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CAREGIVER 

PROFILE

Users of National Family Caregiver Support 

Program (NFCSP) Services

A comparison of caregivers who used NFCSP educational services or respite care with 

caregivers who did not use the services 

PURPOSE

The National Family Caregiver Support Program (NFCSP) was established 

in 2000 by the Older Americans Act Title III-E to support the needs of 

informal caregivers. Through NFCSP funding, states and territories offer 

services to caregivers in partnership with Area Agencies on Aging (AAAs). 

This profile examines the differences in caregiver demographics and the 

dynamics at play between caregivers who used NFCSP education services 

or respite care and caregivers who did not use these services. 

These comparisons can help organizations in the National Aging Network, 

an informal network of home- and community-based care providers, 

understand the needs and the characteristics of caregivers who used 

NFCSP services.

NFCSP SERVICE USE: ANALYSIS CATEGORIES

The data used in this profile were collected by interview in December 2016 for 

the Administration for Community Living’s outcome evaluation of the NFCSP.

NFCSP Users are AAA client 

caregivers who used NFCSP 

educational services or respite 

care in the past 6 months

Non-User AAA Clients are 

caregivers who did not use 

NFCSP services in the past 6 

months, but are AAA clients

Non-Users are caregivers who 

did not use NFCSP services in 

the past 6 months and are not

AAA clients

Definition of services:

1) Educational services – caregiver 

education, training, individual 

counseling, and support groups 

to help caregivers better 

manage their responsibilities 

and cope with the stress of 

caregiving

2) Respite care - care provided at 

home by trained individuals so 

that informal caregivers can rest 

or attend to their own needs

Average age of caregivers:

 68 for NFCSP Users

 67 for Non-User AAA Clients

 64 for Non-Users
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WHAT TYPE OF CAREGIVER USES NFCSP SERVICES?

The bar graphs below show the percentage of caregivers among a characteristic-based subgroup that are in each 

of the three user groups. For example, the top bar shows that among caregivers who are employed part-time or 

full-time, 37% used NFCSP services, 34% are AAA clients who did not use NFCSP services in the past 6 months, 

and 28% are not AAA clients and did not use NFCSP services. 

37%

49%

50%

37%

57%

33%

60%

42%

50%

27%

34%

34%

33%

36%

33%

35%

30%

35%

33%

36%

28%

18%

17%

26%

10%

33%

10%

23%

16%

36%

Employed

Not employed

Education past H.S.

No education past H.S.

CR with ADRD

CR without ADRD

CR wanders or gets lost

CR does not wander

Lives with CR

Does not live with CR

Used NFCSP services AAA clients not using 

NFCSP services

Neither AAA clients nor 

using NFCSP services

CR = Care Recipient

ADRD = Alzheimer’s Disease or Related Dementias

SIGNIFICANT DIFFERENCES IN THE PERCENTAGE OF CAREGIVERS WHO ARE NFCSP USERS*

 49% among those not employed part-time or full-time compared to 37% of those employed

 50% among those with an education past high school compared to 37% of those without education 

past high school

 57% among those who care for a care recipient (CR) with Alzheimer’s Disease or Related Dementias 

(ADRD) compared to 33% of those caring for a CR without ADRD. 

 60% among those with a CR who wanders or gets lost compared to 42% among those with a CR who 

does not wander or get lost

 50% among those who live with their CR compared to 27% among those that do not live with their CR.

* Significantly different at p-value < 0.001 using a Chi-square statistic.
RELATIONSHIP TO CARE RECIPIENT

More NFCSP Users are the care recipient’s spouse (51%) compared with Non-User AAA Clients (44%) 

and Non-Users (26%).

CAREGIVING INTENSITY

Caregiving intensity was measured as the percentage of five activities of daily living (ADLs) with which the caregiver 

provided assistance daily (eating, dressing, toileting, and mobility), or daily/several times a week (bathing), with 

greater percentages indicating greater intensity. Thirty-four percent of NFCSP Users provided assistance with four 

or five (≥ 80%) of the five ADLs daily compared with 28% of Non-User AAA Clients and 12% of Non-Users. 

Caregiving Intensity as a Percentage of Five ADLs Provided Daily

CAREGIVER BURDEN

Using the Zarit Burden Inventory, which 

measures self-reported caregiver burden, 

NFCSP Users reported more burden than 

Non-User AAA Clients and Non-Users.

Zarit Burden Score (Mean)

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RESPITE CARE FROM OTHER SOURCES OUTSIDE OF NFCSP

Caregivers also receive 

respite care from family or 

friends and from other 

organizations, including 

Medicare or private home 

health care. More NFCSP 

Users received respite care 

from family and friends 

compared with Non-User 

AAA Clients and Non-Users.

Key DifferencesBetween the NFCSP Users Group and the 

Non-Users Group*

 The mean age of NFCSP Users (68 years) was significantly higher than the mean age of Non-Users 

(64 years).

 Fifty-one percent of NFCSP Users were spouses to the CR compared to 26% of Non-Users.

 NFCSP Users were more likely to report daily caregiving intensity of 80% or higher in comparison 

to Non-Users (34% vs 12%, respectively).

 NFCSP Users reported higher caregiver burden than Non-Users (2.9 mean Zarit burden score vs 

2.2 mean Zarit burden score, respectively).

 NFCSP Users were more likely to receive respite care from family and friends than Non-Users 

(42% vs 21%, respectively).

DATA SOURCE

This profile utilized the data collected by Westat during baseline interviews for the NFCSP outcome evaluation. The 

sample of 1,568 caregivers reside in 43 states in the U.S. For this analysis, the definition of a NFCSP User is a 

caregiver who answered “Yes” when asked if he/she used NFCSP education services or NFCSP respite care in the 

past 6 months. Information about NFCSP, evaluation sample design, and the evaluation findings are publicly 

available at https://acl.gov/sites/default/files/programs/2018-12/Caregiver_Outcome_Evaluation_Final_Report.pdf. 

* Excluding Non-User AAA Clients, significantly different at p-value < 0.001

Group means and frequencies are calculated for each characteristic. T-test, Chi-square, and MantelHaenszel chi-square statistics are used to test significant differences between NFCSP Users and 

caregivers who did not use the services. Percentages are rounded to the nearest whole number.