2022 National Strategy to 

Support Family Caregivers

Developed by: 

 The Recognize, Assist, Include, Support, and Engage (RAISE) Act 

Family Caregiving Advisory Council 

&

The Advisory Council to Support Grandparents Raising Grandchildren 

Technical assistance provided by the Administration for Community Living | September 21, 2022
Contents

Letter from the Acting Administrator of the Administration for Community Living . . . . . . . . . . . . . . . . . . . 3

Acknowledgements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

Creating the Strategy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7

A Note on Language . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9

Executive Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

Background . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

Costs of Caregiving . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12

Purpose of the Strategy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

Components of the Strategy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14

A First Step . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16

Family Caregiving Today . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16

A Snapshot of Family Caregivers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18

What Family Caregivers Do . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19

Congressional Action . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20

Family Caregiver Needs Requiring Legislative and Other Policy Changes . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21

Legislative or Policy Change . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22

Framework for Systemic Caregiver Support...

Components of the Strategy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24

How to Use the Strategy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27

Disclaimer and Limitations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29

Goal 1: Increase awareness of and outreach to family caregivers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30

Goal 2: Advance partnerships and engagement with family caregivers . . . . . . . . . . . . . . . . . . . . . . . . . . 43

Goal 3: Strengthen services and supports for family caregivers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 53

Goal 4: Ensure financial and workplace security for family caregivers . . . . . . . . . . . . . . . . . . . . . . . . . . . 70

Goal 5: Expand data, research, and evidence-based practices to support family caregivers . . . . . . . . . . 79

Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 89

Works Cited . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 91

Appendix A: Participating Non-Federal Stakeholders . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 94

Appendix B: Resources Used in the Development of the Strategy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 100

Acronyms and Abbreviations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 101
2022 National Strategy to Support Family Caregivers Page 3

Letter from the Acting Administrator of the 

Administration for Community Living

The Administration for Community Living (ACL) is pleased to share the 2022 National 

Strategy to Support Family Caregivers, which was developed jointly by the 

Advisory Councils established by the RAISE Family Caregiving Act and the Supporting 

Grandparents Raising Grandchildren Act, with extensive input from family caregivers, 

the people they support and other stakeholders. The Strategy includes nearly 500

actions that can be adopted at every level of government and across the public and 

private sectors to ensure that family caregivers—who provide the overwhelming 

majority of long-term care in the United States—have the resources they need to 

maintain their own health, well-being, and financial security while providing crucial 

support for others

The Strategy arrives at a unique moment in time. The need for a robust, coordinated

approach to supporting family caregivers has never been greater. But the opportunities

in front of us to build that system also are unprecedented

In 2019, at least 53 million people were providing informal, usually unpaid, care and 

support to aging family members and people of all ages with disabilities (including 

mental health conditions). At the same time, at least 2.7 million grandparents—an

an unknown number of other relative caregivers—carried the primary responsibility 

for caring for grandchildren whose parents were unable to do so. These numbers

are increasing rapidly due to growing populations of older adults and people with 

disabilities; the long-standing shortage of direct care workers, which has reached crisis 

proportions during the pandemic; the continuing opioid crisis and other issues that are 

creating thousands of new “grandfamilies” each year, and a variety of other factors

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 futur

can also be put at risk—lost income due to family caregiving is estimated to be a 

staggering $522 billion each year. When family caregivers no longer can provide

support, the people they care for often are left with no choices except moving to 

nursing homes and other institutions—the cost of which is typically borne by taxpayers 

—or to foster care

Supporting family caregivers has been an urgent public health issue for a number 

of years. The COVID-19 pandemic made it starkly visible, and national momentum

to address it has surged. Today, the Biden-Harris Administration’s unwavering

commitment to strengthening the care infrastructure – which is reflected in a wide 

range of policy initiatives and new investments in making affordable, quality child 

care more available to working families; expanding access to home and community-
2022 National Strategy to Support Family Caregivers Page 4

based services; growing and strengthening the direct care workforce; supporting 

family caregivers; and more—gives us a unique opportunity to transform our longterm care systems and mitigate the challenges that family caregivers face. The

Strategy is an important contribution to the Administration’s broader efforts, which 

work together to advance equity, strengthen the U.S. economy, reduce health car

costs, and improve lives.

I want to express our deepest gratitude to the members of the Advisory Councils for 

their hard work on the Strategy. ACL also thanks our partners, without whom thi

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, the National Alliance for Caregiving, and 

the panel of nationally recognized experts on family caregiving convened by NASHP to 

support the RAISE advisory council

The development of the Strategy is a significant milestone in our national efforts to 

improve the way we support family caregivers, but it also is only the beginning. This

will be a living document, updated regularly, based on the ongoing input of family 

caregivers and the people they support; the continued work of the Advisory Councils; 

best practices from communities, states and tribes, and federal agencies that are 

developing, implementing, and adapting policies and programs to support caregivers; 

and other stakeholders.

Supporting family caregivers is an issue that will touch every one of us in some 

way. At some point in our lives, most of us will either be a family caregiver or need

one. Many of us will experience both. The Strategy presents a vision, along wit

recommendations for achieving it. Bringing this transformative change to life,

however, will require contributions and commitments from every sector, every level of 

government—and all of us

Alison Barkoff 

Acting Administrator and Assistant Secretary for Aging

Administration for Community Living

U.S. Dept. of Health & Human Servic
2022 National Strategy to Support Family Caregivers Page 5

Acknowledgements

The National Strategy to Support Family Caregivers was developed by the Recognize, 

Assist, Include, Support, and Engage (RAISE) Act Family Caregiving Advisory Council 

and the Advisory Council to Support Grandparents Raising Grandchildren (SGRG)

Both councils were formed in 2019; however, this strategy is the result of decades 

of engagement and hard work on the part of policy makers, advocates, philanthropic 

organizations, service providers, and family caregivers

The members of the two councils would like to specifically recognize five organizations 

that generously provided financial, technical, and practical assistance at every step of 

the development of this strategy:

■ The John A. Hartford Foundation (JAHF

■ National Academy of State Health Policy (NASHP)

■ Community Catalyst

■ The LeadingAge LTSS Center @UMass Boston

■ National Alliance for Caregiving 

In addition, more than 150 organizations across the private and non-profit sectors 

provided input in the form of white papers, briefings, and presentations or by 

participating in a series of listening sessions conducted by LeadingAge LTSS 

Center @UMass Boston and Community Catalyst to inform the development of the 

recommended actions. A complete stakeholder list is available in Appendix 

Multiple federal agencies also contributed to the strategy through participation on one 

or both of the councils and/or by identifying specific actions that they will take under 

existing authorities to contribute to the advancement of a systemic approach to better 

recognize and support family caregivers. The councils would like to recognize the

following federal agencies that contributed to its development:

■ AmeriCorps

■ Consumer Financial Protection Bureau (CFPB)

■ Federal Emergency Management Agency (FEMA)

■ U.S. Department of Education (E

■ U.S. Department of Health and Human Services (HH

◆ Administration for Children and Families (ACF)

◆ Administration for Community Living (ACL)

◆ Centers for Disease Control and Prevention (CDC)

◆ Centers for Medicare & Medicaid Services (CMS)
2022 National Strategy to Support Family Caregivers Page 6

◆ Health Resources and Services Administration (HRSA)

◆ Indian Health Service (IHS)

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

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

◆ Substance Abuse and Mental Health Services Administration (SAMHSA)

■ U.S. Department of Labor (DO

■ U.S. Department of Veterans Affairs (V
2022 National Strategy to Support Family Caregivers Page 7

Creating the Strategy

The National Strategy to Support Family Caregivers (Strategy) is the result of three 

years of focused effort by two Congressionally mandated advisory councils: The 

Recognize, Assist, Include, Support, and Engage (RAISE) Act Family Caregiving 

Advisory Council and The Advisory Council to Support Grandparents Raising 

Grandchildren (SGRG) (collectively referred to herein as the Advisory Councils)

The two Advisory Councils were formed in 2019 to explore and document the 

challenges faced by family caregivers and kin and grandparent caregivers, respectively

Each was charged with providing actionable recommendations for supporting their 

corresponding caregiving populations in a holistic way both now and in the future. In

addition, the RAISE Act directed the development of a family caregiving strategy.

In 2021, each Advisory Council delivered an initial report to Congress. The reports

contained recommendations for increasing awareness and outreach, inclusion, and 

services; reducing the financial challenges faced by family caregivers; and improving 

data, research, and the use of evidence-informed approaches in the field. The reports

also offered testimonials from family caregivers to help illustrate why it is imperative 

that the nation do more to support them. During this work, it became clear that

because family caregiving is such a diverse activity that affects different people at 

various stages of life and requires a wide range of skills and competencies, the best 

way to holistically support all family caregivers would be through a unified effort. As a

result, the Advisory Councils collaborated to develop the Strategy

Who are Family Caregivers?

The RAISE Family Caregivers Act defined “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 .” In its initial report to Congress, 

the RAISE Advisory Council expanded that definition slightly to include unpaid 

individuals of all ages in its definition . 

In its 2021 Report to Congress, the SGRG Advisory Council defined “kin and/

or grandparent caregiver” to refer to any grandparent or relative adults who have 

primary responsibility for grandchildren or other children who cannot remain with 

their parents .

In the 2022 National Strategy to Support Family Caregivers, “family caregiver” 

includes anyone meeting those definitions . 
2022 National Strategy to Support Family Caregivers Page 8

Setting the Vision

According to the individual statements from Advisory Council members, 

when the goals of the Strategy are achieved, family caregivers of all ages and 

circumstances will be able to:

■ “Be informed advocates...(and) obtain the services they desperately need to survi

and thrive.”

■ “Access the right support at the right time.

■ “Understand that the role (of family caregiver) is a competency, and their success 

relies on infrastructure available within a community.

■ “Maintain their own vitality, health, and wellness.

■ “Protect the bonds of family...and maintain strong family relationships.”

■ “Realize that they are not alone...and become empowered to step forward as 

advocates.

■ “Navigate services that support their needs for providing a service of care.”

■ “Access emotional and financial support without judgment.

■ “Reference a living document that reflects shared values.”

■ “Breathe again...” 

In addition, council members noted that supporting family caregivers helps to 

ensure that the people receiving support maintain their autonomy, independence 

and right to self-determination

Their first step was to articulate a shared vision. They began by describing a world in

which family caregivers have the support needed to provide care without jeopardizing 

their own financial, emotional, and physical stability. Each council member submitted

statements detailing their individual perspectives on what the Strategy should 

achieve—and the impact on family caregivers if the shared vision were realized

Their individual responses reflected the wide range of challenges and joys that are 

experienced by many family caregivers.

It is important to note that the Strategy is focused solely on the populations and issues 

addressed by the RAISE Family Caregiving Act and the Supporting Grandparents 

Raising Grandchildren Act; it does not address every type of caregiving situation

For example, although expanding access to affordable, quality childcare is crucial 
2022 National Strategy to Support Family Caregivers Page 9

to supporting working parents (and to advancing equity), and parents are “family 

caregivers” in the literal meaning of the term, that issue is beyond the scope of this 

strategy

Similarly, the Advisory Councils recognize that the Strategy does not fully address all 

aspects of family caregiving, as there is no-one-size-fits-most solution to addressing 

the needs of more than 53 million individuals providing care in the U.S. Specifi

populations of family caregivers, especially those with more demanding and/or 

complex caregiving responsibilities (described by family caregivers as “more intense” 

responsibilities), likely will need additional support not described in this initial release of 

the Strategy

A Note on Language 

The Advisory Councils recognize that different stakeholder groups that will be served 

by this Strategy use different language to describe the role of a person who provides 

the support another person needs. For example, while many people use the term

“caregiver,” others prefer to use terms like “care partner” to describe the person who 

provides assistance, and some cultures do not have terms for people who provide 

informal support to others

Similarly, different stakeholder groups prefer different terms to describe the tasks 

performed by these people to be “care,” while others use “support,” “assistance,” or 

simply, “help.”

To design a strategy broad enough to encompass all family caregivers and the myriad 

challenges they collectively face (and often overcome) in a manner that honors cultural 

norms and differences, the Advisory Councils blended their individual family caregivingrelated definitions. This practical approach allowed them to create a broad concept

that could be applied in a range of circumstances, while maintaining clarity for readers 

of the document. When working directly with individual family caregivers and care

recipients, or different stakeholder groups, it is important to be aware of the diversity 

of language used to discuss the issues of family caregiving and to make an effort to 

use the language preferred by the individual/groups being addressed

After thoughtful discussion within the Advisory Councils, which included both 

family caregivers and care recipients from a variety of circumstances, the following 

terminology was selected for the purposes of this document:

“Family” is used in the broadest possible sense to include spouses, partners, 

siblings, friends, neighbors, kin, cousins, nieces and nephews, grandparents, parents, 

godparents, and others
2022 National Strategy to Support Family Caregivers Page 10

“Caregiving” includes a wide variety of tasks to meet the individual needs of the 

person receiving support. Level of effort can vary significantly—from assistance with

one (or a few) specific tasks, to live-in assistance that includes medical tasks. It most

often describes the support provided to help people live in their own homes and 

communities, rather than in nursing homes and other institutions. However, it also

can include support provided to older people and people with disabilities who live in 

institutional settings

“Family caregivers” include people of all ages, from youth to grandparents; people 

with and without disabilities; people providing care from a distance; and people 

meeting a wide variety of needs, such as supporting people with intellectual and 

developmental disabilities (ID/DD) across the lifespan, caring for people with serious 

and/or progressive illnesses like dementia and cancer, and assisting with daily tasks 

that can be challenging for older people and people with disabilities. The term also

recognizes that a single person may receive care from multiple family caregivers

This inclusive approach is intended to reflect a vision for a comprehensive national 

response to supporting the nation’s family caregivers

For more on how the terms used throughout the Strategy were selected, see 

the RAISE Family Caregivers Act Initial Report to Congress and the Supporting 

Grandparents Raising Grandchildren Act Initial Report to Congress
2022 National Strategy to Support Family Caregivers Page 11

Executive Summary

Background

Every single one of us, if we live long enough, is likely to experience being a family 

caregiver, needing a family caregiver, or both

Each year, more than 53 million family caregivers provide the majority of support that 

makes it possible for older people and people with disabilities to live in the community 

(AARP and National Alliance for Caregiving, 2020). In addition, at least 2.7 millio

grandparents – and an unknown number of other kin and relative caregivers – carried 

the primary responsibility for caring for children whose parents were unable to do so 

(Annie E. Casey Foundation, 2019). When formal systems of caregiving break dow

(as we saw during the COVID-19 pandemic) or are not available in the first place, 

family caregivers step in—often on short notice—and cover whatever is needed: 

meals, transportation, chores, personal care, education, medical tasks, administrative 

assistance, language translation, and even IT support (AARP and National Alliance for 

Caregiving, 2020)

In short, family caregivers form the backbone of our nation’s system of long-term care

They support a wide range of people, with a wide range of needs, such as: 

■ Older adults and people of all ages with all types of disabilities who may 

need assistance with bathing, toileting, dressing, and eating (also known as 

activities of daily living) or with things like grocery shopping and meal preparation, 

getting to doctor’s appointments, home maintenance, or managing multiple 

medicines

■ People 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

■ Adults and children with ID/DD who may require assistance with ensuring that 

the individual’s basic needs are met, while their rights are respected and protected

They also may need assistance with accessing and coordinating the supports 

needed for health, well-being, independence, and opportunities for community 

inclusion, integrated employment, and self-determination, whether the individual 

with ID/DD is living with the family caregiver or in their own home. Parents and other

family members of people with ID/DD often provide medical, behavioral, financial, 

and other daily supports beyond what most families provide, and they provide this 

assistance across the lifespan of the person with ID/DD
2022 National Strategy to Support Family Caregivers Page 12

■ 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 due previous adverse childhood experiences

■ Medically fragile children and adults who need round-the-clock care from a 

team that includes of family caregivers and skilled nursing professionals working in 

close concert

■ Older adults, who are affected by Alzheimer’s disease and related 

dementias (ADRD), including people with ID/DD, who require assistance with 

activities of daily living

■ Veterans with injuries and/or chronic conditions, including traumatic brain 

injuries, limb loss, and mental health issues like post-traumatic stress disorder 

(PTSD)

■ People who live 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

This is not an all-inclusive list – family caregivers provide many types of assistance not 

listed here. And, of course, some people supported by family caregivers may fit into

more than one of these categories

Costs of Caregiving

While family caregiving can be rewarding and personally satisfying, it often comes 

at significant personal cost to the caregiver (National Academies of Sciences, 

Engineering, and Medicine, 2016). However, those costs—financial, physical, and

emotional—incurred by family caregivers are hard to measure

The goal is always to provide support that meets the needs of the individual receiving 

it—as defined by that person—and to allow the individual receiving care to maintain 

autonomy, independence, and quality of life

To date, data collection efforts have not captured the full range of caregiving. They

often have been limited to specific caregiving situations, such as post-hospitaldischarge caregiving. Some populations of family caregivers, such as kin and

grandparent caregivers and long-distance caregivers, are often overlooked. The care

provided is diverse and intentionally tailored - the goal is always to provide support 

that meets the needs of the individual receiving it—as defined by that person—and to 

allow the individual receiving care to maintain autonomy, independence, and quality of 

life. These and other factors hinder the ability to capture the often ongoing, long-term
2022 National Strategy to Support Family Caregivers Page 13

nature of caregiving, especially for care recipients with long-term needs, such as those 

with dementia

As a result, our knowledge about the impact of family caregiving is limited to selected 

outcomes like social isolation, loneliness, stress, depression, and quality of life. We

know that family caregivers suffer from higher rates of depression than non-caregivers 

of the same age, and research indicates that family caregivers suffer a mortality rate 

that is 63 percent higher than non-caregivers (Schulz & Beach, 1999)

In recent years, additional attention has been given to measuring the financial impact 

of family caregiving such as lost wages, reduction in workforce, and the out-of-pocket 

costs that caregivers often incur for meals, transportation, medical supplies, toys, 

educational tools, home modifications, and more. Family caregivers lose an estimated

$522 billion in wages each year due to caregiving, and employers are losing an 

estimated $33 billion per year due to employees’ caregiving responsibilities (Chari, 

Engberg, Ray, & Mehrotra, 2015)

Finally, when the challenges become overwhelming and family caregivers are unable 

to continue to provide support, the person they have been assisting often is left with 

no choice but to enter an institution. In addition to negatively affecting the health

and well-being of the individual who has moved from the community, institutional 

care also carries a tremendous financial cost – most of which is borne by Medicaid

Ensuring family caregivers have the resources they need to continue to support older 

adults and disabled people in the community is critical to containing the rising costs 

of health care

Purpose of the Strategy

The range of circumstances faced by caregivers is large, and caregivers themselves 

represent the diversity of the nation. However, they have at least one thing in common:

every single family caregiver deserves and needs to be recognized, assisted, 

included, supported, and engaged

To address this need, the initial National Strategy to Support Family Caregivers 

(Strategy) was developed in 2022 by the RAISE Act Family Caregiving Advisory Council 

and the Advisory Council to Support Grandparents Raising Grandchildren (SGRG) 

(collectively, the Advisory Councils). It builds upon a framework prepared by each

council’s 2021 report to Congress to:

■ Align federal, state, tribal, local, and other stakeholder responses around a 

set of goals and outcomes that are informed by thoughtful recommendations

■ Foster collaborations within and across stakeholder groups
2022 National Strategy to Support Family Caregivers Page 14

■ Optimize existing family caregiver support efforts by reducing redundancy, 

improving information sharing and the infusing best practices systemwide

■ Prioritize efforts to advance equity for unserved and underserved populations of 

caregivers

■ Ensure that all efforts to uplift caregivers are person- and family-centered, trauma 

informed, and culturally competent

Components of the Strategy

In addition to an overarching narrative, the Strategy includes two appendices; lists of 

actions, organized by goal, that can be undertaken by a wide range of stakeholders to 

achieve a vision where people can provide care and support to others without putting 

their own physical, emotional, and financial well-being on hold and at risk

“Federal Actions” includes 345 commitments submitted by 15 federal agencies to 

support the 2022 National Strategy to Support Family Caregivers. While the federal

actions are significant, they are constrained by the RAISE Family Caregivers Act 

requirement that they be “within scope of existing programs.” Therefore, the federal

actions within this strategy are limited to activities possible under existing budgets, 

programs, and authorities

Note: As the Advisory Councils’ respective reports to Congress made clear, at present, 

there are many identified needs of family caregivers that are not possible to fully 

address within the scope of existing federal programs. The Advisory Councils identify

and describe for consideration other types of federal actions that would require new 

legislation under, Caregiver Needs Requiring Legislative and Other Policy Changes

“Actions for Others” includes actions for states, communities, and other 

stakeholders to support caregivers in ways that are aligned with the Strategy. Thes

actions were distilled from eight separate convenings conducted by or on behalf 

of the Advisory Councils to gather, align and aggregate independent actions that 

stakeholders can take to support the Strategy

This is the first time that ideas from local and state agencies and nonprofit 

organizations are integrated with recommendations for the federal government in a 

combined initiative dedicated to family caregiving. The development of these lists also

represents the first time that agencies across the federal government have formally 

worked together to coordinate family caregiver support planning

For more information on public comments and input from stakeholders that 

informed the development of the Strategy, see Appendix B: Resources used in 

the development of the Strategy
2022 National Strategy to Support Family Caregivers Page 15

It is important to note that the Strategy is not—nor can it be—a timeline, a set of 

operating instructions, or a how-to manual. The Advisory Councils intentionally

developed an approach that is flexible and broad; the Strategy presents a menu of 

priority actions organized under outcomes and goals to provide stakeholders with a 

range of options that can be implemented to meet local needs

In addition to the lists of actions, the Strategy also provides a discussion of four crosscutting considerations, or “first principles,” that must be embedded in all support to 

family caregivers: person- and family-centered care; the impact of trauma on families; 

advancing diversity, equity, inclusion, and accessibility; and elevating direct care 

workers as essential partners to the family caregiver

A First Step

The initial Strategy empowers communities, agencies, and other stakeholder groups 

to select actions for implementation, based on community and family caregiver needs 

and preferences and in consideration of existing supports already in place, resource 

constraints, and other factors

The Strategy is a significant milestone in our national effort to improve the way 

we support family caregivers, but it also is only the beginning. This will be a living

document, updated regularly, based on the ongoing input of family caregivers and the 

people they support; the continued work of the Advisory Councils; communities, states 

and tribes, and federal agencies that are developing, implementing and adapting 

policies and programs to support family caregivers; and other stakeholders. All

stakeholders are encouraged to look for opportunities to improve collaboration, reduce 

redundancy and leverage the actions being undertaken by other organizations and/

or sectors and to share recommendations to inform the first update to the Strategy, 

which will be published in 2024
2022 National Strategy to Support Family Caregivers Page 16

Introduction 

Every day, millions of family caregivers put their own needs aside, often suddenly, 

to improve and maintain the quality of life for others. They support parents, spouses

and partners, children with significant disabilities, children who cannot remain with 

their parents, and other family members. Both family caregivers and the people they

support hail from every corner of the nation and reflect in the rich diversity of our 

society (AARP and National Alliance for Caregiving, 2020)

The National Strategy to Support Family Caregivers is dedicated to America’s family 

caregivers. It serves as an initial effort in changing systems so that family caregivers

can receive the recognition, assistance, and support they deserve while engaging and 

including family caregivers in creating the change they envision

Family Caregiving Today

According to the National Alliance for Caregiving (NAC) and AARP, at least 53 million 

people provide informal, and usually unpaid, care and support to older adults and 

disabled people of all ages in the United States (AARP and National Alliance for 

Caregiving, 2020). This support makes it possible for millions of people to live in

homes in the community rather than congregate settings. Family caregivers also

supplement the care of people who are hospitalized or living in nursing homes and 

other institutional settings (Avison, et al., 2018

In addition, at least 2.7 million kin and grandparent caregivers have opened their arms

and homes to millions of children who cannot remain with their parents (Generations 

United, 2018). These numbers are increasing rapidly due to growing populations

of older adults and people with disabilities (including due to long COVID); the longstanding shortage of direct care workers, which has reached crisis proportions during 

the pandemic; the continuing opioid crisis and other issues that are creating thousands 

of new “grandfamilies” each year; and a variety of other factors

The current U.S. system of long-term services and supports could not continue t

function without the contributions of family caregivers. In 2017, the annual contribution

of unpaid care of older adults from family members was estimated to be valued at $470 

billion (Reinhard, Feinberg, Houser, Choula, & Evans, 2019). Currently, there are no

estimates for the value of the countless hours that family caregivers devote to other 

types of care—for example, those providing 24/7 care to medically fragile children, 

those supporting the independence of people with ID/DD, caregiving youth who help 

parents and grandparents, or family caregivers providing care to more than one person

Similarly, it is impossible to estimate the financial value of the care provided by kin and 

grandparent caregivers, many of whom are older adults (Generations United, 2018)
2022 National Strategy to Support Family Caregivers Page 17

From our Listening Sessions

“One of the big stressors was money. Why aren’t we paying our family 

caregivers? Why aren’t we giving them a wage? When you think about any 

stressor they’re having...a lot of it’s going to be financially related.” 

