RESOURCES:

Administration on Aging Caregiver Site: 

www.aoa.gov/prof/aoaprog/caregiver/carefam.asp 

Administration on Aging Alzheimer site: 

www.aoa.gov/alz

State Units on Aging: 

www.nasua.org/SUAMembers.cfm

National Alliance for Caregiving

www.caregiving.org

The Alzheimer’s Association: 

www.alz.org 

The Family Caregiver Alliance: 

www.caregiver.org 

The National Family Caregiver Association: 

www.thefamilycaregiver.org

AARP: 

www.aarp.org

The Eldercare Locator 1-800-677-1116

www.eldercare.gov 

The AoA is the lead federal partner for the national aging network of 

state and area agencies on aging, tribal organizations, service providers and volunteers, which administers programs to support the 

well-being, health and independence of older persons and their 

caregivers.

The 

National

Family

Caregiver

Support

Program

U.S. Administration on Aging

Department of Health and Human Service s
The National Family Caregiver 

Support Program

WHO ARE THE CAREGIVERS?

n Each caregiver experience is unique, but they 

share common experiences.

n In the absence of a spouse who is able to 

provide care, a daughter or daughter-in-law is 

most likely to assume the role of caregiver.

n Family members are the primary providers of 

long-term care.

n One person is usually the primary caregiver, 

although there may be other family and 

friends that help.

On behalf of the Administration on Aging, I am proud that Congress entrusted us 

with the responsibility of the National Family Caregiver Support Program. As 

someone who took care of my aunts and both of my aging parents, I am very aware 

of the everyday challenges that face caregivers. I also know how important this 

program can be throughout the United States. That is why we must increase the 

awareness of the NFCSP throughout our communities to ensure all caregivers are 

aware of this program so they can take advantage of it when they need it. 

This brochure is a large step towards that awareness. It recognizes several states, 

resources and links that provide support, information and a network of communication to caregivers. I hope you find the enclosed information useful as we at the 

AoA continue to build and improve upon the caregiver program. 

- Josefina G. Carbonell

A Word From The Assistant Secretary for Aging

Page 1

"STAGES" IN A CAREGIVING CAREER 

n STAGE 1 – PERFORMING CAREGIVING TASKS 

When a dependency situation emerges in which a family member or close 

acquaintance performs tasks designed to assist an older individual with 

routine activities previously performed without assistance.

n STAGE 2 – SELF-DEFINITION AS A CAREGIVER

When individuals come to view themselves as caregivers and incorporate 

this activity into their social or personal identity.

n STAGE 3 – PERFORMING PERSONAL CARE

When the caregiver begins providing personal care such as assistance with 

bathing, dressing, bladder and bowel evacuation, or other aspects of 

personal hygiene. Whereas the need for personal care marks the end of 

Informal caregiving for many children, it often signals an unambiguous start 

of caregiving for spouses.

n STAGE 4 – SEEKING ASSISTANCE AND FORMAL SERVICE USE

When the caregiver actively seeks out formal support services designed to 

assist informal caregivers. The frequent observation that many support services go unused likely reflects the fact that the services have been targeted to caregivers who have not yet reached this stage, which can be considered the "servable" moment.

n STAGE 5 – CONSIDERATION OF NURSING HOME PLACEMENT

When the caregiver seriously considers placing the elder into a nursing home 

as an alternative to informal caregiving. When caregivers fail to seek services prior to seriously considering nursing home placement, there is little opportunity for services to play a preventive role.

n STAGE 6 – INSTITUTIONALIZATION

When nursing home placement occurs. As many dependent elders die 

without ever residing in a nursing home, not all caregivers reach this stage.

n STAGE 7 – TERMINATION OF THE CAREGIVING ROLE

When caregiving has an explicit end. There are three possible reasons: 

1) death of the elder (or caregiver); 2) recovery of the elder; or 3) termination of the caregiving role (i.e.- caregiver quits). The significance of this stage 

is that it acknowledges that care by informal caregivers continues to be provided after the elder has been institutionalized.

*adapted from the "Seven Markers in the Caregiving Trajectory" by Rhonda 

J.V. Montgomery, Ph.D. Director ,Gerontology Center , University of Kansas

Page 6
A community provider 

program was established to support Asian 

American and Pacific Islander caregivers 

through a communitybased wellness, lifelong 

learning and information 

program. (CA) 

The State Office on Aging is collaborating with 

the Community Legal 

Aid Society to develop a 

handbook addressing 

the legal concerns of 

grandparents and relative caregivers raising 

children. (DE)

An area agency on aging will test and implement a culturally proficient model of family 

caregiver support to 

meet the needs of Mexican-American caregivers and elders. (AZ)

The implementation of a 

project to establish regional training centers 

for caregivers of deaf 

older adults. (MA)

Caregivers come from 

all ethnic, geographic 

and racial backgrounds. 

There are wide variations in the conditions of 

those who are receiving 

help, the kinds of assistance needed, the level 

of caregiver burden, and 

the self-perceptions of 

caregivers and their willingness to utilize the formal service delivery system. 

The following examples 

were made possible by 

the Administration on 

Aging funding innovative 

grants throughout the 

United States.

Money went to a community agency to develop a model health 

care and training intervention that targets African American daughters 

who are caregivers. 

