is “largely undefined and poorly understood” (Wolff, Darer, & 

Larsen, Family Caregivers and Consumer Health Information Technology, 2016)

Integrating family caregivers as appropriate into health care settings and decisionmaking processes will require a layered approach, including educating medical 

and social services professionals about caregiving and implementing processes to 

accurately assess caregivers and address their needs. The council recognized that

involving caregivers in treatment decisions and care planning, and adequately planning 

resources and training when the care plan changes, leads to improved quality of care 
RAISE Family Caregivers Act Initial Report To Congress Page 94

for the care receiver and increased ability to perform tasks with decreased stress for 

the caregiver. The council also noted that it is important to acknowledge the vital role

of self-determination and not assume that the next-of-kin is a caregiver who should be 

automatically included in health care decisions or access to EHRs, without approval 

from the person receiving care. To address this, Goal 2 and the council’s related set

of recommendations focus on integrating family caregivers into health care settings 

and decision-making processes through a layered approach, including educating 

health care professionals, assessing caregivers and their needs, and ensuring that the 

preferences of the person receiving support are prioritized. Additional action steps will

be released as part of the National Family Caregiving Strategy

Goal 2: Family caregivers are recognized, engaged, and supported as 

key partners with providers of health care and long-term services and 

supports.

Recommendation 2.1: Identify and include family caregivers as essential members and 

partners in the care team of the person receiving support

Rationale: While family caregivers are integral in the health and well-being of the 

person receiving support, they are often not considered part of the care team and 

their role is not fully understood. Even when acknowledged, caregivers often are

assigned tasks without regard to their current workload or abilities. Identifying

the family caregiver will achieve the full complement of the care team and ensure 

appropriate inclusions and information dissemination. Understanding the scope of

the caregiving role, and their level and method of training, will lead to the proper 

engagement of assigned tasks, with communication, acknowledgement, and, if 

accepted, the appropriate support. Regardless of which care team member is

responsible for the task, family caregivers help ensure quality care. Appropriate

inclusion of the caregiver has the potential to improve outcomes

Recommendation 2.2: Engage family caregivers through the use of evidencesupported and culturally sensitive family caregiver assessments to determine the 

willingness, ability, and needs of family caregivers to provide support

Rationale: The caregiver role is poorly understood by those surrounding the 

caregiver. When providers identify family caregivers and ask them about their own

needs and preferences, as well as their willingness and ability to provide support, 

they gain a better understanding of abilities and potential needs. Information

gathering should be based on a reliable and evidence-based set of questions

Assessments should not solely be based on the diagnosis of the person needing 

support, but could include the needs of the family as appropriate, in a variety of 

situations and settings
RAISE Family Caregivers Act Initial Report To Congress Page 95

Recommendation 2.3: Increase the integration of care through the inclusion of family 

caregivers in all relevant care coordination and transitions across providers and 

settings and when desired by both caregiver and the person receiving support

Rationale: Family caregivers often are de facto care coordinators who help navigate 

different systems of providers and services. However, sometimes caregivers and

the people they are supporting fall through the cracks when switching providers 

or health care settings and information is not conveyed. Improvements to care

coordination could be achieved by involving the family caregivers as part of 

transition planning

Recommendation 2.4: Ensure the impact of policy and practices on family caregivers 

are studied and understood before changes are made in health care systems

Rationale: The caregiver, and in some cases the family as a whole, needs to be 

considered when assessing and understanding the potential impacts of changes 

to health care policy and practice. Such actions may have unforeseen impacts on

the family. Consideration and understanding of how such changes may affect those

providing support can minimize unanticipated negative impacts and ensure greater 

integration of family members in the delivery of services and supports

Recommendation 2.5: Strengthen the training of health care, social service, and 

allied health professionals to maximize family caregiver engagement and referrals to 

services in the community

Rationale: The lack of an adequately trained direct support workforce—especially 

in geriatrics, public health, palliative care, mental health, substance use, and 

related topics—impairs the ability to provide person- and family-centered care

The training of such providers includes not only initial academic curriculum but 

also continuing education and clinical experiences. These professionals should

be able to effectively recognize and respond to the needs of caregivers. These

competencies that directly affect family caregivers could be included in training, 

textbooks, licensure, and certification/recertification exams

Increase Access to Services and Supports for Family Caregivers

Caregiving requires significant investments of time that often come at the expense 

of employment, other relationships, social engagement, and self-care on the part of 

the caregiver. Caregivers also delay their own treatment and/or receive inadequate

health care treatment when they most need it. One in 4 caregivers found it difficult

to take care of their own health (23%) and a similar proportion report caregiving has 

made their own health worse (23%) (AARP and National Alliance for Caregiving, 2020)

Evidence also suggests that caregivers have lower self-ratings of physical health, more 
RAISE Family Caregivers Act Initial Report To Congress Page 96

chronic disease, and impaired health behaviors compared to non-caregivers (National 

Academies of Sciences, Engineering, and Medicine, 2016)

Family caregivers of people with dementia have an extensive and well-documented risk 

of caregiver distress due to the intense, and often protracted nature of their caregiving

Examples of the negative outcomes noted over recent decades experienced by 

caregivers of people with dementia include financial risks, “impaired life quality 

(depressive symptomatology, burden, stress); physical morbidities; suicidal ideation; 

and dementia” (Gitlin, Marx, Stanley, & Hodgson, 2015)

“I’m exhausted. I work full time to support my own family, stay at my parent’s 

home because of their state of being and try to maintain my own piece of mind. ... 

Besides the poop and pee, washing clothes, preparing meals, cleaning, 

arranging doctor visits, investigating resources, filling out forms, putting them 

back to bed when they are up during the night, picking them up off the 

floor if they fall, maintaining finances, dispensing medication, ordering 

medication, filing taxes, paying taxes, buying groceries and on and on and on. 

Not only caring for all of their needs but trying to maintain my own.”

-Response to the ACL RFI

Although many family caregivers say that caring for a child with a disability has had 

a positive impact on their lives, they report that there is little support for the lifelong physical demands of caring for a person with a disability. They experience

negative mental and emotional health outcomes due to chronic stress. “Specifically,

caregivers of children with developmental disabilities report persistent feelings of 

anxiety, depression, guilt, and overall psychological distress at a higher rate than noncaregivers. Chronic stress related to the daily, long-term challenges faced by family

caregivers of children with development disabilities has been linked to increased risk 

of heart disease, cancer, gastrointestinal disorders, high blood pressure, overweight/

obesity, asthma, and reduced immune functioning.” In addition, family caregivers often

deprioritize their own care (Auerbach, Perry, & Chafouleas, 2019)

In addition, caregiving can reduce opportunities for social engagement for the 

caregiver. Many Kinship caregivers, for example, report having to pass on social

invitations or events after they took in grandchildren. Over time, this leads to changes

in one’s social network that can be difficult to repair for a busy caregiver. Isolation

is not limited to grandparent caregivers. The AARP and the National Alliance for

Caregiving report that 20% of family caregivers say they feel alone (National Academies 

of Sciences, Engineering, and Medicine, 2016)
RAISE Family Caregivers Act Initial Report To Congress Page 97

“We have a 23 year old son with severe autism who is nonverbal. My husband 

and I provide round-the-clock care for him 24 hours per day, 7 days per 

week. There are 168 hours in a week and we provide 132 hours of direct, 

in-home, hands-on care; that is the equivalent of 3.3 full-time jobs 

(jobs that are unpaid). He has programming for the remaining 36 hours per week, 

and during those 36 hours we are always on ‘stand-by’ duty via phone.”

-Response to the ACL RFI

One way to address these challenges is through caregiver services and supports

Family caregiver services and supports include information about managing chronic 

conditions and available services, assistance in gaining access to services and 

supports, education and training on direct care skills, and respite care (to provide 

temporary relief from caregiving tasks). Support services may also include counseling,

short-term therapy groups to increase coping skills, family meetings, in-person and 

online support groups, and assistive technologies (Kelly, Wolfe, Gibson, & Feinberg, 

2013). Unfortunately, many caregivers find these services difficult to acces

Caregivers rarely receive education and training to help them 

Most family caregivers learn by doing. For family caregivers of older adults, the

responsibility of caregiving sometimes begins with a middle-of-the-night call from a 

hospital or comes over time with the increasing awareness that a parent or relative 

needs more support than previously recognized. Few kinship caregivers anticipate

having to take on full responsibility for young children during the so-called “golden 

years.” Family caregivers of children and adults with disabilities who have been

supporting their family members for a long period of time, sometimes become experts 

in the needs of the person receiving care. But as needs change over time, the role and

expectations change, often without notice

“Caregiver training should start upon diagnosis of a condition requiring 

care and take place by providers in every setting such as physician office, 

hospital, outpatient rehab, inpatient rehab, and home health care.” 

-Response to the ACL RFI

As health care becomes more complex, care coordination often becomes more 

difficult. Caregivers, who may not be included in patient care decisions, find care

coordination difficult. In addition, according to Home Alone Revisited, half of family

caregivers are performing medical and/or nursing tasks. Increasingly, these caregivers

are responsible for difficult tasks, such as preparing special diets, managing 

incontinence, and dealing with pain—often with little or no training (Reinhard S., et al.

2019). Inadequately trained family caregivers are left to care despite the fear of making

a life-threatening mistake (National Academies of Sciences, Engineering, and 

Medicine, 2016)
RAISE Family Caregivers Act Initial Report To Congress Page 98

For all family caregivers, understanding the many facets of the caregiver role, and 

knowing where to access needed education, training, and skills are all essential to 

successfully meeting the care needs of the person receiving support. Similarly, many

family caregivers report significant gaps in the skills of paid caregivers they have tried 

to hire to supplement their efforts

As use of telehealth increases, it is also critical to ensure that technology accessibility; 

broadband access, equipment, and training, are more readily available to family 

caregivers to ensure more equitable access for those who need technology as a health 

utility, a social connector, and for ongoing caregiver support services

Unplanned Events and Emergencies 

Caregivers report they are always in “reaction mode.” Many note that there is little time

for planning or advance preparation. That means that any potential emergency—a sick

child, a lost job, a pandemic—can disrupt the balance of a caregiving situation. While

no one can predict every possible crisis, putting systems in place to manage known 

uncertainties is an essential and necessary support for family caregivers. This can

reduce anxiety and minimize the negative impacts of emergencies. In addition, it can

ensure emergency responders have the information they need to respond to caregivers 

and the people they support during a crisis

The changes in the nature of caregiving have been both highlighted and accelerated 

by the COVID-19 public health emergency. From personal protective equipment

shortages, to closures of services, to vaccine distribution, every stage of the pandemic 

has shone an increasingly bright light on the role of family caregivers

For families that were already providing care at home, COVID-19 may have 

increased caregiving responsibilities. This was largely due to interrupted access to

services and supports, concerns about the well-being of family members, and the 

additional logistical and care coordination challenges associated with caring for a 

family member during a crisis. Research conducted by the National Rehabilitation

Research and Training Center on Family Support, found that “the pandemic ... 

increased their caregiving responsibilities,” and that providing care became more 

emotionally, physically, and financially difficult (University of Pittsburgh, 2020). An

already marginalized population, family caregivers found themselves wondering 

who would care for their family members if they got sick when states failed to 

prioritize them in the same category as the direct care workforce and front line 

workers for vaccine distribution
RAISE Family Caregivers Act Initial Report To Congress Page 99

“It took the 2020 pandemic to alleviate long standing challenges for caregivers as 

service delivery (including groceries, training, support, medical visits) and work 

transitioned to virtual and more accessible methods. It took the same pandemic 

to expose the critical significance of the paid workforce to the well-being of 

people with disabilities and family caregivers, who already were vulnerable from 

being long underserved due to marginal or non-existent services. They were 

left stranded to fend in unimaginable ways when services upon which they 

relied became inaccessible. Those who provide or receive home care deserve a 

comprehensive standard of protection like that afforded to their counterparts who 

reside or work in health care settings.”

-Theresa Tanous, MHA, caregiver & member of the Family Caregiving Advisory Council

In addition, thousands of families who previously relied on adult day health programs 

for respite and therapy for people living with Alzheimer’s disease and related 

dementias found themselves with limited support at a time when the needs of the 

person requiring support increased because they were not receiving the services they 

previously relied upon. Some respite programs moved online quickly, but technological

issues were a challenge for many families and did not provide the type of respite that 

allowed caregivers to perform other tasks or take a meaningful break

No Time for Planning Ahead

While caregivers are focused on supporting their family member, the needs of people 

receiving support change over time. As a result, caregivers must constantly adap

Preparing for change and learning new techniques may not be easy for caregivers 

who are so often just trying to get through each day. Caregivers themselves change

as they age, as life events happen, and as their ability to perform certain tasks 

evolves. Caregivers of all ages, especially caregivers who support adult children,

need assistance with planning for their own futures and the future care of the person 

receiving support. This is a significant need among current caregivers and people

receiving support. According to NAC, fewer than half of caregivers report that their

family member has or had plans in place for future care. Only 45% of all caregivers

indicate they have plans in place for their own future care; the numbers are even lower 

for caregivers earning less than $50,000 per year (AARP and National Alliance for 

Caregiving, 2020)

 “What happens when a primary family caregiver suddenly falls ill? 

Who will step up to care for their loved one who is unable to care 

for themselves? What happens when there are no family members, 

neighbors or friends available at a moment’s notice?” 

