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Improving Lives Through Research®

Final

Report

Outcome Evaluation of the

National Family Caregiver

Support Program

December 5, 2018 Authors:

Cecilia Avison

Dwight Brock

Joanne Campione

Susan Hassell

Beth Rabinovich

Robin Ritter

Jacqueline Severynse

Duck-Hye Yang

Prepared for: Katarzyna Zebrak

Administration for Community Living

Washington, DC

Prepared by:

Westat

An Employee-Owned Research Corporation®

1600 Research Boulevard 

Rockville, Maryland 20850-3129

(301) 251-1500
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Outcome Evaluation of the National Family 

Caregiver Support Program iii 

 

Table of Contents 

Chapter Page 

Introduction by the Administration for Community 

Living ...................................................................................................... xi

Executive Summary .............................................................................. xii

Background ............................................................................ xii

Outcome Evaluation Objectives........................................ xiv

Methodology ......................................................................... xv

Results and Key Findings .................................................... xvii

Conclusion ............................................................................................. xxiii

1. Introduction ........................................................................................... 1-1

1.1 The National Family Caregiver Support 

Program.................................................................................. 1-1

1.2 NFCSP Evaluation............................................................... 1-2

1.3 Outcome Evaluation Objectives........................................ 1-3

1.4 Evaluation Questions ........................................................... 1-4

1.5 Organization of the Report ................................................. 1-5

2. Survey Methodology ............................................................................. 2-1

2.1 Survey Instrument Design................................................... 2-1

2.2 Telephone Interviewing for Data Collection.................... 2-4

3. Evaluation Participants and Survey Implementation ...................... 3-1

3.1 Sampling and Recruitment .................................................. 3-1

3.2 Survey Response Rates and Evaluation of 

Participant Retention............................................................ 3-3

4. Analysis Methods .................................................................................. 4-1

4.1 Quantifying the Use of NFCSP Services and 

Group Assignment of Caregivers ....................................... 4-1

4.2 Constructing Key Caregiver Characteristic 

Variables................................................................................. 4-3

4.3 Description of Caregiver Outcome Measures.................. 4-3
Outcome Evaluation of the National Family 

Caregiver Support Program iv 

 

Contents (continued) 

Chapter Page 

5. Descriptive Statistics from the Caregiver Survey ............................. 5-1

5.1 Caregivers............................................................................... 5-1

5.2 Care Recipients ..................................................................... 5-16

5.3 Caregiver Perceptions of the Usefulness of 

NFCSP Services for Continuing Caregiving and 

Delaying Institutionalization of the Care 

Recipient ................................................................................ 5-22

5.4 Most Helpful Caregiver Service from AAA ..................... 5-27

6. Association Between Processes for Delivering NFCSP 

Services and Caregiver Outcomes...................................................... 6-1

6.1 NFCSP Process Evaluation ................................................ 6-1

6.2 Processes and Structure at the AAA-Level 

Associated with Optimal Caregiver Outcomes................ 6-2

7 Caregiver Targeted Need and Overall Support................................ 7-1

7.1 Targeting NFCSP Service to Those with the 

Greatest Need ....................................................................... 7-1

7.2 Barriers to Receiving Services from Any 

Organization.......................................................................... 7-7

7.3 Why Caregivers Do Not Seek Services............................. 7-8

7.4 The Extent to Which NFCSP Clients Receive 

Other Services....................................................................... 7-9

8. Caregiver Outcome Evaluation........................................................... 8-1

8.1 Propensity Score Matching ................................................. 8-1

8.2 Comparison of Outcomes Between Program 

Caregivers and Comparison Caregivers............................. 8-4

9. Results from the Care Recipient Survey ............................................ 9-1

9.1 Survey Items.......................................................................... 9-1

9.2 Care Recipient and Caregiver Well-Being......................... 9-1
Outcome Evaluation of the National Family 

Caregiver Support Program v 

 

Contents (continued) 

Chapter Page 

10. Summary................................................................................................. 10-1

10.1 Profile of Caregivers and Care Recipients ........................ 10-1

10.2 NFCSP Service Use, Effectiveness, Targeting, 

and Perceived Helpfulness.................................................. 10-2

10.3 Evaluation Strengths and Limitations ............................... 10-4

Conclusion ............................................................................................. 10-4

References.............................................................................................. R-1

Appendixes

A Caregiver Survey Instrument ............................................................................ A-1 

B Care Recipient Survey Instrument ................................................................... B-1 

C Evaluation Methodology .................................................................................. C-1 

D Data Frequency Tables: Caregiver Survey Baseline Items............................ D-1 

E Data Frequency Tables: Caregiver Survey 6-Month Items .......................... E-1 

F Data Frequency Tables: Care Recipient Survey Items.................................. F-1 

Tables

3-1 Distributions of agencies in the sample frame and final sample ................. 3-1

3-2 Interview timeframes and brief description of interview process............... 3-2

3-3 Baseline in-scope response rates and opt-out rates....................................... 3-3

5-1 Frequency of caregivers’ help with care recipients’ activities....................... 5-3

5-2 Perceived difficulty of caregiving ..................................................................... 5-4

5-3 Follow-up caregiver employment questions ................................................... 5-5

5-4 Non-spouse caregiver questions about money spent .................................... 5-6
Outcome Evaluation of the National Family 

Caregiver Support Program vi 

 

Contents (continued) 

Tables Page 

5-5 Caregivers’ use of healthcare facilities during the past 6 months................ 5-7

5-6 Follow-up caregiving status and reasons for not still caregiving ................. 5-7

5-7 Enjoyment of caregiving and perspective of care recipients’ 

appreciation ......................................................................................................... 5-8

5-8 Help with caregiving activities by source type................................................ 5-9

5-9 Frequency of caregivers’ use of NFCSP respite care .................................... 5-10

5-10 Type of NFCSP educational service in the past 6 months ........................... 5-11

5-11 Amount of use of NFCSP educational services ............................................. 5-11

5-12 The effect of perception of receiving all the help needed on 

Caregiver burden score ...................................................................................... 5-14

5-13 Care recipient characteristics............................................................................. 5-16

5-14 Care recipient activities that require help........................................................ 5-17

5-15 Diseases or conditions of care recipients at baseline..................................... 5-17

5-16 Items about care recipient behavior................................................................. 5-18

5-17 The percentage of favorable responses by recent NFCSP service 

use at baseline...................................................................................................... 5-23

5-18 Regression model results to predict favorable responses of 

service usefulness................................................................................................ 5-24

5-19 Respite care hours and the odds ratio of a more favorable 

response to Continued caregiving (N = 447 caregivers) .............................. 5-26

5-20 Educational services amount and the odds ratio of a more 

favorable response to Continued caregiving (N = 212 caregivers)............. 5-27

5-21 Caregiver response frequencies to most helpful AAA service..................... 5-28
Outcome Evaluation of the National Family 

Caregiver Support Program vii 

 

Contents (continued) 

Tables Page 

6-1 AAA caregiver assessment policies: Items from the process 

evaluation............................................................................................................. 6-3

6-2 Comparison of mean caregiver outcome scores among AAA 

groups: t-test results ........................................................................................... 6-3

6-3 Mean value of model control variables ........................................................... 6-5

6-4 Regression estimates for AAA-level means of “Definitely yes” to 

NFCSP services enabling the caregiver to Continued caregiving................ 6-6

7-1 SES Need Index indicators among caregivers who used NFCSP 

respite care ........................................................................................................... 7-2

7-2 Comparison of mean weekly respite hours by each indicator of 

the SES Need Index ........................................................................................... 7-4

7-3 Frequency of SES Need Index indicators among caregivers who 

used NFCSP educational services.................................................................... 7-5

7-4 Comparison of mean educational services amount by each 

indicator of the SES Need Index ..................................................................... 7-6

7-5 Reasons caregivers were unable to obtain caregiver support 

services from any organization ......................................................................... 7-7

7-6 Other reasons caregivers were unable to obtain caregiver support 

services from any organization ......................................................................... 7-8

7-7 Reasons caregivers responded “no” to receiving NFCSP respite 

care or vouchers.................................................................................................. 7-8

7-8 Reasons caregivers responded “no” to receiving NFCSP 

educational services............................................................................................ 7-9

7-9 Comparison of receipt of respite care or educational services 

provided by family, friends, or neighbors ....................................................... 7-10

7-10 Comparison of receipt of respite and educational services 

provided by different sources: NFCSP versus non-NFCSP 

caregivers.............................................................................................................. 7-10
Outcome Evaluation of the National Family 

Caregiver Support Program viii 

 

Contents (continued) 

Tables Page 

7-11 Receipt of home and community-based services: NFCSP versus 

non-NFCSP caregivers...................................................................................... 7-11

7-12 Results of logistic regression predicting use of a service at followup .......................................................................................................................... 7-12

8-1 Comparison of Program and Comparison caregivers before and 

after propensity score matching: Covariate means or percentages 

(N = 908)............................................................................................................. 8-3

8-2 Regression results: Effects on outcomes among 908 caregivers................. 8-5

8-3 Differences in mean PROMIS Mental health scores for Program 

and Comparison groups over time ................................................................... 8-6

8-4 Differences in mean PROMIS Physical health scores for Program 

and Comparison groups over time ................................................................... 8-7

8-5 Differences in mean Zarit Caregiver Burden scores for Program 

and Comparison groups over time after propensity score 

adjustment ............................................................................................................ 8-7

8-6 Differences in mean Caregiver satisfaction scores for Program 

and Comparison groups over time ................................................................... 8-9

8-7 Differences in mean Caregiver confidence scores for Program 

and Comparison groups over time ................................................................... 8-10

9-1 Comparison of care recipients’ responses and caregivers’ 

responses on the quality of life and well-being measures at 

baseline and at 12 months ................................................................................. 9-2

9-2 Correlations between care recipients’ responses and caregivers’ 

responses on the quality of life and well-being measures at 

baseline (N = 206 dyads)................................................................................... 9-2

9-3 Correlations between care recipients’ responses and caregivers’ 

responses on the quality of life and well-being measures at 

12 months (N = 206 dyads).............................................................................. 9-2
Outcome Evaluation of the National Family 

Caregiver Support Program ix 

 

Contents (continued) 

Figures Page 

ES-1 Distribution of age category among caregivers........................................... ... xvii

ES-2 Changes in adjusted mean Zarit Caregiver Burden scores for 

Program and Comparison caregiver groups ................................................... xix

3-1 Flow chart of evaluation participants.............................................................. 3-2

5-1 Caregiver relationship with CR......................................................................... 5-1

5-2 Distribution of caregiver age (N = 1,568) ...................................................... 5-2

5-3 Response frequencies to most difficult caregiving activity to 

perform ................................................................................................................ 5-4

5-4 Response frequencies to getting a great deal of satisfaction from 

caregiving ............................................................................................................. 5-8

5-5 Prior caregiving years by four categories......................................................... 5-12

5-6 Caregiver responses to “Are you receiving all the help that you 

need?” (N = 1,568)............................................................................................. 5-13

5-7 Mean Zarit Caregiver burden score plotted by receiving all the 

help response ....................................................................................................... 5-13

5-8 Comparison of responses for caregiver receives all help needed 

response between caregivers and care recipients at baseline........................ 5-15

5-9a Comparison of care recipient institutionalization trends by 

caregiver race/ethnicity...................................................................................... 5-20

5-9b Comparison of care recipient institutionalization trends by prior 

hospitalization of care recipient ........................................................................ 5-21

6-1 Comparison of AAA adjusted means for Continued caregiving 

(N = 43 AAAs) ................................................................................................... 6-5

7-1 Mean NFCSP respite hours per week at each SES Need Index 

value at baseline (N = 474 caregivers)............................................................. 7-3

7-2 Mean NFCSP educational services amount at each SES Need 

Index value at baseline (N = 222 caregivers).................................................. 7-5
Outcome Evaluation of the National Family 

Caregiver Support Program x 

 

Contents (continued) 

Figures Page 

8-1 Changes in adjusted mean Zarit Caregiver burden scores for 

Program and Comparison groups between Time 1 and Time 2 ................. 8-8

8-2 Changes in mean Caregiver confidence scores for Program and 

Comparison groups between Time 1 and Time 2 ......................................... 8-10
Outcome Evaluation of the National Family 

Caregiver Support Program xi 

 

 Introduction by the Administration for 

Community Living 

In 2000, Congress established the National Family Caregiver Support Program (NFCSP) as part of 

the reauthorization of the Older Americans Act (OAA). At the time, this new program marked the 

first federal recognition of the critical role families play in the nation’s system of long-term services 

and supports. As well, it was the first federal program to make it possible for every state and 

community to provide family caregivers with a flexible base of services and supports to assist them 

in their efforts to keep their loved ones in the settings of their choice for as long as possible. Today, 

the NFCSP is an integral component of our nation’s fabric of long-term services and supports and is 

a trusted and reliable source of information and support for family and older relative caregivers.