(PA)

Several states have responded to the needs of 

rural caregivers by establishing lending libraries for training videos, 

comprehensive resource directories, 

books, pamphlets and 

other informational resource materials on 

caregiving.

Caregiver Diversity

Page 5

Making A Difference for America's Caregivers

The National Family Caregiver Support Program 

(NFCSP) was established in November 2000. The 

NFCSP, administered by the Department of Health and 

Human Services' Administration on Aging, was 

officially launched by HHS Secretary Tommy 

Thompson in February 2001 with the release of $113 

million in funds to states to begin its implementation. 

In addition, $5 million was released to tribal 

organizations to support the caregivers of Native 

American elders, and approximately $6 million was 

awarded to fund 39 innovative grants and projects 

designed to test the effectiveness of caregiving 

programs across the nation.

Since the enactment of the NFCSP, AoA's national 

network of State Offices on Aging, Area Agencies on 

Aging, tribal organizations and local community service 

providers, has displayed great diligence and creativity in 

implementing the law and providing much-needed 

services to caregivers of the elderly and those with 

disabilities. 

In the first year, the network focused on the development 

of support systems and expanding the range of services 

to meet the diverse needs of caregivers. This has 

required them to be more flexible and more innovative in 

the delivery of services. Their efforts have resulted in 

new partnerships; improved access to services; outreach 

to special populations; and provision of services to 

respond to the unique needs of families.

In FY 2007, the 

National Family 

Caregiver Support 

Program was funded 

 at $162 million. Of 

that amount, $6.3

million is for 

continued support of 

the Native American 

Caregiver Program. 

The NFCSP has 

served more than 

 2 million

caregivers 

nationwide.

Page 2
The program calls for all states, working in partnership 

with area agencies on aging and local community-service 

providers to have five basic services for family caregivers, 

including:

1.Information to caregivers 

about available services

2.Assistance to caregivers 

in gaining access to supportive services

3.Individual counseling, organization of support 

groups, and caregiver 

training to caregivers to 

assist the caregivers in 

making decisions and 

solving problems relating 

to their caregiving roles

4.Respite care to enable 

caregivers to be temporarily relieved from their 

caregiving responsibilities

• In-home respite care

• Adult day services

• Institutional respite 

on an intermittent, 

occasional or emergency basis

5. Supplemental services, 

on a limited basis, to 

complement the care 

provided by caregivers

• Home modifications

• Assistive technologies

• Emergency response 

systems

• Equipment/supplies

• Transportation

In Florida, AoA funds were awarded to a service provider to establish and 

evaluate a multi-faceted project on end-of-life issues, providing hospice, 

palliative care professionals and family caregivers with in-depth training on 

caregiver concerns.

In Kentucky, the Lake Cumberland Area Agency on Aging assisted three 

siblings who assumed care of their mother with Alzheimer’s disease and 

provided care to their father in his last few months of life. Counseling, 

support groups, adult day care and respite services were provided to assist 

them during those difficult days.

Family caregivers 

provide an invaluable 

resource to their loved 

ones as well as to 

America. Their 

courage, compassion 

and dedication to 

family members and 

friends allow the 

elderly and persons 

with disabilities to 

remain in a loving 

environment, often at 

great cost - economic, 

physical and mental -

to the caregiver. I am 

pleased that we are 

now able to assist 

caregivers and 

provide them with 

resources in their 

communities so that 

they may continue 

their support.

~HHS Secretary 

Tommy G. Thompson

Basic Services

Page 3

Eligible Populations of Caregivers

Family caregivers of older adults, age 60 

or older, and persons with Alzheimer's

disease or a related disorder (regardless

of age); grandparents and relative

caregivers of children no older than 18

and relative caregivers of an adult child

aged 19-59, with a disability (not 

including parents). The statute requires 

states to give priority consideration to: 

1. persons in greatest social and economic need (with particular attention to low-income, individuals); and 2) older 

individuals providing care and support to persons with

severe disabilities, including children with severe

disabilities.

WHY IS THE PROGRAM NEEDED?

Families, not social service agencies, nursing homes or 

government programs, are the mainstay of long term care 

(LTC) for older persons in the United States. The degree 

of caregiver involvement has remained fairly constant for 

more than a decade, bearing witness to the remarkable 

resilience of the American family in taking care of its older 

persons. This is despite increased geographic separation, 

greater numbers of women in the workforce, and other 

changes in family life.

Statistics:

More than 18.9 million U.S. households are serving in 

family caregiving roles for persons over the age of 50, and 

that number will increase rapidly as the population ages, 

and as medical science continues to extend life. 

Costs:

The contribution of America’s caregivers to the nation’s 

health care system is valued at $306 billion annually, 

compared to $43 billion for home care and $115 billion on 

nursing home care. Caregiver services significantly reduce costs to Medicare, Medicaid, and private payers.

The D.C. Office on 

Aging provided 

emergency respite 

care for one week 

to a family whose 

caregiver was 

killed on September 11th at the Pentagon. NFCSP 

funds were used to 

make special 

provisions to care 

for the elderly 

mother in a 

nursing home to 

allow the family to 

make funeral 

arrangements for 

the caregiver and 

alternative plans 

for her future.

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