-Response to the ACL RFI
RAISE Family Caregivers Act Initial Report To Congress Page 100

The council recognized that caregivers need a range of assistance to facilitate their 

caregiving, now and in the future, and to address the gaps in their lives created by the 

responsibilities of caregiving. Because of the diverse nature of family caregiving, any

interventions must be flexible and adaptive enough to respond in a culturally sensitive 

way to the unique needs of each family. To address this challenge, Goal 3 and the

council’s related set of recommendations focus on achieving an end state where family 

caregivers’ well-being will meaningfully improve as a result of expanded, easy-toaccess and culturally sensitive supports and services. Additional action steps will be

released as part of the National Family Caregiving Strategy

Goal 3: Family caregivers have access to an array of flexible person- and 

family-centered programs, supports, goods, and services that meet the 

diverse and dynamic needs of family caregivers and people receiving 

support.

Recommendation 3.1: Increase access to meaningful and culturally relevant 

information, services, and supports for family caregivers

Rationale: Family caregivers need trusted, reliable, and accessible information, 

services, and supports that are responsive to their immediate needs. Too often,

families spend valuable time and energy navigating multiple referrals and sources 

to obtain services and supports—and then may still be unable to fulfill their needs 

due to inconsistent eligibility requirements, waiting lists, large out-of-pocket costs, 

or supports that are not geared toward their situation. Meeting the needs and

preferences of the family is only possible when there is both an understanding of 

and the ability to deliver requested services and supports. Meeting the needs and

preferences of the family is more likely to result in successful outcomes for them 

and the person receiving support

Recommendation 3.2: Increase the availability of high-quality, setting-appropriate, and 

caregiver-defined respite services to give caregivers a healthy and meaningful break 

from their responsibilities

Rationale: Family caregivers often say they need a “break” from caregiving. Respite

services give family caregivers that temporary break, so they can have time to care 

for their own well-being and mental health. However, the vast majority of family

caregivers never use respite, citing barriers such as cost, availability, inconsistent 

provider training, and reluctance to leave their family member in someone else’s 

care. Some people receiving support also resist being cared for by an unfamiliar

person. Ensuring the affordability, quality, and availability of respite care is a critical

component of a holistic approach to supporting families
RAISE Family Caregivers Act Initial Report To Congress Page 101

Recommendation 3.3: Increase the availability of diverse counseling, training, peer 

support, and education opportunities for family caregivers, including evidenceinformed interventions

Rationale: Many caregivers provide complex supports including those of a medical 

nature. Some are asked to perform caregiving tasks they may not feel comfortable

or able to do, and need support through training and education. However, training

and education opportunities specifically for unpaid caregivers—such as in caregiving 

basics, medical/nursing tasks, financial caregiving, legal issues, mental health 

support, communication, physical tasks, caregiver self-care, and/or end-of-life care—

are not widely available. Family caregivers may also feel stress from challenges that

arise during caregiving. They may need access to counseling and peer support from

those who understand their caregiving situation. Evidence-informed interventions to

provide training and education opportunities will help family caregivers develop skills 

and give them the confidence and tools to provide care

Recommendation 3.4: Expand caregiver support programs and services that maintain 

the health and independence of families by increasing access to housing, safe living 

accommodations, food, and transportation, and by reducing social isolation

Rationale: Family caregivers need more than support with the tasks related to 

caregiving. They also need a holistic approach that ensures they have access to

accessible housing and home repair support, dietary needs, transportation, and 

social engagement. These social determinants of health contribute to their ability to

maintain their own well-being and that of the person receiving support. Adequately

addressing these factors is an important investment that could contribute to longterm cost savings

Recommendation 3.5: Encourage use of technology solutions as a means of 

supporting family caregivers

Rationale: Technology can help support family caregivers and the people receiving 

support to meet regular support needs, especially when caregivers cannot be there 

in person. However, it is only helpful if people have equal access and skills to use

it. The COVID-19 pandemic highlighted the importance of technology as a means

of supporting both caregivers and people receiving support. Examples include

telehealth, online training, counseling, and support groups. As a result, there is

a significant opportunity to expand the use of technology, including access to 

evidence-based treatments from trained practitioners, and make it part of standard 

efforts to support family caregivers
RAISE Family Caregivers Act Initial Report To Congress Page 102

Recommendation 3.6: Expand use of vetted volunteers and volunteerism as a means 

of supporting family caregivers

Rationale: Many caregivers have great need for support, which is often 

unaffordable or unavailable. Volunteers have long been a mainstay of the LTSS

system providing respite, meal delivery, transportation, and social interaction while 

being relatively cost effective for both programs and families. Expanding volunteer

opportunities can both increase the availability of direct supports and create a 

path for expanding the direct care workforce. It is important to note, however,

that coordination and training of volunteers requires an investment so they have 

adequate supports to remain engaged in their volunteerism

Recommendation 3.7: Improve the support of family caregivers during emergencies 

(e.g., pandemics, natural/human-caused disaster

Rationale: Emergencies can encompass many events, including weather, 

pandemics, natural and human-caused disasters, and economic instability. Famil

caregivers continue to support those who are the most at-risk and vulnerable 

during these times. They can benefit from both short- and long-term emergency

preparedness planning. Yet, formal systems have not yet been put in place to

support structures for caregivers to use in crisis response. For example, localities

knowing which caregivers in the community will need additional help during 

emergencies can allow for coordinating immediate support and response. Putting

systems in place to support caregivers during times of crisis, and to support them 

in developing emergency plans, may help lessen the impact of emergencies on 

caregivers and the people receiving support

Recommendation 3.8: Increase the prevalence and use of future planning to ensure 

family members have the needed supports in place throughout the life of the person 

receiving support

Rationale: Planning activities are proactive measures that provide the guideposts 

for prudent resource management and sound decision making, as well as timely 

skills, resources, and training acquisition. For some individuals with lifelong

disabilities, future planning is needed when aging family caregivers can no longer 

provide care and other family members assume greater caregiving roles. The

bottom line is family caregivers want a game plan. Supporting caregivers by

providing resources to proactively approach future planning can help caregivers 

put plans in place, honor the wishes of the person receiving support, and meet 

care goals. Planning also can help conserve financial resources and maintain the

caregiver’s personal well-being
RAISE Family Caregivers Act Initial Report To Congress Page 103

Recommendation 3.9: Increase and strengthen the paid LTSS and direct support 

workforce

Rationale: Paid care workers provide an essential service, supporting the needs 

of a wide range of individuals including older adults, people with disabilities, and 

children and youth with serious long-term support needs. However, there is a

shortage of paid workers, especially direct support workers such as personal care 

attendants, home health aides, and nursing assistants. They face low pay, a lack of

benefits, and few opportunities for career development, which contributes to high 

turnover and creates significant challenges for family caregivers in finding reliable, 

quality care. Strategies include focusing on recruitment and retention of direct care

workers; improving wages, benefits, and uptake of self-direction, and other career 

or employment incentives

Ensure Financial and Workplace Security for Family Caregivers

Financial issues are a significant challenge for many family caregivers and cannot 

be overstated. As people are living longer and requiring more care, family caregivers

need to plan for a longer period of time providing increasingly expensive support. This

includes stretching their budgets over a longer period of time. Forty-five percent of all

caregivers report that caregiving has affected their personal finances. Nineteen percent

have left bills unpaid or paid them late, while another 15% have had to borrow money 

from family or friends. One in 10 struggles to cover basic expense

“Our family was devastated by my son’s accident, and then further 

devastated by the financial ruin that has followed.”

-Response to the ACL RFI

Costs associated with recipients’ needs (e.g., health care, health supplies and 

equipment, and housing and support services)

Family caregivers frequently cover medical and personal expenses for the person 

receiving support. They pay for food, meals, entertainment, clothing, housing, and

transportation. They often also pay medical bills—or the portions not covered by

insurance payers—such as co-pays, pharmacy bills, home modifications, medical 

equipment, incontinence supplies, and personal protective equipment (Administration 

for Community Living, 2021). Family caregivers also purchase supports and services

for example, special education services or home care—for their family members when 

they are not available from community, state, or federal programs (National Academies 

of Sciences, Engineering, and Medicine, 2016)

A 2016 caregiving cost study conducted by AARP found that three-quarters of family 

caregivers surveyed incurred out-of-pocket monetary costs as a result of caregiving
RAISE Family Caregivers Act Initial Report To Congress Page 104

The estimated per family spending on family caregiving was roughly $7,000 per year 

($6,594). Of this, household expenditures (e.g., rent, mortgage, home modification

accounted for 41% of spending, while medical expenses accounted for a quarter 

of spending. Out-of-pocket spending was higher for certain groups of caregiver

Families supporting an individual living with dementia, tended to spend more money 

out-of-pocket than other families. In addition, while white families in the survey

reported spending an average of 14% of their income on caregiving, the Hispanic 

and Latino caregivers who participated in the study spent 44% of their income 

on caregiving, and the African American caregivers spent 34% of their income on 

caregiving (Rainville, Skufca, & Mehegan, November 2016)

Workplace protections and supports for caregivers

At the same time that family caregivers are experiencing significant out-of-pocket 

monetary expenses as part of their caregiving, their ability to maintain consistent 

income levels is often threatened by workplace policies that are not flexible enough 

for family caregiving. Financial issues stemming from lack of workplace flexibilities and

protections for caregivers was a prominent theme in the RFI

Unlike previous generations, most family caregivers today work in paying jobs. In fact,

61% of caregivers are employed, and they work an average of 35.7 hours per wee

Those figures increase for younger caregivers. Almost three-quarters of caregivers

under age 49 are employed. Family caregiving has a significant impact on their work

lives. More than two-thirds of working caregivers have had to make an accommodation

at work (cutting back on hours, for example) to allow them to juggle their caregiving 

responsibilities (AARP and National Alliance for Caregiving, 2020)

 “Employers need education about caregiving to better understand the complexity 

and scope of the issue. Employers should offer benefits for family caregivers such 

as flex time, telecommuting, increased sick time/personal leave, on-site educational 

opportunities and support groups, improved Family Leave policy that includes 

all types of caregivers (not just parents) and paid leave, caregiver tax credit and 

improved [Employee Assistance Program] EAP Support and Referral.”

-Response to the ACL RFI

According to the National Business Group on Health, 70% of working caregivers 

experience work problems due to their role (Burden, 2019). Intensive caregiving

(defined as providing 21 or more hours of care per week), notes AARP, is “associated 

with early retirement and other work-related impacts, such as giving up work entirely, 

reducing work hours, or taking a less demanding job” (Feinberg L. F., 2019). A st

by the GAO estimated that 68% of working caregivers who support either a spouse 

or a parent had to adjust their schedules (arriving late to work, leaving early, or taking 

time off) as a result of their caregiving (Burden, 2019)
RAISE Family Caregivers Act Initial Report To Congress Page 105

These accommodations come at significant risk to the long-term financial stability of 

family caregivers. In addition to lost wages, caregivers may lose health insurance or

Social Security and retirement benefits and miss out on career opportunities when they 

reduce hours or leave the workforce (even temporarily). There is evidence that caring

for a parent in mid-life substantially increases a woman’s risk of living in poverty in older 

age. Even in the short-term, because many employed family caregivers do not have paid

sick days or paid family leave benefits—a day missed from work can have a significant 

impact on the financial well-being of the family (National Academies of Sciences, 

Engineering, and Medicine, 2016). This issue has intensified during the pandemi

Even if caregivers are eligible for time off work, many are simply not aware of their 

right to do so or do not feel comfortable due to fears of bias or stigma related to family 

caregiving. Over a quarter century ago, the Family and Medical Leave Act (FMLA)

was signed into law, giving covered workers access to 12 weeks of unpaid parental, 

medical, and caregiving leave. Yet only 59% of American workers have access to

FMLA leave due to coverage limitations. Other caregivers do not qualify due to

definitions of qualified caregivers under the current law

These statutory limitations can have a ripple effect. This was most notable, in the issue

of paid leave, in 2020 with the passage of the Families First Coronavirus Response 

Act, which required certain employers to provide employees with paid sick leave or 

expanded family and medical leave for specified reasons related to COVID-19. While

the statute provided paid time off work for parents of a child who was sick or had lost 

services due to closures and lockdowns, it did not cover leave for family caregivers, 

including caregivers of adult children no longer able to access services such as adult 

day care

In fact, while some employers have provided paid leave and some states have 

implemented paid leave policies, the overwhelming majority of family caregivers report 

having no paid family leave at their workplace. If a caregiver needs to miss work, he or

she goes without a much-needed paycheck. That has created a significant barrier to

taking time off to care for a family member, particularly for low-wage workers (Feinberg 

L. F., 2019). Caregivers cannot do it all. Without universal workplace protections 

family caregivers, family caregiving will continue to involve painful choices between 

providing care and earning a living

Financial security for the future

When it comes to future financial security, many family caregivers are so focused 

on the struggle to pay rent and put food on the table that long-term planning is not 

possible. Yet, the financial risks associated with caregiving are significant, and they

compound over time. Many people never recover financially from the costs of family

caregiving. Research has found a positive correlation between caregiving and lower
RAISE Family Caregivers Act Initial Report To Congress Page 106

income later in life. Family caregivers who disrupt their careers or leave the labor force

to meet full-time caregiving demands face substantial economic risk and short-term 

and long-term financial consequences by losing salary, personal retirement savings, 

eventual Social Security and retirement benefits, career opportunities, and overall 

financial well-being (Feinberg L. F., 2019). Several respondents to the RFI noted t

challenge of qualifying for Social Security benefits as a direct result of their caregiving

These factors have special significance for female caregivers for whom the likelihood 

that they will live in poverty and/or rely on public assistance later in life increases 

with caregiving (Wakabayashi & Donato, 2006). To mitigate the risk of future

impoverishment, some family caregivers have to make financial and business decisions 

on the part of themselves and the person receiving support. That can be a difficult task

to do at the beginning of the caregiving experience. Many caregivers are not aware of

benefit programs that could help them protect their assets. Others assume they would

not qualify if they did take the time out from caregiving to apply. Helping caregivers

address the financial risks of caregiving through assistance programs and support with 

long-term financial planning has the potential to help break the well-recognized cycle 

of caregivers experiencing declining health due to their caregiving tasks and potentially 

requiring caregiving assistance themselves

“I’m not anywhere [near] rich, just above the Medicaid cut off. I have to take my 

chances that I can handle my husband until he passes because to get help in a care 

facility will require me to be stripped of my modest assets.” 

