ACL.gov

ACL is an operating division of the

U.S. Department of Health and Human Services.

National Family Caregiver Support

Program

Insights from the Caregiving Community

Family caregivers arethebackboneofAmerica’s long-termcaresystem.

According to the National Association of Area Agencies on Aging, more

than 65 millionAmericans are caring for an older adult or someone living

with an illness or disability. This translates to nearly 30 percent of the

general population. This fact sheet includes information from caregivers 

based on their own experience. 

Advice to Caregivers

 Ask for help early and ask for it 

often. Caregivers who seek assistance 

and supports earlier in the process 

often find the experience to be more 

manageable than those who don’t 

engage with services until later on in 

their loved one’s decline. 

 Find time for yourself. We know the

caregiving process is physically 

demanding and emotionally draining. 

Caregivers who frequently use respite 

and home health services experience 

more positive caregiving.

 Don’t go through the caregiving 

experience alone. By asking for help 

as often as needed and making time 

for yourself, you will have a more 

positive outlook, experience less 

stress, experience fewer interruptions 

in your daily life, have more time to 

take care of your needs, and be a 

more effective caregiver to your loved 

one

Background

Between 2013 and 2018 ACL 

undertook the first evaluation 

of the National Family 

Caregiver Support Program 

(NFCSP). The two-part 

evaluation included a process 

study to understand and 

document the strategies used 

to meet NFCSP goals, and an 

outcome study to understand 

NFCSP caregiver outcomes 

including stress reduction and 

maintenance of the care 

recipient in the community. 

The data provided in this fact 

sheet are drawn from a 

literature review and sample 

of caregivers whose care 

recipient passed away during 

the course of the outcome 

evaluation (n=8). This small 

study gathered information 

on the service components 

and needs of bereaved 

caregivers. The results and 

conclusions from this study 

aim at affording local service 

providers, Area Agencies on 

Aging (AAAs), State Units on 

Aging (SUAs), and AoA insights 

for supporting individuals at 

all stages of the caring 

process.

 Last Updated: Jan 2019

From Caregivers to 

Caregivers

“Find time to focus on you. 

It can be difficult to find 

time for yourself while 

caring for a loved one, but 

taking breaks to stay 

active and engage socially 

can help you maintain 

your health and continue 

delivering the best care.”
ACL.gov

ACL is an operating division of the

U.S. Department of Health and Human Services.

NATIONAL FAMILY CAREGIVER SUPPORT PROGRAM:

Insights from the Caregiving Community 

Managing Bereavement

 We know from other caregivers the 

importance of having a support network

to help you through your grief. 

 Keep family and friends close and don’t 

hesitate to lean on them when needed. Many 

caregivers highlight the importance their faith 

plays in grief management, and the 

significant role their community plays in 

supporting them. 

 Plan ahead and get started on estate 

planning early. Caregivers report not 

knowing how to handle the realities of settling 

their loved one's affairs, such as canceling 

social security, closing memberships, settling 

bills, etc.

 Finally, make an effort to stay active, eat 

well, and get involved in your local 

community. Returning to work, joining a 

gym, and getting involved in community 

service and volunteer organizations are all 

ways to help manage your grief.

HOW DO I FIND HELP IN MY COMMUNITY?

Eldercare Locator is a

public service provided

by ACL’s Administration

on Aging. It connects

older adults and their families and

caregivers with local support resources.

Eldercare Locator can be reached at

1-800-677-1116 or eldercare.gov.

The National Respite 

Locator Service (NRLS) 

helps parents, family 

caregivers, and 

professionals find respite 

services in their state and local area to match 

their specific needs. It is a free service offered 

by the ARCH National Respite Network. Access 

the NRLS at archrespite.org/respitelocator.

From Caregivers to 

Caregivers

“It is never too early to begin 

estate planning. Talking to your 

loved one about their wishes can 

be a difficult step to take, but 

having a plan in place will reduce 

the burden on you if the time 

comes to put it in action.”