Despite its many rewards, family caregiving often carries a considerable personal and 

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

These costs have long existed, but they came into the spotlight during the COVID-19 

pandemic, when more people became family caregivers in response to closures of 

formal services and changes in the availability of informal supports (Beach, Schulz, 

Donovan, & Rosland, 2021). These new caregivers quickly began to experience the

same challenges that have long been a reality for millions of caregivers across the 

nation. Because family caregiving often is time-intensive, and it takes place within

family and other private spaces, it can leave the people who provide support isolated 

from friends, family, colleagues, and support systems. The pressures of the pandemic

have only amplified the stress and loneliness that can accompany caregiving

Many family caregivers struggle to balance their caregiving role with other family 

responsibilities and employment, and they often forgo rest and self-care. They also

frequently bear out-of-pocket expenses (AARP and National Alliance for Caregiving, 

2020). 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. The estimated per family spending on family caregiving was roughly $7,000

per year ($6,594) (Rainville, Skufca, & Mehegan, November 2016).These and other

challenges can have a long-term effect on caregivers’ health, relationships, mental and 

emotional well-being, finances, and even their ability to provide support over time and/

or care for themselves (AARP and National Alliance for Caregiving, 2020)

“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 & RAISE Family Caregiving Advisory Council Co-chair

Without the support of family caregivers, millions of people would find themselves 

with no choice but to move to more costly nursing homes and other institutional and 

congregate settings. Millions of children would enter the child welfare system (and be

effectively in the care of strangers) (Generations United, 2018). In addition to having a

negative effect on the health and wellbeing of the people receiving care, these changes 

would come at a significant cost to federal, state, and community social services 

budgets and the American taxpayer. Not only does the nation owe a tremendous
2022 National Strategy to Support Family Caregivers Page 18

debt to its family caregivers, but it has no acceptable alternative to family care

Consequently, family caregiving is an urgent public health issue of such magnitude that 

it requires a coordinated, iterative, and cross-sector response

A Snapshot of Family Caregivers

Family caregivers represent a broad cross-section of the population—people of every 

background and in every corner of the nation are family caregivers (AARP and National 

Alliance for Caregiving, 2020). Family caregivers include spouses, parents, siblings,

adult and minor children, grandparents and other relatives, and more, and people 

can assume family caregiving responsibilities at any stage of life (AARP and National 

Alliance for Caregiving, 2020)

Some family caregivers assist others out of a wellspring of love and concern. Others

provide care in response to tradition, culture, family expectations, or other factors 

(Zarzycki, Seddon, Bei, Dekel, & Morrison, 2022). More than half of all family caregivers

(53%) feel they have no choice in taking on the role (AARP and National Alliance for 

Caregiving, 2020). Often some combination of these reasons causes a person to

become a caregiver

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.” Research on caregiving youth remains

limited, in part because many families are reluctant to volunteer information (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 six child caregivers helps a

family member communicate with doctors or nurses, and 15 percent 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

It is important to note that some populations are disproportionately affected by 

caregiving issues. Although men are becoming family caregivers in greater numbers,

61 percent of family caregivers are women (AARP and National Alliance for Caregiving, 

2020); caregiving responsibilities often exacerbate the financial security - including 

retirement security - disparities experienced by women. African 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),

but they also are more likely to report that caregiving provides them with a sense of 

purpose. On the other hand, Asian American and White caregivers report higher levels

of emotional stress than African American or Hispanic caregivers (AARP and National 

Alliance for Caregiving, 2020). Hispanic older adults are about one and one-half times
2022 National Strategy to Support Family Caregivers Page 19

as likely to have Alzheimer’s or other dementias as compared to older adults who 

are White (Alzheimer’s Association, 2021).The result is that the burden of caregiving

disproportionally affects families of color. For example, Black and American Indian an

Alaska Native children are more likely to live in grandfamilies (U.S. Census Bureau

2019)

What Family Caregivers Do

Millions of people are able to live more independently, with dignity and selfdetermination while experiencing a better quality of life thanks to some form of 

assistance from family caregivers

Today’s family caregivers are often expected to perform highly complex tasks, including 

medical tasks, care coordination, administration, and technological support – activities 

that extend well beyond the help with activities of daily living that were the hallmark of 

family caregiving in years gone by (National Academies of Sciences, Engineering, and 

Medicine, 2016). Of the approximately 10.9 million individuals with LTSS needs living i

the community and 1.8 million nursing home residents, 92 percent receive assistance

from family caregivers and only 13 percent receive any form of paid assistance (Kaye, 

Harrington, & LaPlante, 2010)

The Advisory Councils convened as a result of these key pieces of legislation 

believe that their efforts are only a first step in creating a systemic approach 

to supporting family caregivers. Given the increasing numbers of older

adults and people with disabilities and chronic conditions who are anticipated 

to need caregiver assistance in the future, the Advisory Councils contend that 

in addition to the implementation of the Strategy, significant future changes will 

likely be needed in the federal landscape to meet the vision of the RAISE Family 

Caregivers Act. This belief is aligned with public comments received by the

councils

See Family Caregiver Needs Requiring Legislative and Other Policy Changes below

For more information on public comments and input from stakeholders, see 

Appendix B: Resources used in the development of the Strategy

Family caregivers generally provide this support without a formal assessment of their 

needs or the needs of the person receiving support. That means they may have to

take on tasks they do not know how to do, did not expect to have to do, or do not 

feel comfortable doing. They often have limited access to training or assistance that

could enable success. They often face legal barriers to providing care, such as when

a grandparent opens their home to a child but lacks legal custody or the authority 

to make decisions on behalf of the child. This lack of formal recognition creates

unexpected challenges with otherwise straightforward tasks such as accessing 
2022 National Strategy to Support Family Caregivers Page 20

medical care or registering a child for school. Over time, these hurdles can make an

already complex task both stressful and exhausting and even drain financial resources, 

especially over time

Congressional Action

To address these complex challenges, and in response to decades of advocacy by 

multiple stakeholder groups, Congress passed the RAISE Family Caregivers Act of 

2017 (P.L. 115-119). The RAISE Family Caregivers Act established the RAISE Fami

Caregiving Advisory Council and directed the development of this Strategy

In September 2021, the RAISE Family Caregiving Advisory Council released its initial 

report to Congress. The report described the current landscape of family caregiving

and proposed 26 recommendations for how the federal government, states, tribes, 

and communities—in partnership with the private sector—can better recognize, 

assist, include, support, and engage family caregivers. It was informed by over

1,600 responses to a formal Request for Information (RFI) which were analyzed by 

researchers at UMass Boston and Community Catalyst. The RFI analysis was made

possible through funding from JAHF. The RAISE Family Caregivers Act Initial report to

Congress made recommendations that were organized around five key goals:

■ Improved awareness of and outreach to family caregivers

■ Inclusion of family caregivers in the care team

■ Services and supports for family caregivers

■ Financial and employment protections

■ Data, research, and best practices

In a corresponding effort, in July 2018, Congress authorized the SGRG Act (P.L. 11

196). This legislation established a separate Advisory Council specifically to make

recommendations and identify best practices to support a unique subset of family 

caregivers, many of whom are also older adults—those who have opened their homes 

to grandchildren or kin who are not able to remain with their parents. Sometimes these

family caregiving situations are short term; sometimes they are permanent. Often, they

involve tremendous grief, loss, financial hardship, and/or trauma—and a resulting need 

for services and support—for both the children and adults involved

In November 2021, the Advisory Council to Support Grandparents Raising 

Grandchildren released its initial report to Congress. The report was informed

by over 300 responses to a second RFI specifically seeking input on the needs, 

challenges, best practices, and unaddressed gaps experienced by kinship families and 

grandfamilies. The SGRG Act Advisory Council developed a set of goals aligned with

those of the RAISE Act Advisory Council, and these goals served as the framework 
2022 National Strategy to Support Family Caregivers Page 21

for 22 recommendations set forth in its report. The report is a moving testimony to

the resilience and grit of a generation of kin and grandparent caregivers who have put 

their physical, emotional, and financial well-being on hold to raise children within the 

embrace of loving homes

A Combined Approach to Developing the National Strategy to Support 

Family Caregivers

As noted, as the Advisory Councils prepared their respective reports in 2021, it 

became clear the parallel statutory requirements between the RAISE and SGRG Acts 

presented an opportunity to bring together the issues of greatest concern to all family 

caregivers in a single, comprehensive response. Without this inclusive approach, there

would remain the risk of ongoing lack of awareness of certain family caregiving issues 

and continued fragmentation of supports for specific populations. It also highlighted

the magnitude of the issues facing so many Americans

The development of the Strategy is an important initial step in identifying and 

addressing the family caregiving challenges most Americans will face in their 

lifetimes--whether providing care for a loved one or needing that care to remain in 

the community. This effort to develop a framework of systemic support for family

caregivers is the first time that stakeholders representing an inclusive range of sectors 

and stakeholders (including family caregivers and people receiving care themselves) 

have collaborated with multiple agencies across the federal government to develop a 

shared path toward this single shared vision: recognition and support for all family 

caregivers, regardless of age, background, circumstance, or location

Family Caregiver Needs Requiring Legislative and Other Policy Changes

The Advisory Councils anticipate that as the Strategy is implemented—and as the 

nation more fully comes to understand and respond to the challenges faced by family 

caregivers—society will embrace the cultural and policy shifts necessary to support 

them. As a result, over time, lawmakers likely will be called upon to propose legislative

changes to better support family caregivers

With this vision in mind, the Advisory Councils view this document as a Call to 

Action for lawmakers at the federal, state, and local levels and propose a list of 

recommendations for policy makers and legislators to enhance support for family 

caregivers in ways that are aligned with the Strategy. (See Table 1
2022 National Strategy to Support Family Caregivers Page 22

Table 1. Legislative and Other Policy Changes to Support Family Caregivers

Legislative or Policy Change

Increase funding for state, territorial, tribal, and local health departments to 

systemically embed family caregiving into public health infrastructure and planning 

Provide funding for the development, implementation, and evaluation of a public 

health national and culturally competent awareness campaign regarding caregiving

Update language in existing federal caregiver-related legislation and authorities to 

ensure it reflects the current landscape of caregiving and aligns with the goals of the 

Strategy

Review current requirements of, and funding levels for, federal programs described in 

the Inventory of Federal Caregiver Support Programs & Initiatives

Encourage clinicians and providers to conduct formal assessments of family 

caregiving needs 

Create incentives for health care systems to incorporate family caregivers into health 

care decision making for the person receiving care 

Encourage Medicaid programs, programs offered by the VA, and Medicare Advantage 

programs to expand community-based long-term care options, including expanding 

self-directed opportunities to allow for the hiring of family caregivers, while also 

funding LTC services at rates that attract and retain a skilled direct care workforce1

Authorize specific benefit expansions in the Medicare program, including for respite, 

adult day services, home modifications, home delivered meals and other long-term 

services and supports (LTSS) to enable individuals to safely age in place/remain in 

their homes

Increase funding for caregiver support services under the National Family Caregiver 

Support Program (NFCSP), the Lifespan Respite Program, and the Alzheimer’s 

Disease Program Initiative (ADPI)

Create a job classification for direct care workers and standardize training and 

accreditation across states 

Establish a federal interagency task force to develop a direct care workforce 

development plan 

Change U.S. visa policies to allow au pairs to serve as caregivers of older adults an

people of all ages with disabilities 

Redesign the Medicaid eligibility process so that the care recipient does not have to 

deplete most of their assets to qualify for services and support

Financially support caregiving initiatives through federal funding opportunities, 

including expansion of Older Americans Act and the Elder Justice Act funding 

opportunities

Pass federal paid family leave; expand the FMLA to include small employers and a 

broader definition of “family” to include grandparent and kin caregivers
2022 National Strategy to Support Family Caregivers Page 23

Include family caregiver out-of-pocket care expenses (products and services) as 

medical expenses eligible for tax credits

Introduce a range of incentives to encourage employers to adopt caregiver-friendly 

practices, including tax incentives 

Develop tax deductions for paying for home and community-based services (HCBS), 

including by family members who are not claiming the care recipient as a dependent

Amend the Consolidated Omnibus Budget Reconciliation Act (COBRA) such that 

when wage earner(s) leave employment to care for family members their benefits can 

continue at their previous level

Allow family caregivers who leave the workforce for caregiving to accrue Social 

Security credits to qualify for Social Security benefits

Allow kin and grandparent caregivers who have primary responsibility for a child to 

claim the federal Child Tax Credit 

Launch a national public long-term care social insurance program that includes 

benefits for kin and grandparent caregivers

Extend health care coverage to children in the care of grandparents and kin who are 

not part of the child welfare system 

Convene a task force to develop a consensus definition of family caregiver and 

a standardized set of survey questions that provide a minimum data set on the 

caregiver, person receiving care, and key characteristics of the caregiving situation
2022 National Strategy to Support Family Caregivers Page 24

Framework for Systemic Caregiver Support

The aim of the Strategy is to advance a plan of action leading to recognizing, assisting, 

including, supporting, and engaging family caregivers. The Strategy includes four

separate components which together provide a framework for making the respective 

recommendations of the Advisory Councils a reality for the nation’s family caregivers

Components of the Strategy

The Strategy includes four documents. This document provides the narrative

discussion about how to drive the systemic change needed to take family caregiving 

from the sidelines of modern life to something that is recognized and supported as an 

essential contribution to society

It describes how to achieve each of the 27 recommendations (restated as outcomes) 

described by the Advisory Councils in their respective reports to Congress. The

narrative was developed based on transcripts and recordings of Advisory Council 

meetings, the reports to Congress by each council, analysis of the two formal 

public requests for information (RFI) about family caregiving, input from about 150 

organizations through key informant interviews and listening sessions, plus other key 

documents developed to support the work of the Advisory Councils. Appendix 

includes a list of additional sources that informed the development of the Strategy

The narrative is organized around three components: Goals and Outcomes to 

support family caregivers, and Indicators of Success

■ Goals: Although the language used to describe them different, the Advisory Councils 

shared five overarching goals. These goals provide the framework for the Strategy

◆ Goal 1: Increase awareness of and outreach 

◆ Goal 2: Advance partnership and engagement 

◆ Goal 3: Strengthen services and supports 

◆ Goal 4: Ensure financial and workplace security 

◆ Goal 5: Expand data, research, and evidence-based practices 

Many of the priority actions in the Strategy support multiple outcomes

Stakeholders can increase their impact by adopting actions that are identified in 

this document to support multiple areas

■ Outcomes: Based on the combined recommendations in their initial reports to 

Congress, the Advisory Councils developed 27 outcomes within the five goals

Within each outcome, the Strategy describes multiple priority actions
2022 National Strategy to Support Family Caregivers Page 25

Note: The Advisory Councils set forward a comprehensive, multi-sector 

approach to advocate for immediate and long-term changes that will be needed 

to achieve the cultural and systemic changes necessary to address the complex 

nature of family caregiving. In other words, the members contend that no single

outcome will be sufficient by itself; however, each outcome is a driver of the 

momentum necessary to effect meaningful change

■ Indicators of success: With any large-scale undertaking to create change or 

improve how challenges are addressed, a set of guideposts to measure success 

is essential. Following the discussion of each goal and its outcomes, sample

indicators of success are provided so any sector involved in implementing any of 

the actions can have a set of potential measures for their work

A separate document, 2022 National Strategy to Support Family Caregivers: 

Federal Actions (Federal Actions), provides 345 federal actions submitted by 

federal departments and agencies as commitments to support one or more of the 

outcomes. This document addresses a key mandate of the RAISE Family Caregivers

Act: requiring input from federal partners on agency actions that could be used to 

advance the development and implementation of the Strategy

It’s important to note that for the first iteration of the Strategy, the statute required that 

actions be within current programs

The federal actions differ from one another significantly by agency both in scope and 

detail. This reflects differing missions and authorities. Some of the federal actions ar

“new” activities within existing programs. Others are redesigned or reimagined from

the current state. In recognition of the fact that the Strategy must move beyond stopgap measures and short-term fixes to address the root causes of inequities and stress

across the landscape of family caregiving, multiple iterations of the Strategy. Additional

actions at all levels – and collaboration across federal agencies to break down silos 

and leverage individual agencies’ authorities and investments – will be necessary to 

achieve the vision described in statute and articulated by the Advisory Councils

The diversity of federal responses in the initial Strategy also reflects the complexity of 

caregiver needs and myriad ways in which government programs and initiatives have 

sought in the past to address these issues. The Advisory Councils’ intention for the

future is that these responses will become increasingly aligned to form a truly holistic 

system of integrated services and supports

A third document, 2022 National Strategy to Support Family Caregivers: Actions 

for States, Communities, and Others (Actions for Others), contains a list of more 

than 150 suggested actions that states, communities, and other stakeholders can 

take to advance the Strategy’s goals. These of practical actions, innovative ideas, and
2022 National Strategy to Support Family Caregivers Page 26

thoughtful suggestions represent the most current consensus from across multiple 

sectors and communities on how best to ignite widespread social change in how the 

nation honors and supports its family caregivers

Finally, a fourth document, First Principles: Cross-Cutting Considerations for 

Family Caregiver Support, describes four essential issues that must be centered in 

developing, delivering and evaluating family caregiving services and supports: 

1. The need for person- and family-centered approaches: As the U.S. builds 

system of coordinated and interrelated responses to the needs of family caregivers, 

it is important that the family caregivers themselves—not systems or providers—

remain the focal point of each encounter

2. Trauma and its impact: The experience of trauma in the lives of caregivers and 

the people they support—including recent and decades-old traumas—has an 

impact on the caregiving journey in ways that must be recognized and proactively 

addressed

3. Diversity, equity, inclusion and accessibility: As noted, the challenges and 

impacts of family caregiving are universal but not equally distributed. Family

caregivers from unserved, underserved, and/or marginalized communities and 

intersections thereof experience unique needs that often go unaddressed. They are

more likely to experience significant disparities in the intensity of caregiving and 

greater negative physical, emotional, and financial impacts

4. The direct care workforce: Even though the Strategy focuses on family 

caregiving, the viability and well-being of the nation’s professional caregivers 

(also known as direct care workers, direct service providers, and other similar 

names) has a direct influence on family caregivers, their options, and the quality 

of care provided to support the person receiving care. The COVID-19 pandemic

has highlighted and exacerbated long-standing challenges faced by this sector

Only through the development of a robust, well-trained, and well-paid direct care 

workforce can we ensure family caregivers and the individuals they support have 

access to reliable, trusted, and affordable paid supports and assistance when and 

where they need it
2022 National Strategy to Support Family Caregivers Page 27

Family Caregiving Stakeholders: In addition to the federal government, 

caregiving stakeholders can include states, municipalities, payors, health 

care companies, faith-based communities, philanthropic organizations, public 

relations organizations, caregiver advocates and coalition leaders, organizations 

representing older adults, consumer groups, disability advocacy groups, 

educators, entrepreneurs, technology companies, employers, long-term care 

and health service providers, government (local and state) entities, policymakers, 

health system advocacy organizations, and academia, as well as the people 

supported by family caregivers.