-Response to the ACL RFI

To address the financial challenges that come with caregiving and to ensure caregivers 

have the tools to make fiscally sound decisions, family caregivers need a range of 

financial supports and education services to help prevent impoverishment. The council

recognized that family caregivers risk their financial security due to numerous financial 

challenges brought about from caregiving. To address this, Goal 4 and the council’s

related set of recommendations focus on decreasing the negative financial impacts for 

family caregivers on both a short- and long-term basis. Additional action steps will be

released as part of the National Family Caregiving Strategy

Goal 4: Family caregivers’ lifetime financial and employment security is 

protected and enhanced. 

Recommendation 4.1: Decrease the negative financial impacts for family caregivers on 

both a short- and long-term basis

Rationale: Personal finances and future financial security are a significant source of 

stress for family caregivers. They are concerned about the ability to accommodate
RAISE Family Caregivers Act Initial Report To Congress Page 107

the needs of the person receiving support (including costs associated with 

health care, health supplies and equipment, housing, and support services) as 

well as their own needs, now and into the future. Concern about finances also

frequently incorporates family caregivers’ ability to care for other family members 

in addition to the person receiving support. Financial health is a core component of

maintaining the caregivers’ well-being and is critical to meeting the overall goals of 

the person receiving support and the caregiver

Recommendation 4.2: Advance the development and broad adoption of employeecentered flexible workplace policies and practices that support work/life balance and 

maintain performance when personal circumstances change

Rationale: More than half of working age adults are family caregivers. Many of

them have had to miss work because of their caregiving roles, and some of them 

have ultimately had to reduce their working hours, take a leave of absence, or leave 

the workforce altogether. Flexible policies and practices can provide caregivers with

employee benefits and the tools to balance their work and caregiver role, allowing 

them to remain in the workforce longer. In return, employers can gain employees’

loyalty, retention, and expertise. Public-private partnerships can facilitate financial

security and employment policies for family caregivers and prevent discrimination 

against caregivers in the workplace

Recommendation 4.3: Increase the availability, and use of, financial education and 

planning tools for family caregivers

Rationale: Family caregivers often selflessly respond to the immediate health and 

financial needs of the person receiving support. They are typically thrown into the

role, and a lack of properly managed finances and planning can lead to financial 

stress. Parents of children with lifelong disabilities, in particular, worry about the

future for their children. Financial planning tools and resources for people with

disabilities, special needs trusts, and other financial services can empower the 

caregiver and the person receiving support

Recommendation 4.4: Improve the affordability of long-term services and supports 

and reduce out-of-pocket costs for families through public and private payers

Rationale: Given that the average cost of home based care is about $35,000 a 

year and residential care is even more costly, middle-class families do not have the 

resources to pay for LTSS. Most people receiving support from family caregivers do

not meet the strict financial eligibility requirements for public assistance. Medicare

does not cover these expenses, and few people have private long-term care 

insurance or other mechanisms to pay for care. Providing families with choices from

an array of financial options available from public/private partnerships can allow 
RAISE Family Caregivers Act Initial Report To Congress Page 108

them to pay, and pay longer, for LTSS. Families, the government, and the private

sector could benefit by working together on a range of options to help pay 

for LTSS

Increased Research, Data, and Understanding of EvidenceBased Practices

Despite the growing body of research into family caregiving, few sources of 

comprehensive representative data currently exist. Most national surveys do not

contain questions that identify family caregiving. Nor are caregivers included in

biomedical clinical trials or medical product development. In addition, understanding

of the caregiving experience and effective interventions, including best practices, 

consequences of workplace supports or lack thereof, and paid leave remains limited

Refer to The Changing 

Landscape of Family Caregiving 

in the United States by Vicki A. 

Freedman and Jennifer L. Wolf 

for a discussion of current data 

sources and the challenges 

associated with measuring and 

defining family caregiving. 

One analysis of family caregiving for older adults 

found estimates from eight different surveys 

ranged from three to 36 million between 1985 

and 2010. As noted in the introduction to this

report, the current prevalence of unpaid family 

caregivers is at least 26.4 million in a typical

week (Freedman & Wolff, 2020). That number

extends to 53 million when considering a oneyear timeframe (AARP and National Alliance for 

Caregiving, 2020). This wide variance is attributed to differences in data collection

depending on the source of information (the person providing care or receiving care), 

whether (and if so, how) the age of the person receiving support is limited (e.g., t

over or under a particular age); the specific types of assistance that are mentioned 

(e.g., providing physical care, helping with household tasks, assisting with medica

care, or providing emotional support); whether the purpose of the care is linked to the 

recipients’ health and functioning, whether a time horizon over which help is provided 

(e.g., in the past year or month) is mentioned or a minimum duration required; whethe

the sample is limited to particular types of caregivers (e.g., primary caregivers o

spousal caregivers) (Wolff, Freedman, Mulcahy, & Kasper, 2020)

In addition to a lack of standardized data, to date, research has focused on the 

experiences of adult caregivers. There is no major body of work into the experiences of

caregiving youth. A 2017 RAND study commissioned by the Elizabeth Dole Foundation

found that there have been no studies or evidence-based research looking at the 

impact of caregiving on military children, even though these children often perform 

caregiving tasks (Ramchand, et al., 2014). Similarly, there is little information on th

impacts of sibling caregiving or the needs of youth who live in families where the 

parents are full-time caregivers to other family members
RAISE Family Caregivers Act Initial Report To Congress Page 109

In addition, little is known about the effectiveness of various strategies, such as 

cultural competence training, to address the needs of caregivers, with almost no 

studies available that evaluate possible interventions. Similarly, an understanding

of the caregiving experience and effective interventions remains limited. While

biomedical trials focusing on patients are plentiful, research projects that capture 

health information about caregivers are less common. That is slowly beginning to

change (Gray & Firpo-Cappiello, 2018). Some research, for example, is under way to

assess how integrating family caregivers into cancer trials affects the well-being of 

the caregiver, the person receiving care, and the outcome of the trial. But researchers

have a long way to go in measurably assessing just what kinds of interventions can 

more effectively assist caregivers and what actions caregivers themselves can take to 

prevent burnout

When it comes to research into caregiving, what currently exists is insufficient

Caregivers have not been included in medical device and drug research trials

This lack of participation and information limits the ability to fully measure and 

assess intervention efficacy, and foregoes opportunities to learn or gain insight for 

improvements. Finally, when studies do assess caregiver experiences, they often

assume the caregiver perspective is part of the patient experience (McCleary, May 

2019). In so doing, they fail to distinguish the experience of the person receiving

support from that of the caregiver and risk reducing the autonomy and independence 

of the person receiving support. For example, more than 200 dementia caregiving

interventions tested with randomized clinical trials over the past three decades have 

been found to be efficacious (Gitlin, Marx, Stanley, & Hodgson, 2015). However, they

largely remain inaccessible to the population that needs them (Gitlin, Marx, Stanley, & 

Hodgson, 2015). As the nation looks toward expanding medical research, especially

in the wake of the pandemic, studying the role of family caregiving in disease progress 

and management as well as studying interventions that can assist caregivers are 

critical. By establishing a national discourse that deepens scientific understanding

of all aspects of caregiving, the nation will be better able to identify and support 

caregivers, which should promote proactive planning and outreach so that care needs 

are addressed before they become overwhelming

The 2020 NIA National 

Dementia Care Summit

identified a number of gaps 

and opportunities in research 

on caregiving and caregivers 

of people with dementia. 

In 2021, National Academies of Sciences, 

Engineering, and Medicine released a consensus 

study on care interventions for individuals with 

dementia and their caregivers. The study, Meeting

the Challenge of Caring for Persons Living with 

Dementia and Their Care Partners and Caregivers: 

A Way Forward, proposed three recommendations 

to strengthen future research into dementia caregiving. Specifically, with regard to

improving research and data collection, the consensus report recommended: 
RAISE Family Caregivers Act Initial Report To Congress Page 110

■ Prioritize strong, pragmatic, and informative methodologies when identifying funding 

priorities

■ Prioritize the inclusion of research that promotes equity, diversity, and inclusion 

across the full range of populations and communities

■ Support research capable of providing the evidence that will ultimately be needed 

to make inclusive decisions and implement interventions in the real world (National 

Academies of Sciences, Engineering, and Medicine, 2021)

While the recommendations are dementia-specific, they have some applicability to 

family caregiving in general and are in line with the council’s overall assessment that 

including caregivers and refining data and data collection methods can expand the 

understanding of caregiver needs and care delivery interventions and/or outcomes

To address this, Goal 5 and the council’s related set of recommendations focus on 

increasing family research and dissemination of promising and evidence-informed 

practices and using a robust infrastructure that facilitates and supports the necessary 

methods and practices to achieve this. Additional action steps will be released as part

of the National Family Caregiving Strategy

Goal 5: Family caregivers are engaged stakeholders in a national 

research and data gathering infrastructure that documents their 

experiences, translates evidence into best practices, develops personand family-centered interventions, and measures progress toward the 

National Family Caregiving Strategy.

Recommendation 5.1: Establish a national infrastructure using standardized data, 

questions, and definitions for obtaining, analyzing, and disseminating information 

about caregivers and their experiences

Rationale: While there is sufficient data to illustrate the importance of family 

caregiving, formal caregiving data collection processes at a national level are still 

lacking. State, tribal, local, and federal programs need data collection processes

on family caregiving across the lifecourse that are consistent and comparable 

between programs and governmental entities, to better refine and coordinate 

services for family caregivers. A nationally coordinated focus on data collection can

raise awareness about collecting caregiving data at the state and local levels, and 

support data collection on a diverse range of caregiver populations. Better and more

consistent data could be collected through the development of a core set of family 

caregiver questions that could be added to existing national and state surveys. A

formal data collection process coordinated at a national level would support a body 

of evidence to develop, plan, and coordinate resources, services and supports; and 

help identify and document the economic value of family caregiving
RAISE Family Caregivers Act Initial Report To Congress Page 111

Recommendation 5.2: Increase family caregiver research that facilitates the 

development and delivery of programs and services that support and enhance the 

health and well-being of the caregiver and the person receiving support

Rationale: Research is needed to better document the needs and impact of 

caregiving on diverse types of caregivers across the lifecourse. This research is also

needed to better understand employment practices on the caregiving experience 

and document the value of paid leave, and to close service gaps, especially among 

underserved populations in rural areas, and under-represented communities 

of color. There is also a need to better understand and document how sexual

orientation or gender identity impact the caregiving experience, and how to better 

support these communities

Many evidence-supported programs for family caregivers are limited in terms 

of availability and in the practicality of delivering services in applied settings

The inclusion of family caregivers as research partners in the design and the 

delivery of services has been found to play an important role in the successful 

utilization and sustainability of needed services. Research on the impact of

caregiving interventions and their return-on-investment is needed to determine the 

effectiveness in sustaining family caregivers, limiting the cost of institutional care, 

and scaling up successful supports and interventions

Recommendation 5.3: Increase the promotion, translation, and dissemination of 

promising and evidence-informed practices to support family caregivers in the delivery 

of health care and long-term services and supports

Rationale: A major barrier to implementing family caregiver interventions is 

translating the research into real-world settings. What is known about effective

interventions is that they must be multi-component and address both the pragmatic 

and the emotional elements of caregiving. Working with diverse communities to

develop services and models that best meet their needs, and expanding and 

replicating promising practices that are person- and family-centered are critical. It is

also important to be able to monitor the experiences of caregivers to identify best 

practices and facilitate dissemination. Building on evidence-informed services for

caregivers is fundamental to helping organizations scale up practices and supports 

that are proven to be impactful and cost-effective
RAISE Family Caregivers Act Initial Report To Congress Page 112

Family Caregiver Support Needs Should be Addressed

The second-to-last word in the RAISE acronym is “support.” Because they play a

critical role in the health and well-being of others and caregiving can impact their own 

health, support is critical to ensuring the long-term success and well-being of family 

caregivers. But in order to be successful in their roles, caregivers need support in

the form of respite, education, assistance navigating social service systems, and 

help mitigating the tremendous financial burdens many family caregivers face. The

stories below show how today’s caregivers make personal sacrifices to support their 

family members and the financial toll the caregiver role has taken on them

For Shawn, a caregiver spouse of an injured veteran, making time for self-care is the 

key to continuing in her role as a caregiver. She, like many caregivers, struggles t

find time for a healthy and meaningful break from her responsibilities. Her husband’s

needs are so intense that even when someone is providing care in her absence, she 

feels she must remain accessible to assist if something unexpected happens. For more

on the importance of respite that truly provides a meaningful and healthy break from 

caregiving, refer to Recommendation 3.

