CAREGIVER 

PROFILE

Family Caregivers

Examining caregiver characteristics, caregiving support, and other caregiving 

dynamics that differ between short term and long term caregivers

PURPOSE

This profile examines the differences in demographics and the dynamics at play 

between “short term” caregivers who reported that they have only been caregiving for 

two or fewer years (n=388) and “long term” caregivers who reported that they have 

been caregiving for more than two years (n=1,180). The data used in this profile were 

collected by interview in December 2016 for the Administration for Community 

Living’s outcome evaluation of the Older Americans Act Title III-E National Family 

Caregiver Support Program (NFCSP). 

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 family (or informal) caregivers.

“Short term” caregivers 

are those who have 

been caregiving for 2 

years or fewer

“Long term” caregivers 

are those who have 

been caregiving for 

more than 2 years

CAREGIVER DEMOGRAPHICS

Short term and long term caregivers by age group and 

employment status (%)

 The mean number of years caregiving among 

short term caregivers was 1.5 years; the mean 

for long term caregivers was 9 years

 The mean age among all caregivers was 65.8

 A higher percentage of short term caregivers 

were younger than age 55 (22%) compared with 

long term caregivers (16%)

 Short term caregivers were less likely to be 

between the ages of 65-74 than long term 

caregivers: 25% vs. 33%

 More short term caregivers were employed 

(36%) compared with long term caregivers (28%)

RELATIONSHIP TO CARE RECIPIENT

Caregivers are mainly the care 

recipient’s spouse or child, 

especially among long term 

caregivers.

1
CARE RECIPIENT DIAGNOSED WITH DEMENTIA OR ALZHEIMER’S

54% of long term caregivers’ care 

recipients were diagnosed with 

Alzheimer’s Disease or Related 

Dementias compared with 45% of 

short term caregivers’ care recipients

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. Twenty-one percent of short term caregivers provided assistance 

with four or five (≥ 80%) of the five ADLs daily compared with 29% of the long term caregivers. 

Caregiving Intensity as a Percentage of Five ADLs Provided Daily

CAREGIVER SELF-REPORTED HEALTH

Caregiver health was measured using survey 

items from the Adult Patient Reported 

Outcomes Measurement Information System 

(PROMIS®) Global Short Form.*

Each health score is a sum of four items. 

Higher scores indicate better self-reported 

health. A score of 20 is the highest possible. 

On average, short term caregivers had higher 

health scores than long term caregivers.

* Information available at http://www.healthmeasures.net/explore-measurement-systems/promis 2
USE OF NFCSP SERVICES

Among a subgroup of 1,242 caregivers who were listed 

as clients of an Area Agency on Aging (AAA):

 23% of long term caregivers used NFCSP educational

services in the past 6 months compared with 28% of

short term caregivers

 31% of short term caregivers used NFCSP respite care

in the past 6 months compared to 46% of long term

caregivers

Key Differences Between Short and Long Term Caregivers

 Long term caregivers were generally older than short term caregivers. Fifty-eight percent of long term

caregivers were age 65 or older compared to 51% of short term caregivers.1

 Short term caregivers were more likely to have part-time or full-time employment.2

 The care recipients of long term caregivers were more likely to be diagnosed with Alzheimer’s

Disease or Related Dementias in comparison to short term caregivers.2

 Short term caregivers were less likely to report daily caregiving intensity of 80% or higher in

comparison to long term caregivers.3

 On average, self-reported physical health and mental health scores were higher (i.e., better) for short

term caregivers than long term caregivers.3

 Among the subset of caregivers who were AAA clients, long term caregivers were more likely to use

NFCSP respite care in the past 6 months.3

DATA SOURCES

The NFCSP outcome evaluation performed by Westat measured NFCSP service use and the difference in outcomes 

between caregivers who received support from NFCSP and those who did not. This profile utilized the data collected 

at baseline from 1,568 caregivers residing in 43 states in the U.S. 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. 

1 Significantly different at p-value < 0.05 2 p-value < 0.01 3 p-value < 0.001

Group means and frequencies were calculated for each characteristic. T-test, Chi-square, and 

Mantel-Haenszel chi-square statistics were used to test significant differences between short term 

and long term caregivers. Percentages were rounded to the nearest whole number. 3