How to Use the Strategy

The Strategy was written to address a wide range of potential stakeholders; not all 

outcomes will apply to all stakeholders. Each sector and stakeholder has a role to play

in implementing the Strategy; the Advisory Councils recommend that each stakeholder 

begin by identifying and prioritizing the goals, outcomes and actions that they can best 

support

Every sector also should review the Federal Actions to look for ways to align 

their own actions with federal efforts and funding opportunities to reduce silos 

and redundancy. They should also review Actions for Others to similarly identify

opportunities for collaboration at the state and local levels

Finally, because many of the recommended actions will require cross-sector 

collaboration, an important step for all stakeholders will be to begin forming 

partnerships—within and outside their traditional networks—that can be used to 

achieve the goals of the Strategy

In addition, the Advisory Councils offer the following suggestions for specific 

stakeholder groups:

■ Academic institutions and researchers can consider the findings in the Advisory 

Councils’ reports and the actions presented in the Strategy to formulate and 

advance agendas for research, data gathering, and analysis. They also can use

this information to develop and disseminate new evidence-informed or evidencedbased interventions for family caregivers

■ Business leaders and employers can proactively champion recognition and 

support of family caregivers across a range of settings using the ideas and 

suggestions in this document. They may wish to identify actions that would enable

them to better recognize and support their employees who are family caregivers 

and participate in data collection to ultimately improve workplace productivity and 

strengthen bottom lines
2022 National Strategy to Support Family Caregivers Page 28

■ Health care systems consist of organizations and providers with a shared goal of 

promoting, restoring, and maintaining the health of patients. Such systems can use

the suggestions that follow to identify ways that the needs of family caregivers can 

be incorporated into their existing workflows and processes which were designed 

to solely support patients. They also can identify opportunities to include family

caregivers and care recipients on decision-making boards and incorporate family 

caregiver awareness into training protocols and patient education materials

■ Child welfare agencies work in communities to strengthen families and keep 

children safe, however, their primary focus is often on children in formal foster 

care situations. The Strategy presents an opportunity to take note of and address

long-standing gaps experienced by kin and grandparent caregivers outside the 

foster care system. These include improving recognition of kin and grandparent

caregivers who are outside the formal foster care system and increasing access 

to services and assistance that could improve their ability to provide care to 

children in their homes

■ Communities of faith and faith-based organizations (FBOs) are trusted 

sources of information, support, and comfort for millions. By considering possible

ways they can support the recommendations and actions in this section, FBOs can 

play an even more meaningful role in the spiritual and emotional wellbeing of the 

individuals within their congregations and communities

■ Community-based providers of long-term services and supports play a 

critical role in delivering essential services and supports for family caregivers. The

recommendations and actions contained in this Strategy offer a roadmap for their 

own program development in support of family caregivers

■ National, state, regional and local philanthropic organizations have 

an opportunity to advance recognition and support caregivers by identifying 

opportunities that align with their respective philanthropic goals and objectives

■ States, tribes, and communities have an opportunity to adopt actions and use 

them to strengthen recognition and programming for family caregivers and for 

similar state-level strategizing on behalf of caregivers

■ Family caregivers, people receiving care, advocates, and members of the 

public can use the document to work with legislators, program administrators, 

employers, and neighbors to adopt and administer person-centered and traumainformed approaches that are based on caregivers’ documented needs and 

preferences and grounded in cultural humility.
2022 National Strategy to Support Family Caregivers Page 29

Related Resource: A Roadmap for States 

After reviewing the Actions for Others document, states and state agencies should 

also review the extensive six-part RAISE Act State Policy Roadmap for Family 

Caregivers (Roadmap) developed by National Academy of State Health Policy (NASHP) 

under a generous three-year grant from The John A Harford Foundation (JAHF) and 

RRF Foundation for Aging. The Roadmap was designed in response to the RAISE Act

Advisory Council’s Report to Congress. Its purpose is to assist state officials to better

understand the state policy landscape for supporting family caregivers of older adults 

and to identify opportunities for innovation in their own states. The Roadmap contains

six stand-alone sections:

■ Section 1: Public awareness and outreach to family caregivers

■ Section 2: Engagement of family caregivers in health care systems

■ Section 3A: Increasing access to services and supports

■ Section 3B: Strengthening the direct care workforce

■ Section 4: Protecting and enhancing family caregivers’ financial and employment 

security

■ Section 5: Increasing data, research, and evidence-based practices to support 

caregivers

Disclaimer and Limitations 

The development and release of the Strategy is a requirement of the RAISE Family 

Caregivers Act. It is not a budget document and does not imply approval for any

specific action under Executive Order 12866, the Paperwork Reduction Act, or any 

other statute. The federal actions presented in the Strategy are subject to budgetary

constraints and other approvals, including the weighing of priorities and available 

resources by the administration in formulating its annual budget and by Congress in 

legislating appropriations

The Advisory Councils believe the Strategy presents a vision for meaningful change

While the Advisory Councils believes the recommendations for the federal government, 

states, communities, and other stakeholders are ones that the Advisory Councils have 

the strongest potential to positively impact the pressing public health issue of caregiver 

support and recognition and are necessary, the Advisory Councils do not have 

authority to require adoption by any agencies or entities

The RAISE Family Caregivers Act calls for periodic updates to the Strategy. Comment

on the Strategy are welcome and will play an important role in the first update. The

Strategy will be formally open for comment for 60 days shortly after its release, and 

there will be additional opportunities for public input as the next iteration is developed
2022 National Strategy to Support Family Caregivers Page 30

Goal 1: Increase awareness of and outreach to 

family caregivers 

Caregiving is a public health issue that receives inadequate recognition, and family 

caregivers are often the hidden heroes of the health care, long-term supports and 

services, and the child welfare systems. Improving support for family caregivers

requires increased awareness of the roles they play and the challenges they face. In

addition, there are many people providing support to loved ones who do not think of 

themselves as “caregivers;” they need to be empowered to identify the crucial role they 

play so that they can receive available training and assistance if they need it. Reaching

these populations, especially historically marginalized groups, will require focused 

efforts to overcome mistrust of institutions, systems, and governments and use of 

culturally competent approaches. The Advisory Councils recognize that these efforts

must be iterative. However, in coordination with the achievement of other goals, they

will pave the way for greater recognition and support of family caregivers and better 

inclusion of caregivers in existing systems

Accessible, Linguistically and Culturally Competent Services: In any approach 

designed to increase awareness of family caregiving, communications channels 

and methods must reflect the communities for which the message is intended

Such outreach efforts should be coordinated across the public and private sectors 

with consistent overall messaging, but it must be customized to meet the needs of 

underserved communities. It is also important to ensure that all language, pictures,

graphics, videos, and other communications included in outreach materials are 

accessible and promote a sense of safety, trust, and empowerment. They should be

created in partnership with their target audiences and take into consideration the 

language preferences, cultural values, gender dynamics, historical circumstances, and 

types of family caregiving typical in each community. Because not all caregivers have

access to the Internet, dissemination methods should be broad (e.g., electronic/webbased, in-person, print, podcasts, et

Outcome 1.1: Americans are educated about and understand the 

experience of family caregiving.

From our Listening Sessions

“Now is the time to address this issue. Caregivers are a national gem or a 

resource. Without them, it would cost us, I don’t know how many billions more 

dollars than it is costing us right now...You’re going to be in real trouble America, 

if we don’t do something sooner...at the top of my list is to have some campaign 

so that we could turn on every TV station, open up Facebook, Twitter and just 

this would be an omnipresent message that we have to do something now.” 
2022 National Strategy to Support Family Caregivers Page 31

The Any Care Counts Campaign is a caregiver identification campaign to 

recognize and support unpaid caregivers in Massachusetts by connecting them to 

available support resources in the state. It also includes free access to a culturally

competent caregiving intensity index developed by ARCHANGELS

Despite its many benefits to individuals and society, widespread public understanding 

of the breadth, depth, and complexity of family caregiving across the care continuum 

remains inadequate. Too often, caregivers report only learning exactly how complex

it is after finding themselves unexpectedly plunged into the role. Even medical,

educational, legal, financial, and social services professionals sometimes fail to fully 

comprehend the diverse needs, issues, and challenges faced by family caregivers

Such limited awareness is a partial contributor to many of the challenges faced by 

family caregivers, such as lack of inclusion in care settings and health records, limited 

training and support, inadequate research, and inconsistent definitions and data

Awareness Campaign

The priority action under Outcome 1.1 is a national, multi-pronged information

campaign designed to bring family caregiving out of the shadows and make it a dinner 

table conversation in every home across the nation and respected at all points of 

service. It should also serve as a reminder that each of us will likely experience

being a family caregiver, needing a family caregiver, or both at some point, and 

the best way to prepare for that eventuality is through planning now

Because every family and community is unique, the campaign should offer a playbook 

with customizable, plain language messaging that can be adapted for specific 

segments of the population and reproduced in a range of accessible formats. Such a

tool will include culturally competent messages that recognize that not all terms and 

recommendations resonate with different populations. All public campaigns should

aim to increase family caregiver self-identification by highlighting the full diversity of 

caregivers and caregiving situations. They should also emphasize that while family

caregiving can be emotionally rewarding, it often comes at an emotional, physical, and 

financial cost to the caregiver

Ideally, the campaign should be led at the national level through a public-private 

partnership in coordination with the federal government. This approach will ensure

unified messaging, consistent data and evaluation, and uniform definitions of 

caregiving. It also will allow for integration of lessons learned and data from previous

successful national education and awareness campaigns

Civic organizations and businesses can help to advance the awareness campaign 

and boost general awareness of family caregivers by incorporating its messaging 

about the role and value of family caregivers into existing materials, work products, 
2022 National Strategy to Support Family Caregivers Page 32

and business practices. For example, community organizations can blend messaging

from the campaign with local data about caregiving needs to develop a mini campaign 

to recruit and mobilize volunteers to assist family caregivers in the community and 

promote local caregiver support resources. They also can conduct needs assessments

as a first step in developing future tools and resources for local family caregivers

Philanthropic and faith-based organizations can adapt the campaign to create 

culturally competent family caregiver support activities that reflect the preferences and 

values of their respective communities. Meanwhile, schools can ensure language on

intake forms, websites, and other materials to ensure kin and grandparent caregivers 

are represented in the language and imagery. This will both improve inclusion of thes

family caregivers and help to raise awareness of the fact that many children today live 

with kin and grandparent caregivers. Finally, businesses that are open to the public,

like coffee shops, restaurants and retail stores, can incorporate caregiver awareness 

messaging into their own advertising, signage, store promotions, and staff trainings 

This will ensure frontline staff,managers, and even other customers can recognize 

and respond appropriately to family caregivers they encounter in the course of a day

(Also supports Outcome 3.5) An additional benefit of raising awareness of caregiving

in professional settings is that it also has the potential over time to increase awareness 

among employers of the needs of their staff who are also caregivers. These can

include flexible work hours, time off on short notice, and paid leave for caregiving

(Also supports Outcome 4.2)

The campaign should be grounded in national, state, and local data about caregiving 

based on research and data collection activities described in Outcome 5.1. It should

be timed to capitalize on existing caregiving-related observances such as National 

Family Caregivers Month or National Kinship Care Awareness Month

Family Caregiving Information Platform

The awareness-raising campaign should include a central communications platform, 

ideally hosted by or in collaboration with the federal government. This platform would

provide public and private entities a curated array of consistent family caregiving 

resources, data, quality indicators, caregiver identification tools, model policies, 

training materials, technical assistance, learning collaboratives, and a mechanism 

for finding available services and supports in the local community. Family caregiver

themselves should also have access to this platform so that they can use it to share 

experiences and insights with one another. The existence of a centralized family

caregiving information platform will ensure that users receive cohesive definitions, 

messaging, and resources in a single location. Meanwhile, campaign supporters and

state governments would also have access to toolkits, talking points, and templates 

that could be adapted for local populations. National, state, regional and local

philanthropic organizations may wish to consider funding collaboratives to develop 

toolkits, templates, and related training materials for inclusion on the platform and to 
2022 National Strategy to Support Family Caregivers Page 33

support enhanced outreach and awareness. (Also supports Outcomes 1.5, 3.1, 4.1,

5.1, and 5.3) 

As part of their participation in the national campaign, states may wish to conduct 

environmental scans to better understand the programmatic landscape for family 

caregivers at the state and local levels. Using the results from state programs and

initiatives to support caregivers, states and their respective managed care plans may 

wish to create or enhance resource guides for health care systems, social service 

providers, and other stakeholders

Outreach to Underserved and Hard-to-Reach Populations

In addition to a general awareness-raising campaign, targeted outreach should focus 

on populations facing additional barriers that increase the challenges associated 

with family caregiving. These include kin and grandparent caregivers raising children

impacted by trauma, family caregivers impacted by mental illness and/or substance 

use disorders, family caregivers in communities of color, LGBTQIA+ caregivers, 

caregivers with disabilities and caregiving youth. Targeted outreach should include

federal outreach to states and grantees about available programs and initiatives to 

support caregivers along with outreach by states, communities, and professional 

associations, customized messages to the needs and preferences of the populations 

reached by each. States can also support the capacity of community-based

organizations to conduct outreach and to help family caregivers to navigate the service 

delivery system

Outreach to Professionals

A parallel campaign also should be initiated at the national level to educate 

professionals across a wide range of sectors who interface with family caregivers in the 

course of their work to improve their ability to identify and support family caregivers

These include, but are not limited to, medical, education, finance, and social services 

professionals. The campaign for professionals should also have a playbook that

contains messages and content that can be adapted for specific audiences. This

would allow for focused, but equally aligned, sub-campaigns that could educate a host 

of professionals often overlooked in education efforts that focus on family caregiver 

support. These can include retail workers, hospitality professionals, legal professionals,

and public safety officers. Finally, community-based organizations should consider

targeted information campaigns, using local data, to educate their elected officials and 

policy makers about issues related to caregiving. (Also supports Outcome 1.5

Both the public and the professional campaigns should provide non-copyrighted 

images, graphics with diverse/relevant imagery, and text that can be quickly adapted 

by other stakeholders. These materials should represent family caregiving as a broad

experience that can affect anyone at any stage of life. It is critical to ensure that
2022 National Strategy to Support Family Caregivers Page 34

materials are accessible to and include and reference—through both language and 

images—populations of caregivers such as same sex couples, racially and ethnically 

diverse individuals, and people of all ages with a variety of disabilities. Finally, because

family caregiving is constantly evolving, all outreach should be regularly reviewed 

and updated to ensure messaging is current, appropriate, relevant, and reflective of 

available supports in the state and/or community. As part of this, it is important to

remember that ensuring language access goes beyond word-for-word translation into 

other languages; the message itself should be vetted to ensure that it is culturally 

competent. (Also supports Outcome 1.3

This case study includes lessons learned and details from the national 

campaign to promote CMS’s Medicare & You and the development and launch 

of Medicare.gov in 1998. The outreach plan also included local campaign

adapted to the needs of diverse populations

More Than Words 

All sectors can explore other approaches for raising awareness of family caregiving

One example is to adopt the inclusive and broad definition of “family, kin and 

grandparent caregiver,” as statutes and regulations permit, and to participate in, or 

initiate, observances related to family caregiving

To further integrate the experience of family caregiving into all aspects of day-today life, local government entities and providers of supportive services for family 

caregivers, such as respite care, can partner with local media (TV, radio, print) to 

increase the prevalence of stories about caregiver experiences and to highlight 

available programs and services. (Also supports Outcomes 1.3 and 3.1) Greeting card

companies, realtor associations, restaurants, and others could incorporate appropriate 

and evidence-based caregiver support in their products and services and employee 

training. (Also supports Outcome 5.3

Retailers can offer caregiver discounts for select goods and services that can make 

family caregiving easier or explore other ways to offset the expenses associated with 

family caregiving. (Also supports Outcome 4.1) Libraries can curate a “family caregiver

corner” with books, films, resources, and other information specifically for or about 

family caregivers. Libraries also can devote time and space to offer family caregivers

the opportunity to learn how to do online searches for information, training, and other 

resources to support their responsibilities. Communities of faith can create or expand

“family ministries” to include family caregiving as a special focus. They also can hold

special “caregiver outreach and recognition days” for their congregants at which local 

service providers can provide information about available services and supports

Schools can use “backpack campaigns” to include information about available services 

and supports for caregiving youth and/or for grandparent and kinship caregivers
2022 National Strategy to Support Family Caregivers Page 35

Area agencies on aging, state DD Councils and other organizations in the aging and 

disability networks can ensure that staff are aware of available family, kinship, and 

grandparent caregiver support programs and services and trained in the importance of 

proactive caregiver identification and referral

Aligned Actions

Federal agencies have committed to 51 specific actions within the coming years 

in support of Outcome 1.1. See “Actions for Others” for more than 50 additiona

actions that states, communities, and other stakeholders can take to support Goal 1

Outcome 1.2: Caregiver self-identification and knowledge of services 

is enhanced. 

From our Listening Sessions

“...I keep using the analogy, until the word ‘caregiver’ resonates like 

the word ‘parent’, it’s really hard to enforce things because not 

everybody’s talking about the same thing...Until there’s that knowledge base 

about what these caregivers are and the support they need, I don’t 

think the sticks and carrots really matter...” 

Many family caregivers assist others for years without realizing that their efforts 

extend beyond typical relationship expectations. By the time they realize that they are

caregivers, they have often missed critical opportunities to learn family caregiving skills 

that could enable them to provide care while maintaining their own health and wellbeing. To address low rates of family caregiver self-identification, and in turn increase

access to beneficial services, the Advisory Councils, using input from the key informant 

interviews, stakeholder listening sessions, and two formal requests for public input,

identified three priority actions for boosting caregiver self-identification and knowledge 

of services

Help Family Caregivers Self-Identify

The first priority action is to develop simple family caregiver self-identification tools 

that can be widely adopted. This could be a consistent question embedded in existing

workflow such as “do you help someone with shopping or daily activities?” Health care 

systems, social services agencies, schools, employers, and others should investigate

and identify ways such tools can be incorporated into current processes to increase 

timely identification of family caregivers. For maximum impact, these tools should

be promoted and used across all programs, regardless of funding source, and made 

available in conjunction with a multi-model public awareness campaign. (Also supports

Outcome 1.1) To further boost caregiver self-identification, the broadest possible 

definitions of “family” should be used to include friends, neighbors, and others. This
2022 National Strategy to Support Family Caregivers Page 36

will ensure self-identification tools and related promotional materials are inclusive of 

families in racially and ethnically diverse, tribal, and/or LGBTQIA+ communities

Accessing Services

As people become aware of their role as family caregivers, it is critical that they learn 

about services and supports available to them within a short period of time. These

self-identification tools should also include information for how/where to access 

services and supports in a particular state or community. Messaging conducted

as part of other outreach campaigns about available services and supports should 

speak to this growing awareness and understanding of the importance of proactive 

and early requests for help. Hospitals/health care providers can conduct outreach to

their patients’ families to help them self-identify as family caregivers as part of their 

discharge planning, and in tandem with the CARE Act. (Also supports Outcome

2.4) Kinship care programs can periodically review their outreach and awareness 

programs to identify opportunities for improvement in helping new kin and grandparent 

caregivers self-identify as such. (Also supports Outcome 3.10) States can also look

for opportunities to support community- and faith-based organizations in their efforts

to boost self-identification in underserved communities

Partnering with Providers and Industry

Service providers have an important role in developing content, materials, and services 

specifically for a population of newly identified family caregivers. Professionals who

engage with family caregivers must receive continuing education about available 

services and supports. They also must be prepared to respond to family caregivers

with referrals to trusted and culturally competent services. This will require investments

in combining information about family caregivers with existing continuing education, 

professional reading, conference materials, and certification/licensing requirements 

across a range of professions (e.g., medicine, law, education, social services, publi

services, and the hospitality industry)

The family caregiver stakeholders interviewed by UMass Boston and Community 

Catalyst agreed that the platform described in Outcome 1.1 could offer information 

to the public and serve as a vehicle for educating professionals on caregiver 

identification and the family caregiving experience. Ideally it would feature training

modules for employers and health care providers and other professionals who 

interact with family caregivers. These trainings would provide guidance and best

practices on how they can support family caregivers in their respective environments

They could also include testimonials, stories, and other lived experience to help 

professionals empathize with the experience of family caregiving. Such an initiative

is more likely to be successful with widespread buy-in and engagement of partners 

across sectors of the U.S. econo
2022 National Strategy to Support Family Caregivers Page 37

Aligned Actions

Federal agencies have committed to 23 specific actions within the coming years 

in support of Outcome 1.2. See “Actions for Others” for more than 50 additiona

actions that states, communities, and other stakeholders can take to support Goal 1

Outcome 1.3: Outreach to family caregivers is improved.

From our Listening Sessions

“I think one of the things that needs to happen is redefining and being more 

holistic about what we mean by ‘outreach’.” 

Family caregivers responding to the two public requests for information and the 

participants in the stakeholder listening sessions repeatedly described the above noted 

challenges in finding family caregiving assistance. Many reported they learned too late

about services—such as respite care—that could have helped them. Some caregivers

were unaware of services because they have difficulty finding non-English language 

materials

At present, while some supportive services for family caregivers are available, many 

caregivers are not aware of them—especially individuals who are new to the family 

caregiving role. By the time they come to learn about these services they often find

that they cannot access them for a host of logistical reasons (e.g., cost, scheduling

distance from home/work, lack of availability of child care or respite services, or they 

are not culturally competent). (The centralized family caregiving platform described

under Outcome 1.1 can also help to address this issue.

Kinship Navigators provide kin and grandparent caregivers in many states with 

a menu of trusted options and support and help to prevent unnecessary entries 

into foster care. They provide a model that should be translated across a range of

sectors to increase effective outreach to caregivers in other caregiving situations

A Needed Cultural Shift

For supports to become more widely accessible across the population, the nation 

must accept and acknowledge family caregiving as a universal experience. Only then

will family caregivers themselves feel comfortable asking for and accepting assistance 

and accommodations for family caregiving. Professionals with whom they interact

might also be better prepared to respond in a way that is meaningful. To provide

the much needed “course correction” for the many family caregivers who remain 

unreached by current outreach efforts, the Advisory Councils, using input from the key 

informant interviews and stakeholder listening sessions and the results of the RFIs, 
2022 National Strategy to Support Family Caregivers Page 38

identified three linked actions, the outcomes of which will collectively increase outreach 

to populations of family caregivers that often are missed in current outreach efforts

Researchers, health care and social services systems, and federal and state agencies 

can use a series of coordinated national and local information-gathering efforts to 

better understand and document the needs of specific populations and how best 

to reach them. (Also supports Outcome 5.1) The results of these efforts can then

inform the development of culturally competent outreach campaigns by different 

sectors. (Also supports Outcome 1.1) When translated in linguistically and culturallyappropriate ways, such efforts could dramatically increase awareness of family

caregiving—especially in underserved, multicultural, or immigrant communities

Stakeholders across all sectors may wish to recruit and/or partner with trusted 

members of diverse communities to create a communication path between family 

caregiving communities and service providers. Examples include community health

workers, peer health educators, promotoras, community resource coordinators, faith 

leaders, advocates, and trusted service providers such as barbers/hairdressers, 

teachers, cab drivers, librarians, and pharmacists. States, philanthropic organizations,

and other funders can support these efforts by funding community-based 

organizations to conduct outreach and help family caregivers navigate service delivery 

systems. Primary care physicians, pediatricians, gerontologists, and similar medical

providers can further support this by partnering with Community-based organizations 

and FBOs to offer wrap-around caregiver support to their patients. Health care

systems that are already offering navigation services related to family caregiving 

support during discharge planning may wish to share

As more people begin to recognize themselves as caregivers, all sectors should take 

steps to increase awareness of and access to person- and family-centered, traumainformed, and culturally competent programs and services before caregivers are in 

crisis mode. (Also supports Outcome 3.1

Aligned Actions

Federal agencies have committed to 10 specific actions within the coming years 

in support of Outcome 1.3. See “Actions for Others” for more than 50 additiona

actions that states, communities, and other stakeholders can take to support Goal 1
2022 National Strategy to Support Family Caregivers Page 39

Outcome 1.4: Family caregiving—and caregivers—are embedded in 

federal, state, territorial, tribal, and local planning.

From our Listening Sessions

“I would love to see something that links people in a system and then 

can take them to their local communities...If we can connect people to 

services...It’d be nice to have a national [website] that was not for 

profit, and then got people to the right place.” 