Shawn has been caring for her veteran husband for 7 years and is an 

integral part of his care team. Her husband told her about his PTSD 

and recovering from alcoholism on their very first date. However, 

Shawn did not fully understand the extent of his condition and its 

impact on her at the time. She did not realize most of her time would 

be spent taking care of him, rather than spending time as a couple. 

The first time Shawn had to talk her husband through a severe 

flashback associated with his PTSD, she realized she was a caregiver. 

Shawn is the type of person who understands she needs breaks for her own mental health, 

but that still doesn’t make them easy to achieve. When Shawn does things for herself, she 

ensures she stays in touch with her husband and has others providing care for him. Shawn 

also recommends that caregivers go to therapy for themselves, in order to have someone to 

celebrate the highs with and to find support during the lows.

She feels that it can be easy to lose who you are in the role of being a caregiver. Although her 

husband is set up for retirement, if something happens to him, she would be left with nothing 

due to quitting her career to take care of him. She now has no retirement and would not get any 

of his benefits should he pass before she does. Shawn believes that by ensuring caregivers get 

paid for what they do – providing tax breaks or setting up job recruitment fairs for caregivers – 

will mean that their livelihood is more likely to be secure.
RAISE Family Caregivers Act Initial Report To Congress Page 113

In the midst of caregiving, it can be hard to find time to navigate differing eligibility 

requirements across multiple social service programs. Meanwhile, it can be difficult for

caregivers like Sarah, or the people they support, to assess what, if any, caregiving 

needs they may have in the future. This means that over time the administrative

hurdles faced by family caregivers to secure needed social services and supports 

can become overwhelming, leading families to spend their own money securing 

assistance as care needs increase. That is why it is critical to ensure the impacts of

policy and practices on family caregivers are studied and understood before changes 

are made in health care systems. At the same time, there is a significant need for

increases in future planning to ensure family members have the needed supports in 

place throughout the life of the person receiving support, and to decrease the negative 

financial impacts for family caregivers on both a short- and long-term basis. For more,

refer to Recommendation 2.4, Recommendation 3.8, and Recommendation 

Sarah spent several years caring for her brother who suffered 

from cognitive decline, endured physical challenges, and was 

diagnosed with COPD. He used alcohol to cope with his conditions, 

which complicated the care Sarah provided. After her brother 

passed, Sarah realized his behavior was so time consuming that 

she overlooked early signs of her mother’s cognitive decline. It 

dawned on Sarah that she had become her mother’s full-time 

caregiver when her mother’s ceiling fan caught on fire, and rather 

than calling the fire department, she called Sarah. Sarah’s husband 

was diagnosed with early onset Alzheimer’s disease at the age of fifty-five. As a professional 

engineer, he knew he wasn’t his former self when he began to lose his ability to complete 

calculus equations that he could previously do in his head.

Now, Sarah is providing more than forty hours of care per week. Her caregiving tasks include 

bathing and toileting, preparing meals, providing transportation, administering pills and 

injections, and managing finances. Her caregiving duties prevent her from spending time 

with her grown children and grandchildren. As Sarah’s role as a caregiver demanded more of 

her time, she was forced to reduce her hours working as a school administrator. Eventually, 

she felt compelled to retire and leave the workforce entirely. Sarah’s stress as a caregiver is 

exacerbated by the dynamic of living with her mother, which is particularly difficult for her 

husband, causing Sarah further distress.

Sarah lives in a rural part of the country and she has long been discouraged by the lack of 

available services in her area. There are three general practitioners, but no specialists, and in 

her experience, general practitioners don’t know how to help her with the support she needs. 

Her mother has assets which are tied up in the family property. While Sarah and her family 

realize they can sell her mother’s property to provide her mother with a long-term care solution, 
RAISE Family Caregivers Act Initial Report To Congress Page 114

the land is a significant part of their heritage. Therefore, it is important to Sarah’s family that 

care for her mother remains at home as much as possible. If Sarah’s mother were to require 

nursing home care, Sarah and her family could lose everything in order to cover expenses.

Caregivers like Zuzette and TeriLynne are juggling multiple caregiving responsibilities 

and coordinating care. Their story is a reminder of difficulties faced by caregivers in

rural areas and the need for state, territorial, and tribal planning, including a single 

source for information that focuses on the coordination of caregiver supports and 

services, such as access to housing, safe living accommodations, food, transportation, 

and tools for reducing social isolation. For more, refer to Recommendation 1.4 an

Recommendation 3.

Zuzette and TeriLynne are from the 

Gila River Indian Community and have 

cared for their aging parents, as well as 

their own children, two of whom have 

chronic conditions. Zuzette is the primary 

caregiver for her and TeriLynne’s mother, 

and supported their mother in the care of 

their father until his death in June 2020. 

In 2013, Zuzette and TeriLynne’s father was diagnosed with dementia – their mother was his 

primary caregiver, but they were both in their 70s. Zuzette realized she needed to help her 

mother care for her father in order for her mother to stay as healthy as possible. In 2019, her 

mother was hospitalized with a liver disease. After that event, Zuzette’s responsibility increased 

as she needed to make and attend both of her parents’ doctor’s appointments and help with 

transportation, medication management, and all other household needs. While her father was 

moved to an assisted living facility, Zuzette continued to care for her mother. 

Zuzette and TeriLynne’s parents live on the tribal reservation, but TeriLynne lives 35 minutes 

away. She tries to balance caregiving responsibilities with her sister, Zuzette, who lives closer 

to their parents and often handles more caregiving tasks. This often leaves Zuzette feeling 

overwhelmed and TeriLynne feeling guilty. They feel caring for family members is a valued part 

of Native American culture.

TeriLynne has struggled balancing work with her caregiving duties. In the past, TeriLynne 

had to take a lot of time off to care for her parents, leading her supervisor to write her a 

bad evaluation. Fortunately for TeriLynne, her supervisor has now had her own caregiving 

experiences and is better prepared to understand and support TeriLynne’s challenges. 

TeriLynne feels the hardest part of being a caregiver is learning how to be a caregiver. She 

wants employers to learn how they can better support employees who are caregivers with 
RAISE Family Caregivers Act Initial Report To Congress Page 115

benefits, such as paid leave, flexible work schedules, and work-from-home options. TeriLynne 

also wants caregivers to have more access to educational trainings, so they can feel more 

confident in their role. Caregivers “run and run – they never know where the finish line is” and 

to succeed they need more educational opportunities, and physical and emotional support. 

Zuzette didn’t realize she was a ‘caregiver’, and not just a daughter helping her parents, until 

she attended an Older Americans Title VI conference and took a quiz designed to identify 

caregivers. The conference changed her perspective – she realized that money had been 

delegated to support caregivers like herself, and it made her want to share that information 

with other people in a similar situation. Since then, Zuzette has done extensive research on 

resources available in her state. She feels there should be one agency dedicated to assisting 

caregivers; this ‘one-stop’ agency could provide support, connection to needed resources, and 

planning services for caregivers to financially and emotionally prepare for next steps. 

Zuzette’s caregiving journey has been physically and emotionally tiring, but she feels that it’s 

important to make her parents’ well-being a priority in her life. Recently, Zuzette became ill and 

her doctors told her it was due to dehydration, not eating well, and not exercising. Now, Zuzette 

is trying to balance the need to care for herself with her caregiving tasks. 

Letty, a caregiver who lives in rural Arizona, has a hard time finding caregiving 

supports and services in her immediate area. She also suffers from her own health

issues. She is an example of the millions of family caregivers across the nation who

must forego support because they cannot access services in their own or neighboring 

communities. For these caregivers, increased use of technology, such as culturally

relevant telehealth, online trainings, and support groups can mean the difference in 

being able to sustain their caregiving role and prevent burnout. For more, refer to

Recommendation 3.1 and Recommendation 3

Letty’s mother, who had dementia, has since passed on, but Letty still 

cares for her father. Letty herself is suffering from health issues on top 

of the support she provides to her parents, and finds it difficult to find 

the time and the ability to travel to and from clinical appointments.

Letty lives in a rural area in Arizona and has a hard time finding 

caregiving supports and services. Her calls for information have 

gone largely unanswered, and when she does find caregiver training 

or supports in larger cities such as Tucson, she often doesn’t have the resources to travel that 

far. If more caregiving training was made available online, Letty feels she’d have a much easier 

time accessing it and learning how to best be supported in her role.

Letty has also described the challenges she has experienced in obtaining needed resources for 

her parents’ care. She was unable to obtain a replacement Medicare card for her mother, who 
RAISE Family Caregivers Act Initial Report To Congress Page 116

had dementia and could not remember the answers to her security questions. She’s had trouble 

getting oxygen for her father, a life-sustaining resource, because she couldn’t afford the upfront payment. When her mother passed, Letty could not access a bank account her mother held 

because her father, who is still alive, also has his name on the account. Though her father could 

access the account, he would need a driver’s license, which he cannot get without traveling to 

the DMV, something he no longer has the ability to do.

Letty has been fortunate enough to receive in-home medical help from a doctor who visits her 

parents. Letty attributes her ability to be a successful caregiver to the help she receives from 

her in-home doctor. Without this help, she doesn’t believe she’d have been able to take care of 

her father for as long as she has. 

Caregivers who are forced to leave the workforce because of the high demands of 

caregiving are at greater risk of poverty later in life. As Gary’s story indicates, his wife’s

early retirement “decimated her retirement and Social Security,” highlighting the need 

for policies that both ensure the needs of family caregivers are understood before 

changes are made in health care systems, and decrease the negative financial impacts 

faced by family caregivers. For more, refer to Recommendations 4.1 - 

Gary is no stranger to the world of caregiving after helping care for 

his mother-in-law for 25 years. Not long after he and his wife were 

married, his wife’s mother began forgetting things, like her car keys. 

When she was diagnosed with Alzheimer’s, Gary’s wife retired to 

look after her, and Gary became a secondary caregiver.

In Gary’s culture, there is a great respect for elders and a shared 

understanding that children will take care of their parents when 

needed. Gary’s wife did not hesitate to retire early, even though it 

decimated her retirement and Social Security to take care of her mother. As Gary describes, his 

“filial piety” is something Gary and his wife endeavor to pass on to their children, whom they 

occasionally brought into the caregiving bubble to help with their grandmother and whom they 

leaned on for support.

As a secondary caregiver, Gary acted as the “backup quarterback.” It was his job to look 

after his wife, anticipate her needs, and do the things around the house that would make her 

caregiving role easier, such as cooking and cleaning. Gary was aware of the fact that he had 

the privilege of “returning to the bench” when he needed a break, but that his wife was in a 

constant haze of being alert, aware, and ready for action, so he did his best to share in the 

tasks that he could.

Gary and his wife put off a lot of their life because they did not think they would be caring for as 

long as they did. They are part of 11% of caregivers who care for 10 years or more. Gary feels 
RAISE Family Caregivers Act Initial Report To Congress Page 117

that caregivers, especially those who care for many years, need some sort of support in order 

to avoid relying on the social safety net themselves. Gary believes that better state and federal 

policy for caregivers could help with this problem.

For family caregivers like Rona, who are nurturing and supporting children with 

developmental disabilities, caregiving is a lifelong event. With the persistent nature

of day-to-day caregiving, there is little time for self-care or to plan for the future

Rona’s story illustrates the critical importance of ensuring family members have the 

opportunity to take meaningful breaks from their caregiving responsibilities. For more,

refer to Recommendation 3.

Rona lives in rural Oklahoma and is the mother of three children. Her 

youngest child is a 13-year-old with Down syndrome. Her daughter 

is non-verbal and has significant intellectual disabilities. She can’t 

be left unattended. Though Rona feels fortunate that she and her 

husband are employed and that they have health insurance, she 

is frustrated because even with two health insurance plans they 

constantly fight to secure approval for support services critical 

to their daughter’s well-being. The insurance company has even 

approved requests for in-home therapy, only to cancel it later stating that it never should have 

been approved at all. 

Rona works in an office setting she truly enjoys. She recognizes that her work supports her 

in ways other than just financially. Her work provides a break from her house, and challenges 

her mind – which improves her outlook on life and helps her deal with the stress of caregiving. 

Rona’s boss has come to understand that she requires some flexibility in her schedule as it 

is not uncommon for Rona to have to leave work immediately if her daughter’s school calls. 

In the beginning, Rona felt guilty about leaving work for these short periods and would often 

work without taking breaks to prove she was still a good employee. Rona enjoys her job but if 

it wasn’t for the year round caregiver duties she would take a more career oriented job like she 

held in the past and enjoyed. This current job gives her summers off which is a huge deal for a 

caregiver without good options for care for an almost adult child. 

Respite services are very important to Rona and her family. Respite allows her to be a mom to 

her other children, attend to her own medical needs, and even have an occasional date with her 

husband. Respite gives her guilt free time away from caregiving and allows her daughter to stay 

in her routine. 