The results of the 2018 Outcome Evaluation of the NFCSP report presented here are the 

culmination of a multi-year effort by the Administration for Community Living (ACL) to evaluate 

the program’s design and operation at the state, local, and provider levels, and to assess its impacts 

on the family caregivers it serves. The Outcome Evaluation was undertaken with the following key 

objectives in mind: 

• To help ACL understand which kinds of services are most helpful for caregivers and 

identify any unmet needs of caregivers and gaps in support for them; 

• To assess the impact of services on caregivers’ ability to continue to provide homebased caregiving as needed; and

• To examine the relationship between caregiver outcomes and key processes and 

characteristics of the Area Agencies on Aging managing and/or providing NFCSP 

services.

Key among the evaluation’s findings are important insights into the value of respite in reducing 

caregiver burden and that education and training services can lead to greater caregiver confidence 

over time. Additionally, the evaluation demonstrates that caregiver use of the services made available 

by the NFCSP helped them continue in their role for longer periods, an important factor in delaying 

or preventing the institutionalization of the care recipient. Finally, the results show the connections 

between certain processes (e.g., targeting and caregiver assessment) and caregiver outcomes that may 

help the aging services network better design and shape local programs to meet the needs of family 

caregivers. 

ACL believes that the results of this evaluation, when combined with the Process Evaluation results 

published in 2016,1 will provide the aging services network, advocates, and policymakers with 

information that will be instrumental in shaping the future of family caregiver supports in the U.S. 

ACL plans to use the results of this evaluation to continue to shape its efforts to better support 

families and family caregivers, and to provide targeted training and technical assistance to the aging 

services network to ensure optimal responsiveness to the needs of family caregivers. 

 

1 The Process Evaluation Final Report is publicly available at

https://acl.gov/sites/default/files/programs/2017-02/NFCSP_Final_Report-update.pdf
Outcome Evaluation of the National Family 

Caregiver Support Program xii 

 

 Executive Summary 

 Background 

Established via the reauthorization of the Older Americans Act (OAA) by the 106th U.S. Congress 

in 2000, the Title III-E National Family Caregiver Support Program (NFCSP) is a Federal program 

designed to support the needs of family or other informal caregivers as they lend assistance to aging 

adults, as well as grandparents and older relatives caring for minor children or adults with disabilities. 

The Administration on Aging (AoA) within the Administration for Community Living (ACL) of the 

U.S. Department of Health and Human Services (DHHS) administers the NFCSP, which aims to 

help individuals remain in their homes and communities as long as possible. 

Through the NFCSP, states and territories offer the following five core services for caregivers, in 

partnership with Area Agencies on Aging (AAAs) and local service providers:

• Information for Caregivers about Available Services. Caregivers can learn about a 

range of supports, resources, and services available.

• Assistance to Caregivers in Gaining Access to Services. Access assistance helps 

connect caregivers with services offered by private and voluntary agencies.

• Caregiver Education/Training, Individual Counseling, and Support Groups. 

These services help caregivers better manage their responsibilities and cope with the 

stress of caregiving. 

• Respite Care. Trained caregivers provide care for individuals, either at home or at adult 

day care facilities, so that caregivers can rest or attend to their own needs. 

• Supplemental Services. Additional services may include transportation, home 

modifications, and medical equipment. 

The NFCSP assists caregivers in the following groups: 

• Adult family members or other informal caregivers age 18 and older providing care to 

individuals age 60 and older; 

• Adult family members or other informal caregivers age 18 and older providing care to 

individuals of any age with Alzheimer’s disease and related disorders;
Outcome Evaluation of the National Family 

Caregiver Support Program xiii 

 

• Older relative caregivers (excluding parents) age 55 and older providing care to children 

under age 18; and

• Older relative caregivers (including parents) age 55 and older providing care to adults 

ages 18 to 59 with disabilities. 

The outcome evaluation described in this report focused on the first two groups of caregivers. 

 NFCSP Evaluation 

The mission of ACL is to maximize the independence, well-being, and health of older adults, people 

with disabilities across the lifespan, and their families and caregivers. To support ongoing program 

planning efforts and determine the efficacy of the Title III-E NFCSP, ACL/AoA contracted with 

Westat to conduct an outcome evaluation of the program. The outcome evaluation represents the 

second phase of a two-part evaluation of the NFCSP. The first phase, the process evaluation, was 

completed in 2016.2

 The purpose of the two-phase evaluation was to generate information about the 

NFCSP and its clients for policymakers, funders, and program developers, and to measure the 

efficacy of those services in improving caregiver outcomes. This report is the second of two reports 

about the program’s evaluation, and summarizes findings from the NFCSP outcome evaluation. 

The outcome evaluation focused on the collection of survey response data from a nationally 

representative sample of NFCSP client caregivers, a Comparison group of caregivers who do not 

receive NFCSP services, and a sample of care recipients (CRs) of caregivers in the two groups. This 

was the first national longitudinal survey of caregivers designed for the purpose of evaluating the 

NFCSP. Survey data collected in the outcome evaluation coupled with the AAA-level data collected 

during the process evaluation allow for the investigation into what types of organizational structures, 

approaches, and strategies for delivering NFCSP services are associated with optimal caregiver-level 

outcomes. Furthermore, the evaluation’s findings should be of assistance to the Secretary of Health 

and Human Services in developing a national strategy to support family caregivers (RAISE Family 

Caregivers Act, 2017).

 

2 The Process Evaluation Final Report is publicly available at

https://www.acl.gov/sites/default/files/programs/2017-02/NFCSP_Final_Report-update.pdf. 
Outcome Evaluation of the National Family 

Caregiver Support Program xiv 

 

 Outcome Evaluation Objectives 

The objectives of the outcome evaluation were to:

• Help ACL understand which kinds of services are most helpful for caregivers and 

identify any unmet needs of caregivers and gaps in the support for them; 

• Identify any NFCSP resources, organizational characteristics, and implementation 

practices that appear to contribute to positive outcomes for caregivers receiving the key 

NFCSP caregiver services of respite care and/or education/training, individual 

counseling, and support groups; 

• Assess the impact of services on the ability of caregivers to continue providing homebased caregiving as needed; for example, by examining the relationship between selfreported caregiver measures of mental health, physical health and well-being and the 

amount of caregiver services received; and

• Examine the relationship between NFCSP client outcomes and key processes and 

characteristics of the AAAs managing and/or providing NFCSP services. 

The outcome evaluation was designed to address the following four key evaluation questions: 

• Evaluation Question #1 (EQ1). In conjunction with information from the process 

evaluation (conducted in Phase 1), what types of organizational structures and/or 

approaches for NFCSP services are associated with the best participant-level outcomes?

• Evaluation Question #2 (EQ2). Are services reaching the groups targeted by the

OAA, including caregivers serving older adults with greatest social or economic need?

• Evaluation Question #3 (EQ3). To what extent do NFCSP service participants also 

receive other home- and community-based long-term support and services, and what is 

the relationship among these services? 

• Evaluation Question #4 (EQ4). To what extent do NFCSP program participants’ 

outcomes differ from those of caregivers who do not receive support and services from 

the NFCSP?
Outcome Evaluation of the National Family 

Caregiver Support Program xv 

 

 Methodology 

The NFCSP outcome evaluation draws on information obtained from comprehensive telephonebased surveys of NFCSP client caregivers and a Comparison group of caregivers who were not 

clients of NFCSP. A survey was administered to random samples of participants, based on 

probability samples of AAAs that were surveyed as part of the ACL’s 11th National Survey of Older 

Americans Act Participants (NSOAAP). The nonparticipant Comparison group was formed by 

identifying clients of Older Americans Act services who indicated during the NSOAAP that they 

had someone who assisted them with activities of daily living (ADLs) and who were not recipients 

of NFCSP caregiver services. These clients were called and asked if they had a family caregiver.

The Westat evaluation team attempted phone interviews with each caregiver three times: (1) baseline 

in Winter 2016, (2) 6-month follow-up in Summer 2017, and (3) 12-month follow-up in 

Winter 2017. 

 Caregiver Outcome Measures 

The caregiver survey collected information about caregivers’ health and well-being, referred to as 

outcome measures in this evaluation. The measures are self-reported; thus they are subjective and 

not clinical assessments. However, for the longitudinal analysis, the self-reported measures are 

adequate to measure person-level change. Three of the five measures are composite measures, which 

means several items are grouped to make one score. The items comprising the composite measures 

come from instruments that are nationally known and have been tested for validity, meaning they 

adequately measure the construct being measured. The five key outcome measures used in this 

evaluation are reported in the next subsections. 

 PROMIS Mental Health and Physical Health Measures 

To measure mental and physical health, the survey included the 4-item PROMIS Global Mental 

Health items and the PROMIS Global Physical Health score collected by the Adult PROMIS 

SF v1.1 Global Short Form (Hays et al., 2009). For the PROMIS measures, higher scores indicate 

better health.
Outcome Evaluation of the National Family 

Caregiver Support Program xvi 

 

The PROMIS Mental health score is the sum of four items measuring different aspects of 

caregiver’s mental health, each with a scale of 1 to 5. The items include: 

1. Perception of quality of life; 

2. General rating of self-perceived mental health, including mood and ability to think; 

3. Satisfaction with social activities and relationships and

4. Frequency of being bothered by emotional problems such as feeling anxious, depressed, 

or irritable.

The PROMIS Physical health score is the sum of four items assessing different aspects of 

caregiver’s physical health on a scale of 1 to 5. The items include: 

1. General rating of physical health; 

2. Perceived ability to carry everyday physical activities such as walking, climbing stairs; 

carrying groceries, or moving a chair; 

3. Average fatigue rating; and

4. Average pain rating.

 Zarit Caregiver Burden 

To measure burden, the evaluation used the Zarit Burden Inventory (ZBI) with four items that are 

summarized into one score. In 1980, Dr. Steven Zarit developed ZBI to measure caregiver 

subjective perceptions of burden (Zarit et al., 1980). ZBI items are assessed on a 5-point Likert scale, 

with higher scores indicating greater burden. 

The items that make up the Zarit Caregiver burden score are:

1. Having sufficient time for self; 

2. Feeling stressed between caregiving and other responsibilities; 

3. Feeling strained when around the CR; and 

4. Feeling uncertain about what to do about the CR. 
Outcome Evaluation of the National Family 

Caregiver Support Program xvii 

 

 Caregiver Satisfaction and Caregiver Confidence 

Caregiver satisfaction was a single item measuring the caregiver’s level of agreement with the 

following statement: “I get a great deal of satisfaction from being a caregiver.” Responses ranged from 1 to 5 

with higher scores indicating stronger agreement. 

Caregiver confidence was also a single item that asked “Overall, how would you rate your confidence as a 

caregiver? Would you say very confident, somewhat confident, a little confident, not very confident, or not at all 

confident?” Responses ranged from 1 to 5 with higher scores indicating more confidence. 

 Results and Key Findings 

A. Participant Characteristics 

Analysis of the baseline responses among 1,568 caregivers was used to characterize the evaluation’s 

caregivers and CRs. The mean age of the caregivers was 66. Figure ES-1 shows the breakdown of 

caregivers by age category.