While family caregivers and the people they support are sometimes included in the 

planning and policy development processes undertaken by federal, state, territorial, 

tribal, and local governments and other planning entities, this is not yet consistent 

across the nation. As a result, their needs are not fully understood or addresse

Sometimes, efforts to support family caregivers focus only on the caregiver and do not 

consider the needs of the person receiving care. Some efforts consider only specific

family caregiving situations, such as supporting older adults, and the needs of other 

caregivers are left out. To truly change systems in a way that ensures families are

supported across the lifespan and across family caregiving situations, caregiver voices 

and perspectives must be an integral part of planning efforts at all levels of society and 

government

Reaching Underserved Communities

Some populations of caregivers have traditionally been underserved and 

underrepresented in efforts to support caregivers, including caregivers of color and 

family members of people with ID/DD. In alignment with the HHS Equity Action Plan,

it is critical that state agencies and community-based organizations that are the 

recipients of federal funds comply with nondiscrimination requirements and commit 

to reaching traditionally unserved and underserved populations, including those from 

racially and ethnically diverse populations and those with intersectional identities. Such

an approach will allow for the inclusion of their perspectives and input in any proposed 

change and ensure the resources necessary for them to have equitable access to 

services and supports. Ways to do this include:

■ Developing a language and communication access policy and plan,

■ Adopting an ambassador program to create conduits between decision-making 

councils and communities, and

■ Increasing representation of people with lived experience on decision-making 

bodies
2022 National Strategy to Support Family Caregivers Page 40

Charting the LifeCourse, developed by Missouri Family to Family, provides 

guidance on delivering services for of people with ID/DD in ways that respects 

their cultural and personal preferences and needs

California’s Master Plan for Aging was developed through a range of stakeholder 

engagement initiatives including surveys, community events, webinars, legislative 

roundtables, and the creation of three advisory bodies comprised of subject 

matter experts, providers, and the public

Those states that do not yet have in place a deliberative body specifically charged with 

considering the needs of caregivers, including those from underserved communities, 

may want to consider establishing one (with caregiver representation, of course) to 

ensure that caregivers have a voice in planning and policymaking regarding services 

and supports. To increase equity and inclusion of underserved groups, state and local

entities are encouraged to ensure that planning efforts specifically include actions that 

support people who experience multiple forms of discrimination and who may face 

additional barriers because of disability status, race, ethnicity, gender, gender identity, 

sexual orientation, and national origin (including limited English proficiency)

To reduce redundancy, state and local caregiver-related planning initiatives should 

be aligned with the Strategy. That means using consistent definitions of caregivers

as described under Outcome 5.1, adopting the broadest possible definition of 

“family caregiving” across all external messaging (e.g., related to education health

social services, child welfare, legal, financial), and developing state and community 

playbooks that support the Strategy

Aligned Actions

Federal agencies have committed to 13 specific actions within the coming years 

in support of Outcome 1.4. See “Actions for Others” for more than 50 additiona

actions that states, communities, and other stakeholders can take to support Goal 1

Outcome 1.5: Public-private partnerships at all levels help drive family 

caregiver recognition and support.

From our Listening Sessions

“We have ambassadors, we have champions, but when you talk about the 

systems that those individuals have to then go and...liaison between, that 

doesn’t carry a lot of weight...these need to be empowered paid administrators, 

managers, directors, within these communities that hopefully come from these 

communities so that they know what’s available.” 
2022 National Strategy to Support Family Caregivers Page 41

Achieving national cultural change requires more than just the efforts of the federal 

government. To create a system that supports families, multiple sectors—both

public and private—must work together. No single sector can do it alone. The RAI

Family Caregivers Act identified multiple areas of focus for the Strategy that would 

benefit from partnerships between public and private stakeholders. Benefits of such

collaborations can include development of key products that would be otherwise 

difficult to capture otherwise (e.g., some kinds of research data); engagement o

entities not traditionally focused on family caregiving (e.g., large employers), and a

increase in awareness, protection from discrimination, and understanding of the issues 

facing family caregivers and the benefits for those who support them

Wherever possible, opportunities to leverage the combined wisdom, talent, and 

resources of the public and private sectors should be explored. The family caregiving

information platform described in Outcome 1.1 is just one of many components of the 

Strategy that would benefit from broad public-private collaboration. While providing

public resources, data, and information developed by the federal, state, and other 

sources, the platform could also include training modules for a range of audiences 

about how to support family caregivers. These materials ideally would be developed

in the private sector, with input from across various sources, to maximize the ability 

to align innovative training techniques with the goals of the Strategy. To increase

alignment, federal agencies participating in such an effort can disseminate information 

and lessons learned back to the Advisory Councils for integration in future iterations of 

the Strategy

State Planning

When state agencies develop federally mandated state plans (e.g., Medicaid stat

plans, state plans on aging, disability service plans, and state assistive technology 

plans), particularly those that address the needs of caregivers, public-private 

partnerships, particularly those that include employers and health care providers, 

should be included into the planning process. In support of this, state units on aging,

state councils on developmental disabilities, centers for independent living, and other 

community-based organizations can establish collaborations with major employers 

and state, regional, and local philanthropic organizations to create family caregiver 

coalitions with dedicated funding and projects in place to support family caregivers

(See Goal 4) 

Aligned Actions

Federal agencies have committed to 17 specific actions within the coming years 

in support of Outcome 1.5. See “Actions for Others” for more than 50 additiona

actions that states, communities, and other stakeholders can take to support Goal 1
2022 National Strategy to Support Family Caregivers Page 42

The Massachusetts Caregiving Initiative is a public/private partnership to 

drive innovation in caregiver support. Its coalition of more than 30 member

organizations has launched a wide range of data-driven tools and resources to 

benefit caregivers in the state since 2019

Indicators of Success: Outreach and Awareness

As the actions under Goal 1 are implemented and each of the outcomes are attained, 

family caregivers will experience greater recognition as the following social changes 

take place:

■ Society increasingly recognizes, appreciates, acknowledges, and celebrates the 

contributions that family caregivers make to the lives of others

■ When caregivers seek assistance, they have trusted and easily accessible sources 

of reliable, appropriate, and actionable information regarding available services and 

supports

■ More people understand and appreciate the challenges caregivers face

■ Caregiver identification (including self-identification) increases

■ Family caregivers feel more comfortable seeking assistance

■ Family caregivers participate actively in federal, state, territorial, and tribal planning

■ Family caregivers are recognized as subject matter experts on caregiving and 

sought out for input and guidance by decision-making authorities 

■ Employers recognize the roles, responsibilities and needs of employees who are 

caregivers and offer flexible policies (telework, flex time, paid leave) so that they 

can conduct caregiving responsibilities under unexpected or emergent situations 

without risk of losing employment

■ Family caregivers in underserved communities have increased access to services 

because of improved culturally competent outreach from those services

■ Professionals across a wide range of fields routinely recognize family caregivers 

when they meet them and are prepared to refer them to culturally competent 

services and supports

■ Greater awareness of family caregiving and expanded outreach and education leads 

to measurable increases in caregivers’ physical, emotional, and financial well-being

■ Accurate representations of family caregivers and the people they assist are 

increasingly reflected in media, advertising, and the arts
2022 National Strategy to Support Family Caregivers Page 43

Goal 2: Advance partnerships and engagement with 

family caregivers

Family caregivers are called upon to play an integral role in the support, care, and 

well-being of others. Yet, the systems with which they are regularly required to

engage (e.g., health care, long-term services and supports, education, child welfare

legal systems, etc.) are often burdensome, complicated, time-consuming, minimally

responsive, and confusing. They often do not value the crucial nature of the role

caregivers play, do not recognize their lived experience or expertise, and do not 

consider their time or needs. This was seen regularly during the COVID-19 pandemic,

when family caregivers who were essential to the care of hospitalized patients were 

excluded from medical facilities because they were regarded as guests

A holistic, person- and family-centered caregiver support system is one that—with 

the consent of the person receiving care—fully integrates the family caregiver into 

care processes within existing systems. At a minimum, they must be included in the

aspects of decision-making and planning that affect them. The Advisory Councils

developed five outcomes relating to inclusion of family caregivers in the service 

systems with which their care recipients most often interact: health care, education, 

and social services. These outcomes reflect a future where approaches to care

are no longer developed with the assumption that family caregivers will take on 

challenging tasks and roles without their consent or full understanding. Over time,

and in coordination with the achievement of other goals, they will pave the way for 

partnerships and engagement of family caregivers that enable them to provide better 

care for as long as possible, to share information about the individuals receiving their 

care, and to receive appropriate services and supports to meet their own needs

Outcome 2.1 Family caregivers are recognized as essential partners in 

the care teams of the person(s) to whom they are providing support. 

From our Listening Sessions

“...Caregivers should be as much a part of the health care team as 

physicians, nurses, etc.” 

Multiple respondents to the family caregiving RFI noted that when a care recipient 

designates a family caregiver, that caregiver often goes on to play a key role in 

ensuring the medical, social services, and personal needs of the individual are met

One respondent referred to them as the “glue” that keeps the system together. For

that reason, it is crucial that their role be recognized in health care and educational 

settings, particularly when care and/or educational plans are being developed for the 

individuals receiving support and those plans include tasks and responsibilities to be 

carried out by the caregiver. Too often, care plans are developed for individuals that
2022 National Strategy to Support Family Caregivers Page 44

require caregivers to perform certain tasks, such as medical tasks, personal care 

tasks, or transportation, without input from the caregiver

Including family caregivers in the development of care plans and providing them access 

to information, with the approval of the person receiving support, has the potential 

to improve outcomes. An informed caregiver, particularly one trained in how best to

support the needs and preferences of the individual, is better able to communicate 

changing needs to providers, manage medication, and assess health care options, such 

as whether to visit a hospital emergency room or an urgent care center during an acute 

incident—or to support the person for whom they care in doing so.

In the educational realm, kin and grandparent caregivers are often responsible for 

ensuring that a child completes their homework or attends health-related (including 

mental health) appointments. To recalibrate systems to facilitate caregiver success and

better outcomes for the individuals receiving their care, the Advisory Councils identified 

two key approaches that should be undertaken in coordination with the federal 

government

The priority action is to establish a consensus group made up of public and private 

health care, education, and social services leaders, family caregivers, people receiving 

care, and other related parties to develop strategies for systematically incorporating 

family caregivers into health care, social service, and academic systems. This

should specifically include addressing barriers to caregivers being a part of “the care 

team,” such as lack of recognition of caregiver roles, access challenges (broadband, 

transportation, etc.), and reimbursement models that effectively create disincentives

for caregiver inclusion. It should also consider legal barriers and issues and ensure that

family caregivers support, but do not displace, the role of the person receiving support 

in decision making. A priority of such a group should include encouraging health care

payers and others to create or leverage financial incentives, such as billing codes and 

approvals for health plan inclusion to enable payers, clinicians, and social services 

providers (including home health agencies) to partner with family caregivers in ways 

that continue to center the needs of the person receiving support, while also ensuring 

caregivers have a voice in decisions that will affect them

A second priority action is to develop the infrastructure (and appropriate funding 

sources) necessary for researchers; national, state, regional, and local philanthropic 

organizations; health care systems; and others to measure and disseminate the 

quantitative and qualitative contributions that family caregivers make in supporting 

the health and well-being of people of all ages across a wide range of circumstances

A priority of such research should be more tools for culturally competent caregiver 

identification. (See Outcome 5.1 for discussion
2022 National Strategy to Support Family Caregivers Page 45

To assist with integrating caregivers in medical settings, the Ontario Caregiver 

Organization created caregiver ID badges to visually recognize family caregivers 

in health care settings. They also created a toolkit to help systems integrate the

badges into existing health care protocols

Finally, while two separate outcomes under Goal 1 (Outcomes 1.1 and 1.2) describe 

the need for increased family caregiver identification across populations, there are 

also specific situations within existing systems where it is necessary for professionals 

to quickly identify a caregiver for efficient delivery of services. Examples include

when first responders arrive on the scene of an accident, during triage in emergency 

departments, or when an adult who is not the parent brings a child to school. The

need for such tools presents an opportunity for both public and private entities to 

fund and support the research and development of a range of evidence-based tools 

and technologies for effective, proactive caregiver identification and the inclusion 

of caregiver information into medical and school records, when appropriate. (Also

supports Outcome 5.3)

As such tools become available, organizations can review existing practices, 

workflows, procedures, and industry standards to integrate them into existing 

workflows. This can mean adapting intake or screening protocols, surveying patient

or client populations to identify existing family caregivers and adapting messaging 

to ensure that caregivers are accurately reflected in those materials. (Also supports

Outcomes 1.1 and 1.3)

To support such broad cultural change in existing systems, a range of educational 

materials, job aids, trainings, and new workflow documentation will be needed 

across health care, education, social services, emergency, and even financial 

sectors. Professional accreditation agencies can amplify such efforts by requiring

implementation of tools to identify and support family caregivers as part of professional 

certification and accreditation

Aligned Actions

Federal agencies have committed to 13 specific actions within the coming years 

in support of Outcome 2.1. See “Actions for Others” for more than 50 additiona

actions that states, communities, and other stakeholders can take to support Goal 2

Outcome 2.2: Where appropriate, identifying services and supports 

needs for caregivers consistently starts with a review of family caregiver 

strengths and preferences using evidence-based assessments.

Many family caregivers find they are faced with a new reality for which they have 

no prior experience, nor do they know what reasonable expectations are to have of 

health care and other service providers. Accurately assessing the needs of family
2022 National Strategy to Support Family Caregivers Page 46

caregivers with evidence-based tools and protocols is critical to providing services that 

make a difference for the caregiver and empower them to better meet the needs and 

preferences of the person they are supporting. In addition, the findings of assessments

can also identify opportunities to address social determinants of health (SDHs). (See

Outcome 3.4 for further discussion of SDHs.

From our Listening Sessions

“With assessment tools, then they have to be free or very low cost... 

we’ve had a hard time accessing certain scales and then to get them in the 

languages that we need. So sometimes they’re translated and of course, we 

would want to use the validated, translated version.” 

As the RAISE Act Initial Report to Congress made clear, talking with family caregivers 

in addition to the person they are supporting enables clinicians and providers to better 

understand each person’s unique strengths, needs, preferences, and challenges. Such

understanding can facilitate the development of a family-centered plan of care that 

addresses the needs of both members of the caregiving dyad

2 This, in turn, has the 

potential to help family caregivers provide support for as long as possible

The federal government, states, health care systems, and community-based 

organizations should make culturally competent caregiver assessments a standard 

part of care delivery, where appropriate. That means they would be included in

quality measures and providers would be compensated for time spent conducting an 

assessment. The assessments should be based on reliable and evidence-informed

approaches. The outcomes of these assessments inform the development of a flexible,

family-centered plan of care. It is critical to note that there exists a distinction below

the assessment process, which uses structured, validated tools for determining a 

caregiver’s strengths, ability, and needs, and person-centered planning, which is an 

inductive process that identifies issues important and unique to a given caregiver and 

weaves those findings into a support plan

Researchers and academic institutions can support the adoption and use of caregiver 

assessments. There are several ways to do this including by investing in efforts to

better understand and assess specific instruments and mechanisms, translating 

instruments for cultural competency, training people to use and interpret the 

instruments, and integrating them into existing processes within health care and longterm services and supports systems. Integrating into existing processes will be key to

avoid “additional burden” concern from health care systems
2022 National Strategy to Support Family Caregivers Page 47

For more on person-centered planning, see: 

Five Competency Domains for Staff Who Facilitate Person-Centered Planning

Person-Centered Practices Self-Assessment for Governmental Agencies that 

Oversee Human Services

Policy makers, health care systems, and providers may need to be prepared for initial 

resistance to the widespread use of caregiver assessments. Many caregivers, in

particular kin and grandparent caregivers, have negative previous experiences with 

assessment tools being used in non-supportive ways. It is critically important that

the assessment process—and the language used in describing it—not be perceived 

as punitive for grandparents and other caregivers, and instead result in meaningful 

actions. (Some kin and grandparent caregivers are concerned that assessments will

be used in a way that would lead to the inappropriate removal of children from their 

homes or decision not to place the children with them rather than focusing on what 

supports could be put in place to support them caring for the children.) Advocacy

groups and health care associations may want to develop a communications 

campaign to raise awareness of how assessments can benefit caregivers. States

and communities can play an important role by reviewing existing state grandparent 

assessments and the procedures around them for cultural sensitivity. Ensuring a

common terminology across populations about the role and intended purpose of 

caregiver assessments will further integrate them in the delivery of services and 

supports

Once culturally competent assessments are developed and tested, health care and 

social services systems must implement evidence-based practices for caregiver 

support at all points of health care delivery. That can include broad adoption o

assessments as well as pilot projects in a variety of settings to identify caregivers in 

need of services and supports

After assessments are integrated into the care experience, the outcomes must be 

available to providers of services so that they can adapt their efforts to encompass the 

needs of the caregiver. As evidence-based and -informed assessment tools become

more available, health care, education, and social services systems must ensure 

that staff have the skills to use them (and operationalize the results) in ways that are 

culturally competent, trauma-informed, and person- and family-centered. To facilitate

these shifts, health care and LTSS systems should consider hiring and/or training 

dedicated staff, ideally with lived experience, to increase caregiver engagement

Caregiver assessments can do more than just identify the needs of the family caregiver

When aggregated and analyzed across all domains, the data from family caregiver 

assessments can be valuable tools for administrators and policy makers to develop 
2022 National Strategy to Support Family Caregivers Page 48

new programs and services or form new partnerships for service delivery based on 

what family caregivers say they need resulting in a more efficient and effective system 

of supports. (Also supports Outcome 5.3

Aligned Actions

Federal agencies have committed to 9 specific actions within the coming years 

in support of Outcome 2.2. See “Actions for Others” for more than 50 additiona

actions that states, communities, and other stakeholders can take to support Goal 2

Outcome 2.3: Where appropriate, family caregivers are included and 

considered in the development of care recipient’s plans of care across a 

range of settings and circumstances.

From our Listening Sessions

“I understand people definitely can’t go back to medical school, but 

starting early, starting in the school system, starting in the medical schools, 

in the curriculum, making sure that caregiver knowledge and 

understanding is taught from the beginning.” 

Family caregivers often are the de facto coordinators who help navigate systems 

of providers, services, and other supports. They make appointments, provide

transportation, take notes, fill prescriptions, use electronic health records and patient 

portals, and carry out care plans. Yet, they are often excluded from routine health care

encounters. Notably, they may not even be included in care transitions processes

as patients move across settings such as hospitals, skilled nursing/rehabilitation 

facilities, and other types of long-term care settings. Involving family caregivers in care

transitions and discharge planning activities to improve care coordination is the most 

basic level of engagement that family caregivers should expect

It is important to note, however, that inherent in any discussion about providing access 

to health care information are legal implications relating to preserving the autonomy 

and self-determination of the person receiving support. Not all people who provide

support are designated or equipped to make decisions on behalf of another person, 

nor should they have unfettered access to information such as health records and 

patient portals. All decisions about access to information should be made by the

person receiving support

The Sonoran Center for Excellence in Disabilities, funded by ACL, offers a 

20-question caregiver assessment tool for caregivers of individuals with ID/DD

The tool is specifically designed to support person-centered planning
2022 National Strategy to Support Family Caregivers Page 49

United Hospital Fund developed a toolkit for the implementation of New York’s 

CARE Act. It contains a guide for a hospital discharge process that includes the

family caregiver in a way that is designed to ensure the best outcomes for the 

patient while also respecting the preferences of the caregiver

Improvements to care coordination can be achieved by ensuring that when appropriate 

and supported by the care recipient, caregivers have a voice in all transition planning, 

regardless of the setting. Forty-four states have adopted the Caregiver Advise, Record,

and Enable (CARE) Act, which seeks to address this challenge by requiring hospitals to 

do the following:

■ Record the name of the family caregiver on the medical record,

■ Inform the caregiver when the person they support is to be discharged, and

■ Provide the family caregiver with education and instruction about the medical tasks 

they are expected to perform

These requirements are the first step to greater inclusion of caregivers in transitions

Where possible and appropriate, states may want to explore options for incentivizing 

CARE Act implementation or allowing for enforcement of its provisions. States have

an opportunity to explore options for more consistent and robust implementation of 

all provisions of the CARE Act, up to and including provisions for enforcement and 

monitoring by relevant regulatory agencies

In addition to these considerations, health care and social service systems should 

routinely scan their policies and practices for unnecessary or outdated policies that 

can present barriers to full family caregiver inclusion. Ideally, a caregiver should be

identified prior to discharge and the results of the family caregiver assessment should 

be integrated into the discharge planning instructions, including referrals to supportive 

services, if appropriate. (Also supports Outcome 2.2) State and community agencies

can support this effort by partnering with health care systems to develop and offer 

caregiver support services that address the specific challenges associated with 

hospital discharge and similar transitions

Supported-decision making (SDM) is one alternative to guardianship that 

ensures people with disabilities retain their decision- making capacity. With SDM

individuals retain their right to make decisions for themselves with the support of 

trusted friends and/or family members they choose. For more information, visit

ACL’s Supported-Decision Making Program webpage

Lessons learned from integrating family caregivers into settings transitions have the 

potential to benefit family caregivers in other settings. (Also supports Outcome 5.3)

There are multiple health care-centric care-coordination models proven to support 
2022 National Strategy to Support Family Caregivers Page 50

people and their caregivers during transitions. For example, research has shown that

coordinating care transitions is especially important for family caregivers of someone 

with dementia, especially where a change of location can result in more demands 

on the caregiver due to agitation, disorientation, or decompensating of the person 

receiving support. Other sectors can look to such models to translate caregiverfocused transitional programs to other settings, such as supportive services to people

with long-term care needs and their family caregivers

Aligned Actions

Federal agencies have committed to 9 specific actions within the coming years 

in support of Outcome 2.3. See “Actions for Others” for more than 50 additiona

actions that states, communities, and other stakeholders can take to support Goal 2

Outcome 2.4 When policies are proposed or revised, the potential 

impact on family caregivers is anticipated and understood.

From our Listening Sessions

“It’s very hard for providers of social supports to collaborate with health 

systems... They live on different metrics than we do, and they don’t understand 

what we’re talking about...And it I think it requires some real training and more 

sort of collaboration among the community-based organizations to have the 

market power to be able to work with the health systems.” 