Rona expects to be a caregiver for the rest of her life or for the rest of her daughter’s life. It’s 

doubtful her daughter will ever be able to live on her own. Rona worries about what would 

happen to her daughter if she or her husband die, or if Rona and her husband end up needing 

care themselves in the future. She stated, “It’s very sobering to think about.”
RAISE Family Caregivers Act Initial Report To Congress Page 118

V. International Approaches to Supporting 

Family Caregiving

With the development of its slate of recommendations, the next step for the council is 

the drafting of the National Family Caregiving Strategy. A key step in developing th

strategy was to review approaches to supporting family caregivers on other shores

International caregivers face many of the same daily challenges as U.S. caregive

They also experience similar personal rewards. However, while in the U.S. caregivi

has, until now, largely been viewed as a family matter—one often addressed in the 

private realm, overseas there has long been a perception that caregiving is inextricably 

linked to human rights. A strong caregiving movement—known as “carer rights”

exists in Europe. This movement holds that people have a basic right to provide

care to others, to be cared for, and to engage in self-care, without jeopardizing their 

financial health, their personal well-being, or their jobs

There is also a growing recognition worldwide that providing tangible empowerment 

and support to caregivers has economic value in that it not only creates opportunities 

for independence for people receiving support, but has implications for the economic 

mobility of caregivers—a group that has been traditionally marginalized

“Many organizations around the globe—grassroots, nongovernmental, governmental, 

healthcare, educational, and corporate—are working to address the unmet needs of 

caregivers,” notes a 2017 white paper developed by a number of caregiver advocacy 

groups, including the International Alliance of Carer Organizations. These organizations

are developing practical solutions to improve caregivers’ health and well-being, often 

across borders and regions, (Embracing Carers, 2017)

For example, the most progressive countries, including Belgium, France, Germany, 

and the Netherlands, have adopted policies to promote flexible arrangements for all 

workers—regardless of their caregiving responsibilities. Some, such as Germany also

allow for payment and training of family caregivers (AARP, 2017). Others, the U.K., f

example, offer workplace flexibilities specifically developed for family caregivers. A third

subset of countries, including, for example, Spain and France, are making progress 

toward implementing policies to reconcile caregiving with employment through 

initiatives such as unpaid leave for caregiving tasks

A frequently noted international trend involves financial support to family caregivers

Ireland, Slovakia, Luxemburg, and Canada offer cash payments either directly to the 

caregiver or to the person receiving support to purchase home care—including in 

some cases, care provided by relatives. In Slovakia, family caregivers also receive
RAISE Family Caregivers Act Initial Report To Congress Page 119

health insurance and other social contributions from the state in exchange for their 

caregiving (UNECE, 2019)

In tandem with policy initiatives, an increasing number of international private firms 

are implementing caregiver support programs. The European Foundation for the

Improvement of Living and Working Conditions conducted an information gathering 

effort in 2017 that highlighted 50 company initiatives across 10 member states that 

support workers with caregiver responsibilities (Embracing Carers, 2017). Most notable

among them is British Telecommunications (BT), which is based in 61 countries

BT attributes a 20% annual increase in production to “embracing flexible work 

accommodations for caregivers.”

While some countries are taking a broad approach to caregiver support, others are 

focusing on the needs of specific populations of caregivers. Many national dementia

care plans have expressly stated goals to support family caregivers. According to a

2020 report developed by the U.K.-based World Dementia Council, a broad variet

of dementia-friendly initiatives are being undertaken in Japan. For example, in 2019,

the Government of Japan announced a cross-ministerial dementia policy package 

called the Framework for Promoting Dementia Care. This framework focuses on risk

reduction and inclusion of people living with dementia. It will continue the momentum

built by the Five-Year Plan for the Promotion of Dementia Measures (the Orange Plan), 

which was released in 2012 and the Comprehensive Strategy to Accelerate Dementia 

Measures (the New Orange Plan), released in 2015

Despite these achievements, for some countries, there remains significant work to be 

done to identify and strengthen the voices of unpaid caregivers. In India for example,

unpaid caregivers are not formally recognized. Because that country’s census does not

collect data about the prevalence of caregiving, little is known about their numbers, 

needs, or circumstances. The Rights of Persons with Disabilities Act of 2016 offered

a provision for reimbursing caregivers who assist people with severe disabilities; 

however, it was not implemented

For more on global efforts to 

support caregivers of people 

living with ADRD, refer to 

Impacts of Dementia Friendly 

Initiatives developed by the 

World Dementia Council.

In other countries, there is little existing 

infrastructure in place to either acknowledge or 

support family caregivers. In Ukraine, for example,

no formal recognition of caregiving by family 

members and no educational programs exist

Moreover, due to rising inflation, many people 

in the country who might otherwise provide 

family caregiving, emigrate to work as paid caregivers in countries like Italy. Tha

leaves Ukraine’s growing population of older adults and people with disabilities to 

rely on remittances and institutionalization for long-term care, unless neighbors and 

community groups are available to provide ad hoc supportive services
RAISE Family Caregivers Act Initial Report To Congress Page 120

Implementation of a Caregiver Strategy in Australia

Caregivers—or “carers” as they are known outside the U.S.—make up about 12

of the Australian population, or 5.65 million people. Seventy-one percent of the

are women. For nearly half a century, the Australian government has been exploring

and testing how best to support this population (International Alliance of Carer 

Organizations, 2019)

In the early 2000s, national programs were developed to support caregiving youth, 

indigenous caregivers, and grandparent caregivers. In 2010, Australia passed the

Carer Recognition Act which acknowledges the significant role of caregivers and the 

importance of ensuring their needs are considered in policies, programs, and services 

that affect them. The Australian government further solidified this vision when it

released its National Carer Strategy 2011. The strategy allocated $60 million (AU) to

support and assist caregivers and mandated that they have the same “rights, choices, 

opportunities and capabilities to participate in the economic, social and community 

life” as do other Australians (Commonwealth of Australia, 2011)

Today, each state and territory has a non-government, non-profit organization that 

advocates on behalf of caregivers. This is in addition to providing services and support

directly to caregivers. The Australian government provides funding for caregiver

support groups, respite care, mental health supports, and HCBS for the person 

receiving support. A national online portal launched in 2019 provides a range of

supports for caregivers including counseling, peer support, coaching, and caregiver 

education and training. All of these resources were developed and tested by caregivers

in the public and private sectors

Caregivers in Australia still have some way to go until they feel fully supported in the 

workplace. Despite robust workplace protections, two-thirds of working caregivers

report that their caregiving “sometimes” or “often” interferes with their jobs. But

efforts of the last decade appear to be changing expectations around work and 

caregiving. Survey data reveals that, in New South Wales, caregiving is now viewed as

a community responsibility and most caregivers say they feel comfortable talking about 

their caregiving responsibilities in the work place (Carers NSW Australia, 2018)
RAISE Family Caregivers Act Initial Report To Congress Page 121

Engage Family Caregivers Every Step of the Way

The final word in the RAISE acronym is “engage.” Too often, clinical and social services

providers and policy makers do not actively engage (or involve) family caregivers in the 

care process and decision making. Their presence and support of family caregivers

is taken for granted. When decision makers do engage with caregivers, there is often

an underlying assumption that they are a homogenous group with similar needs, 

preferences, and availability to support any and all necessary tasks. Yet, no two

caregivers are exactly alike, even if the circumstances that made them a caregiver 

are the same. The stories of Allen, Beth, Jim, and Laura illustrate the importance

of understanding and embracing the fact that every caregiver has a unique story

Community resources, workplace policies, and social service programs that engage 

and adapt to meet the diverse needs of each caregiver have the power to dramatically 

improve the well-being, independence, and quality of life of caregivers and the people 

they assist

When caregivers are supported by a network of friends, neighbors, and community 

volunteers, they are better able to navigate the challenges of family caregiving. Not all

caregivers have an established network of social support, like Allen did, however. Thi

underscores the need to engage caregivers early in their caregiving journey through a 

caregiver assessment, the findings of which can be used to develop support plans that 

are culturally relevant, meaningful, and engaging. For more, refer to Recommendation

2.2, Recommendation 3.1 and Recommendation 

In 2016, Allen and his wife adopted three sibling sisters from India 

and began the process of building a loving home. Tragedy struck 

in 2018 when Allen’s wife discovered that she had Stage IV cancer. 

Sadly, after a short but “hard shot” battle, she passed away in 2020.

Allen’s greatest support in his care journey came in the form of his 

church community. He and his family are part of what Allen called a 

“large small church,” a big community where everyone knows each 

other. Before the COVID-19 pandemic, Allen found support from his 

spiritual community when they would bring his family meals and offer to watch the girls or to do 

work around the family’s home, such as yardwork and cleaning. During the pandemic, members 

of his community send Allen’s family restaurant gift cards, which Allen finds helpful to easily 

pick up food whenever he and his family need.

Allen pointed out that caregivers of cancer patients are often overlooked. Cancer treatments for 

the patient are covered under health insurance, but respite considerations for the caregiver are 

generally not, since cancer itself can be fairly well covered under health insurance. Caregivers 

such as Allen would benefit from policies that promote respite services, tax breaks, and 
RAISE Family Caregivers Act Initial Report To Congress Page 122

financial incentives for employers to better accommodate caregivers. During the pandemic, 

Allen found it especially difficult to be able to be there for his wife while she was seeking 

treatment. Due to COVID restrictions, patients were not allowed to have visitors with them 

during their treatments. Having someone to support them during treatment is vital to many 

cancer patients. Allen had been struggling to keep her out of the hospital much as possible 

during this time. For her last two chemotherapy appointments, which he always attended with 

her, he had to let her go alone. Allen would like policymakers to understand that caregiving is a 

full-time, full-attention job, and that caregivers need support on all levels in order to do that job.

Caregivers like Beth, who have a strong network of assistance and engagement, 

nonetheless experience the loneliness and isolation that is so often a part of caregiving

Her story is an example of why it is critical that providers look below the surface 

to assess the needs of each and every caregiver to ensure they are engaged with 

meaningful and culturally relevant support. For more, refer to Recommendation 3

Beth’s husband was diagnosed with colon cancer in 2016. He 

had surgery immediately upon diagnosis and, due to some 

complications, remained in the hospital for three weeks, where Beth 

stayed with him the entire time. Her husband eventually went into 

remission but passed away due to the cancer in 2018. 

Beth described her caregiving experience as “ideal” in the sense 

that her husband’s family was entirely made up of medical 

personnel, and that her own father had passed from the same 

cancer that her husband had. Though she had experience and familiarity on her side, caregiving 

was still extremely difficult. Her husband wanted to maintain his independence throughout and 

was not the type to ask others for help, so a lot of the care he needed fell on Beth.

Her husband’s care required seeing a doctor in New York, while they lived in D.C. Their 

insurance did not cover countless Amtrak trips, hotel stays, and food costs between both cities. 

They were fortunate to have the cost of these things crowdfunded for them through a supportive 

community. Due to the amount of time her husband spent in the hospital, Beth had to become 

fluent in the medical language to advocate for him. She had to know when and what medication 

he needed, and every time there was a new doctor, she had to re-explain his situation and fight 

for the correct care. Beth’s mindset turned to ignoring her own needs for fear of detracting from 

what he needed. 

Having found solace in other young widows, she now looks back and wishes she had been 

introduced to a group of young caregivers like herself, because nobody else could really 

understand what she was going through. Their brief time at home towards the end of his life, 

away from the hospital, was the most precious time to them, even though Beth had to spend 

that time as his nurse.
RAISE Family Caregivers Act Initial Report To Congress Page 123

Comprehensive family caregiver support programs like the one in which Jim and 

his wife participate, help ensure they are engaged and included in all relevant care 

coordination and transitions for their daughter, a Veteran. For too many caregivers,

this is not the case. Many family caregivers feel like bystanders, causing them to

feel unprepared to meet their caregiving responsibilities. For more on the importance

of recognizing the diverse needs of family caregivers and the fact that they play an 

integral role in health care planning and delivery, refer to Recommendation 1.1 and

Recommendation 2.

Jim and his wife care for their veteran daughter since she was 

in a car accident while stationed in Italy as an Army Captain. She 

suffered a traumatic brain injury and was in a coma for almost a 

year. Their daughter now needs 24/7 care. She has a feeding tube, 

has challenges with swallowing, needs help with all her activities 

of daily living, and spends most of her days either in her power 

wheelchair or in her bed. 

They have 4-5 full-time paid caregivers who help provide around-the-clock care. Jim says that 

if it weren’t for military benefits, they would be bankrupt. Their daughter officially retired four 

years ago and is in the Veteran Directed Care Program. This program has funds dedicated to 

paying for paid caregivers. The program pays for about half of their daughter’s annual $150,000 

caregiver expenses and her retirement money pays for the other half. Jim feels the VA is a good 

institution and is helpful in many areas, however, he said it can be very frustrating at times for 

families to have to ask for supportive services more than once. Eventually the VA agrees to the 

services, but only if the family is persistent. 

The Veteran Directed Care Program is a program that addresses the broader topic of caregiving. It 

allows the family to hire caregiver(s) to help in the care of their veteran family member. The family 

provides training on how to provide the care they want the veteran to receive, and the result 

is personalized medicine for the person receiving support. Jim said these caregiving jobs pay 

between $15-20 per hour, and the care provider gets to work with one family, usually for a long 

period of time. They do far more than just medical tasks—they provide meaningful care that has 

a profound effect on the entire family’s quality of life. Jim feels the cost of caring for someone at 

home is far less expensive than caring for them in an institution, making the Veteran Directed Care 

Program an ideal resource for caregivers of veterans. Jim believes policymakers should provide all 

caregivers with the support they need and the recognition they deserve. 

In the world of family caregiving, Laura’s story would be considered a success . 