Figure ES-1. Distribution of age category among caregivers

5%

11%

29% 30%

20%

5%

Less than 45 45–54 55–64 65–74 75-84 85 and over

Age in years 

Caregiver Age Category

Other characteristics among the 1,568 baseline caregivers in the evaluation include:

• 79 percent White and non-Hispanic 

• 2 percent Spanish-speaking
Outcome Evaluation of the National Family 

Caregiver Support Program xviii 

 

• 73 percent female

• 44 percent were children of the CRs (including in-laws); 43 percent were spouses

• The average number of years that the caregivers have been caregiving is 7 years

• The average number of hours a day that the caregivers “help the CR” is 9 hours 

• 16 percent responded that caregiving was “very difficult” emotionally 

• 7 percent responded that caregiving was “very difficult” physically

• 34 percent worked for pay in the past year

• 70 percent responded that they get a great deal of satisfaction from caregiving

• 83 percent receive caregiving help from family members, friends, or neighbors 

• 48 percent receive caregiving help from an agency (including NFCSP) or a private 

provider 

B. Caregiver Use of NFCSP Services 

At baseline, 43 percent (N = 522) of NFCSP client caregivers said they received respite care from 

their AAA in the past 6 months—mainly in their home. Among those, the median number of 

NFCSP respite hours used each week was six. Twenty-four percent (N = 298) of NFCSP client 

caregivers said they received caregiver education/training, individual counseling, or support group 

services3 in the past 6 months. Among them, support group services (52%) had the most utilization, 

followed by caregiver education or training such as classroom or online courses (36%), and 

individual counseling (24%). 

Among NFCSP client caregivers who said they did not use NFCSP respite care in the past six 

months, approximately one-third said they did not use respite because they did not know about the 

service from the agency. The next most common reason for not obtaining needed respite care was 

that the caregiver did not qualify for the service. The third most common reason was that the 

caregiver did not need the service. Among NFCSP client caregivers who said they did not use 

NFCSP educational services, approximately half said they did not know about the service from the 

agency. The next most common reason for not obtaining educational services was that they were 

unable to attend. 

 

3 Education/training, individual counseling, and support group services are hereafter referred to as “educational 

services” in this report.
Outcome Evaluation of the National Family 

Caregiver Support Program xix 

 

C. Effect of NFCSP Services on Caregiver Outcomes 

To examine the effect of NFCSP services on the five caregiver outcomes, Westat conducted a series 

of difference-in-differences (D-i-D) analyses. This type of analysis looks at the change in outcomes 

across time for the Program caregivers (N = 491) versus the Comparison caregivers (N = 417).4

One key finding from the longitudinal D-i-D was that, on 

average, Program caregivers who received 4 or more hours of 

respite care per week had a decrease in self-reported burden 

over time, while the Comparison caregivers experienced an 

increase in self-reported burden. As shown in Figure ES-2, 

while caregiver self-reported burden became greater for the Comparison caregivers from Time 1 to 

Time 2 (+ 0.145 points), the burden for the Program group decreased (- 0.095 points).

Caregivers who received 4 

or more NFCSP respite 

care hours per week 

reported a decline in 

caregiver burden over time.

Figure ES-2. Changes in adjusted mean Zarit Caregiver Burden scores for Program and 

Comparison caregiver groups

11.04

10.95

10.26

10.40

9.8

10.0

10.2

10.4

10.6

10.8

11.0

11.2

Time 1 Time 2

Zarit Burden Score

Program Comparison

Previous studies have found that both respite care and caregiver emotional support can reduce 

burden among caregivers (Griffin et al., 2013). This finding suggests that caregiver burden may be 

particularly sensitive to the amount of respite care received and that there may be a certain minimum 

amount of respite care needed to reduce caregiver burden (Brock et al., 2011). 

 

4 For detailed information regarding comparison group matching and the D-i-D analysis, refer to Appendix C: 

Evaluation Methodology.
Outcome Evaluation of the National Family 

Caregiver Support Program xx 

 

The second key finding of the D-i-D evaluation was an increase 

in Caregiver confidence among Program caregivers who used 

NFCSP educational services. More specifically, Program 

caregivers who attended at least one education/training, 

counseling, or support group session during the course of the 

evaluation experienced an increase in self-reported caregiver confidence over time. In contrast,

Comparison caregivers who did not receive any NFCSP educational services showed a decrease in 

their mean confidence scores. This finding is consistent with evidence from previous studies that 

found education and supportive therapy to be effective in increasing caregiver confidence 

(Vandepitte et al., 2016). Caregivers confident in their capability to provide care may be more likely 

to engage in caring for CRs with complex medical needs (Vellone et al., 2015) and may have a 

positive effect on CR ADL performance (Li & McLaughlin, 2011), thus underscoring the 

importance of programs that successfully increase caregiver confidence.

Caregivers who utilized 

NFCSP educational 

services showed 

increased confidence with 

caregiving over time.

While the evaluation found improvements in Caregiver burden and Caregiver confidence for 

Program caregivers, there was no such effect found for NFCSP services on caregiver mental health, 

physical health, or satisfaction. One interpretation could be that NFCSP services are not designed to 

address the caregiver’s physical health, including chronic conditions and pain (Ivey et al., 2017; 

Polenick et al., 2017). Another possibility is that the evaluation duration may not have been 

sufficient to capture changes in mental and physical health. Unlike the Zarit Caregiver burden score, 

the PROMIS Mental health and Physical health measures were not developed to be caregiver 

specific, but rather as more general assessment instruments. Therefore, Zarit Caregiver burden 

scores may have been more sensitive than, for example PROMIS Mental health scores, in capturing 

the effects of NFCSP services such as respite hours. Finally, Caregiver satisfaction is a complex 

concept that could be affected by a myriad of factors unrelated to the use of support services. 

D. Caregiver Perceptions of the Usefulness of NFCSP Services 

When caregivers who used NFCSP respite were asked “How helpful are the respite services from {Agency}

to you as a caregiver?” 98 percent of the caregivers said the service was either “very helpful” (86%) or 

“somewhat helpful” (12%). Similarly, among those caregivers who received educational services, 99

percent said the service was either “very helpful” (74%) or “somewhat helpful” (25%).
Outcome Evaluation of the National Family 

Caregiver Support Program xxi 

 

In a more global question, caregivers were asked at baseline 

“Have the services you received from {Agency} enabled you to provide care 

longer than would have been possible without these services?” (referred to 

as Continued caregiving). The evaluation team found that, 

among caregivers who used NFCSP respite care, as the respite 

hours per week increased so did the probability of a more 

favorable response to the Continued caregiving item. The same relationship was found for 

educational services amount. These findings were the results of multivariable regression models that 

controlled for caregiver and CR characteristics. 

More use of NFCSP 

services was associated 

with caregivers’ 

perception that the 

services definitely helped 

them continue caregiving.

E. The Intersection Between NFCSP Process and Outcomes 

The Westat team investigated the relationship between program processes of the NFCSP and clientreported effectiveness of caregiver services using survey data collected in a previous evaluation from 

43 AAAs combined with this evaluation’s caregiver survey responses. The sample includes responses 

from 364 caregivers who received NFCSP caregiver services in the preceding 6 months from 

43 AAAs. A multivariable regression model that controlled for daily intensity of caregiving and other 

caregiver characteristics was used to estimate the association between an AAA’s frequency of 

assessing client satisfaction and the frequency of caregivers responding “Definitely yes” when asked 

if NFCSP services have enabled them to continue caregiving longer. Findings show that the 

percentage of caregivers who responded “Definitely yes” was higher within AAAs that assessed 

client satisfaction more often than annually than for AAAs with less frequent assessments (65.7% 

versus 45.0%, respectively; p = 0.0085). This finding suggests that agencies with a process to assess 

caregiver/client satisfaction more often than annually have, on average, NFCSP clients who have a 

more favorable perception of the benefits of NFCSP caregiver services for Continued caregiving.

The association between assessment and reassessment by the AAAs and Caregiver burden was also 

investigated. This analysis included response data from 54 AAAs combined with outcome scores 

from 458 caregivers who received NFCSP respite care and/or educational services from those 

AAAs. Significantly higher Caregiver burden scores were found among the caregivers from AAAs 

that include the impact of caregiving in their needs assessment, in comparison to AAAs that do not 

include such evaluation (p = 0.02). This result suggests that agencies that focus on individual 
Outcome Evaluation of the National Family 

Caregiver Support Program xxii 

 

caregiver strain when assessing for need for services may better understand their clients’ needs than 

agencies that do not have these processes.

F. Caregiver NFCSP Use and Socioeconomic Need 

One of the key evaluation questions was to examine whether caregivers with more social or 

economic need were receiving the same amount of NFCSP services as those with less need. To 

accomplish this, the evaluation team created a Socioeconomic (SES) Need index as the sum of five 

caregiver characteristics selected to be as similar as possible to the greatest economic and social need 

indicators described in the Older Americans Act of 1965: older caregiver age, low income, minority 

status, limited English proficiency, and social isolation. The two NFCSP services of interest included 

the number of respite hours the caregiver received per week (range 0-60 hours), and the number of 

educational services the caregiver received or attended in the past 6 months (range 2-33 times).

The analysis found that caregiver SES Need index was not associated with the amount of NFCSP 

respite hours received nor the amount of educational services received. However, when exploring 

individual items related to Caregiver burden, the analysis revealed that NFCSP services were 

reaching the caregivers with more burden. For example, the following caregiver characteristics were 

significantly associated with the receipt of NFCSP respite care: older age, greater caregiving intensity, 

living with CR, CR being a spouse, CR having Alzheimer’s disease or dementia diagnosis, and CR 

resisting aid. 

G. Caregiver and Care Recipient Use of Home and Community-Based 

Support and Services 

Another key evaluation question was to determine if caregivers using NFCSP services also receive 

other home and community-based support (HCBS) and services (e.g., home delivered meals, 

homemaker services, home modifications, legal assistance). There were no differences in receipt of 

the majority of HCBS between NFCSP and non-NFCSP caregivers. The evaluation team found that 

caregivers receiving other HCBS may become aware of and initiate NFCSP respite or educational 

services subsequently, either through discovery on their own or through introduction to the NFCSP 

caregiver services by the organization providing the other HCBS. By comparison, there is no clear 
Outcome Evaluation of the National Family 

Caregiver Support Program xxiii 

 

suggestion that clients may receive other HCBS as a result of initiating NFCSP respite/educational 

services, although in this small sample the data appears to indicate that direction. 

 Conclusion 

The outcome evaluation shows that NFCSP caregiver services are effective in reducing caregiver 

burden and in assisting caregivers to continue caregiving longer. The evaluation also found that the 

NFCSP is targeting caregivers with more caregiver burden. Consistent with other studies focused on 

caregiver services, the findings from this evaluation suggest that the amount of service matters and 

there may be certain amounts of respite care and educational services required to reduce caregiver 

burden. More research is needed to better understand how to determine the ideal amount of NFCSP 

support that makes a difference to improve caregiver outcomes and to increase their longevity as a 

caregiver.
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Caregiver Support Program 1-1 

 

1. Introduction 

1.1 The National Family Caregiver Support Program 

Established via the reauthorization of the OAA by the 106th U.S. Congress in 2000, the Title III-E 

National Family Caregiver Support Program (NFCSP) is a Federal program designed to support the 

needs of family or other informal caregivers as they lend assistance to aging adults, as well as 

grandparents and older relatives caring for minor children or adults with disabilities. The 

overarching goal of the NFCSP is to assist family and informal caregivers to help their loved ones 

remain in their homes and communities as long as possible. 

The NFCSP is administered by the Administration on Aging (AoA) within the Administration for 

Community Living (ACL) of the U.S. Department of Health and Human Services (DHHS). The 

annual appropriation for the program was approximately $180 million in 2018 (Dept. of Health and 

Human Services, 2018). States and territories receive funding based on the proportion of their 

population age 70 and older, and are required to offer the following five core services in partnership 

with Area Agencies on Aging (AAA) and local service providers:

• Information for Caregivers about Available Services. Caregivers can learn about a 

range of supports, resources, and services available. 

• Assistance to Caregivers in Gaining Access to Services. Access assistance helps 

connect caregivers with services offered by private and voluntary agencies.

• Individual Counseling, Support Groups, and Caregiver Training. These services 

help caregivers better manage their responsibilities and cope with the stress of 

caregiving. 