Change in health care, social services, educational, and other systems is 

inevitable. When such changes occur, the opportunity presents itself to ensure the

responsiveness of the system remains the same or is improved for the people it 

touches. The Advisory Councils found that the best way to achieve this is through

engagement with individuals and their caregivers early and often in the processes 

driving change. Going forward, more attention should be paid to ensuring a thorough

understanding of the downstream implications and results of changes to systems, 

policies, and/or practice to persons needing care and their family caregivers. This is

the essence of person and family-center care that is expanded upon in First Principles: 

Cross-Cutting Considerations for Family Caregiver Support

As noted above, a key to achieving this is through representation of family caregivers 

on decision-making boards and committees that shape both policy and practice. Only

through their engagement can systems ensure the lived experience and perspectives 

of caregivers is considered and included

The federal government; universities; national, state, regional, and local philanthropic 

organizations; health care systems; school districts; and others can fund and/or 

disseminate research findings to increase understanding of how proposed policy 
2022 National Strategy to Support Family Caregivers Page 51

changes can affect caregivers. As part of this effort, researchers should identify best

practices for including caregivers in systems change. In addition, customer-serving

organizations should adopt practices that help identify all potential stakeholders 

(including caregivers) at the initiation of proposed projects. State leaders may wish

to explore means by which their state could champion caregiver inclusion as part of 

policy change. Certification, licensing and/or accreditation bodies can help by requiring

the full recognition and inclusion of family caregivers as key to effective policymaking

In this regard, licensing, and accreditation bodies can become leaders in ensuring the 

full inclusion of family caregivers across multiple settings and service delivery systems

Aligned Actions

Federal agencies have committed to 6 specific actions within the coming years 

in support of Outcome 2.4. See “Actions for Others” for more than 50 additiona

actions that states, communities, and other stakeholders can take to support Goal 2

Outcome 2.5: The education curricula of professionals who will 

potentially work with family caregivers include specific topics and 

coursework designed to ensure they have the skills to do so effectively.

Strengthening professional awareness and understanding of the needs of family 

caregivers is especially critical for any field that might engage with them, including 

(but not limited to) geriatrics, social work, public health, child development, palliative 

care, mental health, substance use, criminal justice, education, and pediatrics. When

professionals who interact with caregivers have no training on how best to interact 

and engage with them, the ability to provide culturally and linguistically appropriate, 

person and family-centered care is inhibited. Training for these professionals

should use the broadest possible definition of “family caregiver” to include kin and 

grandparent caregivers, caregiving youth, LGBTQIA+ caregivers, disabled caregivers, 

and caregivers in nontraditional family structures. A core competency in those trainings

must be caregiver inclusion, where appropriate and desired, in care delivery. Trainings

should be built upon available and emerging data and research on family caregiving 

(See Goal 5) and include understanding the role of family caregiver assessment 

and the availability of the appropriate tools and resources for facilitating referrals, 

assistance with navigating complex service delivery systems, and understanding 

the options for support that are available. They should also include family caregivers

themselves as presenters to ensure that students can develop understanding and 

empathy for the lived experience of caregivers

States and accrediting organizations can support these efforts by requiring 

professionals to receive training on family caregiving as a prerequisite to certification 

and including questions about family caregiving on licensure exams. Developers of

continuing professional education curricula should create and disseminate training 
2022 National Strategy to Support Family Caregivers Page 52

resources about engaging with family caregivers that use inclusive language and 

reflect the diversity and complexity of today’s family caregiving landscape. (Also

supports Outcomes 1.1 and 1.3) Health care organizations and other providers 

can create opportunities for professionals to gain knowledge of family caregivers’ 

lived experiences to understand their emotional journey, and to expand their use of 

compassion, empathy, and validation when interacting with caregivers. Health care,

long-term services and supports, and school systems, in turn, should ensure their 

respective workforces are educated about the experiences and needs of all kinds of 

caregivers by incorporating this content in culturally competent ways into onboarding, 

experiential learning programs, continuing education courses, and other professional 

development opportunities

Respondents to the RFI noted that education of those professionals who engage with 

kinship families and grandfamilies would be especially beneficial (e.g., pediatricians

child welfare workers, mental health professionals, child care workers, and educators)

Typically, when a child participates in educational, health care, and other supportive 

programs, their parent(s) are expected to represent that child to the various systems

As a result, when providers encounter kin and grandparent caregivers, they have few 

established practices on how to engage those caregivers to incorporate them in the 

provider’s care delivery. Formal education on the unique strengths and challenges

faced by kin and grandparent caregivers will facilitate the ability of professionals to 

develop culturally competent and strengths-based care and support plans for the 

children in kin and grandparent-led families

Aligned Actions

Federal agencies have committed to 18 specific actions within the coming years 

in support of Outcome 2.5. See “Actions for Others” for more than 50 additiona

actions that states, communities, and other stakeholders can take to support Goal 2

Indicators of Success: Partnership and Engagement

As the actions under Goal 2 are implemented, family caregivers will experience greater 

inclusion on care teams and in organizational processes as the following social 

changes become increasingly widespread:

■ Health care providers proactively identify if an individual presenting at a medical 

facility has a family caregiver and includes them in the care process

■ Caregiver assessments in medical settings are as commonplace as documenting 

height, weight, and blood pressure

■ Medical records include sections devoted to documenting the names, support, 

abilities, and preferences of caregivers
2022 National Strategy to Support Family Caregivers Page 53

■ Professional messaging throughout health care, child welfare, education, and social 

services systems is inclusive of caregivers

■ Medical and paraprofessionals are trained on culturally competent and linguistically 

appropriate ways of engaging caregivers

■ When grandparent or other kin attend a school event or conference, educators 

quickly recognize if that person is a primary caregiver or a guest and are prepared 

to engage with them

■ Family caregivers have a better understanding of the care planning process and are 

better informed and prepared to assist the individual in need of their care

■ Family caregivers have access to training and support for self-advocacy when 

interacting with professionals involved in the life of the individual for whom they are 

caring

■ Educational terminology such as “parent-teacher conferences” are inclusive of nonparent caregivers

■ Care plans are no longer developed with the assumption that family caregivers will 

perform certain tasks or take on certain roles. Instead, caregivers participate in the

process and—depending on their needs—receive referrals to services and supports 

that help them carry out their part of the plan

■ Systems are held accountable for disparities in access to paid services and 

supports

■ When a caregiver needs assistance, support, or training, professionals have the 

knowledge and resources to make referrals. This integrated network of support

includes medical, legal, social services, and educational professionals

Goal 3: Strengthen services and supports for 

family caregivers

As previously noted, family caregivers are a major provider of long-term services and 

supports for older adults, disabled people of all ages, and children whose parents 

cannot care for them. While some aspects of family caregiving come naturally, many

of the tasks associated with today’s family caregiving require a level of competency 

that people can master only through experience and training. Just as family caregivers

provide support to others, they themselves often need support to allow them to 

continue in their roles
2022 National Strategy to Support Family Caregivers Page 54

To enable caregivers to provide support, now and into the future, the nation will need 

significant investments to ensure consistent access to an array of flexible services 

and supports, tailored to their needs and preferences, including high quality training 

about a wide range of topics; understandable instructions and communications about 

their responsibilities; flexible respite care, counseling, and peer support; and other 

accessible, culturally competent goods, services, and supports. These programs must

be trauma-informed and culturally and linguistically appropriate to the populations 

they serve. Such investments will require action far beyond the present scope of the

Advisory Councils and current federal programs

In fact, the Advisory Councils heard repeated calls “loud and clear” from multiple 

stakeholders across the country and from some members of the Advisory Councils 

themselves for statutory and legislative changes to address the long-term care 

system in this country. Specifically, stakeholders have called for increased support

for home and community-based services in Medicaid (generally and, more recently, 

for programs like Money Follows the Person) and by adding a long-term services 

and supports benefit in the Medicare program for respite, adult day services, and 

home modifications; and increasing funding and flexibilities for programs such as 

ACL’s National Family Caregiver Support Program, Lifespan Respite Program, and 

Alzheimer’s Disease Programs Initiative (which provides community-based support for 

people with ADRD and their family caregivers, as well as programs for professional 

caregivers who support people ADRD), and the VA’s Caregiver Support Program. The

Advisory Councils believe such statutory changes will be increasingly necessary as the 

experience of family caregiving becomes more widely recognized and acknowledged 

as a function that every American will either provide or need. (Also supports

Outcomes 1.1, 1.2, 2.1, and 5.1) 

The Advisory Councils developed ten shared outcomes specifically designed to 

strengthen the available of a range of services and supports. Over time, and in

coordination with the achievement of other Strategy goals, they will prepare the nation 

for expanding assistance to and support of family caregivers

Outcome 3.1: Person- and family-centered, trauma-informed, and 

culturally appropriate caregiver services and supports are accessible for 

all family caregivers.

From our Listening Sessions

“...[For] family caregivers, one of the biggest [needs] is just expanded 

services, more funding for more programming.” 

A priority action identified by the Advisory Councils to prepare service providers for 

future expansions of services in response to rising demand is to invest more resources 
2022 National Strategy to Support Family Caregivers Page 55

into overcoming barriers to access of services. Foremost of these are language and

cultural barriers, suggesting providing translated or culturally adapted resources, 

services, and information to diverse family caregiving communities should be a 

fundamental priority. (Also supports Outcome 5.3) For example, states, philanthropic

organizations, community-based organizations, and faith-based organizations can 

review eligibility criteria for programs that use narrow definitions of “family” to explore 

ways to broaden those definitions to include caregivers who have other relationships 

with their care recipient, such as relatives beyond parents, grandparents, children, 

and spouses as well as domestic partners, siblings and/or other community members

Additionally, these sectors can evaluate existing resources to ensure they are culturally 

competent for their intended audiences

The California Caregiver Resource Centers provide a model for a single point of 

entry for training and support and access to services for family caregivers

Kin and grandparent caregivers need affordable legal and financial information 

along with services from providers trained in trauma-informed care for children and 

topics not typically associated with family caregiving, such as behavioral supports 

for children. They also need practical assistance with navigating school enrollment,

pediatric care, and emergency planning. To address this, community-based

organizations, faith-based organizations, and the organizations that fund them, may 

want to prioritize the development and delivery of services for the populations of kin 

and grandparent caregivers in their communities

Rural and Underserved Populations

Caregivers in rural areas often lack access to needed services and supports. States

can address this challenge by establishing task forces to identify and address 

barriers in underserved and/or hard-to-reach communities. Once barriers to access

are documented and understood, states may want to consider expanding access 

to HCBS through expansions to Medicaid or other state-funded programs serving 

low-income populations. In parallel to these efforts, states, insurance payers, and

health care systems can collaborate to ensure the financial viability of communitybased organizations and faith-based organizations serving historically excluded and 

underserved populations. (See Outcome 3.4 for information on other services that

have the potential to improve health and well-being in underserved communities)

Washington State’s Medicaid Transformation Project is using a Section 1115 

waiver to create and continue to develop projects, activities, and services that 

improve Washington’s health care system, including two caregiver support 

programs. The services within these cost-effective programs have improved the

outcomes for caregivers and the people they support
2022 National Strategy to Support Family Caregivers Page 56

A common theme in the stakeholder input received by the Advisory Councils was 

that a best practice for increasing access to culturally competent services is with 

community ambassador programs. Such programs can provide a conduit of trusted

information to and from ethnically and culturally diverse communities to improve 

accessibility in existing systems. (Also supports Outcome 1.3)

To achieve further alignment, states, in partnership with a range of stakeholders, can 

create mechanisms for collaboration across organizations such as communities of 

practice, to foster a cross-agency, interdisciplinary approach to supporting family 

caregivers. National, state, regional, tribal, and local philanthropic organizations and

research institutions can expand the availability of culturally competent and adaptable 

evidence-based protocols by continuing to invest in translating and adapting existing 

evidence-based protocols and developing new ones. (Also supports Outcome 5.3

Aligned Actions

Federal agencies have committed to 32 specific actions within the coming years 

in support of Outcome 3.1. See “Actions for Others” for more than 50 additiona

actions that states, communities, and other stakeholders can take to support Goal 3

Outcome 3.2: Family caregivers can obtain respite services that meet 

their unique needs.

From our Listening Sessions

“...I think even we’re still struggling when just developing the 

awareness of respite care services and making sure that not only 

providers, but caregivers are aware of it.” 

High-quality respite is one of the most requested needs of caregivers, but gaps in the 

availability and affordability of access are significant. For family caregivers, respite

can mean different things and be received in numerous ways. Input from the Advisory

Council members and stakeholder listening sessions all agreed on one fundamental 

fact about respite: it must be meaningful to the person receiving it. For example, some

family caregivers might find a short time away from the actual caregiving situation to be 

what is needed most. Others might desire a break from other duties like homemaking,

or from other tasks needed by the individuals for whom they are providing care

Additionally, the concept of “respite” or a short break from family caregiving 

responsibilities might not be understood or valued in the same way across all cultures

Understanding these complexities is critical to developing respite services that are 

acceptable to diverse cultural and ethnic groups and fit a broad array of respite needs

For example, when developing respite programs and services for grandparent and 

kinship caregivers, it may be necessary to take a broader view of the types of activities 
2022 National Strategy to Support Family Caregivers Page 57

that equate to respite. Additionally, where permissible under current statutory and

regulatory guidelines, after-school clubs, youth sports, and camps could be marketed 

as respite programs if they are available in areas where kin and grandparent caregivers 

reside. Similarly, respite programs that meet the unique needs of caregiving youth,

caregivers supporting people with complex medical needs, and those with ID/DD must 

become more widespread and easier to access

The VA’s Building Better Caregivers offer a series of self-paced workshops that 

include access to an online “alumnus” community for peer-to-peer support to 

reinforce formal learnings

States, insurance payers, community-based organizations, faith-based organizations, 

health care systems, managed care plans, and employers can collaborate to create 

greater awareness of the need for respite, in all its forms. They should develop respite

opportunities that serve caregivers who would benefit most from this service and 

reflect the respite needs identified in the caregiving assessments mentioned earlier in 

the Strategy. Materials and messaging describing these programs and services shoul

be developed in ways that resonate with the target populations and that align with their 

values and beliefs. Once services are developed, caregivers must be able to easily find

the information they need when they need it. Information about respite services should

be disseminated to caregivers through trusted repositories and programs such as the 

Respite Locator and in the caregiving portal (See Outcome 1.1)

State and local government agencies, insurance payers, managed care plans, 

community-based organizations and faith-based organizations and other providers 

can consider expanding or prioritizing funding for payment that supports respite 

services, including training respite volunteers and ensuring direct care workers 

(DCWs) are trained and available to provide high-quality and flexible respite care. At

present there are significant shortfalls in the number of DCWs available to provide 

respite care. Health care plans can prioritize respite care under the supplemental

services they provide and advocate for use of those services by family caregivers. In

addition, community-based organizations can explore establishing adult day services 

as a respite care option and promoting social respite models, like faith-based dropin programs, which are more affordable and flexible than traditional adult day care 

or adult day health care. Researchers can also evaluate barriers, such as operating

hours, compliance with accessibility requirements under multiple federal disability civil 

rights laws, and legacy licensing requirements to look for ways to expand the number 

of community settings where respite can be provided (Also supports Outcome 5.3)

Take Another Break SC! offers a case study on how South Carolina optimized the 

delivery of federal-funded lifespan respite services across the state
2022 National Strategy to Support Family Caregivers Page 58

The 2019 Generations United report, A Place to Call Home, includes case study 

descriptions of caregiver-friendly housing models, such as Plaza West, an 

intergenerational housing model in Washington, D.C. Plaza West has 50 unit

designated for kin and grandparent caregiver-led households. Residents have

access to on-site programs and referrals related to job training and employment, 

parenting, academic support, food assistance, furniture, clothing, recreation, 

physical and mental wellness, and legal aid

Aligned Actions

Federal agencies have committed to 11 specific actions within the coming years 

in support of Outcome 3.2. See “Actions for Others” for more than 50 additiona

actions that states, communities, and other stakeholders can take to support Goal 3

Outcome 3.3: A range of evidence-based, education, counseling, and 

peer support services are available to family caregivers.

Numerous studies have shown that caregivers can experience elevated levels of stress 

and social isolation. Just as training helps caregivers feel more confident in their tasks,

counseling and peer support from people who can empathize with their situation has 

been shown to improve outcomes for caregivers as well

At present, education, counseling, and peer support designed specifically for unpaid 

caregivers are often difficult to find and access. For example, grandparents and other

kin caring for children often are not offered access to the training and supports given 

to unrelated foster parents. One of the reasons for these gaps in access to trainings

because educational needs and preferences can differ significantly by population

Curriculum designers can explore opportunities to develop “bite-sized” trainings that 

allow a family caregiver to learn a specific skill rather than having to commit to a full 

curriculum. The Advisory Councils also noted that training programs that are flexible,

available in-person or remote, feature the lived experience of other caregivers, and 

offer a choice of formats and languages, should be prioritized for development. These

training modules should ideally be made available on the family caregiving website 

described under Outcome 1.1 so that all caregivers and professionals who interact 

with caregivers have access to them. (Also supports Outcome 3.6)

These trainings should also be culturally competent to the populations they serve

For example, educational materials for kin and grandparent caregivers should use 

terminology specific to their needs rather than expecting viewers to translate. States,

insurance payers, community-based organizations, faith-based organizations, 

health care systems are encouraged to look to models that combine education with 

counseling and/or peer support when designing and commissioning programs. Where

needed, trainings also should be trauma informed
2022 National Strategy to Support Family Caregivers Page 59

Aligned Actions

Federal agencies have committed to 12 specific actions within the coming years 

in support of Outcome 3.3. See “Actions for Others” for more than 50 additiona

actions that states, communities, and other stakeholders can take to support Goal 3

Outcome 3.4: Family caregivers and families have safe places to live, 

nutritious food, and adequate transportation.

From our Listening Sessions

“I’ve grown tired of trying to reach out because they always want me to come to 

them! I live in a campground in a very rural area! I can[’t] make it anywhere!!! I’m 

stuck in bad situation that brings me down more every day I wake up!” 

All people should have access to adequate and safe housing, proper nutrition, and 

access to medical appointments and other transportation-related necessities. Without

access to these fundamental requirements of daily living, family caregivers will face 

daily struggles. As a public health issue, effective family caregiver support efforts must

include a focus on the five domains of the social determinants of health: 

■ Economic stability and security (including freedom from workplace discrimination)

■ Education access and quality

■ Health care access and quality

■ Neighborhood and built environment

■ Social and community context

To increase the effectiveness of high-quality, setting-appropriate, caregiver-defined 

services, numerous stakeholders can explore innovative ways to implement programs 

that support safe, accessible, and intergenerational housing, nutrition, transportation, 

elder wellness, and quality of life. For example, Asset Based Community Development is a

growing movement that assesses the resources, skills, and experience available in a local 

community and uses them as the foundation of sustainable community development

Addressing the social determinants of health within the broader scheme of family 

caregiving is key to addressing longstanding health inequities among caregivers and 

their families in a holistic way. Policymakers can review the recommendations in Family

Caregiver Needs Requiring Legislative and Other Policy Changes, which includes a list 

of specific legislative changes, aligned with the Strategy, that have the most potential 

to benefit caregivers

To support this vision, states; insurance payers/health plans; community-based 

organizations; faith-based organizations; health care systems; and national, state, 
2022 National Strategy to Support Family Caregivers Page 60

regional, and local philanthropic organizations can explore ways to increase the 

availability of wraparound services locally. For example, low-interest loans an

startup grants within communities could encourage the development of programs like 

culturally competent adult day services. Service coordinators in low-income and public

housing can be trained to understand and recognize the needs of family caregivers 

living in those communities. Communities of faith can explore opportunities to develop

new ministries around key social determinants issues. State and local philanthropies

can identify opportunities to fund specific initiatives designed to address these issues 

as well. (Also supports Outcomes 3.2 and 3.3

Aligned Actions

Federal agencies have committed to 10 specific actions within the coming years 

in support of Outcome 3.4. See “Actions for Others” for more than 50 additiona

actions that states, communities, and other stakeholders can take to support Goal 3

Outcome 3.5: Family caregivers have innovative tools and technology to 

assist them in their roles.

From our Listening Sessions

“Develop software that functions just like Uber in tracking and vetting ... the direct 

care service worker. Clients can rate the caregiver providing a greater level of 

accountability and performance. This also eliminates the need for care agencies as 

the direct care worker can be paid directly through the app as Uber drivers are.” 

The pandemic highlighted the potential of technology to assist both caregivers and 

people receiving support. The flexibilities around telehealth, online training, counseling,

and support groups that took place during the public health emergency provided 

opportunities to explore how technology can make family caregiving easier. States,

health care systems, and insurance payers can leverage the lessons learned from the 

pandemic to make some of these changes permanent as part of their other efforts to 

support caregivers. They also can take steps to ensure that caregivers receive training

that enables them to use these technologies successfully

The Closing the Digital Divide Task Force works to increase fixed broadband 

families in California. It offers a model for how states and the private sector can

collaborate on equity-focused technological goals that would be difficult for a 

single entity to achieve alone

Those flexibilities only work, however, if caregivers have access to reliable, highspeed internet access, along with equipment and training to use it. The Federal

Communications Commission’s task force to improve health outcomes by providing 

land-based internet access to all communities is an important step in increasing 
2022 National Strategy to Support Family Caregivers Page 61

caregivers’ access to technological tools. In addition, the Affordable Connectivity

Program (ACP) provides eligible households with a discount on broadband service 

and connected devices. States and local governments can support federal efforts to

expand broadband infrastructure in their communities by supporting the reporting 

of performance metrics. Communities can establish a local task force to uncover

caregivers’ unmet technological needs as part of state planning. Internet providers

and developers of infrastructure should prioritize supporting family caregivers in 

underserved communities and expand access to technologies to support them

The recognition of supporting family caregivers and its importance is derived from a 

caregiver-aware business culture. (Also supports Outcome 1.1

Community-based organizations, faith-based organizations, health care systems, 

insurance payers, and the IT industry can also actively seek out ways to embrace, 

promote, and fund caregiver access to future-focused tools and assistive technology, 

such as smart homes, wearable blood pressure and heart monitoring devices, 

automated pill dispensers, e-learning modules, task management apps, speech 

amplification and adaptation systems, and geo-tracking. National, state, regional, and

local philanthropic organizations and research institutions can support these efforts 

by increasing research into evidence-based assistive technology models that benefit 

caregivers now and as new technologies emerge. (Also supports Outcome 5.3)

Aligned Actions

Federal agencies have committed to 9 specific actions within the coming years 

in support of Outcome 3.5. See “Actions for Others” for more than 50 additiona

actions that states, communities, and other stakeholders can take to support Goal 3

Outcome 3.6: Volunteers of all ages and abilities are trained, vetted, and 

ready to assist family caregivers.

From our Listening Sessions

“Is it possible to create a national support hotline perhaps staffed by 

volunteers who have been in a caring situation and/or experienced social 

workers who have an interest in kinship caregiving?” 