Despite her husband’s critical health condition, Laura was able to continue working 

full-time and attend all of her husband’s medical appointments . Yet, as Laura 

acknowledges in her story, “luck, education, and social status” played a critical role in 

her ability to provide her husband the best care possible . It should not be that 
RAISE Family Caregivers Act Initial Report To Congress Page 124

way. Based on her experience, Laura believes that changes to workplace policies ar

critical to ensuring “everyone gets to have a caregiving experience where they can 

devote their time, energy, and love wholly to the person they are caring for.” For more

refer to Recommendation 4.

Laura spent two years caring for her husband, who was diagnosed 

with stage IV neuroendocrine pancreatic cancer. They proceeded 

with chemotherapy, radiation, and surgery to close off blood 

vessels in his liver that were feeding the cancer. Her husband then 

underwent an extensive surgery involving an organ transplants for 

five of his organs. Unfortunately, he had multiple complications 

requiring him to spend nearly seven months in the hospital. 

Ultimately, Laura’s husband lost his fight with cancer as the cancer 

returned to his bones.

As his caregiver, Laura attended all her husband’s doctor visits and hospital stays, taking 

extensive notes from their many appointments with various teams of doctors and medical staff. 

She kept track of his medication, which as a transplant patient, was a major task with over 

a dozen medications given daily at different times, managed several pumping systems (both 

IV and gastric tube feeds) as well as ostomy care, insulin for steroid-induced diabetes, and 

extensive daily data collection. His condition left him very weak, so Laura needed to lift her 

husband to move him from his bed to his wheelchair and back multiple times every day, as well 

as be able to deadlift him off the floor. 

Even though Laura’s caregiving journey was extremely stressful, and emotionally and physically 

exhausting, she recognizes that she was fortunate. Laura’s place of employment offered 

excellent insurance and a lot of flexibility to allow her to remain working full-time while caring 

for her husband. The Affordable Care Act allowed Todd to come onto her insurance with a preexisting condition, and barred any lifetime coverage caps, which would have been triggered 

with the surgery alone. Laura’s experience taught her that luck, education, and social status 

should not play into being able to provide good care to your family member. Most caregivers 

caring for someone with a condition like her husband’s might have spent tens of thousands of 

dollars in transportation, childcare, and home aides to help lift him multiple times a day; they 

would probably need to apply for family leave under the Family and Medical Leave Act (FMLA) to 

get three months of unpaid leave. Laura would like to see policy changes that ensure everyone 

gets to have a caregiving experience where they can devote their time, energy, and love wholly 

to the person they’re caring for.
RAISE Family Caregivers Act Initial Report To Congress Page 125

VI. Conclusion 

Scope of this Report

Family caregiving encompasses a broad spectrum of activities. When a person

becomes a family caregiver, every aspect of their life can be affected, including 

personal identity, relationships, finances, employment, physical health, mental health, 

etc. It is not possible for a single report to address every aspect of family caregiving

and how it impacts individuals, families, and society. In developing this initial report to

Congress in late 2020 through summer 2021, the council focused solely on meeting 

the requirements of the RAISE Family Caregivers Act. There is much more to be said

about caregiving than is articulated in this report. In developing the National Family

Caregiving Strategy, the council will explore topics that are beyond the scope of 

this report. Those include the quickly evolving landscape emerging as a result of the

President’s Build Back Better plan, which, if passed, will affect family caregivers

The Road Ahead: A National Family Caregiving Strategy

In November 2020, the council adopted 26 recommendations to improve and better 

coordinate federal, state, tribal, and community programs and activities to recognize 

and support family caregivers. These recommendations are a critical component in the

development of the National Family Caregiving Strategy. They cover a range of critica

issues the nation must address in bold and meaningful ways in order to demonstrate 

that it values the contributions of family caregivers and it recognizes that people 

become caregivers for a host of reasons and their caregiving has measurable impacts 

on their physical, mental, and financial health and well-being. These recommendations

provide a path to better recognizing and supporting family caregivers, and in turn, 

supporting independence and self-determination for millions of older adults and people 

with disabilities. Even more important, the recommendations, when fully implemented,

will ensure family caregivers are able to continue to support others while successfully 

balancing their own needs and responsibilities

Over time, as the recommendations are integrated into the existing caregiver support 

systems and national, state, and community policies, they will ensure that family 

caregivers have a culturally sensitive, flexible, and affordable system of supports 

and services that meet their needs and assist them in meaningful ways. The council

recognizes that this work will not happen overnight; the road ahead will be long, and 

there will be many obstacles. The field of caregiving is so diverse that there are few

simple solutions. The nation faces significant challenges as it works to ensure our

family caregivers are supported, so that they, in turn, can support the people they 

care for. Working with ACL and its partners on the development of the National Family

Caregiving Strategy, the council is committed to surmounting each challenge that 

arises, to achieve the original vision of the RAISE Family Caregivers Act
RAISE Family Caregivers Act Initial Report To Congress Page 126

The timing could not be better. As the nation recovers from the COVID-19 pandemic,

now is the time to rebuild the infrastructure that supports family caregivers so they 

are prepared for the future. As the nation considers how to address inequities in

communities across the nation, it is important to remember that those inequities 

extend to family caregivers. The nation’s millions of family caregivers give selflessly

so others can live meaningful lives with dignity and independence. Their work comes

at great personal costs to themselves, their families, their finances, and their health

This is especially true for caregivers of color and those who live in underserved 

communities or lack access to supports and services

“We must change our paradigm and shift our outlook on what it 

means to thrive and how we value others.”

-James Murtha, MSW, member of the Family Caregiving Advisory Council

Through wide adoption and uptake of the 26 recommendations in this report and 

the forthcoming National Family Caregiving Strategy, an alternative vision for family 

caregivers is possible. In that vision, family caregivers will be truly recognized for their

contributions and they will recognize their own efforts as part of a formal activity; they 

will receive the assistance they need to perform their tasks, whether it is education, 

advice, or practical help; they will be included in key decisions, including policy 

decisions, about family caregiving; they will receive support, whether financial or 

practical, so they can continue to be caregivers; and most importantly, they will be 

engaged in all future work to aid family caregivers

The nation’s millions of family caregivers—and the people they support—deserve no less
RAISE Family Caregivers Act Initial Report To Congress Page 127

Acronyms and Abbreviations

■ ACL: Administration for Community Living

■ ACS: American Community Survey

■ ADA: Americans with Disabilities Act

■ ADPI: Alzheimer’s Disease Programs Initiative (ACL)

■ BRFSS: Behavioral Risk Factor Surveillance System

■ CDC: Centers for Disease Control and Prevention

■ CFPB: Consumer Financial Protection Bureau

■ CMA: Center for Medicare Analysis

■ CMS: Centers for Medicare & Medicaid Services

■ CSC: Caregiver Support Coordinator (VA)

■ CSP: Caregiver Support Program (VA)

■ HCBS: Home and community-based services

■ HHS: U.S. Department of Health and Human Servic

■ IDD: Intellectual and Developmental Disabilities

■ JAHF: The John A. Hartford Foundatio

■ LGBTQ+: Lesbian, gay, bisexual, transgender, queer and/or questioning, and others

■ LTSS: Long-term services and supports 

■ MCOs: Managed Care Organizations

■ NAC: National Alliance for Caregivers

■ NAPA: National Alzheimer’s Project Act

■ NASHP: National Academy for State Health Policy

■ NFCSP: National Family Caregiver Support Program (ACL)

■ NHATS: National Health and Aging Trends Study

■ OAA: Older Americans Act

■ PCPID: President’s Committee for People with Intellectual Disabilities (ACL)

■ RAISE: Recognize, Assist, Include, Support, & Engage Act of 2017

■ RFI: Request for Information

■ SGRG: The Supporting Grandparents Raising Grandchildren Act of 2017

■ VA: U.S. Department of Veterans Affai
RAISE Family Caregivers Act Initial Report To Congress Page 128

Works Cited

AARP. (2017). The Aging Readiness & Competitiveness Report - Germany. Retriev

from https://arc.aarpinternational.org/File%20Library/Full%20Reports/ARCReport---Germany.

AARP. (2020). Advancing action: a state scorecard on long-term services and support

for older adults, people with physical disabilities, and family caregivers.

Retrieved from http://www.longtermscorecard.org/~/media/Microsit

Files/2020/LTSS%202020%20Reference%20Edition%20PDF%20923.pd

AARP and National Alliance for Caregiving. (2020). Caregiving in the United State

2020. Washington (DC): AARP. Retrieved July 28, 2020, from https://www.aa

org/content/dam/aarp/ppi/2020/05/full-report-caregiving-in-the-united-states

doi.10.26419-2Fppi.00103.00

Administration for Children and Families. (2020). Children Living in Kinship Care an

Nonrelative Foster Care Are Unlikely to Receive Needed Early Intervention 

or Special Education Services. Office of Planning, Research and Evaluation 

Administration for Children and Families. Retrieved from https://www.acf.

gov/sites/default/files/documents/opre/ifsp_iep_spotlight_final508.pd

Administration for Community Living. (2017, December 1). History of the DD Ac

Retrieved October 14, 2020, from ACL.gov: https://acl.gov/about-acl/historydd-a

Administration for Community Living. (2018). Data-at-a-glance (Title VI service

Washington, DC. Retrieved February 18, 2021, from https://agid.acl.g

DataGlance/NA/

Administration for Community Living. (2021). 2020 Profile of Older Americans

https://acl.gov/sites/default/files/Aging%20and%20Disability%20in%2

America/2020ProfileOlderAmericans.Final_.p

Alzheimer’s Association. (2021). 2021 Alzheimer’s disease facts and figur

Alzheimer’s & Dementia, 16(3), p. 391+. Retrieved from https://www.alz.

media/Documents/alzheimers-facts-and-figures.pd

American Psychological Association. (2011). Cultural diversity and caregivin

Retrieved from apa.org: https://www.apa.org/pi/about/publications/caregive

faq/cultural-diversity
RAISE Family Caregivers Act Initial Report To Congress Page 129

Ankuda, C. K., Maust, D. T., Kabeto, M. U., McCammon, R. J., Langa, K. M., 

D. A. (2017, October). Association Between Spousal Caregiver Well-Being a

Care Recipient Healthcare Expenditures. Journal of the American Geriatrics

Society, 65(10), pp. 2220-2226. https://doi.org/10.1111/jgs.

ARCH National Respite Network and Resource Center. (2019 Update). Medicai

Waivers for Respite Support State-by-State Summaries of Medicaid Waiver 

Information. Retrieved from https://archrespite.org/images/docs/Guides

Compendiums/Medicaid_Waivers_for_Respite_2019.pd

Auerbach, E., Perry, H., & Chafouleas, S. (2019). Stress: Family Caregivers

Children with Disabilities. UConn Collaboratory on School and Children Health, 

Storrs, CT. Retrieved from https://csch.uconn.edu/wp-content/uploa

sites/2206/2019/11/CSCH-Brief-Caregiver-Stress-November-2019.pd

Aufill, J., Burgdorf, J., & Wolff, J. (2019). In Support of Family Caregivers: A Snaps

of Five States. Baltimore, MD: Johns Hopkins Bloomberg School of Public 

Health. Retrieved from https://www.milbank.org/wp-content/uploads/2019/

MMF_Caregiver_Report_6.19.p

Avison, C., Brock, D., Campione, J., Hassell, S., Rabinovich, B., Ritter

Zebrak, K. (2018). Outcome Evaluation of the National Family Caregiver Suppor

Program. Rockville, MD: Westat. Retrieved from https://acl.gov/sites/defaul

files/programs/2018-12/Caregiver_Outcome_Evaluation_Final_Report.pd

Baruch, J. (2018, February 12). Caring for the caregiver in the emergency departme

Stat. Retrieved October 12, 2020, from https://www.statnews.com/2018/02/1

caregiver-family-emergency-department/

Biello, S., Tomolo, A., Abraham, C., Escoffery, C., Lang, D., Sawyer, C., & Thom

N. (2019, February 28). A Qualitative Evaluation of Caregiver Support Service

Offered at the Atlanta Veterans Affairs Health Care System. Preventing Chronic

Disease, 16. http://dx.doi.org/10.5888/pcd16.18

Braddock, D. L., Hemp, R. E., Tanis, E. S., Wu, J., & Haffer, L. (2017). Stat

States in Intellectual and Developmental Disabilities, 11th edition. Retrieved 

from https://www.aaidd.org/publications/bookstore-home/product-listing/stateof-the-states-in-intellectual-and-developmental-disabilities-11th-editi

Bridgeland, J. M., DiIulio, J. J., & Burke Morison, K. (2006). The Silent Epid

Perspectives of High School Dropouts. Civic Enterprises in association with Peter 

D. Hart Research Associates for the Bill & Melinda Gates Foundation. Retrieve

from http://www.ignitelearning.com/pdf/TheSilentEpidemic3-06FINAL.
RAISE Family Caregivers Act Initial Report To Congress Page 130

Burden, L. (2019, July 22). The Economic Cost of Caregiving Could Double by 205

Retrieved October 14, 2020, from https://www.hrdive.com/news/the-economiccost-of-caregiving-could-double-by-2050/55901

Campbell, S., Del Rio Drake, A., Espinoza, R., & Scales, K. (2021). Caring for

Future: The Power and Potential of America’s Direct Care Workforce. Bronx, NY: 

PHI. Retrieved from https://phinational.org/resource/caring-for-the-future-thepower-and-potential-of-americas-direct-care-workforce/#:~:text=’Caring%

for%20the%20Future’%20describes,the%20long%2Dterm%20care%20sector

Carers NSW Australia. (2018). Carers NSW 2018 National Carer Survey; Summar

Report. Retrieved from https://www.carersnsw.org.au/uploads/main/File

About-us/Our-research/Carer-Survey-Report_2018.pd

Carlson, E. (2016). Voluntary Means Voluntary: Coordinating Medicaid HCBS wit

Family Assistance (Issue Brief). Justice in Aging. Retrieved from https://ww

justiceinaging.org/wp-content/uploads/2016/05/Voluntary-Means-VoluntaryCoordinating-Medicaid-HCBS-with-Family-Assistance.p

Center for Medicare Advocacy. (2020). Medicare and Family Caregivers. Retrieved fro

https://medicareadvocacy.org/wp-content/uploads/2020/06/Medicare-andFamily-Caregivers-June-2020.p

Centers for Disease Control and Prevention. (2020, December 10). Introduction t

COVID-19 Racial and Ethnic Health Disparities. Retrieved February 1, 2021, 

from cdc.gov: https://www.cdc.gov/coronavirus/2019-ncov/community/healthequity/racial-ethnic-disparities/index.