• Respite Care. Trained caregivers provide care for individuals, either at home or at adult 

day care facilities, so that caregivers can rest or attend to their own needs. 

• Supplemental Services. Additional services may include transportation, home 

modifications, and medical equipment. 
Outcome Evaluation of the National Family 

Caregiver Support Program 1-2 

 

The NFCSP assists more than 700,000 caregivers annually (Administration for Community Living, 

2018) in the following groups: 

• Adult family members or other informal caregivers age 18 and older providing care to 

individuals age 60 and older; 

• Adult family members or other informal caregivers age 18 and older providing care to 

individuals of any age with Alzheimer’s disease and related disorders;

• Older relative caregivers (not parents) age 55 and older providing care to children under 

age 18; and

• Older relative caregivers (including parents) age 55 and older providing care to adults 

ages 18 to 59 with disabilities. 

The outcome evaluation described in this report focuses on the first two groups of caregivers. 

1.2 NFCSP Evaluation 

The outcome evaluation represents the second phase of a two-part evaluation of the NFCSP, with a 

specific focus on assessing the program’s impact on caregivers receiving services and the CRs that 

they serve. The first evaluation phase (to finalize the overall evaluation methodology and conduct 

the process evaluation data collection, analysis, and reporting) was completed by The Lewin Group 

in 2016. The process evaluation focused on assessing services provided to caregivers of older adults 

by State Units on Aging, AAAs, and local service providers, and addressed these research questions: 

• How does the program meet its goals? Do caregivers have easy access to a high-quality, 

multifaceted system of support and services that meet caregivers’ diverse and changing 

needs and preferences? What system must be in place to achieve this access?

• Has the program contributed to long-term care system efficiency? How is the NFCSP 

integrated or coordinated with other LTC programs and what is the effect? 

The process evaluation found wide variations in caregiver assessment policies and practices across 

all levels of the NFCSP. The evaluation also found that fewer than half of AAAs use assessment 

data to prioritize who receives services, and concluded that there is room for improvement and for 

standardization among NFCSP AAAs and providers in assessing and reassessing the impact of 

caregiving on the caregiver’s health and well-being (Shugrue et al. 2017). The Process Evaluation 

Final Report is publicly available on the ACL website (The Lewin Group, 2016). 
Outcome Evaluation of the National Family 

Caregiver Support Program 1-3 

 

The second evaluation phase, the outcome evaluation, was conducted by Westat from 2014-2018 

and is the focus of this report. The outcome evaluation focuses on the collection of survey response 

data from a nationally representative sample of NFCSP client caregivers, a matched Comparison 

group of caregivers who did not receive NFCSP services, and a sample of CRs. Survey data collected 

in the outcome evaluation coupled with the data collected during the process evaluation allowed the 

investigation to determine what types of organizational structures, approaches, and strategies to

deliver NFCSP services are associated with optimal participant-level outcomes. Together, the two

phases result in an integrated evaluation that combines process and outcome evaluation information, 

and represent the first evaluation of the NFCSP since the program’s inception. 

1.3 Outcome Evaluation Objectives 

The outcome evaluation provides an understanding of the NFCSP client service outcomes 

associated with a comprehensive and coordinated caregiver services and support system, including 

(but not limited to) stress reduction and maintenance of the care recipient (CR) in the community. 

The primary objective was to assess a series of target outcomes by comparing NFCSP participants to 

non-participants, to determine whether NFCSP caregiver service recipients:

• Cope better with the emotional, physical, and financial challenges of caregiving;

• Feel less depressed, anxious, and stressed due to their caregiving; and 

• Report providing care longer than non-NFCSP caregivers, thus delaying or avoiding the 

need for their CRs to be placed in a nursing home or other institutional care setting. 

The outcome evaluation also seeks to: 

• Help ACL understand which kinds of services are most helpful for caregivers and 

identify any unmet needs of caregivers and gaps in support for them; 

• Identify any NFCSP resources, organizational characteristics, and implementation 

practices that appear to contribute to positive outcomes for caregivers receiving the key 

NFCSP services of respite care and/or caregiver education/training, individual 

counseling, or support groups;5

 and 

 

5 Education/training, individual counseling, and support group services are hereafter referred to as “educational 

services” in this report.
Outcome Evaluation of the National Family 

Caregiver Support Program 1-4 

 

• Assess the impact of services on the ability of caregivers to continue providing homebased caregiving as needed; for example, by examining the relationship between selfreported caregiver measures of mental and physical well-being and the amount of 

caregiver services received.

To achieve these objectives, 1,250 NFCSP client caregivers and a matched Comparison group of 

caregivers not receiving NFCSP services were participated in the evaluation. Survey instruments 

were administered to members of the Program and Comparison groups via telephone interviews at 

three time points: baseline, 6 months after the initial interview, and 12 months after the initial 

interview. While the outcome evaluation focused primarily on the NFCSP’s impact on caregivers, 

the evaluation also included a short survey of the CRs to ascertain awareness and perceived impact 

of NFCSP services on their caregivers. 

An additional objective of the outcome evaluation was to examine the relationship between NFCSP 

client outcomes and key processes and characteristics of the AAAs managing and/or providing 

NFCSP services.

1.4 Evaluation Questions 

The outcome evaluation was designed to help ACL answer the following four key evaluation

questions: 

• Evaluation Question #1 (EQ1). In conjunction with information from the process 

evaluation (conducted in Phase 1), what types of organizational structures and/or 

approaches for NFCSP services are associated with the best participant-level outcomes?

• Evaluation Question #2 (EQ2). Are services reaching the groups targeted by the

OAA, including caregivers serving older adults with greatest social or economic need?

• Evaluation Question #3 (EQ3). To what extent do NFCSP services participants also 

receive other home- and community-based long-term support and services, and what is 

the relationship among these services? 

• Evaluation Question #4 (EQ4). To what extent do NFCSP program participants’ 

outcomes differ from those of caregivers who do not receive support and services from 

the NFCSP?
Outcome Evaluation of the National Family 

Caregiver Support Program 1-5 

 

1.5 Organization of the Report 

The chapters that follow describe the methods used for the data collection and analysis and present 

the results of the outcome evaluation. Chapters 2 and 3 discuss the survey methodology, including 

the survey instrument, sampling, and participant recruitment. Chapter 4 gives an overview of 

analysis methods. Chapter 5 provides descriptive statistics about caregivers’ demographics, service 

use, and other characteristics from the caregiver survey, as well as detailed information about the 

caregivers’ CRs. Chapter 6 explores organizational-level characteristics of AAAs that are associated 

with optimal caregiver outcomes (EQ1). Chapter 7 presents findings about service utilization as it 

relates to the targeted need of specific populations (EQ2), barriers to receiving services, and 

caregivers’ utilization of other non-NFCSP services in addition to NFCSP services (EQ3). Chapter 8 

presents detailed tables describing findings of the comparative analysis of outcomes between 

caregivers receiving NFCSP services and caregivers not receiving NFCSP services (EQ4). Chapter 9 

presents results of the care recipient (CR) survey, and Chapter 10 summarizes the overall findings of 

the outcome evaluation. Throughout the report, there are sections that present results from a 

detailed analysis. These sections end with “What Do These Results Mean?”

The appendices present the survey instruments, methodology, and detailed data tables. Appendix A 

contains the caregiver survey instrument and Appendix B contains the care recipient survey 

instrument. Appendix C includes the detailed methods behind the sampling, recruitment, data 

collection, and analysis. Appendix C also includes lessons learned by the evaluation team during the 

outcome evaluation that may have utility for future evaluation and data collection efforts. The 

remaining appendices present data frequency tables for the caregiver baseline survey (Appendix D), 

additional items in the caregiver 6-month survey (Appendix E), and the care recipient survey 

(Appendix F). 
Outcome Evaluation of the National Family 

Caregiver Support Program 2-1 

 

2. Survey Methodology 

2.1 Survey Instrument Design 

The telephone interview surveys used in the evaluation received clearance from the U.S. Office of 

Management and Budget (OMB) in March 2016 (OMB Control Number 0985-0052). Westat’s 

Institutional Review Board (IRB) provided approval of the Caregiver Outcome Evaluation on 

August 3, 2016. As part of the initial IRB submission, Westat agreed to comply with all necessary 

precautions to ensure the privacy and anonymity of all data collected as a condition of OMB 

clearance and IRB approval. Non-substantive revisions to the survey before the 6-month follow-up 

received clearance from OMB in May 2017.

6

 

2.1.1 Caregiver Survey Instrument 

The caregiver survey instrument was initially developed in 2013 by The Lewin Group, based on 

questions from the following sources: 

• National Survey of Older Americans Act Participants (NSOAAP);

7

• National Health and Aging Trends Study (NHATS)/National Study of Caregiving 

(NSOC); and8

• National Survey of Older Americans Act Participants Performance Outcomes 

Measurement Project (POMP).

9

Initial input for survey development was received from several State Units on Aging and, in 2013, a 

draft of the instrument was submitted to the Federal Register for public comment. A 60-day Federal 

Register Notice was published in the Federal Register Volume 78, No. 224, pages 69683-69684, on 

November 20, 2013. ACL received six sets of comments between November 20, 2013, and 

January 23, 2014, on topics including length and ease of the survey, participants’ privacy, and 

terminology. 

 

6 More detailed information about survey revisions is provided in Appendix C: Evaluation Methodology. 7 Information available at Information available at https://agid.acl.gov/DataFiles/NPS/. 8 Information available at https://www.nhats.org/scripts/QuickLinkNSOC.htm. 9 Information available at https://www.acl.gov/programs/pomp. 
Outcome Evaluation of the National Family 

Caregiver Support Program 2-2 

 

In 2014, Westat enhanced the survey instrument by using a framework for detailing the components 

of caregiving activities and caregiver and CR outcomes (Van Houtven et al., 2011). The caregiver 

survey instrument is in Appendix A. The following briefly describes the sections of the caregiver 

survey instrument. 

 Survey Section A: Use of NFCSP Services for Respite and Educational Services 

The section starts with a screener question; if the person is no longer the primary caregiver, 

additional questions attempt to learn why. Caregivers were asked how long they have been a 

caregiver for the CR. The caregivers were asked about caregiver support service use to understand 

which respite services and educational services a caregiver received from NFCSP in the past 6 

months, from other organizations, or informally. Additional items ask about the helpfulness of 

services through NFCSP and other organizations. 

 Survey Section B: Caregiving Tasks, Frequency, and Intensity 

This section asks about caregiving activities as listed in the NSOAAP. Caregiving intensity is an 

important element of the caregiver experience (Wolff et al., 2016) and scaled response levels make it 

easier to detect change in intensity of caregivers’ activities over time. Therefore, to better measure 

change in outcomes longitudinally, Westat replaced “yes”/”no” responses with a scale. For example, 

responses related to the frequency of caregiving activities are: “daily,” “several times a week,” “once 

a week,” “several times a month,” “once a month,” and “do not provide this help.” 

 Survey Section C: Knowledge and Use of Formal Services Available 

This section includes questions about caregivers’ receipt of support services from any paid agency, 

caregivers’ need for services, and caregivers’ perceptions about whether services help. The items in 

this section, as well as those in Survey Section A, help gauge (1) the extent of caregivers’ receipt of 

NFCSP services and other services and (2) the association between receipt of NFCSP services and 

receipt of other services. This section includes a global question about getting help with caregiving 

and a question about the most helpful caregiver service. 
Outcome Evaluation of the National Family 

Caregiver Support Program 2-3 

 

 Survey Section D: Caregiver Satisfaction and Other Aspects 

This section includes items that measure caregiver burden, satisfaction from being a caregiver, and 

confidence in being a caregiver. These are three of the five key outcomes for the evaluation. For 

example, the NSOAAP found that 88 percent of NFCSP participants reported that receiving

caregiver services help make them a better caregiver (Administration for Community Living, 2017).

Thus, satisfaction and confidence can be considered measurable outcomes associated with a “better” 

caregiving experience. Lastly, this section includes an item about the caregiver’s family beliefs with 

respect to caregiving as mentioned in previous studies (Rozario and DeRienzis, 2008; Aranda and 

Knight, 1997). 