Many family caregivers have great need for support, which is often unrecognized, 

unaffordable, and/or unavailable. Volunteers have long been a mainstay of the

systems that provide respite, meal delivery, transportation, and social interaction 

and are relatively cost effective for both programs and families. Expanding

volunteer opportunities can both increase the availability of direct supports for 

family caregivers and create a path for expanding the direct care workforce. State

agencies, community-based organizations, and faith-based organizations can 

explore ways to support the coordination and training of volunteers. Community
2022 National Strategy to Support Family Caregivers Page 62

organizations can also develop and disseminate outreach materials to educate 

the public and professionals about volunteerism, mentoring, and peer-to-peer 

support programs as a both a way of assisting family caregivers and as a means of 

developing valuable experience that can be applied professionally. To further suppor

this, accrediting bodies and academic institutions can consider expanding programs 

that provide experiential credit for volunteer activities, offer intergenerational 

volunteer opportunities, or provide tuition credit or leverage community service hour 

requirements in educational institutions

Community Care Corps is a national program that fosters innovative models 

in which local volunteers assist with non-medical tasks, provide companionship, 

and relieve over-burdened family caregivers. The program benefits family

caregivers, older adults, and persons with disabilities

Aligned Actions

Federal agencies have committed to 2 specific actions within the coming years 

in support of Outcome 3.6. See “Actions for Others” for more than 50 additiona

actions that states, communities, and other stakeholders can take to support Goal 3

Outcome 3.7: Family caregivers’ and care recipients’ needs are a key 

consideration in emergency response efforts.

From our Listening Sessions

“Make sure police emergency call responders are trained enough to recognize 

dementia- related emergencies.” 

Family caregivers, along with the people they support, are at greater risk during 

emergencies such as weather events, pandemics, natural and human-caused 

disasters, and economic instability. Yet currently few formal systems for integrating the

needs of caregivers and care recipients into emergency preparedness exist

The HHS Office of the Assistant Secretary for Preparedness and Response 

(ASPR) offers a free web-based training to improve public health and emergency 

medical responders’ capability to address the access and functional needs of 

community-dwelling older adults in disasters

This course provides information, resources, tools, and strategies to help assess 

and address the needs of older adults in common disaster situations, including 

natural disasters and infectious disease outbreaks

States, communities, community-based organizations, faith-based organizations, 

and employers can work to address this issue by including the perspectives of family 
2022 National Strategy to Support Family Caregivers Page 63

caregivers in emergency exercise and shelter-in-place planning. Family caregivers’

support during a crisis should include linkages to community-based resources, 

culturally competent communications, advance care planning, medication support, 

help with care coordination, access to necessary Durable Medical Equipment (DME) 

and Assistive Technology (AT), and financial assistance. (Also supports Outcomes

1.3, 3.1, and 4.1) It also means embedding family caregiver identification tools into 

protocols used by all emergency responders. (Also supports Outcome 2.1)

Proactively building systems to support caregivers during times of crisis in combination 

with advance planning on the part of caregivers, may help lessen the impact of 

emergencies on family caregivers and the people they support. Municipalities, public

health departments, homeowners’ associations, co-op boards, and faith-based 

organizations can do this by identifying caregivers in the community who may need 

additional help during emergencies and providing advance care planning workshops to 

them. One way to identify family caregivers is through a community census to identify

and document the practical needs of local family caregiving populations. During an

emergency, these needs can include powers of attorney (or other legal arrangements), 

access to durable medical equipment, assistive technology, refrigeration, and 

generators; mobility assistance; transportation; financial support; food; accessible 

emergency shelters; and information on emergency procedures that is understandable, 

culturally competent, and accessible to people with disabilities. The information

gathered in a community census could also be used to inform and adapt local 

caregiver outreach efforts described in Goal 1

To further support caregivers in emergencies, health care professionals and first 

responders should receive training in caregiver identification with an emphasis on 

emergency situations both in the community and in clinical settings. (Also supports

Outcome 2.1) States, communities, and national, state, regional, and local 

philanthropic organizations can specifically fund services that support unanticipated 

caregiver needs during emergencies. (Also supports Outcome 3.1

Aligned Actions

Federal agencies have committed to 10 specific actions within the coming years 

in support of Outcome 3.7. See “Actions for Others” for more than 50 additiona

actions that states, communities, and other stakeholders can take to support Goal 3

Outcome 3.8: Family caregivers have the skills and tools necessary to 

prepare for the future needs of the person they support.

From our Listening Sessions

“What happens to my grandchildren if something happens to me?” 
2022 National Strategy to Support Family Caregivers Page 64

Planning for when they will no longer be able to support for their loved one is 

something many caregivers find difficult. “Future care planning” activities are important,

however, because they proactively ensure prudent resource management and sound 

decision making in the event of a crisis. Advance planning in general also ensures

that family caregivers have the skills, resources, and legal authority they need as their 

responsibilities evolve. (Also supports Outcome 3.7) States, communities, health

care systems, insurance payers, community-based organizations, and faith-based 

organizations can proactively develop and disseminate tools and resources that can 

make this difficult task easier. These tools must be trauma-informed and adaptable

to the cultural and demographic needs of the target population. Employers can

support these efforts by incorporating future planning in employee benefits options

Professional and HR associations may want to include the topic of future planning in 

caregiving-related outreach and education tools they develop

To raise awareness of the importance of future care planning, community-based 

organizations, faith-based organizations, libraries, and social services providers can 

make available to the public financial planning tools for family caregivers developed by 

the Consumer Financial Protection Bureau. (Also supports Outcome 4.1

Aligned Actions

Federal agencies have committed to 3 specific actions within the coming years 

in support of Outcome 3.8. See “Actions for Others” for more than 50 additiona

actions that states, communities, and other stakeholders can take to support Goal 3

Outcome 3.9: An agile, flexible, and well-trained direct care workforce is 

available to partner with and support family caregivers. 

The ability of family caregivers to support older adults, people with disabilities, and 

children who cannot remain with their parents is often directly affected by the availability 

of services and supports provided by direct care workers (DCWs). This workforce

includes personal care attendants, home health aides, direct support professionals, 

residential workers, and others. These essential workers are an important source of

respite care for family caregivers, as well as formal supports that complement care 

provided by family caregivers. Multiple respondents to the RFI noted that because it

is difficult to find, hire, and retain DCWs, many family caregivers experience significant 

periods of time without a break from family caregiving responsibilities

This is a long-standing and widespread issue that was significantly worsened by the 

pandemic, as discussed in the RAISE Advisory Council’s initial report to Congress

Demand for DCW services currently exceeds the number of available workers. DCWs

are one of the highest in-demand employment categories of professionals in the U.

The critically needed expansion of this workforce will not happen without significant 

changes in how they are recruited, trained, paid, and supported
2022 National Strategy to Support Family Caregivers Page 65

In 2021 the Center for Health Care Strategies released Strengthening the Direct 

Care Workforce: Scan of State Strategies. The scan provides examples of state

strategies aimed at strengthening the direct care workforce. Key resources

include examples of legislative language supporting DCWs and direct care 

workforce training models, including, in some cases, information on how states 

fund training

A recurring theme of stakeholder input was that the DCW workforce is critical to 

the success of family caregivers. The Advisory Councils call for the convening of

an interagency task force to work on a direct care workforce development plan, 

collaborating with states, possibly incorporating other issues that impact the workforce 

such as immigration reform, and student federal loan forgiveness programs. States,

state agencies, and managed care plans may want to consider exploring ways to 

support these efforts by increasing wages and benefits and ensuring those increases 

are received by DCWs, themselves. Ideally, this should happen in tandem with federal

increases in wages. (See Family Caregiver Needs Requiring Legislative and Other

Policy Changes)

Stakeholders also recommended that multiple sectors—communities, health care 

systems, payers, child welfare systems, community-based organizations, and faithbased organizations—collaborate to build a robust labor force of DCWs and support 

alignment with the Strategy through:

■ Creating consistent training requirements across states, via competency-based 

training with a shared set of principles for all direct care workers, including training 

on how to engage with family caregivers. (Also supports Outcome 2.5

■ Incorporating into existing training supplemental modules that enable specialization 

and career advancement opportunities (e.g., dementia care). (Also suppor

Outcome 2.5)

■ Increasing the availability of programs that pay family caregivers for providing direct 

care services. (Also supports Outcome 4.1)

■ Launching outreach campaigns that promote the social and economic value of 

direct care work. (Also supports Outcome 1.1

■ Convening interagency task forces to standardize job titles and responsibilities 

within and across states and sectors to enable better understanding of workers and 

enhance job portability. (Also supports Outcome 5.1)

To help drive the success of these activities, national, state, regional and local 

philanthropic organizations and research institutions are encouraged to fund research 
2022 National Strategy to Support Family Caregivers Page 66

and demonstration projects to advance understanding of the field and explore effective 

mechanisms for improving the direct care workforce. These should include increasing

rates and payment structures to recruit and retain qualified DCW. (Also supports

Outcome 5.2)

For further information on why it is critical that the nation support and sustain a welltrained and adequately compensated direct care workforce, see:

■ First Principles: Cross-Cutting Considerations for Family Caregiver Support (a 

component of the Strategy), which discusses the direct care workforce, in addition 

to the impact of trauma, person-centered planning, and diversity, equity, and 

inclusion

■ Community Supports in Crisis: No Staff, No Services explores how progress 

toward community living that has been made in services for people with ID/DD over 

decades is now in jeopardy

■ State Strategies for Sector Growth and Retention of the Direct Care Health 

Workforce provides a series of multi-sector state and employer strategies to 

address recruitment and health sector retention of direct care workers while 

balancing workforce needs, job quality and wages

■ Growing a Strong Direct Care Workforce: A Recruitment and Retention Guide for 

Employers (PHI) provides a range of strategies to help providers recruit and retain 

direct care workers and improve the delivery of care

■ 8 Essential Publications on the Direct Care Workforce (PHI) provides links to eight 

essential publications on the direct care worker crisis from PHI

Aligned Actions

Federal agencies have committed to 11 specific actions within the coming years 

in support of Outcome 3.9. See “Actions for Others” for more than 50 additiona

actions that states, communities, and other stakeholders can take to support Goal 3

Outcome 3.10: Kinship families and grandfamilies are recognized, 

supported, and valued within the child welfare system.

From the RFI about kinship families and grandfamilies

“We experience so much from this never-ending nightmare of custody. The 

sleepless nights because of what the system has done to us. The days of not 

eating because we are to upset with what the system that is supposed to be 

protecting these children has done to us. This has caused so much damage...” 
2022 National Strategy to Support Family Caregivers Page 67

Two themes emerged from the RFI responses and SGRG Advisory Council discussions:

1. Kin and grandparent caregivers are often excluded from existing systems t

financially assist families, and

2. They struggle to navigate variable and disjointed federal, state, and local system

that, in the words on one respondent, “don’t talk to one another.” Each state has

differing laws, procedures, and definitions that shape the experience of kin and 

grandparent caregivers, and those experiences are often not synchronized with 

federal programs

The result of these intertwined issues is that some legal relationships, health and 

academic records, and case files are often not portable—even as children move 

to new homes and schools. This creates a cascade of stress, legal ambiguity, and

financial hardship for more than 2.7 million kin and grandparent caregivers, many of

whom are older adults and/or people with disabilities

3

Meaningful change in the child welfare system will itself require a dedicated strategy 

for aligning legal systems across states and with the nation. It will also require

significant federal intervention to redefine inclusion criteria for programs (e.g., broade

the definition of family) that have traditionally not included kin and grandparent 

caregivers in informal relationships and to change the public narrative about kin and 

grandparent caregivers raising children outside of the foster care system. They should

be accorded the same respect and status as licensed foster parents. And they should

enjoy the same benefits and rights, including the same levels of financial and logistical 

assistance

In the short-term, there are actions states and communities can take now to explore 

and implement systems changes to better assist kin and grandparent caregivers and 

the children. States and/or communities can start by identifying and documenting

existing inequities faced by kin and grandparent caregivers within specific state and 

local communities. Topics to cover include access to health care, access to financial

resources, and data sharing. (Also supports Outcomes 1.1 and 5.1)

Family caregiving stakeholders can take steps to ensure that all websites, program 

descriptions, reports, media, and other materials use language and images that are 

inclusive of kin and grandparent caregiving situations and needs. (Also supports

Outcome 1.1) States, health systems, communities, community-based organizations, 

faith-based organizations, school districts, and other stakeholders can prioritize the 

hiring of people with lived experience so that the child welfare system and the systems 

with which it interacts are infused with the real-world knowledge, experience, and 

voices of kin and grandparent caregivers. (Also supports Outcome 3.1
2022 National Strategy to Support Family Caregivers Page 68

The Colorado Child Welfare Family Advisory Council guides policy makers in the 

state on the design and delivery of high-quality child welfare services to youth and 

families. Members can be any of the following: biological parents, “grandfamilies”

(non-certified grandparent), kinship family member providing non-certified out of 

home care, certified kinship foster parent, youth formerly in care and now out of 

care, foster parent (non-kinship), foster/adoptive parent (non-kinship), community 

partner providing services to youth in foster care

A foundational belief of the SGRG Advisory Council is that children should grow up in 

the care of their own families. When it comes to keeping families together, there are

several additional opportunities states and communities can leverage under existing 

law. For example, states can establish agreements, as allowable under Title IV-B of the

Social Security Act, with tribes to provide culturally competent services to American 

Indian and Alaska Native Families. They can also look for ways to optimize use of Title

IV-B funding (including Promoting Safe and Stable Families funds) to provide kinshipspecific support services. State and legal advocacy groups may find it beneficial to

develop guidance documents that explain how Title IV-B can be used to support kin 

and grandparent caregivers. (Also supports Outcome 3.1) They can also adopt the

National Model Family Foster Care Standards (and ideally the more detailed National 

Association for Regulatory Administration Family Foster Care Licensing Standards)

to address barriers to licensing kin and foster parents. (Also supports Outcome

4.1) Those states that use Temporary Assistance for Needy Families (TANF) for child 

support issues, may wish to broaden the term “family” so that it includes all kin and 

grandparent caregivers and form relationships with neighboring states so that program 

participation is transferrable when a person moves across state lines

To ensure the needs of kin and grandparent caregivers are reflected in all future 

planning, states can establish interagency child welfare task forces that include 

caregivers, children, child welfare professionals, attorneys, social services providers, 

medical professionals, and mental health experts to guide and inform the work of the 

child welfare system. (Also supports Outcomes 3.1 and 4.1)

States can use Title IV-B, subpart 2 funding to develop, enhance and evaluate kinship 

navigator programs that serve kinship families both inside and outside the system

They can also explore participating in Title IV-E Guardianship Assistance program

to facilitate child placements with relatives as a permanency option. (Also supports

Outcome 4.1)

As previously noted, quality longitudinal data on kin and grandparent caregivers 

and the children they support is lacking. All stakeholders can collaborate to redress

this imbalance through engaging in (or providing funding for) robust data collection 

efforts that are aligned with the goals of the Strategy. (Also supports Outcome

5.1) Such efforts should include data about children in the child welfare system and 
2022 National Strategy to Support Family Caregivers Page 69

those children who have passed through the system and those children who come 

to attention of the child welfare system but never enter the system. (Also supports

Outcome 5.1)

Aligned Actions 

Federal agencies have committed to 2 specific actions within the coming years in 

support of Outcome 3.10. See “Actions for Others” for more than 50 additiona

actions that states, communities, and other stakeholders can take to support Goal 3

Indicators of Success: Services and Supports

As the actions under Goal 3 are implemented and the outcomes realized, family, kin, 

and grandparent caregivers will feel more confident in their ability to provide care 

because:

■ Person- and family-centered, trauma-informed support are the norm

■ Information about services and supports for individuals needing care and to support 

those providing that care is available on a family caregiving information platform so 

when a caregiver faces a new challenge they immediately know where to turn

■ When family caregivers need a short break, they have a robust array of trained 

respite options available that are local, convenient, and affordable

■ Caregivers can tap into a community of fellow family caregivers who can empathize 

with their experiences and share insights from their own experiences

■ Technologies and tools to assist family caregivers are designed with caregiver input 

and tested by caregivers

■ Communities have robust pools of vetted and trained volunteers to assist family 

caregivers

■ Caregivers have a plan in place for what to do if they can no longer provide care

■ In emergency situations, first responders are prepared to identify and support family 

caregivers

■ Every family caregiver has an emergency kit that includes legal documents, if 

needed

■ Direct care workers have career paths, flexibilities, and compensation packages 

that make the field attractive to young people
2022 National Strategy to Support Family Caregivers Page 70

■ Direct care workers will have the training they need to deliver high-quality care

■ Clear and consistent processes will exist for screening and hiring direct care 

workers

■ The default assumption, if a child is removed from their home, is to place them with 

kin first. (As a result of this, caseworkers would need special permission to place a

child with non-relatives.

■ Child welfare agencies hire lived experience experts at both the leadership and 

caseworker-level, and that lived expertise informs all levels of decision making

■ The needs and perspective of informal kinship families—those who are raising 

children outside of the foster care system--are recognized by child welfare workers 

as equally important as foster families

Goal 4: Ensure financial and workplace security for 

family caregivers

Personal finances and future financial security are a significant source of stress for 

family caregivers. Family caregivers face multiple financial threats associated with their

family caregiving responsibilities. They experience significant out-of-pocket expense

and depletion of leave time as the majority of workplace policies do not allow sufficient 

paid time off or workplace flexibility to accommodate unexpected family caregiving 

duties. In addition, many are forced to leave the workforce in order to dedicate

sufficient hours of care to a family member which results in loss of income. Many

are concerned about the ability to accommodate 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 financial security, now and into the 

future

Out-of-pocket costs are the reality for most family caregivers, but for some populations 

the challenges are even more significant. While White families surveyed reported

spending an average of 14 percent of their income on family caregiving, the Hispanic 

and Latinos who participated in the study spent 44 percent of their income on family 

caregiving and the African American family caregivers spent 34 percent of their income 

on caregiving (AARP and National Alliance for Caregiving, 2020)

The RAISE Act State Policy Roadmap for Family Caregivers (Section 4: Financial 

and Workplace Security), developed by NASHP, provides examples of successful 

state strategies for improving financial and workplace security for employed 

caregivers
2022 National Strategy to Support Family Caregivers Page 71

Some programs do offer support that can help defray costs associated with home 

modifications, transportation, and legal fees, but those resources are limited and 

unevenly distributed across the nation. Financial assistance programs such as TANF

are available to some kin and grandparent caregivers, but the amounts are often not 

enough to cover basic needs. Moreover, TANF is by definition a temporary benefi

Foster care maintenance payments, which are significantly higher than TANF, are not 

made available to most grandparent or kin caregivers. Altogether, there are many

opportunities to ensure that family caregivers can provide care without putting their 

financial security—and that of their family—at risk

4

Outcome 4.1: Family caregivers can provide care without negative 

impacts to their near- and long-term financial health.

From our Listening Sessions

“When it gets to the point of [FMLA] eligibility requirements, [I suggest] it not 

be restricted to biological or legal family members...the older adults could 

designate who is eligible to receive these supports from services apart from kin.” 

Among input received by the Advisory Councils, the strongest recurrent theme 

focused on the need for the federal government to take the lead on several priority 

actions that, if implemented, have the potential to collectively change the financial 

landscape for family caregivers in this country. Participants in the key informan

and family caregiver listening sessions repeatedly called for expansion of leave 

programs at the federal level and tax credits for family caregivers. These topics were

also discussed extensively by the Advisory Councils and identified as a real need in 

relation to many aspects of family caregiving (out-of-packet costs, paying for college, 

housing, etc.) As a result, the Advisory Councils sees the current moment as a call to

action for advocacy efforts to: 

■ Establish a national program of paid family leave for workers

■ Extend family leave programs so that they are available to all workers across the 

country

■ Provide refundable federal tax credits for family caregivers

Those changes are outlined in Table 1, Legislative and Other Policy Changes to 

Support Family Caregivers

Leave Programs, Discrimination Protections, and Tax Credits

Even in the absence of Congressional action, other sectors can still play a role in 

easing the financial shocks that can come with caregiving. If not already doing so,
2022 National Strategy to Support Family Caregivers Page 72

states and health plans may wish to explore opportunities to provide payment to family 

caregivers to the greatest extent allowed. (Also supports Outcome 4.1

5

State lawmakers can explore opportunities to launch leave programs for family 

caregivers. Such programs should include paid sick leave and paid family leave. State

also can take action to broaden eligibility for leave and other related employment 

programs by using the broadest possible definition of family. Such action would help

marginalized groups such as grandparent and kin caregivers, domestic partners, and 

non-relative caregivers benefit from these programs

State lawmakers can also take concrete action to protect family caregivers from 

employment discrimination through amending labor laws. As major employers

themselves, states can lead by example by creating benefits packages for state 

workers that are caregiver-friendly

States that are not currently offering tax credits to family caregivers may want to 

explore opportunities to do so. As of 2022, nine states allow family caregivers to claim

some caregiving-related expenses as refundable tax credits. For further discussion on

states that offer tax credits for family caregivers, see RAISE Act State Policy Roadmap 

for Family Caregivers: Financial and Workplace Security for Family Caregivers

Public Education

A key theme of the RFI responses was that even when programs are available, family 

caregivers often struggle to learn about them. Planning for public education campaigns

and other outreach about tax credits and employment programs should be included in 

the development of new programs. Such programs should then be promoted on the

caregiving platform described under Outcome 1.1

As state laws and benefits change over time, outreach campaigns should be 

developed to ensure that employers and employed family caregivers have access to 

up-to-date information about financial programs that could assist them. All sectors

will need to contribute to ensuring that traditionally unserved and underserved 

populations of family caregivers are aware of and can benefit from these changes. If

Congress expands programs for family caregivers, all sectors should commit resources 

to expand access for historically excluded populations of family caregivers. (Also

Supports Outcomes 1.1 and 1.3.

Aligned Actions

Federal agencies have committed to 7 specific actions within the coming years 

in support of Outcome 4.1. See “Actions for Others” for more than 50 additiona

actions that states, communities, and other stakeholders can take to support Goal 4
2022 National Strategy to Support Family Caregivers Page 73

Outcome 4.2: Family caregivers have access to employee-centered 

flexible workplace policies and practices that support work/life balance 

and professional performance when personal circumstances change. 

From our Listening Sessions

“If folks are afraid to raise their hand and call themselves a caregiver or to utilize 

a benefit for a caregiver because they’re afraid they’ll be fired, it’s not about 

awareness alone. It’s about infrastructure of support that enable that recognition.” 