Centers for Disease Control and Prevention. (2020, August 14). Mental Health

Substance Use, and Suicidal Ideation During the COVID-19 Pandemic — United 

States, June 24–30, 2020. Morbidity and Mortality Weekly Report, 69(32

Retrieved October 14, 2020, from https://www.cdc.gov/mmwr/volumes/69/w

pdfs/mm6932a1-H.pd

Centers for Medicare & Medicaid Services. (2021, February). February 2021 Medicai

& CHIP enrollment data highlights. Retrieved from Medicaid.gov: https://ww

medicaid.gov/medicaid/program-information/medicaid-and-chip-enrollmentdata/report-highlights/index.ht

Centers for Medicare & Medicaid Services. (2020a). Long-Term Services and Support

Rebalancing Toolkit. Retrieved from https://www.medicaid.gov/medicaid/longterm-services-supports/downloads/ltss-rebalancing-toolkit.
RAISE Family Caregivers Act Initial Report To Congress Page 131

Centers for Medicare & Medicaid Services. (2020b). Medicaid. Retrieved from https:

www.medicaid.gov/medicaid/index.h

Centers for Medicare & Medicaid Services. (2020c, September). Medicare & Hom

Health Care. Baltimore (MD). https://www.medicare.gov/sites/default/files/20

10/10969-Medicare-and-Home-Health-Care.pd

Centers for Medicare & Medicaid Services. (2020). Annual Medicaid & CHI

expenditures. Retrieved November 17, 2020, from Medicaid.gov: https://ww

medicaid.gov/state-overviews/scorecard/annual-medicaid-chip-expenditures

index.htm

Centers for Medicare & Medicaid Services. (2021, April 7). Home health qualit

reporting program. Retrieved April 28, 2021, from CMS.gov: https://ww

cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments

HomeHealthQualityInits

Centers for Medicare & Medicaid Services. (n.d.). What’s Medicare? https:/

medicare.gov/what-medicare-covers/your-medicare-coverage-choices/whatsmedicar

Centers for Medicare & Medicaid Services. (2021, July 7). Home Health Qualit

Reporting Program. Retrieved August 26, 2021, from CMS.gov: https:/

www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instrument

HomeHealthQualityInits

Chari, A. V., Engberg, J., Ray, K. N., & Mehrotra, A. (2015, June 2015

Opportunity Costs of Informal Elder-Care in the United States: New Estimates 

from the American Time Use Survey. Health Services Research, 50(3). https:

doi.org/10.1111/1475-6773.12

Child Welfare Information Gateway. (2019). Children’s Bureau Grantee Synthesis

Kinship Navigator Programs. Retrieved October 22, 2020, from https://www

childwelfare.gov/pubPDFs/kinshipnavigator.p

Choula, R., Snyder, R., & The John A. Hartford Foundation. (2020, December 4).

Size Doesn’t Fit All: Recognizing Diverse Caregiver Experiences. Next Avenue

Retrieved December 10, 2020, from https://www.nextavenue.org/recognizingdiverse-caregiver-experience

Commonwealth of Australia. (2011). National Carer Strategy. Retrieved from https://w

carerstas.org/wp-content/uploads/2017/06/2011-National-Carer-Strategy.p
RAISE Family Caregivers Act Initial Report To Congress Page 132

Eifert, E. K., Adams, R., Dudley, W., & Perko, M. (2015, November 9). Family Care

Identity: A Literature Review. American Journal of Health Education, 357

367. Retrieved October 9, 2020, from https://www.tandfonline.com/d

abs/10.1080/19325037.2015.1099482?journalCode=ujh

Embracing Carers. (2017). 2017 Carers Report: Embracing the Critical Role o

Caregivers Around the World. Retrieved from https://www.embracingcarer

com/content/dam/web/healthcare/corporate/embracing-carers/media/

infographics/us/Merck%20KGaA%20Embracing%20Carers_White%20

Paper%20Flattened.pd

Etters, L., Goodall, D., & Harrison, B. (2008, August 5). Caregiver burden am

dementia patient caregivers: a review of the literature. Journal of the American

Academy of Nurse Practitioners, 20(8), 423-8. https://doi.org/10.1111/j.1

7599.2008.0034

Evercare in collaboration with National Alliance for Caregiving. (2007). Famil

Caregivers – What They Spend, What They Sacrifice. Retrieved from 

https://www.caregiving.org/wp-content/uploads/2020/05/Evercare_NA

CaregiverCostStudyFINAL20111907.pd

Ewing-Nelson, C., & Tucker, J. (2021). A Year into the Pandemic, Women are Still Sho

Nearly 5.1 Million Jobs [Fact sheet]. National Women’s Law Center. Retrieved

from https://nwlc.org/wp-content/uploads/2021/03/Feb-Jobs-Day-v2.p

Family Caregiving Issues and the National Family Caregiver Support Program, Written 

Testimony of Former First Lady Rosalynn Carter. (2011, May 26). 112th U.S

Congress. Retrieved 14 2021, June, from https://www.aging.senate.gov/

media/doc/hr235rc.pd

Feinberg, L. F. (2019, September). Breaking New Ground: Supporting Employed Fami

Caregivers with Workplace Leave Policies. Washington (DC): AARP Public

Policy Institute. Retrieved June 14, 2021, from https://www.aarp.org/conte

dam/aarp/ppi/2018/08/breaking-new-ground-supporting-employed-familycaregivers-with-workplace-leave-policies.pd

Feinberg, L., & Houser, A. (2012, June). Assessing family caregiver needs: Policy a

practice considerations [Fact sheet]. AARP Public Policy Institute. Retrieve

from https://www.aarp.org/content/dam/aarp/research/public_policy_institut

ltc/2012/caregiver-fact-sheet-AARP-ppi-ltc.pd
RAISE Family Caregivers Act Initial Report To Congress Page 133

Fox-Grage, W. (2020). Inventory of Key Family Caregiver Recommendation

Washington (DC): National Academy for State Health Policy. Retrieved from

https://www.nashp.org/inventory-of-key-family-caregiver-recommendation

Freedman, V. A., & Wolff, J. L. (2020). The Changing Landscape of Family Caregi

in the United States. AEI-Brookings Paid Leave Project. Retrieved from

https://www.aei.org/wp-content/uploads/2020/11/Paid-Leave-for-Caregivi

pdf?x91208

Friedman, C. (2017). A National Analysis of Medicaid Home and Community Base

Services Waivers for People With Intellectual and Developmental Disabilities: FY 

2015. 55(5), 281-302. https://doi.org/10.1352/1934-9556-55

Friedman, C. (2020, May). The Impact of Direct Support Professional Turnover on th

Health and Safety of People With Intellectual and Developmental Disabilities

Inclusion, 9(1), pp. 63-73. http://dx.doi.org/10.1352/2326-6988

Friedman, C., Caldwell, J., Rapp Kennedy, A., & Rizzolo, M. C. (2019). Aging in P

A National Analysis of Home- and Community-Based Medicaid Services for 

Older Adults. Journal of Disability Policy Studies, 29(4), 245-256. https://d

org/10.1177%2F104420731878888

Generations United. (2018). Raising the Children of the Opioid Epidemic: Solution

and Support for Grandfamilies [2018 update]. Retrieved October 14, 2020, 

from https://www.gu.org/app/uploads/2018/09/Grandfamilies-Report-SOGFUpdated.

Generations United. (2020). Kinship Navigator Programs - Summary & Analysis

Retrieved from Grandfamilies.org: http://www.grandfamilies.org/Topics/KinshipNavigator-Programs/Kinship-Navigator-Programs-Summary-Analy

Gitlin, L., Marx, K., Stanley, I., & Hodgson, N. (2015, April). Translating EvidenceBased Dementia Caregiving Interventions into Practice: State-of-the-Sci

and Next Steps. Gerontologist, 55(2), 210-26. Retrieved from https://www.n

nlm.nih.gov/pmc/articles/PMC454283

Gray, B. B., & Firpo-Cappiello, R. (2018, April/May). Clinical Trials for Caregivers 

to Combat Stress and Fatigue. Brain & Life. Retrieved October 12, 2020, from

https://www.brainandlife.org/articles/researchers-are-increasingly-interested-instudying-caregivers-with-the-goa
RAISE Family Caregivers Act Initial Report To Congress Page 134

Hecht, E., Reynolds, M., Agosta, J., McGinley, K., & Moseley, C. (2011). Bui

a National Agenda for Supporting Families with a Member with Intellectual 

and Developmental Disabilities. Report of the Wingspread Conference on 

building a family support agenda, March 6-8, 2011. Racine, WI: Johnson 

Foundation. Retrieved from http://supportstofamilies.org/wp-content/upload

WingspreadReport-2012-Rev-52912-Compressed.pd

Institute of Medicine (US) Committee on the Future Health Care Workforce for Older 

Americans. (2008). Retooling for an Aging America: Building the Health Car

Workforce. Washington (DC): National Academies Press (US). https://pubme

ncbi.nlm.nih.gov/250098

International Alliance of Carer Organizations. (2019). Carer Practices in Austral

Retrieved October 15, 2020, from https://www.embracingcarers.com/conten

dam/web/healthcare/corporate/embracing-carers/media/infographics/us/

Australia%20Report_KGaA.pd

Iron Cloud-Two Dogs, E. (n.d.). Unci Na Gaka: Lakota Grandparents Perspecti

on Raising Grandchildren. Colorado State University. Retrieved March

3, 2021, from https://tribalinformationexchange.org/files/resources

GrandparentsZRaisingZGrandchildrenZEICTDZ2011.pd

Kaye, N., & Teshale, S. (2020). Medicaid Supports for Family Caregivers. Washingt

(DC): National Academy for State Health Policy. Retrieved from https://ww

nashp.org/medicaid-supports-for-family-caregivers

Kaye, S., Harrington, C., & LaPlante, M. (2010, January). Long-Term Care: Who G

It, Who Provides It, Who Pays, And How Much? Health Affairs. https://www

healthaffairs.org/doi/10.1377/hlthaff.2009.

Kelly, K., Wolfe, N., Gibson, M. J., & Feinberg, L. (2013). Listening to F

Caregivers: The Need to Include Family Caregiver Assessment in Medicaid 

Home- and Community-Based Service Waiver Programs. Washington (DC): 

AARP Public Policy Institute. Retrieved October 12, 2020, from https://ww

aarp.org/content/dam/aarp/research/public_policy_institute/ltc/2013/the-needto-include-family-caregiver-assessment-medicaid-hcbs-waiver-programs-reportAARP-ppi-ltc.p
RAISE Family Caregivers Act Initial Report To Congress Page 135

Larson, S., Eschenbacher, H., Pettingell, S., Anderson, L., Taylor, B., Sowers, 

Bourne, L. (2020). In-Home and Residential Long-Term Supports and Service

for Persons with Intellectual or Developmental Disabilities: Status and Trends 

2017. Minneapolis: University of Minnesota, Research and Training Center on 

Community Living, Institute on Community Integration. Retrieved from https:/

ici-s.umn.edu/files/aCHyYaFjMi/risp_20

Matthews, K. A., Xu, W., Gaglioti, A. H., Holt, J. B., Croft, J. B., Mack, D., &

L. C. (2019, January). Racial and ethnic estimates of Alzheimer’s disease a

related dementias in the United States (2015-2060) in adults aged ≥ 65 years

Alzheimers & Dementia, 15(1), 17-24. Retrieved from https://alz-journal

onlinelibrary.wiley.com/doi/abs/10.1016/j.jalz.2018.

McCleary, K. K. (2019). Paving the path for family-centered design: A national repo

on family caregiver roles in medical product development. National Alliance for 

Caregiving; Leaders Engaged in Alzheimer’s Disease. Retrieved October 12,

2020, from https://www.caregiving.org/wp-content/uploads/2020/05/NA

LEAD-Coalition_Paving-the-Path_Report_May-2019.pd

Moon, M. (1996, Winter). What Medicare Has Meant to Older Americans. Health Ca

Financing Review, 18(2). Retrieved from https://www.ssa.gov/history/p

WhatMedicareMeant.pd

Mudrazija, S., & Johnson, R. W. (2020). Economic impacts of programs to supp

caregivers: Final report. Washington (DC): Urban Institute. Retrieved from

https://aspe.hhs.gov/basic-report/economic-impacts-programs-supportcaregivers-final-report#litr

Murray, C., Tourtellotte, A., Lipson, D., & Wysocki, A. (2021). Medicaid long 

services and supports annual expenditures report federal fiscal years 2017 and 

2018. Chicago, IL: Mathemetica. Retrieved from medicaid.gov/medicaid/longterm-services-supports/downloads/ltssexpenditures-2017-2018.