 Survey Section E: Impact of Caregiving (Health, Social, and Financial) 

The items in this section ask about the caregiver’s mental and physical health—two of the five 

outcomes for this evaluation. Stress experienced by caregivers can lead to decline in mental or 

physical health, which in turn can result in the relinquishment of caregiver activities or institutional 

placement of the CR (Pearlin et al., 1990). This section also includes questions about caregiver 

employment and financial status. 

 Survey Section F: Delayed Institutionalization and Continued Caregiving 

This section asks the caregiver whether (1) the services that he/she has received from NFCSP have 

enabled him/her to provide care to the CR for a longer amount of time than if the caregiver had not 

received those services, and (2) the services have influenced whether the CR has been able to remain 

home longer than if they had not been provided. 

 Survey Section G: Caregiver and Household Demographics 

This section includes basic demographic questions about the caregiver. In addition to being 

descriptive of the participants, the data collected about race, ethnicity, income, and years of 

education are also important as covariates for propensity score matching and subpopulation analysis. 
Outcome Evaluation of the National Family 

Caregiver Support Program 2-4 

 

 Survey Section H: Caregiver Health Status and Healthcare Utilization 

This section asks the caregiver about their hospitalizations, emergency department visits, nursing 

facility use, and services from a hospital outpatient department or ambulatory surgical center during 

the past 6 months. One item asks the caregiver about his/her overall health status.

 Survey Section I: Caregiver Report of Care Recipient’s Demographics, Health, 

and Function 

In this section, the caregiver is asked about the CR’s demographics, behaviors, activities of daily 

living (ADLs), chronic disease conditions, and healthcare utilization. This section employs the same 

list of ADLs and instrumental ADLs found in NSOAAP and in NSOC’s chronic disease list. 

2.1.2 Care Recipient Survey Instrument 

Westat developed a brief survey instrument containing a set of questions for the CRs of the

caregivers. The survey included questions about the CR’s well-being (4 items); their perception of 

the importance of having a caregiver, which allows him/her to live at home; and their perception of 

whether his/her caregiver is receiving all the help he/she needs from family, friends, or an 

organization. 

Interviewers asked permission from the NFCSP client caregivers to contact interview their CRs; 

however, 49 percent declined. When the initial call was placed to the CR for the Comparison group, 

the priority of the interview was to collect the information to further contact their caregiver. 

(See Appendix C: Evaluation Methodology for more detail about Comparison group recruitment.) 

The care recipient survey instrument is in Appendix B; baseline frequencies for all care recipient 

survey variables are in Appendix F; and results are reported and discussed in Chapter 9. 

2.2 Telephone Interviewing for Data Collection 

Westat utilized computer-assisted telephone interviewing (CATI) technology to conduct the surveys 

and to collect the response data. To reduce the burden for the respondents, Westat scheduled 

appointments for calls at times that were convenient for respondents. The use of the CATI system 

in combination with Westat’s highly structured telephone interviewer training and procedures 
Outcome Evaluation of the National Family 

Caregiver Support Program 2-5 

 

ensured that interviewers conducted the surveys in a professional, controlled, and consistent 

manner. (More details about Interviewer Training is in Appendix C: Evaluation Methodology.) 
Outcome Evaluation of the National Family 

Caregiver Support Program 3-1 

 

3. Evaluation Participants and Survey 

Implementation 

3.1 Sampling and Recruitment 

To identify a sample of NFCSP clients, the sample design for the evaluation was based on a twostage stratified probability sample of AAA clients who were listed as recipients of NFCSP services. 

The first stage was a stratified sample of AAAs across the nation selected for the 11th NSOAAP 

that took place only months before this evaluation’s first baseline interview.

Table 3-1 shows the agency distribution in the frame and the originally selected sample by Census 

Region. 

Table 3-1. Distributions of agencies in the sample frame and final sample

Census region Number of AAAs in the frame Number of AAAs in the sample 

Northeast 171 85

Midwest 104 62

South 229 108

West 124 61

Total 628 316 

The second stage consisted of a systematic random sampling of NFCSP clients within the 316 

sampled AAAs. The target sample size was set to 22 clients for AAAs that had details about the 

services received by the clients and 27 for AAAs that did not have that detail. In addition, for the 

41 largest AAAs (sampled with probability 1), the targets were adjusted by a function of the measure 

of size of the AAA. To reduce interview burden on individuals, the sampled caregivers from AAAs 

in the 11th NSOAAP were deleted from the evaluation client list so that they could not be sampled 

again as a participant for this evaluation. 

To best measure the effect of NFCSP services on caregiver outcomes, a “Comparison group” of 

caregivers was needed. The Comparison caregivers were identified through their CRs. More 

specifically, response data were used from AAA clients in the 11th NSOAAP who did not receive 

caregiver services (but received the OAA services of case management, homemaker, transportation, 

congregate nutrition, or home-delivered nutrition), and who reported that they needed help with 

ADLs (eating, bathing, dressing, toileting, walking, continence), suggesting that they may have a 

family caregiver.
Outcome Evaluation of the National Family 

Caregiver Support Program 3-2 

 

Figure 3-1 depicts how caregivers and CRs were included as participants in the evaluation.

Figure 3-1. Flow chart of evaluation participants

Table 3-2 shows the three interview timeframes for the evaluation. Westat attempted to interview 

the caregivers three times and the CRs twice. If a caregiver dropped out of the evaluation/study or 

became ineligible, the CR was also removed as an active participant.

Table 3-2. Interview timeframes and brief description of interview process

 Start and end dates 

Who was called for interview from 

the list of AAA NFCSP clients 

Who was called for interview 

from the Comparison group 

Baseline November 21, 2016 – 

January 5, 2017

All listed clients/caregivers. 

Asked permission to interview CR. 

CRs interviewed (if possible) 

and caregiver information 

obtained for caregiver 

interview. 

6-month 

follow-up 

May 22, 2017 – 

July 3, 2017

Caregivers who completed 

baseline.

Caregivers who completed 

baseline.

12-month 

follow-up 

November 27, 2017 – 

January 5, 2018

Caregivers and their consented 

CRs who completed baseline and 

were still eligible.

Caregivers and their consented 

CRs who completed baseline 

and were still eligible.
Outcome Evaluation of the National Family 

Caregiver Support Program 3-3 

 

3.2 Survey Response Rates and Evaluation of Participant 

Retention 

For baseline interviews that took place from November 2016 to early January 2017, the sample 

frame of caregivers called was 6,749. Twenty-five percent (N = 1,659) of the caregiver sample frame 

was ineligible because they told the interviewer that they were not a caregiver. This includes persons 

who may have been a caregiver but the CR was deceased or institutionalized or, in some cases with 

the Comparison group, the called caregiver was a formal “paid” caregiver or home health aide. The 

target number of completed caregiver interviews at baseline was 2,500. The actual number of 

completed caregiver interviews was 1,568, resulting in a completion rate of 63 percent. This was due 

to difficulties in identifying Comparison group caregivers. Table 3-3 provides information about 

baseline response rates and the percentage of caregivers who did not want to participate in the 

evaluation. 

Description of Statistics in Table 3-3 

• In-scope sample frame = the number of individuals in the sample frame minus those 

who were ineligible (i.e., not caregivers).

• In-scope response rate is the number of completed surveys divided by the in-scope 

sample frame. For Comparison CRs, the in-scope response rate is the number of 

individuals who provided caregiver contact information divided by the in-scope sample 

frame of eligible CRs.

• Opt-out rate = the number of individuals who responded during the baseline interview 

period that they did not want to be in the study, divided by the sample frame. This does 

not include individuals who called Westat to opt out after receiving the recruitment 

letter but before the start of the interview period. 

Table 3-3. Baseline in-scope response rates and opt-out rates

Statistic 

AAA-provided NFCSP clients Comparison group 

Caregivers CRs Caregivers CRs 

In-Scope Sample Frame 4,355 532 735 1,626

In-Scope Response Rate 28.8% 61.7% 44.4% 55.0% 

Opt-Out Rate 6.7% 5.5% 7.4% 3.6% 

In total, 1,152 caregivers participated in interviews two or more times. During the 6-month 

interview timeframe, Westat interviewed a total of 1,005 caregivers of the 1,553 who were called. 

During the 12-month interview timeframe, Westat interviewed 794 caregivers, of the 1,231 who 
Outcome Evaluation of the National Family 

Caregiver Support Program 3-4 

 

were called. At either follow-up timeframe, there were 379 caregivers who became ineligible and 

could not take the full survey. 

A pre-notification letter and an information brochure were mailed to potential evaluation

participants before each interview timeframe. Before the 12-month follow-up interviews, Westat 

conducted aggressive tracing efforts to obtain contact information on caregivers who were not 

reached at 6 months. Each remaining caregiver participant was mailed a notification letter and a 

glossy newsletter with feedback on preliminary statistics from the baseline interviews. Also included 

in the letter was a “thank you” magnet for each caregiver. 

More detailed information about sampling, recruitment, response rates, and retention efforts can be 

found in Appendix C: Evaluation Methodology. 
Outcome Evaluation of the National Family 

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4. Analysis Methods 

4.1 Quantifying the Use of NFCSP Services and Group 

Assignment of Caregivers 

To understand the use of NFCSP services, caregivers were asked the following questions with a 

“yes”/”no” response: 

• In the past 6 months, have you received caregiver education, training, counseling, or support group 

services from the provider agency?

• In the past 6 months, have you received respite care from the provider agency?

Each question led with “in the past 6 months” because the two follow-up interviews were done 

approximately 6 months apart and the aim was to capture only the service use after the previous 

interview. When a caregiver said “yes” to one of these questions, the interviewer asked follow-up 

questions about the type of service and how often they received the service. At baseline, the above 

two questions were only asked of NFCSP client caregivers; however, they were asked of all 

caregivers at the 6-month and 12-month interviews. 

At baseline, only 709 of the 1,242 NFCSP client caregivers (57%) said they used NFCSP respite or 

educational services in the past 6 months. Therefore, this evaluation, which required the use of a 

Comparison group, could not use a priori group assignments because the expectation was that 

NFCSP clients would have 100 percent service use. ACL and Westat decided to use responses to 

baseline and 6-month NFCSP service use questions to determine the grouping of caregivers as either 

a “Program” group or a “Comparison” group caregiver. Caregiver responses to these items were 

compared over time and any cases with responses that varied over time were investigated, including 

looking at the last time they received their “most helpful service” and closely reviewing their 

reported respite hours per week or the number of times they used educational services. 

Among the caregivers who completed at least two surveys, 47 percent were assigned to the 

Comparison group because they did not use either service, were unsure about their use of these 

services, or they reported small amounts of service use at only one interview timeframe. About onethird of the original NFCSP client list caregivers were “switched” to the Comparison group. For 

example, at either baseline or 6 months, only 43 percent of the NFCSP client group said “yes” to 
Outcome Evaluation of the National Family 

Caregiver Support Program 4-2 

 

receiving an educational service at either baseline or 6 months; 76 percent said “yes” to respite. The 

remaining caregivers who reported NFCSP service use were assigned to the Program group 

(N = 607). Two caregivers did not fit into either the Program or Comparison group as these two 

caregivers did not use any services at baseline or at 6 months, but had high utilization at the

12-month interview. 

The caregiver grouping was necessary to perform the key evaluation analysis that estimates the effect 

of receiving NFCSP caregiver services on caregiver outcomes. The analysis used a technique called 

difference-in-difference modeling or D-i-D. The first step of the analysis was to match each 

Program caregiver with one or more Comparison caregivers who shared similar characteristics 

related to the propensity of receiving caregiving support, using a technique called propensity score 

matching. The D-i-D analysis included all caregivers who were called at follow-up and remained 

eligible to complete the full survey (Program group = 491 and Comparison group = 417). The

D-i-D results are described in Chapter 8 of this report. 

This evaluation also measured the amount of NFCSP caregiver services received. More specifically, 

information on respite care hours per week was collected with this question: “How many hours per week 

of respite care do you usually receive through this program?” Information on the amount of NFCSP 

educational services received in the past 6 months was collected with these questions: 

1. “In the past 6 months, how many times did you attend an individual caregiver education or training 

session?” 