Nearly two thirds of family caregivers who work full time say the stress of juggling work 

and caregiving is either the first or second biggest challenge they face. A study by the

U.S. Government Accountability Office (GAO), Retirement Security: Some Parenta

and Spousal Caregivers Face Financial Risks, estimated that 68 percent of working 

caregivers who support either a spouse or a parent had to adjust their schedules, a 

decision that can affect career progression and financial security across decades, 

especially for women

Legislative changes at the federal and state levels to leave programs and tax incentives 

are two priority ways to improve work-life balance for family caregivers. There is

also much that employers can do to make it easier for family caregivers to maintain 

employment. This also benefits employers—investing in family caregiver support can

pay off for employers both in terms of attracting talent and increasing retention

Research and Employment Learning Collaboratives

Currently, very little high-quality research has been published on best practices for 

supporting family caregivers in the workplace. There is a real need for partnerships

between states, employers, and researchers to create a robust infrastructure 

for sharing resources that support family caregivers, such as through learning 

collaboratives that can provide evidence to guide policy. Labor analysts and

economists can support these efforts through research into the return on investment 

for supporting family caregivers. Stakeholders can help promulgate the findings of this

research and spur further investigations. (Also supports Outcomes 1.1 and 5.1

Caregiver-Friendly Work Culture

Employers can foster a culture that recognizes family caregiving and adopt policies 

and programs that make it easier for family caregivers to juggle caregiving and 

work. Examples include expanding the definition of family for determining inclusion

in employee benefits such as leave programs, health plans, and other programs6; 

adding flexible leave policies; allowing family caregivers to use flexible work hours, 

compressed work weeks, and telework; and structuring job descriptions around tasks 

that can be completed remotely, at flexible times of day, or by others. Employers may
2022 National Strategy to Support Family Caregivers Page 74

also wish to broaden diversity equity and inclusion efforts to include family caregivers, 

especially those with intersectional identities

Leave donation programs are an example of how a program can support family 

caregivers and raise awareness among non-caregivers of opportunities to support 

them. Promoting such programs in the workplace drives awareness among employees

of the needs of family caregivers and helps create an organizational culture where 

they feel supported and welcome because caregiving is normalized. Researchers can

support this effort by identifying and sharing best practices and research findings for 

employers on supporting family caregivers in the workplace. (Also supports Outcomes

1.1 and 3.6)

Employers can also consider adopting other caregiver-friendly workplace policies, such 

as joining an employer certification program for identifying and credentialing “caregiver 

friendly” workplaces, hosting family caregiver events and observances, featuring a 

diverse range of family caregivers in employee handbooks and trainings, and providing 

easy to understand educational materials about Social Security, health insurance, and 

Medicare deductions, as well as eligibility for Medicaid and Children’s Health Insurance 

Program (CHIP)

To increase efficiency in these efforts, employers may wish to create communities of 

practice with state agencies modeled on the Massachusetts Caregiving Initiative (See 

box). Such an initiative could promote caregiver-friendly workplaces in the state (or

industry) and promulgate promising practices associated with being a family caregiverfriendly workplace. (Also supports Outcomes 1.1, 5.3

Benefits That Attract and Retain Family Caregivers

Employers can also consider family caregiver issues and needs when designing 

benefits packages. Examples include providing advanced planning support for family

caregivers or prioritizing Employee Assistance Programs (EAP) that include support 

to family caregivers in their roster of available services. To ensure that workers have

current information on local services, community-based organizations, faith-based 

organizations, and other community organizations should consider attending employee 

benefits fairs and other events to disseminate information about existing services and 

help increase family caregiver identification. (Also supports Outcome 1.2)

The Massachusetts Caregiving Initiative released the Massachusetts Employer 

Toolkit to Support Working Caregivers. The toolkit includes a business case for

supporting caregivers, employee questionnaires, best practices, a case study, 

and descriptions of state-based resources to assist caregivers
2022 National Strategy to Support Family Caregivers Page 75

Educate Managers on Supervising Family Caregivers

New managers and supervisors should receive training on the needs of family 

caregivers in the workplace. Such trainings should encompass the full range of family

caregivers in the workplace from caregiving youth with part-time jobs to full-time 

professionals juggling career and caregiving—and everything in between. Human

resources organizations and curriculum developers should develop management 

trainings on the issues faced by family caregivers, including caregiving youth, when 

they are caring for someone with a chronic condition or who is at the end of life

Authors and publishers of business management books and periodicals should 

explore topics and themes about “caregiving in the workplace.” When firms update

management trainings, it is important to include language and visuals that reflect the 

diversity of caregiving to raise awareness. (Also supports Outcome 1.1

Aligned Actions

Federal agencies have committed to 7 specific actions within the coming years 

in support of Outcome 4.2. See “Actions for Others” for more than 50 additiona

actions that states, communities, and other stakeholders can take to support Goal 4

Outcome 4.3: Family caregivers have access to and use of financial 

education and advance planning tools. 

From our Listening Sessions

“A lot of the stress of caregiving is finances...so understanding and having 

tools to help with saving earlier, understanding what those needs are and 

options for long term care insurance...I think is really critical.” 

Caregivers often need assistance with long- and short-term financial planning. That

assistance must go beyond bookkeeping basics and recognize the fact that family 

caregivers need help planning. The financial requirements of their role often exceed

their available resources, and many family caregivers put their careers on hold or 

lose income. In addition, the available systems of support, such as TANF and other

safety net programs, are often difficult to navigate and/or access. This is even more

critical for specific populations of family caregivers, such as those in underserved 

communities, those with more intense caregiving responsibilities, parents of children 

with complex health care needs, and kin and grandparent caregivers

Concerns about financial security were a recurring theme of the RFI responses and 

among the participants in the focus groups. Of particular concern to many family

caregivers is how care recipients will be supported in the event the family caregiver is 

no longer available to provide care. Many kin and grandparent caregivers also have

continual concerns about how to meet the costs of health care, health supplies/
2022 National Strategy to Support Family Caregivers Page 76

equipment, school supplies, housing, and other needs for the individuals receiving their 

care. As a result of these complex and interdependent challenges, family caregivers

need a range of information and resources to support sound financial decisions 

and future planning for themselves and the individuals in their care. (Also supports

Outcome 3.1)

Increase Access to Planning Services

Advance planning and decision-making supports are crucial legal and financial tools 

for family caregivers. Without these supports, family caregivers and the individuals

receiving their assistance are at risk if they are no longer able to provide care. At

particular risk are children who are in the care of kin and grandparent caregivers 

without a clear legal arrangement such as custody or guardianship

Work/Life Resource Navigators are a phone/text/email-based benefit that an 

increasing number of employers are now offering. The trained coaches focus on

topics like caregiving, paying bills, budget optimization, trauma-informed care, 

and understanding assistance programs and options

The child welfare system, legal aid programs, and community-based, or faith-based 

organizations can work to address these issues by providing greater access to pro 

bono and low-cost services and supports that focus specifically on developing legal 

and financial arrangements for people who are supported by caregivers. (Also supports

Outcomes 3.1 and 3.6)

Employers can ask their Employee Assistance Program (EAP) vendors to offer 

caregiver support services such as financial planning, as part of the confidential 

information, support, and referral services these programs offer. Employers can include

caregiving employees with consultations with financial advisors, who are trained in 

trauma-informed support, as part of their benefits package. (Also supports Outcome

3.1) Communities and social services providers can also promote the availability of 

financial planning services to family caregivers

Aligned Actions

Federal agencies have committed to 7 specific actions within the coming years 

in support of Outcome 4.3. See “Actions for Others” for more than 50 additiona

actions that states, communities, and other stakeholders can take to support Goal 4

Outcome 4.4: Long-term services and supports are more affordable, 

allowing family caregivers to reduce their out-of-pocket costs. 

The quality of life of older adults and individuals with all types of disabilities is closely 

tied to the services they receive in home and community-based settings. Among these
2022 National Strategy to Support Family Caregivers Page 77

services are residential supports, personal care services, mental health services, and 

community living supports. While Medicaid is the largest public provider of covered

long-term care services, on average, more than half of long-term care costs are paid 

out of pocket by individuals and families. When families cannot afford these services,

family caregivers are often called upon to fill the gaps, which can increase family 

caregiver stress

From our Listening Sessions

“I would urge everyone to focus on overall long-term care financing 

reform. That’s where the likely real change is going to be. I would suggest the 

council needs [to work with] other entities within the government.... 

That’s going to be the key. Also bring in some of the experts from Washington 

State and see what’s worked, what hasn’t worked.”

The WA Cares Fund is investigating ways of making LTC affordable for all 

workers in the state. Starting in July 2026, each person who is eligible to

receive the benefit can access care costing up to $36,500 (adjusted annually) 

over their lifetime. To access benefits, an individual must need assistance with

at least three ADLs

Affordable Supports and Services

An area of consensus among the focus group participants was the need for a national 

long-term care insurance program. Such a program would enable employees to pay

a monthly premium for guaranteed coverage of a flexible set of goods and services 

necessary for maintaining status in the community. In support of this, employers may

wish to offer benefits that make long-term services and supports more affordable for 

their family caregiver employees. Examples include leave donation programs, respite

programs, onsite adult day care, family caregiver training, and voluntary long-term care 

(LTC) insurance

States and insurance providers also can partner to develop more tools for consumers 

that protect against the costs of long-term care, such as health savings accounts, 

affordable stand-alone policies, hybrid life insurance models, annuities with LTC 

benefits, and term-life insurance that converts to LTC insurance at age 65

Advocates, researchers, and policy makers should continue to research barriers to 

funding LTC. States may wish to explore ways to expand Medicaid HCBS programs,

as well as state-funded programs supporting family caregivers. Insurers may wish

to explore partnerships with HCBS providers to test offering HCBS as Medicare 

Advantage supplemental benefits. The two papers commissioned by the Advisory

Councils speak to opportunities for both programs to proactively address the needs of 

family caregivers:
2022 National Strategy to Support Family Caregivers Page 78

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

■ Medicare and Family Caregivers by Judith A. Stein, J.D., and David A. Lipschu

J.

■ State officials seeking to better understand the state policy landscape for 

supporting family caregivers can review the RAISE Act State Policy Roadmap for 

Family Caregivers developed by NASHP

Aligned Actions

Federal agencies have committed to 1 specific actions within the coming years 

in support of Outcome 4.4. See “Actions for Others” for more than 50 additiona

actions that states, communities, and other stakeholders can take to support Goal 4

Indicators of Success: Financial and Employment Protections

As the actions under Goal 4 are implemented, family caregivers will experience greater 

financial security as the following social changes take place:

■ Older adults, people with disabilities, and their families will no longer have to 

deplete their savings/assets to qualify for Medicaid to access much needed longterm services and supports; they will be able to stay in their own homes where they 

most often want to receive care and live

■ Caregivers have access to high quality and appropriate financial education and 

planning services and support, such as time off and flexible work schedules for 

caregiving

■ Family and kinship caregivers see their experiences reflected in new policies that 

reduce the financial consequences of family caregivers

■ Instead of feeling forced to give up their own careers, family caregivers will be able 

to help their family members access services and supports to help meet their needs 

■ Caregivers are able provide care without being anxious about their financial status 

later in life

■ Caregivers do not have to choose between paying for their own necessities and 

caregiving expenses

■ If they are employed, family caregivers can better balance caregiving and 

meaningful employment
2022 National Strategy to Support Family Caregivers Page 79

■ Caregivers feel comfortable talking to their colleagues and management about 

caregiving at work

■ Managers receive training in how to support employees on their teams including 

those with caregiving responsibilities

■ Caregivers who provide financial management for another have more accessible 

and available tools and technologies that make it easier and more effective to 

safeguard the assets of someone else

■ Caregivers who leave the workforce to provide care can access needed services 

and take time off work for caregiving without losing Social Security “quarters of 

coverage.

■ Caregivers with primary responsibility for care have access to paid leave and flexible 

work policies

■ Long-term care insurance options are available across the lifespan that reduce the 

burden on family caregivers and support community living

Goal 5: Expand data, research, and evidence-based 

practices to support family caregivers

As the RAISE Act initial report to Congress found, the experience of caregiving can 

leave family caregivers financially, emotionally, and physically depleted. Yet, despite

a growing body of research, there is limited infrastructure for the collection of 

comprehensive, population-based data about the prevalence of caregiving and the 

context in which care is provided, or the financial, emotional and physical impacts 

of caregiving

7 In addition, we lack a national research infrastructure that is inclusive 

of the full range of family caregiving (e.g., episodic, chronic, long-distance, etc.

the relationship between the family caregiver and the person receiving care, and all 

caregiving conditions and disabilities

Most national surveys do not contain questions that identify family caregivers. Data

sources that do include family caregivers often use inconsistent definitions that make it 

hard for researchers to synthesize data sets to achieve outcomes, such as determining 

the economic value of caregiving and the opportunity costs for family caregivers

There is still much to learn and document about how public policies can improve 

well-being for family caregivers, especially over time. Identification of family caregivers

continues to pose a challenge which could have long-term impacts on healthy equity, 

public spending, and allocations for the delivery of services
2022 National Strategy to Support Family Caregivers Page 80

As of 2022, there is no major body of work to provide information about the 

experiences of caregiving youth. Similarly, there is little information on the impacts of

sibling caregiving or the needs of children who live in families where the parents are 

full-time family caregivers to other relatives. There is very limited available research

on family caregivers who themselves identify as disabled. Nor are family caregivers

included in biomedical clinical trials or medical device development, which means the 

nation has scant information on the extent to which the presence of a trained family 

caregiver affects efficacy of medical and social services interventions. When studies do

assess family caregiver experiences, they often mistakenly assume the family caregiver 

perspective reflects the patient experience, when in fact they can be markedly 

different

Goal 5 is prerequisite to the success of the Strategy and should be among the highest 

priority efforts by all sectors. These efforts will need to be iterative. In coordinatio

with the achievement of other goals, these efforts can ensure that the nation has the 

knowledge and data necessary to adequately recognize, assist, and support family 

caregivers

Outcome 5.1: A national infrastructure will exist to support the collection 

of population-based data, using standardized wording of the definition 

of family caregiving, and standardized wording of questions that 

address the core characteristics of the family caregiving experience. 

From our Listening Sessions

“As more data emerges to show that caregivers are kick ass people 

and that they are really good workers...the education goes up, the stigma 

goes down and we start making some headway.” 

Over the past three decades, scientific research has significantly increased our 

understanding of family caregiving, but critical gaps in knowledge remain. Much of

what is known about family caregivers is based on single research site, smaller-scale 

studies or surveys conducted with convenience samples. Additionally, a single, well

accepted definition of the term “family caregiver” has not emerged from the field

Yet, available data, as demonstrated in both Advisory Councils’ reports to Congress, 

strongly suggest the urgency of increased support to family caregivers. Current data

also point to the need for more standardized, population-based studies to confirm 

the prevalence of family caregiving in the U.S., identify the contextual factors i

which families provide care, document the impacts of providing care on people with 

disabilities, as well as impacts to the overall family structure and family relationships, 

and to evaluate existing and new care models and programs intended to provide 

support to family caregivers
2022 National Strategy to Support Family Caregivers Page 81

Enterprise Data Strategy

While other aspects of the Strategy call for collective, organic efforts across and 

within sectors, desired outcomes related to Goal 5 likely requires a different approach

Because data, research and identification and promulgation of evidence-based 

practices inform the success of the other goals of the Strategy, the Advisory Councils 

have identified the need for an enterprise data strategy which should be developed 

through a public-private partnership composed of three key groups:

1. Those federal and state bodies that collect and maintain data related to healt

care delivery and outcomes, health care utilization and associated cost, and 

demographic and epidemiological data, as well as data on a wide collection of 

lifestyle variables including health behaviors, employment, and income

2. Private entities capable of either providing analogous data such as actuaries, majo

employers, health insurers, and private entities capable of integrating data from 

multiple sources using advance technology while assuring complete data privacy 

and security

3. Academic institutions, technology start-ups, think tanks, researchers, nonprofi

organizations, and national philanthropic organizations

Governing Body

An enterprise data strategy should be informed and led by a governing body that 

would determine a process for understanding which data sets have the most utility for 

understanding family caregiving needs and supports. The governing body should work

quickly to determine a process for standardizing data and creating a common data 

structure. This should include a uniform set of research questions to identify individuals

as family caregivers. Questions about the family caregiving experience should also be

integrated into existing data collection tools to expand insights into prevalence and 

trends in family caregiving. (Also Supports Outcomes 1.1, 1.3, and 5.3)

Refer to The Changing Landscape of Family Caregiving in the United States by 

Vicki A. Freedman and Jennifer L. Wolf for a discussion of data sources and th

challenges associated with measuring and defining family caregiving

Such efforts will ensure that when researchers design studies, a common set of 

categories of data with a consistent taxonomy is used. The development of a body

of knowledge using common terminology and data sets will allow researchers to 

compare data across caregiving populations and sectors. For example, as described

in the RAISE Act initial Report to Congress, multiple surveys currently exist to count 

prevalence of family caregiving. Each study has variations that prevent aggregating the

data to create full picture of the prevalence of caregiving. They use differing definitions
2022 National Strategy to Support Family Caregivers Page 82

of caregiving (e.g., “caregivers of older adults,” “grandparent-led households,” etc.

they define ages of care recipient differently (e.g., adults only vs. care recipients of a

ages), and each uses a different time span for length of care (e.g., years vs. mont

As a result, researchers cannot compare or combine data sets to identify the actual 

number of family caregivers in the U.S. In addition to consistent data definitions, 

consistent data structure would standardize these disparate sources of information so 

that they could be aggregated and used to better understand and predict outcomes

Data consistency and aggregation allows researchers to study population groups 

over time, homing in on actions and interventions for specific types of caregiving at 

precise stages of illness, helping family caregivers in the short-term, and eventually 

longitudinally. Additionally, this consistent approach will allow data sharing between

previously disparate partners so that older studies can be replicated and used to 

advance current research. It will also enable economists to continue to quantify how

caregiving support impacts health care and social services outcomes and spending

Data Storage and Access

Once a standardized data structure is determined and agreed upon, the participants 

in the partnership would need to develop processes for creating a shared repository

designed to store, process, and secure large amounts of data with differing structures 

side by side. The ability to store that diverse data in a range of formats and sizes will

allow for flexibility as new types of data about caregiving emerge. From this pool of

data, researchers would then be able to draw information and material for a variety 

of uses such as research and prevalence studies, building algorithms, predictive 

analytics, and machine learning. To safeguard privacy of individuals and competitive

data owned by firms participating in the effort, this process would need to include 

security measures such as information assurance and data safeguarding procedures

In 2008, the Federal Aviation Administration (FAA) and the aviation industry 

developed the Aviation Safety Information Analysis and Sharing (ASIAS) program 

to promote an open exchange of safety information to continuously improve 

aviation safety. Over 200 public and private entities participate which allows the

FAA to draw together a wide variety of airline safety data and aviation information 

sources from across government and private industry. Its data set currently

includes 99 percent of all U.S. air carrier operations in U.S. airs

Once the data is gathered there would be a need to increase the analytical capability 

and information-sharing of researchers authorized to access the information. This will

allow for analysis of non-related datasets into such topics as how family caregiver 

supports like respite affect nursing home admission rates. The governing body can

also promote integration of caregiving-related queries into existing data collection tools 

to expand insights and understanding of trends in family caregiving
2022 National Strategy to Support Family Caregivers Page 83

Outcome 5.1 also calls for the establishment of a baseline of data that documents the

impact of caregiving on finances, protectivity, and profits so that these findings can be 

disseminated as part of Outcome 1.1 and shape the development of services under 

Outcome 3.1. To achieve this, the outcome of 5.1 will depend on participation fro

stakeholders who may not think of themselves as part of the caregiving ecosystem, 

like retailers, financial institutions, and transportation providers

State agencies and national, state, regional and local philanthropic organizations are 

encouraged to collaborate with major employers to collect systemic data related to 

caregiving and ensure it reaches academic institutions. For example, researchers

looking for the impact of paid leave on nursing home placements and reducing health 

care costs would benefit from data about use of leave from large employers who 

provide paid leave

As the Advisory Councils have noted, there is no-one-size-fits-all solution to 

supporting family caregivers. Other entities such as local chambers of commerce,

unions, human resources societies, and insurance companies can also advocate for 

and participate in coordinated data collection and sharing for the purposes of creating 

a unified means of measuring and documenting the needs of family caregivers and 

what interventions support them

Aligned Actions

Federal agencies have committed to 17 specific actions within the coming years 

in support of Outcome 5.1. See “Actions for Others” for more than 50 additiona

actions that states, communities, and other stakeholders can take to support Goal 5

Outcome 5.2: Family caregiver research facilitates the development and 

delivery of programs and services that support and enhance the health 

and well-being of the family caregiver and the person receiving support.

From our Listening Sessions

“One of the best ways to increase family caregiver research...

is to either require or incentivize it.” 

The availability of evidence-based and evidence-informed interventions is important 

for the delivery of an array of person-centered, trauma-informed services and 

supports described under Outcome 3.1. In addition to creating an enterprise data

strategy related to caregiving to support Outcome 5.1, major research institutions 

and philanthropic organizations may wish to partner in a parallel effort with other 

stakeholders in the research community to establish a national research agenda on 

caregiving. This agenda should prioritize research goals for the coming decade and

ensure that those goals are aligned with the Strategy and that the data collected is 
2022 National Strategy to Support Family Caregivers Page 84

interoperable with the enterprise structure described above. Priorities of the research

agenda could include: 

■ Prioritizing research into advancing equity for unserved and underserved caregiving 

populations with strong consideration of diversity and cultural effectiveness such 

as family caregivers of color, rural populations, LGBTQIA+ caregivers, caregiving 

youth, and people with disabilities

■ Advancing research on the modeling and measurement of the total value of family 

caregiving and translating these models and measurements into research leading 

to findings to guide business models health systems, insurers and payers, and 

employers. (Also supports Outcomes 2.1, 4.1, 4.2, and 4.3

■ Developing models for sharing of health information with family caregivers that 

honors and promotes self-direction and autonomy for the person receiving support

(Also supports Outcomes 2.2 and 2.3)

■ Encouraging the study of family caregivers in the workplace, including the role of 

the employer and the value of employers investing in workplace caregiving/family 

supports. (Also supports Outcome 4.2

■ Stimulating the next generation of family caregiver support programs (i.e.

interventions) that build on the approaches and mechanisms proven effective in 

prior research but designed to be more inclusive of the types of caregiving and 

diverse family caregivers

■ Promoting the development and use of culturally competent and meaningful family 

caregiver assessment tools

■ Aligning existing protocols in health and social service provider systems to facilitate 

rapid transition from research to services. (Also Supports Outcomes 2.2 and 5.3

■ Promoting research of cutting-edge technologies and devices that could assist 

family caregivers with caregiving tasks or reduce an individual’s need for care 

and family caregiver burden. These technologies would need to be designed with

participation from people with disabilities and could include assistive technology 

for monitoring the location and physical condition of the person receiving support, 

remote home monitoring, and/or web-based applications to facilitate the delivery of 

evidenced based programs. (Also Supports Outcome 3.5 and 5.1

■ Coordinating and supporting data on the need and value of the direct care 

workforce as well as programs that support and develop the careers of direct care 

workers. (Also supports Outcome 3.9
2022 National Strategy to Support Family Caregivers Page 85

■ Increasing translation and dissemination of promising and evidence-supported 

practices and models of care to support family caregivers when they are identified 

in health care and long-term services and supports delivery settings. (Also support

Outcome 5.3)

■ Capturing the potential health care/taxpayer dollar savings over time with expansion 

of coverage for long-term services supports within not only Medicaid but also 

Medicare and private insurance over time, and how that could lower costs and 

improve health and quality of life. (Also Supports Outcome 4.1

■ Coordinating and supporting data on children and kin and grandparent caregivers 

of children outside the child welfare system including those who come to the 

attention of the child welfare system but are diverted to the care of grandparents 

or other kin without the benefit of supports and services. (Also Supports

Outcome 5.1)

Once an agenda is established to allow for information sharing between institutions 

and ongoing support and maintenance, stakeholders may wish to create a caregiving 

research portal that uses open architecture design principals and can be accessed 

by a range of researchers. Developers may want to include a “public domain” view so

that caregivers and non-research-based stakeholders of evidence-based practices 

can review findings and participate in discussions. States can support this by

collecting more and disaggregated data on family caregiving and the long-term care 

workforce and sharing that data with researchers. Community-based organizations

can collect and report data on their work, through financial incentives (such as funding 

administrative cost, data collection and research learning) or through non-financial 

incentives (such as technical support and training) that directly support their programs 

and services. These funded resource incentives should ensure best practices about

the collection of data are followed

Aligned Actions

Federal agencies have committed to 20 specific actions within the coming years 

in support of Outcome 5.2. See “Actions for Others” for more than 50 additiona

actions that states, communities, and other stakeholders can take to support Goal 5

Outcome 5.3: Promising and evidence-informed practices are promoted, 

translated, and disseminated to support family caregivers in the delivery 

of health care and social services. 