Musumeci, M., O’Malley Watts, M., & Chidambaram, P. (2020). Key State Pol

Choices About Medicaid Home and Community-Based Services. Kaiser Family 

Foundation. Retrieved from https://www.kff.org/report-section/key-state-policychoices-about-medicaid-home-and-community-based-services-issue-bri

Nadash, P., Jansen, T., Tell, E., & Cohen, M. (2020). In their own words-careg

priorities and recommendations: Results from a request for information. Leading 

Age LTSS Center @UMass Boston and Community Catalyst
RAISE Family Caregivers Act Initial Report To Congress Page 136

National Academies of Sciences, Engineering, and Medicine. (2016). Families carin

for an aging America. Washington (DC): The National Academies Press

Retrieved June 30, 2020, from http://www.nap.edu/236

National Academies of Sciences, Engineering, and Medicine. (2021). Meeting th

challenge of caring for persons living with dementia and their care partners and 

caregivers: A way forward. Washington, DC: The National Academies Press

https://doi.org/10.17226/260

National Alliance for Caregiving. (February 2016). On Pins and Needles: Caregive

of Adults with Mental Illness. Washington (DC). Retrieved from https://ww

caregiving.org/wp-content/uploads/2020/05/NAC_Mental_Illness_Study_2016

FINAL_WEB-1.pd

National Alliance for Caregiving in Collaboration with United Hospital Fund. (2005

Young Caregivers in the U.S. Retrieved October 13, 2020, from https://www

caregiving.org/wp-content/uploads/2020/05/youngcaregivers.p

Pine Ridge Indian Reservation. (2021). Facts About Pine Ridge. Retrieved February 18

2021, from Re-Member.org: https://www.re-member.org/pine-ridge-reservat

Pinquart, M., & Sorenson, S. (2005, February 1). Ethnic differences in stressor

resources, and psychological outcomes of family caregiving: A meta-analysis

The Gerontologist, 45(1), 90-106. https://doi.org/10.1093/geront/45

Poulin, M. J., Brown, S. L., Ubel, P. A., Smith, D. M., Jankovic, A., & & L

(2010). Does a helping hand mean a heavy heart? Helping behavior and wellbeing among spouse caregivers. 25(1), pp. 108-117. http://dx.doi.org/1

a0018064

President’s Committee for People with Intellectual Disabilities. (2017). Report to th

President 2017: America’s direct support workforce crisis. Retrieved from 

https://acl.gov/sites/default/files/programs/2018-02/2017%20PCPID%2

Full%20Report_0.PD

Rainville, C., Skufca, L., & Mehegan, L. (November 2016). Family Caregiving 

Out-of-Pocket Costs: 2016 Report. Washington (DC). Retrieved from https:/

www.aarp.org/content/dam/aarp/research/surveys_statistics/ltc/2016/familycaregiving-costs.doi.10.26419%252Fres.00138

RAISE Family Caregivers Act of 2017. (2018, January 22). H.R. 3759, P.L. 115-11

Section 2. Retrieved from https://acl.gov/sites/default/files/about-acl/2018-10

PLAW-115publ119%20-%20RAISE.pd
RAISE Family Caregivers Act Initial Report To Congress Page 137

Ramchand, R., Tanielian, T., Fisher, M. P., Vaughan, C. A., Trail, T. E., Ba

Ghosh-Dastidar, B. (2014). Hidden Heroes: America’s Military Caregivers. San

Monica, Calif: RAND Corporation. Retrieved June 14, 2021, from https://ww

rand.org/pubs/research_reports/RR499.ht

Reinhard, S. C., Feinberg, L. F., Houser, A., Choula, R., & Evans, M.

Valuing the invaluable: 2019 update. AARP Public Policy Institute. Retrieved

October 9, 2020, from https://www.aarp.org/content/dam/aarp/ppi/2019/1

valuing-the-invaluable-2019-update-charting-a-path-forward.doi.10.264

2Fppi.00082.001.

Reinhard, S. C., Young, H. M., Ryan, E., & Choula, R. B. (March 2019). The C

Implementation: Progress and Promise. Washington (DC): AARP Public Policy 

Institute. Retrieved October 9, 2020, from https://www.aarp.org/content/d

aarp/ppi/2019/03/the-care-act-implementation-progress-and-promise.pd

Reinhard, S., Young, S., Levine, C., Kelly, K., Choula, R., & Accius, J. (2019)

Alone Revisited. Washington (DC): AARP Public Policy Institute. Retrieved

October 14, 2020, from https://www.aarp.org/content/dam/aarp/ppi/2019/0

home-alone-revisited-family-caregivers-providing-complex-care.pd

Roberts, E., & Struckmeyer, K. M. (2018, February 9). The impact of resp

programming on caregiver resilience in dementia care: A qualitative 

examination of family caregiver perspectives. Inquiry: The Journal of

Health Care Organization, Provision, and Financing, 55. https://doi

org/10.1177/004695801775150

Singleton, A. (2020, March 4). The future of family caregiver support is diverse an

inclusive. Retrieved from AARP.org: https://feeds.aarp.org/caregiving/basi

info-2020/inclusive-support-for-diverse-caregivers.html?_amp=tru

Spetz, J., Stone, R., Chapman, S., & Bryant, N. (2019). Home And community-b

workforce for patients with serious illness requires support to meet growing 

needs. Health Affairs, 6, pp. 902-9. https://www.healthaffairs.org/doi/10

hlthaff.2019.000

Spillman, B., & Urban Institute. (2016). Does home care prevent or defer nursing ho

use. Office of the Assistance Secretary for Planning and Evaluation. Retrieved

from https://aspe.hhs.gov/basic-report/does-home-care-prevent-or-defernursing-home-u
RAISE Family Caregivers Act Initial Report To Congress Page 138

Stein, P., & Strauss, V. (2020, August 7). Special education students are not just falli

behind in the pandemic — they’re losing key skills, parents say. The Washington

Post. Retrieved October 14, 2020, from https://www.washingtonpost.com/loca

education/special-education-students-are-not-just-falling-behind--theyre-losingkey-skills-parents-say/2020/08/05/ec1b91ca-cffd-11ea-9038-af089b63ac21_

story.htm

Stevenson, B., & Sawhill, I. V. (2020). Paid leave for caregiving. AEI-Brooki

Institute. Retrieved from https://www.aei.org/wp-content/uploads/2020/

Paid-Leave-for-Caregiving.pdf?x9120

Supporting Grandparents Raising Grandchildren Act (S.1091). (201

Taylor, P., Parker, K., Patten, E., & Motel, S. (2013). The sandwich generation: ri

financial burden for middle-aged Americans. Washington (DC): Pew Research 

Center. Retrieved from https://www.pewresearch.org/social-trends/wp-conte

uploads/sites/3/2013/01/Sandwich_Generation_Report_FINAL_1-29.pd

UNECE. (2019). The Challenging Roles of Informal Carers (Policy Brief). UNE

Retrieved from https://www.unece.org/fileadmin/DAM/pau/age/Policy_brief

ECE_WG1_31.pd

United States Bureau of Labor Statistics. (2020, March 19). Employment situation o

veterans--2019. Retrieved October 14, 2020, from https://www.bls.gov/n

release/pdf/vet.pdf?utm_source=MichiganPolicas

United States Bureau of Labor Statistics. (2021). Table 1.A Employment status of th

civilian population by sex and age. Retrieved from https://www.bls.gov/ne

release/empsit.t01.h

United States Census Bureau. (2017). 2017 National population projections tables

Main series (table2). Retrieved from https://www.census.gov/data/tables/201

demo/popproj/2017-summary-tables.htm

United States Census Bureau. (2018). American Community Survey disabilit

characteristics, table S1819. Retrieved October 15, 2020, from https:/

data.census.gov/cedsci/table?q=S1810%3A%20DISABILITY%

CHARACTERISTICS&hidePreview=true&tid=ACSST1Y2018.S181

United States Census Bureau. (2019). American Community Survey (grandparents

Retrieved from https://data.census.gov/cedsci/table?q=S1002&g=0100000U

tid=ACSST1Y2019.S1002&hidePreview=fals
RAISE Family Caregivers Act Initial Report To Congress Page 139

University of Pittsburgh. (2020). Effects of COVID-19 on family caregivers: 

community survey from the University of Pittsburgh. Retrieved from http://www

caregiving.pitt.edu/wp-content/uploads/2020/07/Full_Report_Final.

Veghte, B. W., Bradley, A. L., Cohen, M., & Hartmann, H. (2019). Designing Un

Family Care: State-Based Social Insurance Programs for Early Child Care 

and Education, Paid Family and Medical Leave, and Long-Term Services and 

Supports. Washington (DC): National Academy of Social Insurance. Retrieve

from https://universalfamilycare.org/wp-content/uploads/2019/06/DesigningUniversal-Family-Care_Digital-Version_FINAL.p

Wakabayashi, C., & Donato, K. M. (2006, September). Does caregiving incre

poverty among women in later life? Evidence from the Health and Retirement 

survey. J Health Soc Behav, 47(3), 258-74. https://pubmed.ncbi.nl

gov/17066776/

Wolff, J. L., & Kasper, J. D. (2006). Caregivers of frail elders: Updating a nati

profile. The Gerontologist, 46(3), 344-35

Wolff, J. L., Darer, J. D., & Larsen, K. L. (2016). Family Caregivers and Co

Health Information Technology. Journal of General Internal Medicine, 31(1), 117

121. https://doi.org/10.1007/s11606-015-349

Wolff, J. L., Spillman, B. C., Freedman, V. A., & Kasper, J. D. (2016). A

Profile of Family and Unpaid Caregivers Who Assist Older Adults With Health 

Care Activities. JAMA Internal Medicine, 176(3), pp. 372-379. https://

org/10.1001/jamainternmed.2015.7

Wolff, J., Freedman, V., Mulcahy, J., & Kasper, J. (2020). Family caregiv

experiences with health care workers in the care of older adults with activity 

limitations. JAMA Network Open, 3(1). https://jamanetwork.com/journa

jamanetworkopen/fullarticle/2759281
RAISE Family Caregivers Act Initial Report To Congress Page 140

Acknowledgements

One of the key themes of this report is that no matter how dedicated and resilient 

they are, family caregivers need support and assistance in order to fulfill their 

responsibilities effectively. The council found that something similar is at play when

it comes to writing a report to Congress. Even though the council is comprised of

experts with hundreds of years of collective personal and professional experience 

in family caregiving, this report would not have been possible without the generous 

support, technical assistance, expertise, and advocacy of a wide range of committed 

external stakeholders

Underpinning all of the council’s work was a multi-pronged research and investigative 

effort made possible through generous support by The John A. Hartford Foundatio

That support enabled the National Academy for State Health Policy (NASHP) to 

provide technical analysis to the council and to convene the NASHP faculty, a team 

of renowned experts who provided evidence-based perspectives on how best to 

implement supports for family caregivers. It allowed NASHP to engage Community

Catalyst and researchers at LeadingAge LTSS Center @UMass Boston to analyze the 

request for information (RFI) results and conduct over three dozen listening sessions 

with caregivers, care recipients, employers, advocates, and more. It also provided

for the gathering of 26 caregiver profiles by the National Alliance for Caregiving. The

powerful caregiver videos that resulted from that effort are a testament to the grace 

and grit evidenced by so many of this nation’s caregivers

The council wishes to recognize the members of the public and representatives of 

advocacy groups who joined the discussion via online chat at council meetings, 

responded to the RFI, participated in the listening sessions, and shared their 

caregiving stories. The chorus of those voices shaped and informed the development

of the recommendations. In generously sharing the challenges and joys of their days

and what keeps them up at night—these respondents also served as a constant 

reminder to each member the council of the absolute urgency of its mission

The council would also like to recognize the multiple subject matter experts at ACL 

who provided critical input and guidance on this report, including the ACL regional 

administrators, ACL grantees, and staff within ACL’s Office of American Indian, Alaskan 

Native and Native Hawaiian Programs (Title VI) and the Center for Policy and Evaluation

The non-federal council appointees would like to acknowledge the spirit of 

collaboration shown by the federal agencies represented on the council. These

representatives shared key insights gleaned from years of professional experience 

working in the field of supports and services to family caregivers, as well as their 

personal experiences as caregivers or people who receive support from a family 
RAISE Family Caregivers Act Initial Report To Congress Page 141

member. The value of this became especially evident as the council explored th

feasibility of implementing its proposed recommendations at the federal level and 

during the clearance review of this report. Federal members also solicited input from

their home agencies about existing federally supported efforts to support family 

caregivers. Their contributions were instrumental in the development and release of

The Inventory of Federal Programs and Initiatives to Support Family Caregivers

Finally, it is important to note that this report is the result of many years of effort by a 

wide range of stakeholders and other advocates. The passage of the RAISE Act was

the result of dedicated advocacy on the part of family caregivers and organizations 

across decades. Without these advocacy groups and the tireless work of legions of

family caregivers, social workers, counselors, and community organizations, this report 

and its recommendations would not exist