2. “In the past 6 months, how many individual counseling sessions did you receive?” 

3. “In the past 6 months, how many caregiver support group sessions have you attended?” 

More detail about the service amount calculation can be found in Appendix C: Evaluation 

Methodology. 
Outcome Evaluation of the National Family 

Caregiver Support Program 4-3 

 

4.2 Constructing Key Caregiver Characteristic Variables 

Throughout the evaluation, and especially for the D-i-D analysis (where Program and Comparison 

groups were matched by the propensity to receive caregiver services), the following variables were 

constructed: 

a. Caregiving Intensity. The sum of five ADLs with which the caregiver provided 

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

(bathing), with greater values indicating greater intensity. This measure could also be 

represented as a percentage of the aforementioned five activities.

b. Caregiver Race. Categorical variable capturing whether the caregiver was White, 

Black/African American, or other. Caregivers who reported their race as only White 

and did not select other races were classified as White. Caregivers who reported being 

African American and no other race were classified as Black/African Americans. All 

other caregivers were classified as belonging to “other” racial group, which included all 

other races and individuals who selected multiple racial categories.

c. Caregiver Annual Income. Categorical variable assessing the caregiver’s annual 

income (1 = 11,500 dollars or less; 8 = More than 70,000 dollars). If the annual income 

was missing but monthly income was available, the annual income was supplemented 

with appropriately converted monthly income. 

d. Caregiver Education Level. Binary variable assessing caregiver’s education level (0 = 

Less than HS graduate, 1 = HS graduate or above). 

4.3 Description of Caregiver Outcome Measures 

The caregiver survey collected information about caregivers’ health and well-being, referred to as 

outcome measures in this evaluation. These outcomes were collected at all three data collection 

points: baseline, 6-month follow-up, and 12-month follow-up. Collecting these outcomes at three 

points in time made it possible to observe changes in the outcomes for Program caregivers and 

Comparison caregivers over time. The five outcome measures are self-reported; thus, they are 

subjective and not clinical assessments. Three of the five measures are composite measures, which 

means several items were grouped to make one score. The items comprising the composite 

measures come from nationally known and tested instruments. 

The mental and physical health items are drawn from the Adult Patient Reported Outcomes 

Measurement Information System (PROMIS®) Global Short Form (SF) v1.1 (Hays et al., 2009). 

Funded by the National Institutes of Health, PROMIS is a system of valid and reliable self-reported 
Outcome Evaluation of the National Family 

Caregiver Support Program 4-4 

 

measures of health and well-being.10 PROMIS measure sets are feasible and reliable for tracking 

change in caregiver outcomes (Shin et al, 2018; Carlozzi et al., 2018). The PROMIS Global SF uses a 

5-response scale (from excellent to poor) and provides standardized scoring for mental and physical 

health. 

The PROMIS Mental health score is the sum of four items measuring different aspects of 

caregiver’s mental health on a scale of 1 to 5, with higher scores indicating better mental health. The 

four items include: 

1. Perception of quality of life; 

2. General rating of self-perceived mental health, including mood and ability to think; 

3. Satisfaction with social activities and relationships; and 

4. Frequency of being bothered by emotional problems such as feeling anxious, depressed, 

or irritable.

As shown in Table 4-1, the average composite PROMIS Mental health score was 12.54. The item 

with the lowest mean score was Satisfaction with social activities and relationships. 

Table 4-1. Baseline means for PROMIS Mental health score and individual components 

Measure Mean (SD) (N = 1,568) 

PROMIS Mental health score 12.54 (3.34)

Mental health rating 3.26 (0.98)

Quality of life rating 3.01 (1.04)

Social activities rating 2.82 (1.10) 

Frequency of emotional problems 3.45 (1.07)

The PROMIS Physical health score is the sum of four items assessing different aspects of 

caregiver’s physical health on a scale of 1 to 5, with higher scores indicating better physical health. 

Items include: 

1. General rating of physical health; 

2. Perceived ability to carry out everyday physical activities such as walking, climbing stairs, 

carrying groceries, or moving a chair; 

3. Average fatigue rating; and

 

10Surveys available at http://www.healthmeasures.net/explore-measurement-systems/promis. 
Outcome Evaluation of the National Family 

Caregiver Support Program 4-5 

 

4. Average pain rating.

Table 4-2 shows that the average composite PROMIS Physical health score was 14.13. The lowest 

scoring item was the General rating for physical health.

Table 4-2. Baseline means for PROMIS Physical health score and individual components

Measure Mean (SD) (N = 1,568) 

PROMIS Physical health score 14.13 (3.15)

Physical health rating 2.99 (1.04)

Physical activities rating 4.02 (1.07)

Pain rating 3.66 (1.07)

Fatigue rating 3.44 (0.92)

To measure Caregiver burden, the evaluation used a 4-item version of the Zarit Burden Inventory 

(ZBI). In 1980, Dr. Steven Zarit developed the ZBI to measure caregiver subjective perceptions of 

burden among ethnically diverse populations (Zarit et al., 1980). ZBI items are assessed on a 5-point 

Likert scale, with higher scores indicating greater burden. In 2001, a 4‐item version of ZBI was 

found to correlate well with the full 22‐item version. The widely used, simple, 4‐item screen has 

proven to be valid and reliable (Bedard et al., 2001). 

For this measure, a lower score is better and the score can range from 4 to 20. The questions 

include: 

1. Do you feel that because of the time you spend with the care recipient, you don’t have 

enough time for yourself? 

2. Do you feel stressed between caring for the care recipient and trying to meet other 

responsibilities (work/family)?

3. Do you feel strained when you are around the care recipient?

4. Do you feel uncertain about what to do about the care recipient? 

As shown in Table 4-3, the average self-reported Caregiver burden was 10.70. The item with the 

highest mean score associated with more burden was Feeling stressed between caregiving and 

meeting other responsibilities. 
Outcome Evaluation of the National Family 

Caregiver Support Program 4-6 

 

Table 4-3. Baseline means for Zarit Caregiver Burden score and individual Zarit Burden 

Inventory components

Measure Mean (SD) (N = 1,568) 

Zarit Burden score 10.70 (3.48)

Time for self 2.98 (1.18)

Feeling stressed 3.07 (1.18)

Feeling strained 2.40 (1.12)

Feeling uncertain 2.24 (1.06)

Caregiver satisfaction was collected through a single item measuring the caregiver’s level of 

agreement with the following statement: “I get a great deal of satisfaction from being a caregiver.” Responses 

ranged from 1 for “strongly disagree” to 5 for “strongly agree.” The baseline mean Caregiver 

satisfaction score was 3.86. 

Caregiver confidence was also collected through a single item that asked “Overall, how would you rate 

your confidence as a caregiver?” Responses ranged from 1 for “not at all confident” to 5 for “very 

confident”. The baseline mean Caregiver confidence score was 4.45. This high level of confidence 

may stem from the fact that only 4 percent of the caregivers had less than 1 year of caregiving 

experience.
Outcome Evaluation of the National Family 

Caregiver Support Program 5-1 

 

5. Descriptive Statistics from the Caregiver Survey 

5.1 Caregivers 

Baseline frequency tables of all items asked in the Caregiver Survey can be found in Appendix D. 

The sections that follow present descriptive statistics about the caregivers who participated in the 

evaluation. 

5.1.1 Baseline Caregiver Demographics 

A total of 1,568 caregivers participated in this evaluation. The caregivers resided in 43 different 

states in the U.S. The seven states with the most representation are Florida (130 caregivers), 

Massachusetts (102), Ohio (100), California (84), Georgia (74), Washington (73), and Texas (70). The 

distribution of states is in Appendix D. Only 11 percent of the caregivers lived in a zip code 

categorized as rural.

As shown in Figure 5-1, most of the caregivers were either the spouse or an adult child of the CR. 

Among the 689 child caregivers, the majority (79%) were a daughter or a daughter-in-law. 

Figure 5-1. Caregiver relationship with CR

43%

44%

13% Spouse

Child (including inlaws)

Other (Sibling,

Grandchild, Niece,

Nephew, Friend)
Outcome Evaluation of the National Family 

Caregiver Support Program 5-2 

 

Adult child caregivers were asked “Does this statement fit your belief: ‘You were chosen by your family as a child 

to provide care for all your family members’?” Twenty-nine percent said “definitely true,” 25 percent 

answered “somewhat true,” 10 percent answered “somewhat false,” and 37 percent answered 

“definitely false.” 

As shown in Figure 5-2, the majority of the caregivers were between the ages of 55 and 74. The 

mean age was 66, and 55 percent were age 65 or older. 

Figure 5-2. Distribution of caregiver age (N = 1,568)

5%

11%

29% 30%

20%

5%

Less than 45 45–54 55–64 65–74 75-84 85 and over

Age in years 

Caregiver Age Category

Seventy-nine percent of caregivers were White, 17 percent Black, and 4 percent other. At baseline, 

the interview was conducted in Spanish for 37 caregivers (2.4%). 

5.1.2 Caregiving Tasks, Frequency, and Intensity 

Table 5-1 shows the tasks that the caregivers perform to help the CRs. At least half of the caregivers 

helped CRs on a daily basis with activities, such as preparing meals (74%); taking medicine (64%);

doing laundry or cleaning the house (54%); and keeping track of bills, insurance issues, or other 

financial matters (50%). Many of the caregivers helped with getting dressed (45%) and mobility 

(44%) on a daily basis. Thirty-six percent of the caregivers helped with eating on a daily basis. 
Outcome Evaluation of the National Family 

Caregiver Support Program 5-3 

 

Table 5-1. Frequency of caregivers’ help with care recipients’ activities

Activities Daily 

Several 

times a 

week 

Once a 

week 

Several 

times a 

month 

Once a 

month 

None of 

the time 

Medical or Health Care 

Taking medicine, giving 

shots, using monitors or 

meters

64.2% 3.5% 4.4% 2.4% 1.3% 24.2%

Wound care, including 

ostomy care and changing 

bandages

14.7% 3.4% 2.1% 2.5% 4.0% 73.3% 

Medical equipment such as 

dialysis or ventilators

9.2% 2.1% 0.5% 0.5% 0.7% 87.0%

Setting up health care 

appointments and speaking 

with doctors or other 

providers

26.3% 10.6% 7.3% 23.0% 19.5% 13.4%

Personal Care

Dressing 45.0% 13.1% 3.2% 3.7% 2.7% 32.0%

Eating 36.3% 5.4% 1.1% 1.1% 0.5% 55.6%

Toileting 32.7% 4.8% 0.8% 1.4% 1.0% 59.2%

Bathing or Showering 21.5% 19.4% 7.9% 2.9% 1.5% 46.8%

Mobility

Mobility, such as walking, 

getting out of bed, or 

standing up from a sitting 

position

43.9% 15.1% 3.7% 6.0% 3.7% 27.6%

Transportation

Local trips, such as going 

shopping or to the doctor’s 

office

21.0% 29.0% 15.0% 8.0% 10% 8.0%

Other

Preparing meals 74.0% 8.5% 2.2% 2.8% 1.2% 11.0%

Doing laundry or cleaning 

the house

54.0% 20.0% 9.4% 3.6% 1.7% 11.6%

Keeping track of bills, 

insurance issues, or other 

financial matters

49.9% 11.2% 5.2% 9.9% 9.5% 14.3%

Arranging for care or 

services provided by others

22.0% 14.0% 10.0% 12.4% 10.7% 31.1% 

Following the questions about activities, the caregivers were then asked “Which one activity do you

consider to be the most difficult for you to perform?” Figure 5-3 shows the frequency of the top twelve 

responses to the most difficult activity to perform. The caregiving activities deemed most difficult 

were bathing/showering and helping the CR with mobility. 
Outcome Evaluation of the National Family 

Caregiver Support Program 5-4 

 

Figure 5-3. Response frequencies to most difficult caregiving activity to perform

2.50%

3.00%

3.85%

3.85%

3.93%

4.36%

6.33%

8.04%

8.64%

12.75%

17.88%

18.91%

0% 2% 4% 6% 8% 10% 12% 14% 16% 18% 20%

Other

Arranging care or service provided by others

Getting dressed

Health-care appointments

Taking medicine and monitoring activities

Financial matters

Laundry or house cleaning

Preparing meals

Using the toilet

Local trips and shopping

Mobility (walking, getting up, etc.)