There are few proven interventions available for family caregivers at the present time

Those that have been developed tend to focus on family caregivers of people with 

dementia, and most of those programs have yet to be translated for delivery in realworld settings. The nation must commit to funding and conducting consistent research
2022 National Strategy to Support Family Caregivers Page 86

into culturally adaptable family caregiver interventions for a range of circumstances and 

translating existing research for delivery in clinical and social services systems (defined 

widely to include all health care settings, community-based organizations and homebased care providers)

From our Listening Sessions

“...This question of, what do we know about what works in terms of supporting 

family caregivers around the transitions and care that will produce better 

outcomes? And I think that’s a big, big, big question and unknown.” 

Some policymakers have expressed concern that greater research and data on 

caregiving would lead to a demand for services that could outstrip ability to fund such 

services. However, until economists and data scientists can determine the economic

value of caregiving and costs in terms of lost opportunities, tax revenue, and spending 

and reduced productivity, states have incomplete data on the actual return on 

investment in supporting family caregivers. Advocates suspect that when all factors are

considered, supporting family caregivers may prove to be the efficient financial model 

for providing long-term services and supports

Researchers and the entities that fund them can lead this effort through designing 

and advocating for research into interventions and models that are aligned with the 

Strategy. These interventions should be person- and family-centered, trauma-informed,

and adaptable to a range of caregiving circumstances, needs, and cultural sensitivities

(Also supports Outcome 3.1) Such research should include participation from family 

caregivers in underserved communities to ensure services and models meet their 

needs. A key component of these efforts should be the coordination and support

for data collection and demonstrations to improve the direct care workforce. (Also

supports Outcome 3.9) 

Advocates, funding entities, researchers and administrative leaders have a critical role 

in the prioritization of the development and testing of family caregiver identification 

tools that health care and service providers can use to efficiently identify patients and 

clients as family caregivers, including efforts support a person’s ability to self-identify 

as a family caregiver with comfort. This could include

■ Innovations in which family caregivers are identified and engaged via electronic 

health records (EHR), with the consent of the person receiving support

■ Models of care that seamlessly integrate care provided by health care providers 

with community-based social service providers. (Also supports Outcome 1.2, 2.1,

and 2.2) 
2022 National Strategy to Support Family Caregivers Page 87

■ Culturally competent caregiver assessment tools that can be used across a 

range of settings and for a wide variety of purposes by family caregivers and the 

professionals with whom they interact. (Also supports Outcome 2.2

■ Independent evaluations of family caregiver services and supports, so promising 

practices can be identified and scaled up

All available technologies should be explored as a means of supporting wider 

availability of existing evidence-based programs, most of which were designed for inperson delivery, which has become increasing difficulty

The findings of research advances suggested above can be used to support various 

aspects of the Strategy. For example, public relations and media professionals

supporting the campaigns described under Outcome 1.1 can use caregiver 

assessment tools to advance awareness of the availability of proven ways of 

supporting family caregivers. Health care systems and hospitals may wish to identify

a dedicated resource to serve as a family caregiver experience officer/ambassador 

to develop and oversee best practices for engaging family caregivers in the entire 

medical experience, including pre-hospital services, pre-discharge planning, and 

post discharge care in support of Outcome 2.3. Through state-level coalitions,

states, community-based organizations, faith-based organizations and philanthropic 

organizations can create and share toolkits to educate and support professionals 

working with family caregivers to support Outcome 2.5

Aligned Actions

Federal agencies have committed to 15 specific actions within the coming years 

in support of Outcome 5.3. See “Actions for Others” for more than 50 additiona

actions that states, communities, and other stakeholders can take to support Goal 5

Indicators of Success: Data, Research, and Evidence-Based Practices

As the actions under Goal 5 are implemented, the supports and services offered 

to family caregivers will increasing be developed using rigorous data and research 

practices. Examples of such changes include

■ State, tribal, local, and federal programs have information collection processes on 

family caregiving across the lifespan that are consistent and comparable between 

programs and governmental entities

■ A formal data collection process, coordinated at a national level, leads to a body of 

evidence to develop, plan, and coordinate resources, services and supports, and 

helps to identify and document the economic value of family caregiving
2022 National Strategy to Support Family Caregivers Page 88

■ Researchers can document the needs and impact of caregiving on diverse types of 

family caregivers across the lifespan

■ A core set of family caregiver questions is available to add to existing national and 

state surveys

■ Surveys are available in a variety of formats and languages to ensure language and 

communication access for diverse family caregivers

■ Family caregivers and the people receiving support are involved as research 

partners in the design and the delivery of services and plan a prominent role in the 

successful utilization, evaluation, and sustainment of needed services

■ Family caregivers see themselves fully represented in evidence-based practices that 

will improve their health and well-being and the health and well-being of those for 

whom they care

■ Family caregiver support programs (i.e., interventions) and adapted to the realworld experiences of diverse caregive

■ Family caregiving programs and interventions are evaluated to inform the evidence 

base for promising practices and lessons learned (i.e., what works and what doe

not)

■ Researchers have access to consistent data that allows them to measure progress 

toward achieving the goals of the Strategy

■ Organizations can scale up practices and supports that are proven to be impactful 

and cost-effective

■ Researchers have data on the number of and well-being of children in grandfamilies 

outside of the foster care system
2022 National Strategy to Support Family Caregivers Page 89

Conclusion

The 2022 National Strategy to Support Family Caregivers proposes an ambitious list of 

approaches that, if acted upon, would begin to move the nation toward ensuring that 

family caregivers are recognized, assisted, included, supported, and engaged across 

the lifespan. National change for caregiving in this country will require participation

from individuals and a range of stakeholder sectors: federal government, states and 

tribes, philanthropic organizations of all sizes, community-based organizations, faithbased organizations, school districts, health systems, insurance payers, researchers, 

universities, and every one of us. As each sector and individual takes steps to achieve

the vision of the Strategy, the Advisory Councils urge that five foundational issues 

remain front of mind:

1. Every American who lives long enough is likely to become a family 

caregiver, need a family caregiver, or both. 

2. Family caregivers and care recipients must be included. At every step of the 

way, entities must engage family caregivers and the people they support in the 

planning, execution, and evaluation of any activities designed to advance the vision 

of this Strategy. Such an approach will ensure that outreach, engagement, policies,

services and supports, and new initiatives are accessible, person- and familycentered, trauma-informed, and culturally competent to the populations they are 

intended to serve

3. Actions to support family caregivers must be aligned. It is critical that actions 

of stakeholders be aligned with the Strategy to optimize success. The Advisory

Councils reviewed and considered thousands of suggestions, recommendations, 

actions, and ideas. The information included within the 27 outcomes of this

Strategy is a distillation of the best approaches identified through a range of data 

collection efforts including focus groups, interviews, briefings, and formal requests 

for information. While the Advisory Councils understand that further iterations of

this strategy will be necessary ongoing, the outcomes and actions contained here 

represent promising initial steps informed by the most up-to-date understanding of 

how best to immediately and consistently address the support needs of millions of 

family caregivers in a range of diverse circumstances

4. Cross-cutting considerations. Stakeholders are urged to read the overview of 

cross-cutting considerations that affect family caregiving and adopt the essential 

practices to support infusing person- and family centeredness, trauma-informed 

care, DEI and accessibility, and support for direct care workers into caregiver 

services and supports. See First Principles: Cross-Cutting Considerations for

Family Caregiver Support
2022 National Strategy to Support Family Caregivers Page 90

5. There is much more work to be done. The publication of the Strategy is a 

beginning, not the end. As government and stakeholders in the public and private

sectors begin to implement the Strategy, they must also look for opportunities 

to collaborate within and across sectors, leverage resources (and authorities, 

within government agencies) to create the greatest impact, and continue to seek 

opportunities to achieve the outcomes identified by the Advisory Councils

The U.S. sits on the precipice of unprecedented demographic changes that will resul

in a greater need for family caregivers. This first National Strategy to Support Family

Caregivers provides the foundation to motivate and inform independent undertakings 

by all stakeholders and sectors as well as guide and direct outcomes toward a unified 

vision—one in which family, kin, and grandparent caregivers, are recognized and 

supported for their tremendous, and often life-changing, efforts on behalf of others

1 For specific discussion on how fostering an agile, flexible, and well-trained direct care workforce can benefit 

family caregivers, see Outcome 3.9 under Goal 3: Strengthen services and supports for family caregiver

2 For a literature review on the impact of caregiver dyads on outcomes, see Jacops R, Hopkins CS, Fasolino T 

(2022) Patient-Caregiver Dyad: A Systematic Review Informing a Concept Analysis. Int J Nurs Health Care Res

5: 1298. DOI: https://doi.org/10.29011/2688-9501.10

3 See the Supporting Grandparents Raising Grandchildren Act Initial Report to Congress. Released by The

Administration for Community Living, November 2021

4 For additional information on TANF, see https://www.gao.gov/assets/gao-12-2.

5 For a discussion on the existing research on how caregivers benefit society of family caregiving, see “Societal 

Benefits” in Families Caring for an Aging America

6 The Family Medical Leave Act only applies to grandparents, parents, spouses and children. Siblings, aunts,

uncles are not included – as well as other non-traditional family members and domestic partners

7 Committee on Family Caregiving for Older Adults; Board on Health Care Services; Health and Medicine 

Division; National Academies of Sciences, Engineering, and Medicine; Schulz R, Eden J, editors. Families

Caring for an Aging America. Washington (DC): National Academies Press (US); 2016 Nov 8. Available from

https://www.ncbi.nlm.nih.gov/books/NBK396401/ doi: 10.17226/
2022 National Strategy to Support Family Caregivers Page 91

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2022 National Strategy to Support Family Caregivers Page 94

Appendix A: Participating Non-Federal Stakeholders

The following individuals served as non-federal members of the Advisory Councils

RAISE Act Family Caregiving Advisory Council

■ 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 former AAR

National Volunteer President 

■ 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

and Senior Vice-President of Achieva

■ James Murtha, III, MSW, person with a disability and receiver of family caregiving, 

mental health therapist, policy advocate for disability rights, and volunteer with the 

Christopher and Dana Reeve Foundation 

■ Casey R. Shillam, Ph.D., RN, family caregiver, dean, and professor at the Universi

of Portland School of Nursing

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

Rampy Centennial Chair in Gerontology at Baylor Scott & White Health 

■ Deborah Stone-Walls, family caregiver and member of USAging

■ Theresa Tanous, M.H.A., family caregiver and federal government reti

■ Carol Zernial, M.A., Executive Director of the WellMed Charitable Foundatio
2022 National Strategy to Support Family Caregivers Page 95

Advisory Council to Support Grandparents Raising Grandchildren

■ Jaia Peterson Lent, deputy executive director of Generations United

■ Ethlyn McQueen-Gibson, D.N.P, M.S.N, R.N.-B.C., associate professor and d

of Gerontology Center of Excellence at Hampton University

■ Martha R. Crowther, M.P.H, Ph.D., associate dean for research at the Universit

Alabama, College of Community Health Sciences

■ Patrick Donavan, supervisor with Muskingum County (Ohio) Adult and Child 

Protective Services

■ Gail Engel, grandparent and founder of Grand Family Coalition

■ Sarah Hedden, B.S., M.S.W, J.D., attorney with the Kinship Care Legal Ser

Program at the Center for Elder Law & Justice in Buffalo, New York

■ Bette Hoxie, former director of Adoptive and Foster Families of Maine, Inc. & the

Kinship Program

■ Toni Kleckley, M.A. D.Th., grandparent and founder and executive director

Trans4mation Now Inc., and the Grandparents Educating Minds progra

■ Yvonne S. Lee, M.S.W., professor at West Virginia State Univer

■ Linda Miller, R.N., director of the Iowa Department on Agi

■ Sharon Olson, grandparent and past president of the Minnesota Kinship Caregivers 

Assoc

■ Sarah L. Smalls, grandparent and family resource coordinator for Formed Families

Forward

■ Charlotte Stephenson, grandparent and advocate
2022 National Strategy to Support Family Caregivers Page 96

Focus Groups and Key Informant Interviews

Representatives from the following organizations provided input to the focus groups 

and/or interviews

■ AARP

■ Access Living

■ Alabama Department of Aging

■ Alliance of Disability Advocates

■ ALU LIKE, Inc

■ Alzheimer’s Association

■ Alzheimer’s Orange County

■ American Bar Association

■ American Network of Community Options and Resources (ANCOR)

■ Apna Ghar Home Care

■ Arizona Caregiver Coalition

■ Association of Programs for Rural Independent Living (APRIL)

■ ATI Advisory

■ Autistic Self Advocacy Network

■ Autism Society of America 

■ Benjamin Rose Institute on Aging

■ Best of Care Inc

■ Brookdale Foundation 

■ California Long-Term Care Education Center 

■ Caregiver Action Network

■ Cariloop

■ Caring Together, Living Better (CTLB), AgeOptions

■ Center for Family Support, University of Pittsburgh 

■ Center for Parent Information and Resources

■ Center to Advance Palliative Care

■ Chicago Department of Family & Support Services

■ Claude Worthington Benedum Foundation

■ Coalition to Transform Advanced Care (C-TAC)

■ Colorado Cross-Disability Coalition

■ Colorado Department of Health Care Policy & Financing

■ Continuum of Colorado

■ CVS Health
2022 National Strategy to Support Family Caregivers Page 97

■ Dana-Farber Cancer Institute

■ Disability Policy Consortium

■ Douglas County, NE Board of Commissioners

■ Duke-Margolis Center for Health Policy, Duke University

■ Eastern Idaho Community Action Partnership (EICAP)

■ Easterseals Iowa 

■ Elizabeth Dole Foundation

■ Epilepsy Foundation

■ Family & Nursing Care

■ Family First

■ FamilyMeans

■ Federal Reserve Bank of Kansas City/New Mexico Caregivers Coalition

■ Five County Area Agency on Aging

■ Foster Kinship

■ Generations United

■ Global Coalition on Aging (GCOA)

■ Ha Kupuna (National Resource Center for Native Hawaiian Elders)

■ Harvard Business School

■ Health Management Associates

■ Helper Bees 

■ Helping Hands of Vegas Valley

■ Henry Ford Caregiver Assistance Resources and Education Program

■ House Works, LLC

■ Independent Living Research Utilization (ILRU)

■ Institute for Healthcare Improvement (The Conversation Project)

■ Integrated Benefits Institute

■ Iowa CareGivers

■ iRobot

■ Jewish Family Service of Saint Paul (JFS)

■ Jewish Federation of North America

■ J-Sei

■ Justice in Aging

■ KBH Advocacy

■ L’Arche USA

■ LeadingAge
2022 National Strategy to Support Family Caregivers Page 98

■ Learn Care Together LLC

■ Little Lobbyists 

■ Little Tokyo Service Center

■ L’Orech Yomim/Center for Healthy Living (LOY) 

■ Lucile Packard Foundation for Children’s Health

■ Lunalilo Home

■ MAC, Inc. Maryland Living Well Center of Excellenc

■ Massachusetts Digital Health Initiative 

■ Massachusetts Executive Office of Elder Affairs

■ Massachusetts Lifespan Respite Coalition

■ MCM CPAs and Advisors, LLP

■ Meals on Wheels America

■ Missouri Rural Health Association

■ Montana Family to Family Health Information Center

■ National Alliance for Direct Support Professionals (NADSP)

■ National Association for Home Care & Hospice (NAHC)

■ National Association of Counties (NACo)

■ National Association of Nutrition and Aging Services Programs (NANASP)

■ National Brain Health Center for African Americans, Balm in Gilead

■ National Catholic Partnership on Disability

■ National Council on Aging (NCOA)

■ National Disability Rights Network (NDRN)

■ National Rural Health Association (NRHA)

■ National Senior Corps Association

■ Native American Outreach Program, Banner Alzheimer’s Institute

■ Nevada Office of Aging & Disability Services 

■ New Mexico Caregivers Coalition

■ North Dakota Respite Coalition

■ Nourish for Caregivers

■ Office of Hawaiian Affairs 

■ OK Cares

■ Paralyzed Veterans of America 

■ Philadelphia Corporation on Aging

■ Rethink First

■ Rhode Island Department of Human Services
2022 National Strategy to Support Family Caregivers Page 99

■ Rural Dementia Caregiver Project, University of California San Francisco

■ Services and Advocacy for Lesbian, Gay, Bisexual & Transgender Elders (SAGE)

■ Silberman Aging, Hartford Center of Excellence in Diverse Aging

■ South Carolina Respite Coalition

■ Southern Caregiver Resource Center (SCRC)

■ The Alzheimer’s Project

■ The Renaissance Collaborative (TRC)

■ The Resource Exchange (TRE)

■ The Urban Institute

■ Torchlight

■ Trellis

■ United for Caregivers@Work

■ United Methodist Health Ministry Fund 

■ United Way of Rhode Island/Family Caregiver Alliance of Rhode Island

■ University of California San Francisco Healthforce Center

■ University of Iowa

■ University of Minnesota Rural Health Research Center

■ Us Against Alzheimer’s/Latinos Against Alzheimer’s

■ Vision for Equality

■ Warrior Care Network, Wounded Warrior Project

■ Washington County Disability, Aging, and Veteran’s Services

■ Wellthy

■ Working Daughter

■ Yale New Haven Health/Geriatric Emergency Department Collaborative

■ Zen Caregiving Project
2022 National Strategy to Support Family Caregivers Page 100

Appendix B: Resources Used in the Development of 

the Strategy

■ Building a National Strategy to Support Family Caregivers: Findings from Key 

Informant Interviews and Stakeholder Listening Sessions by Pamela Nadash, Ph.D.

Taylor Jansen, M.S.; Eileen J. Tell, M.P.H.; and Marc Cohe

■ In Their Own Words-Family Caregiver Priorities and Recommendations: Results 

from a Request for Information by Pamela Nadash, Ph.D.; Taylor Jansen, M.

Eileen J. Tell, M.P.H.; and Marc Cohen,

■ Inventory of Key Family Caregiver Recommendations

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

■ Medicare and Family Caregivers by Judith A. Stein, Executive Director, and David 

Lipschutz, Associate Director, of the Center for Medicare Advocacy

■ Older Adults’ Equity Collaborative (OAEC) briefing to the RAISE Act Family 

Caregiving Advisory Council (April 28, 2021)

■ RAISE Act State Policy Roadmap for Family Caregivers

■ RAISE Family Caregivers Act Initial Report to Congress

■ Recordings and transcripts of meetings of the Advisory Council to Support 

Grandparents Raising Grandchildren

■ Recordings and transcripts of meetings of the RAISE Family Caregivers Act 

Advisory Council

■ SGRG Act Initial Report to Congress

■ Supporting Family Caregivers of Older Adults with a History of Trauma: 

Implementation Recommendations for the National Family Caregiving Strategy by 

the Jewish Federations of North America

■ Supporting Grandparents Raising Grandchildren: Resources for Consumers and 

Professionals

■ What Family Caregivers Need: Findings from Listening Sessions
2022 National Strategy to Support Family Caregivers Page 101

Acronyms and Abbreviations

■ AT: Assistive technology

■ ACF: Administration for Children and Families

■ ACL: Administration for Community Living

■ ADL: Activities of daily living

■ ADPI: Alzheimer’s Disease Programs Initiative (ACL)

■ ADRD: Alzheimer’s disease and related dementias

■ ASPE: HHS Office of the Assistant Secretary for Planning and Evaluation 

■ ASPR: HHS Office of the Assistant Secretary for Preparedness and Response

■ CARE Act: Caregiver Advise, Record, and Enable Act

■ CDC: Centers for Disease Control and Prevention

■ CFPB: Consumer Financial Protection Bureau

■ CHIP: Medicaid and Children’s Health Insurance Program (CMS)

■ CMS: Centers for Medicare & Medicaid Services

■ CSP: Caregiver Support Program (VA)

■ DCW: Direct care workforce (or workers)

■ DEI: Diversity, equity, and inclusion 

■ DOL: U.S. Department of Lab

■ DME: Durable medical equipment

■ EAP: Employee assistance programs

■ ED: U.S. Department of Educati

■ FAA: Federal Aviation Administration

■ FBO: Faith-based organization

■ FEMA: Federal Emergency Management Agency

■ GAO: U.S. Government Accountability Offic

■ HCBS: Home and community-based services

■ HHS: U.S. Department of Health and Human Servic

■ HRSA: Health Resources and Services Administration

■ ID/DD: Intellectual and developmental disabilities

■ IHS: Indian Health Service

■ JAHF: The John A Hartford Foundation

■ LGBTQIA+: Lesbian, gay, bisexual, transgender, questioning, intersex, asexual, and 

others

■ LTC: Long-term care

■ NAC: National Alliance for Caregiving
2022 National Strategy to Support Family Caregivers Page 102

■ NASHP: National Academy for State Health Policy

■ NFCSP: National Family Caregiver Support Program (ACL)

■ NIA: National Institute for Aging

■ NIH: National Institutes of Health

■ OAA: Older Americans Act

■ OAEC: Older Adults Equity Collaborative 

■ PTSD: Post-traumatic stress disorder

■ RAISE: Recognize, Assist, Include, Support, & Engage Act of 2017

■ RFI: Request for information

■ SDM: Supported decision making

■ SAMHSA: Substance Abuse and Mental Health Services Administration

■ SGRG: The Supporting Grandparents Raising Grandchildren Act

■ TANF: Temporary Assistance for Needy Families 

■ VA: U.S. Department of Veterans Affai