CAREGIVER 

PROFILE

Caring for Individuals with Alzheimer’s Disease 

or Related Dementias (ADRD)

A comparison of caregivers who have a care recipient (CR) with Alzheimer’s Disease or 

Related Dementias (ADRD) with caregivers who have a CR without ADRD

PURPOSE

This profile examines the differences in caregiver demographics and the 

dynamics at play between those who are caring for an adult at home with 

ADRD (n=810) and those who are caring for an adult 60 years of age or 

older at home for another reason (n=756). 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 ADRD caregivers.

ADRD caregivers are those 

who are caring for an adult 

at home with Alzheimer’s 

Disease or Related 

Dementias (ADRD)

Non-ADRD caregivers are 

those who are caring for 

an adult 60 years of age or 

older at home for another 

reason

CAREGIVER DEMOGRAPHICS

 The mean age of Non-ADRD caregivers 

was 64, while the mean age of ADRD 

caregivers was 67. Among all caregivers, 

the mean age was 65.9.

 More Non-ADRD caregivers were 

employed (33%) compared with ADRD 

caregivers (27%).

 About three-quarters of both Non-ADRD 

and ADRD caregivers identified as female.

 More than half of Non-ADRD caregivers 

and almost two-thirds of ADRD caregivers 

had attained education beyond a high 

school degree.

 About half (49%) of Non-ADRD caregivers 

had annual incomes of $30k or less 

compared with 41% of ADRD caregivers.

Non-ADRD and ADRD caregivers by mean age, employment 

status, gender, educational attainment, and income

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CARE RECIPIENT CHARACTERISTICS

ADRD caregivers face unique challenges with care 

recipients. More ADRD caregivers experienced a 

care recipient resisting aid (43%), hitting or biting 

(14%), and wandering or getting lost (29%) 

compared with Non-ADRD caregivers (18%, 2%, 

and 4%, respectively). 

CAREGIVING SITUATION

Relationship to care recipient

More ADRD caregivers 

are the care recipient’s 

spouse (49%) compared 

with Non-ADRD 

caregivers (37%).

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 ADRD caregivers provided 

assistance with four or five (≥ 80%) of the five ADLs daily compared with 19% of Non-ADRD caregivers. 

Caregiving Intensity as a Percentage of Five ADLs Provided Daily

23% of ADRD caregivers reported 

that caregiving is emotionally very 

difficult, compared with 8% of 

Non-ADRD caregivers.

8%

Non-ADRD caregivers

23%

ADRD caregivers

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Most difficult tasks

Among Non-ADRD caregivers, mobility tasks such as walking, getting out of 

bed, or standing were most commonly reported as the most difficult 

caregiving task (14%).

Among ADRD caregivers, bathing or showering (18%) and 

eating, getting dressed, and using the toilet (14%) were most 

commonly reported as the most difficult caregiving tasks.

CAREGIVING SUPPORT

 Fewer ADRD caregivers received help from 

family or friends (85%) compared with NonADRD caregivers (92%).

 More ADRD caregivers received help from a 

paid source* (55%) compared with Non-ADRD 

caregivers (43%).

CAREGIVER SELF-REPORTED HEALTH

Caregiver health was measured using survey items from 

the Adult Patient Reported Outcomes Measurement 

Information System (PROMIS®) Global Short Form.

**

The Mental health score is a sum of four items. Higher 

scores indicate better self-reported mental health. A score 

of 20 is the highest possible. On average, Non-ADRD 

caregivers had higher mental health scores than ADRD 

caregivers.

Using the Zarit Burden Inventory, with a score of 5 

representing the “most burden,” ADRD caregivers 

reported more burden than Non-ADRD caregivers.

Caregiver quality of life

More Non-ADRD caregivers (36%) 

reported having Excellent or Very 

Good quality of life compared with 

ADRD caregivers (27%).

* A paid source can be an agency, private provider, or housekeeper.

** Information available at http://www.healthmeasures.net/explore-measurement-systems/promis 3
USE OF NFCSP SERVICES

ADRD caregivers used NFCSP services more than Non-ADRD 

caregivers. Among a subgroup of 1,241 caregivers who were 

listed as clients of an Area Agency on Aging across the 

country:

 29% of ADRD caregivers used NFCSP educational services

in the past 6 months compared with 18% of Non-ADRD

caregivers

 47% of ADRD caregivers used NFCSP respite care in the

past 6 months compared to 37% of Non-ADRD caregivers

Key DifferencesBetween ADRD and Non-ADRD Caregivers

 ADRD caregivers were generally older than Non-ADRD caregivers, with mean ages of 67 and 64,

respectively.2

 ADRD caregivers, on average, were more highly educated than Non-ADRD caregivers.1

 ADRD caregivers were more likely to experience a care recipient resisting aid, hitting or biting, and

wandering or getting lost compared with Non-ADRD caregivers.2

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

to Non-ADRD caregivers.2

 ADRD caregivers were more likely to report that caregiving is emotionally very difficult compared

with Non-ADRD caregivers.2

 Although ADRD caregivers reported more paid caregiving support than Non-ADRD caregivers, they

reported receiving less caregiving support from family and friends.2

DATA SOURCE

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 1,566 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 < 0.01 2 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 ADRD and 

Non-ADRD caregivers. Percentages were rounded to the nearest whole number.

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