Bathing or showering

Most Difficult Activity to Perform

5.1.3 Caregiving Hours and Perceived Difficulty 

Caregivers were asked about the hours that they spend helping their CR on a daily basis. The mean 

was 8.6 hours on a typical weekday, and 9.0 hours on a typical weekend. Caregivers were asked “In 

the last month, how often did helping care recipient cause your sleep to be interrupted?” Frequencies were: 

13.2 percent “every day,” 9.9 percent “most days,” 28.2 percent “some days,” 26.5 percent “rarely,” 

and 22.2 percent “never.” 

Caregivers were asked two items about their perceived difficulty of caregiving. Each of these items 

had a 4-item response option scale, where 1 was “not at all difficult,” 2 was “a little,” 3 was

“somewhat,” and 4 was “very difficult.” The mean responses are shown in Table 5-2. 

Table 5-2. Perceived difficulty of caregiving

 Mean 

% Very 

difficult 

How physically difficult would you say that caring for care recipient is for you? 2.2 7.3 

How emotionally difficult would you say that caring for care recipient is for you? 2.4 15.7
Outcome Evaluation of the National Family 

Caregiver Support Program 5-5 

 

5.1.4 Impact of Caregiving on Employment Situation 

Caregivers were asked questions about their employment status and out-of-pocket financial 

demands associated with caregiving. The first question asked of all caregivers was “Are you currently 

working for pay either full time or part time?” At baseline, among the 1,568 caregivers, 468 (30%) said 

“yes.” On average, this group of 468 working caregivers worked 33 hours per week. Of the 1,100 

caregivers who said “no” to currently working, 2.3 percent said they never work and 97.3 percent

said they stopped working (of which 6.5 percent said they stopped working within the past year and 

90.8 percent said they stopped working over a year ago). 

Of the 1,066 caregivers who stopped working within the past year or over a year ago, 27 percent said 

they stopped because of caregiving. Among caregivers who worked in the past year, three follow-up 

questions were asked about how caregiving impacted their employment. The responses to these 

follow-up questions are shown in Table 5-3. Two-thirds of working caregivers responded that 

caregiving caused them to go to work late, leave early, or take time off during their workday. 

Table 5-3. Follow-up caregiver employment questions

Question Who was asked Number asked % Yes 

Did you stop working because of caring for 

care recipient?

Those who answered that they 

stopped working at any time.

1,066 27.1 

As a result of your caregiving 

responsibilities, did you have to go in late, 

leave early, or take time off during the day 

to provide care?

Those who said they were 

working for pay in the past 

year or stopped working in the 

past year.

539 63.7 

As a result of your caregiving 

responsibilities, did you have to take a 

leave of absence?

Those who said they were 

working for pay in the past 

year or stopped working in the 

past year.

539 16.0 

As a result of your caregiving 

responsibilities, did you have to reduce 

your regular work hours, or take a less 

demanding job?

Those who said they were 

working for pay in the past 

year or stopped working in the 

past year.

539 24.9 

Ninety-two caregivers also indicated that there was “other” impact on their employment. The two 

most common text responses for “other” impacts to employment were lower income and a negative 

impact on their work performance. 
Outcome Evaluation of the National Family 

Caregiver Support Program 5-6 

 

5.1.5 Caregiving Financial Impact 

Caregivers who were not a spouse were asked about money they spent for the CR in the last year. As 

shown in Table 5-4, almost one-third of non-spousal caregivers spent their own money to purchase 

medications or pay for health care services for their CR. About one-fourth of caregivers had to pay 

for home improvements, and one-fifth paid to obtain an in-home helper. 

Table 5-4. Non-spouse caregiver questions about money spent

Question asked of non-spouse caregivers (N = 890) % Yes 

Have you used your own money to pay for CR’s medications or medical care? 32.4 

Have you used your own money to pay for CR’s Medicare premiums or copayments, or other 

insurance premiums and copayments?

13.0 

Have you used your own money to pay for mobility devices for CR such as a walker, cane, or 

wheelchair?

14.1 

Have you used your own money to pay for things that made CR’s home safer, such as a railing 

or a ramp, grab bars in the bathroom, a seat for the shower or tub, or an emergency call 

system?

30.9

Have you used your own money to pay for any other assistive devices for CR that make it 

easier or safer for him/her to do activities on his/her own?

18.3 

Have you used your own money to pay for an in-home helper for CR? 19.6

Lastly, all 1,568 caregivers, including spouses, were asked the following question “How financially 

difficult would you say that caring for the care recipient is for you?” Response options were ”not very difficult” 

(1), ”a little difficult” (2), ”somewhat difficult” (3), and ”very difficult” (4). The mean response was 

1.86, indicating that, on average, caregivers felt that caring for the CR was “not very difficult” to “a 

little difficult.” Only 9 percent said it was “very difficult.” 

5.1.6 Caregiver Healthcare Utilization 

Maintaining healthy caregivers is critical in supporting CRs in the community. To determine their 

use of healthcare facilities potentially involving an extended time away from caregiving, caregivers 

responded to four questions about their use of healthcare facilities in the past 6 months. For 

example: “During the past six months did you have to go to the emergency department?” As shown in Table 5-5, 

at baseline, relatively few caregivers stayed in a hospital (10%) or skilled nursing facility (1%). 

Twenty percent of the 1,568 caregivers said they had to go to the emergency department and 

another 20 percent said they had to go to an outpatient hospital department or an ambulatory 

surgical center.
Outcome Evaluation of the National Family 

Caregiver Support Program 5-7 

 

Table 5-5. Caregivers’ use of healthcare facilities during the past 6 months

Facility Number Percent 

Hospital 161 10.3

Skilled Nursing Facility 16 1.0 

Emergency Department 307 19.6

Hospital Outpatient or Ambulatory Surgical Center 317 20.2

5.1.7 Why Caregivers Stopped Caregiving 

Caregivers may stop caregiving for various reasons. At the start of each follow-up interview, if a 

caregiver said they were no longer the caregiver for the stated CR, the interviewer attempted to learn 

why. There were 1,154 caregivers who had a follow-up interview at 6 months and/or 12 months. 

As shown in Table 5-6, 67 percent of the caregivers were still caregiving at the time of their last 

survey response (either 6 month or 12 month). Of those caregivers who were no longer caregiving 

and who provided a reason for stopping, one-third stopped caregiving mainly because of the CR’s 

death or the CR’s placement in a long-term care facility (also called “institutionalization”). 

Table 5-6. Follow-up caregiving status and reasons for not still caregiving

 Number Percent 

Still Caregiving 775 67.2

No Longer Caregiving

CR’s death 149 12.9

Institutionalization 91 7.8 

No longer care needed 9 0.8 

Someone else caregiver 23 2.0 

Other reason/Don’t Know/Refused 19 1.6 

Unknown/Non-response 88 7.6 

5.1.8 Caregiver Satisfaction and Enjoyment 

The survey instrument included a series of items on satisfaction with caregiving and the caregivers’ 

perceptions of the extent to which CRs appreciated the care provided. Figure 5-4 shows the results 

of responses to the statement: “I get a great deal of satisfaction from being a caregiver.” Slightly over 

70 percent of the respondents “strongly agreed” (28%) or “agreed” (44%) with the statement. 
Outcome Evaluation of the National Family 

Caregiver Support Program 5-8 

 

Figure 5-4. Response frequencies to getting a great deal of satisfaction from caregiving

Strongly Agree, 27.8%

Agree, 44.0%

Neilther Agree 

nor Disagree, ...

Disagree, 7.6%

Strongly 

Disagree, 2.8%

Neither Agree

nor Disagree,

17.8%

Caregivers also reported that helping CRs gave them satisfaction that the CR was well cared for. 

Eighty-four percent responded “very much,” 15 percent responded “somewhat,” and only 1 percent 

responded “not so much.” As shown in Table 5-7, over 70 percent of the caregivers enjoyed being 

with the CR, and over 70 percent also reported that, from their perspective, their CR appreciated 

what was done for him/her. 

Table 5-7. Enjoyment of caregiving and perspective of care recipients’ appreciation

Question A lot Some A little Not at all 

How much do you enjoy being with the care recipient? 72.3% 21.7% 4.6% 1.4%

How much does the care recipient appreciate what you do 

for him/her?

75.0% 15.7% 6.1% 3.6%

5.1.9 Caregivers’ Use of Caregiver Support – All Sources 

This section shows the results of survey questions about caregiver use of support services and the 

help they get for caregiving activities from members of the community, family, and private-pay 

home health aides. At baseline, all 1,568 caregivers were asked “Do you have anyone who helps you with 

your caregiving activities for care recipient? This help could be paid assistance or help from a family member or friend. 

Sixty-eight percent (1,065) said “yes.” 

As shown in Table 5-8, of those 1,065 caregivers, 88 percent said they receive the help from family 

members, friends, or neighbors, 49 percent said they receive help from an agency, private provider 
Outcome Evaluation of the National Family 

Caregiver Support Program 5-9 

 

or housekeeper, and 13 percent received help from volunteers from a place of worship. These 

responses are not mutually exclusive, meaning that a person could have said “yes” to more than one 

source type. 

Table 5-8. Help with caregiving activities by source type

Source type Number Percent 

Family members, friends, or neighbors 936 88.0

Agency, private provider, or housekeeper 523 49.4

Volunteers from a house of worship 142 13.4

These results show that the majority of caregivers rely on their family members, friends, or 

neighbors for help with caregiving activities. The 12-month evaluation was too short to allow for 

examining patterns or exploring the trajectory of support sources among caregivers.

5.1.10 Caregivers’ Use and Perceived Helpfulness of NFCSP Respite Care 

Early in the telephone interview with the caregivers, the following statement was read to all NFCSP 

client caregivers, with {Agency} being the name of their specific AAA and with the name of their 

CR replacing {care recipient}.

“I’d like to ask you some questions about the Family Caregiver services that you receive from {Agency}. These are 

services that help you provide care at home for {care recipient}. For example, caregiver services can be:

• Information about available services;

• Assistance in accessing supportive services;

• Individual counseling, support groups, and education/training to assist you in making decisions and 

solving problems relating to your caregiving role; 

• Respite care to temporarily relieve you from your caregiving responsibilities; and

• Supplemental services such as home modifications; nutritional supplements; assistive devices such as 

walkers, canes or crutches; emergency response systems; specialized equipment, such as CPAP, apnea 

machines, hospital bed, WanderGuard, or receiving a voucher, money, or stipend.

The caregivers were asked “For how long have you been receiving caregiver support services from {NFCSP 

Agency}?” In the question, {NFCSP Agency} was customized with the name of the caregiver’s AAA 

and also a provider, if known. The mean number of years receiving NFCSP support was 2.6 years 

with a minimum of 1 week to a maximum of 12 years. At baseline, this question and those that 
Outcome Evaluation of the National Family 

Caregiver Support Program 5-10 

 

followed in this section were only asked among NFCSP client caregivers; comparison caregivers 

were not asked these questions. 

Next, the NFCSP client caregivers were asked if they received respite care from their AAA. The 

percent of the caregivers who said “yes” to using respite was 42.5 percent and the percent who said 

“don’t know” was 14 percent. When a caregiver responded “yes,” he/she was asked what type of 

respite care he/she received. Table 5-9 shows the percentage of the 522 caregivers who received 

each type of NFCSP respite care service at baseline. Most caregivers received respite care in their 

homes. 

Table 5-9. Frequency of caregivers’ use of NFCSP respite care

Question % Yes 

In-home respite, where someone comes into the home to care for the CR* 82.8

Adult daycare, where the CR goes to a facility for care during the day* 20.7

Overnight respite care in a facility* 2.6 

Overnight respite care in the home* 8.8 

* Item only asked among the 522 caregivers (42.5%) who said “yes” to using respite care from the Agency.

Caregivers who answered “yes” to receiving respite care were asked “How many hours per week of respite 

care do you usually receive through this program?” Unfortunately, among the 522 caregivers who were asked 

this question at baseline, only 475 provided their hours. Among the responders, the mean number of 

NFCSP respite hours was 9.2 hours per week.

After the question about the number of hours of respite received, the caregivers were asked “How 

helpful are the respite services from {Agency} to you as a caregiver?” and were provided four response options. 

Among the 522 asked, 449 (86%) said “very helpful,” 64 (12%) said “somewhat helpful,” five (1%) 

said “somewhat unhelpful,” one said “not at all helpful,” and three replied “don’t know.” Those 

who used NFCSP respite care perceived the service to be helpful, as 98 percent said the service was 

helpful. 

5.1.11 Caregivers’ Use and Perceived Helpfulness of NFCSP Educational 

Services 

Caregivers were also asked about their use of NFCSP educational services. At baseline, the 

percentage of NFCSP client caregivers who said “yes” to using educational services was 24.1 percent 

and less than 1 percent said “don’t know.” When the caregivers responded “yes,” they were asked
Outcome Evaluation of the National Family 

Caregiver Support Program 5-11 

 

which type of service they received. Table 5-10 shows the percentage of the 297 caregivers who 

utilized each service type. The most used service type was support groups followed by 

education/training. 

Table 5-10. Type of NFCSP educational service in the past 6 months

Question* % Yes 

Caregiver education or training such as classroom or online courses from {Agency} 36.1

Individual counseling sessions at the {Agency} to assist with your specific caregiving 

situation

23.6

Any caregiver support groups at the {Agency} 51.5

* Items only asked among the 297 caregivers (24.1%) who said “yes” to using educational services from Agency.

Caregivers who answered “yes” to receiving one of the educational services were asked how many 

times they attended a session in the past 6 months. Table 5-11 shows the reported amount of 

educational services used by NFCSP client caregivers at baseline.

Table 5-11. Amount of use of NFCSP educational services

Type of Educational Service (# asked) 

Times attended among those who said they used 

the service in the past 6 months 

1-3 4-6 7-9 10 or more 

Caregiver education or training (107) 51.9% 30.2% 7.6% 10.4%

Individual counseling (70) 64.7% 19.1% 2.9% 13.2%

Support group (153) 29.6% 46.7% 7.9% 15.8%

The majority of those who attended a support group went more than 3 times. In contrast, education 

and counseling were more likely to be attended only 1-3 times. 

After the questions about the amount of use of NFCSP educational services, caregivers were asked 

“How helpful are these services from {Agency} to you as a caregiver?” Among those who provided an amount 

of use response, 164 (74%) said “very helpful,” 55 (25%) said “somewhat helpful,” two (1%) said 

“somewhat unhelpful,” one said “not at all helpful,” and three replied “don’t know.” Caregivers who 

used NFCSP educational services perceived them to be helpful, as 99 percent said these services 

were helpful. 
Outcome Evaluation of the National Family 

Caregiver Support Program 5-12 

 

5.1.12 Length of Caregiving by Caregiver Characteristics 

The evaluation team analyzed the relationship between caregiver characteristics and the length of 

time that they said they had been a caregiver. In the beginning of the survey, after a caregiver said 

“yes” to still being a caregiver, the interviewer asked: “How long have you been the caregiver for 

{care recipient}?” At baseline, the average was 7 years. Figure 5-5 displays the frequency of caregiving 

years in four categories.

Figure 5-5. Prior caregiving years by four categories

4.5%

42.6%

30.6%

22.3%

0%

5%

10%

15%

20%

25%

30%

35%

40%

45%

< 1 year 1 to < 5 years 5 to < 10 years 10+ years

PERCENT OF CAREGIVERS

NUMBER OF YEARS CAREGIVING

At baseline, 55 percent of the Program caregivers (who said they used NFCSP services) reported 

that they had been a caregiver for 5 or more years. In comparison, 50 percent of the Comparison 

caregivers reported 5 or more years. Not surprisingly, older caregivers and spouse caregivers 

reported longer years of caregiving than younger caregivers and non-spouse caregivers, respectively.

5.1.13 Caregiver Need for Help 

Regardless to the source of support, all caregivers were asked: As {care recipient}’s caregiver, are you 

receiving all the help that you need? This question was also asked of each care recipient. As displayed in 

Figure 5-6, the caregivers’ responses at baseline were: 22 percent “no, definitely not,” 21 percent 

“no, probably not,” 18 percent “not sure,” 21 percent “yes, probably,” and 17 percent “yes, 

definitely.”
Outcome Evaluation of the National Family 

Caregiver Support Program 5-13 

 

Figure 5-6. Caregiver responses to “Are you receiving all the help that you need?” (N = 1,568)

Yes, definitely

17%

Yes, probably

21%

Not sure

18%

No, probably not

21%

No, definitely not

22%

The evaluation team examined the relationship between these response categories and Caregiver 

burden. As shown in Figure 5-7, the mean Zarit Caregiver burden score is highest/worst among 

caregivers that said “no, definitely not” and lowest/best among the caregivers who said “yes, 

definitely” to receiving all the help that he/she needs. 

Figure 5-7. Mean Zarit Caregiver burden score plotted by receiving all the help response

12.0 11.7

10.4

10.0

8.4

6

7

8

9

10

11

12

13

Definitely, Not

(n=346)

Probably, Not

(n=330)

Not Sure

(n=277)

Probably, Yes

(n=330)

Definitely, Yes

(n=263)

Zarit Burden Score

Receive all help that you need?
Outcome Evaluation of the National Family 

Caregiver Support Program 5-14 

 

The figure above shows a trend between Caregiver burden and the perception of receiving all the 

help a caregiver needs. However, since other factors can be associated with a caregiver’s response to

having all the help they need, the evaluation team analyzed the relationship between Caregiver 

burden and having all they help they need using a multivariable model to control for other factors 

that may influence the response. Those factors include CR age and the following caregiver 

characteristics: urban/rural, age, gender, race/ethnicity, relationship with CR, caregiving years, 

caregiving intensity of five ADLs, employment status, annual income, education level, caring for any 

children under 18 years of age, caring for any other adults age 60 and older, and lives with CR.

As shown in Table 5-12, the adjusted mean burden score for those who responded “Definitely not” 

when asked if they were receiving all the help they needed was significantly different from those who 

had other responses. For example, caregivers with a “Definitely yes” response reported a lower

burden score by 3.44 than the caregivers who responded “definitely not,” holding other 

characteristics in the model constant (p < 0.001).

11

Table 5-12. The effect of perception of receiving all the help needed on Caregiver burden score

Received all help? 

Regression estimates for Caregiver burden 

Effect Estimate (B) Standard error P-value 

Definitely not (reference category) 

Probably not -0.51 0.240 0.034

Not sure -1.33 0.252 < 0.001

Probably yes -2.08 0.244 < 0.001

Definitely yes -3.44 0.260 < 0.001

 What Do These Results Mean? 

Self-reported Caregiver burden is higher among caregivers who feel as though they are not receiving 

all the help they need. Unfortunately, this evaluation was unable to measure causation. For example, 

does more burden make a caregiver feel as though they need more help, or does not having all the 

help they need increase their burden? Is the burden highest when a caregiver first starts caregiving or 

does the burden increase as both the caregiver and CR age? This highlights the need to better 

understand the relationship between caregiver burden trajectory and caregiver need for help. 

 

11In this report, statistical significance level is set at 0.05. This means that any statistical test results with p-values less 

than 0.05 are considered to be statistically significant. Throughout the report, a single asterisk (*) indicates p < 0.05, a 

double asterisk (**) indicates p < 0.01, and triple asterisk (***) indicates p < 0.001. More detail is available in Appendix 

C: Evaluation Methodology.
Outcome Evaluation of the National Family 

Caregiver Support Program 5-15 

 

Nevertheless, this analysis shows that these two measures—the 4-item ZBI and a question about 

receiving needed help—are related and can be used to understand the support needs of caregivers. 

 Caregiver and Care Recipient Responses 

For those CRs who had both baseline and 12-month data (N = 206), the evaluation team compared 

the CR and the caregiver responses to the question about if the caregiver is receiving all the help 

he/she needs. As shown in Figure 5-8, at baseline, more caregivers than CRs said that the caregiver’s 

support needs are not being met (17.3% versus 8.5% for “no, definitely not,” and 17.3% versus 

12.0% for “no, probably not”). Conversely, only 19.8 percent of caregivers said their support needs 

are definitely being met versus 33.0 percent of CRs who said the same about the caregivers. The 

differences for the “not sure” category and the “yes, probably” category were relatively small. These 

differences in responses were statistically significant between the caregivers and their CRs 

(chi-squared statistic = 29.36, p = 0.0216). The results for 12-month responses were similar (not 

shown). 

Figure 5-8. Comparison of responses for caregiver receives all help needed response between 

caregivers and care recipients at baseline

17.3% 17.3%

19.8%

25.7%

19.8%

8.5%

12.0%

22.0%

24.5%

33.0%

0.0%

5.0%

10.0%

15.0%

20.0%

25.0%

30.0%

35.0%

40.0%

45.0%

50.0%

No, definitely not No, probably not Not sure Yes, probably Yes, definitely

Percent

Caregiver Receives All Help Needed (Baseline)

Caregiver Care recipient
Outcome Evaluation of the National Family 

Caregiver Support Program 5-16 

 

 What Do These Results Mean? 

Based on these findings, the CRs and caregivers view caregiver needs differently. Within the dyads, 

17 percent of the caregivers perceived that they were “definitely not” receiving all the help they 

need, but only 8.5 percent of the CRs responded that way. 

5.2 Care Recipients 

This section reports the information collected from caregivers about their CRs. 

5.2.1 Care Recipient Demographics and Functioning 

Caregivers provided basic demographics about their CRs as shown in Table 5-13. During the 

interview, the CR’s first name was used within the questions. The mean CR age was 81 years old, 

ranging from a minimum age of 58 to a maximum age of 105. 

Table 5-13. Care recipient characteristics

Characteristic % Yes 

Female Gender 61.2

Marital Status 

Married 49.6

Widowed 37.2

Divorced 8.1 

Never Married or Separated 4.2 

Race 

White 78.3

Black or African American 16.7

Other 3.1 

American Indian or Alaska Native 2.9 

Asian 2.2 

Pacific Islander 0.3 

Hispanic or Latino Origin 8.8 

Veteran 19.8

Early in the interview, all caregivers were asked about the activities they performed to help their 

CRs. Later in the interview, if a caregiver did not say that they helped the CR with an activity, they 

were asked about the CR’s need for assistance in performing some common activities of everyday 

life. Table 5-14 shows responses to questions about CR’s difficulties in performing ADLs and if the 

caregiver provided help with each activity.
Outcome Evaluation of the National Family 

Caregiver Support Program 5-17 

 

Table 5-14. Care recipient activities that require help

CR Activity 

Caregiver 

provides help 

(%) 

Caregiver does not 

provide help, but 

CR has difficulty 

with the activity (%) 

Getting around inside the home 71.6 5.7 

Going outside home (examples: to shop or visit a doctor’s office) 71.6 2.0 

Getting in or out of bed or a chair 71.6 5.0 

Taking a bath or shower 52.9 19.1

Getting dressed 67.4 5.3 

Walking (help beyond using a walker or cane) 71.6 5.3 

Eating 44.2 2.0 

Using the toilet or getting to the toilet 40.4 7.6 

Keeping track of money or bills 84.1 4.5 

Preparing meals 89.0 3.8 

Taking prescribed medicines 75.7 6.6 

As shown in Table 5-14, helping the CR bathe or shower seems to be a caregiving activity that may 

be too difficult or too private for the family caregiver, as almost 20 percent of the caregivers 

responded that help was needed but they do not provide the assistance. 

5.2.2 Care Recipient Health Conditions, Behaviors, and Hospitalizations 

All caregivers were asked about diseases that the CR may have. The interviewer said “Has a doctor ever 

told you or CR that he (or she) had...” and then read a list of diseases or conditions. Table 5-15 lists the

reported conditions in descending frequency. 

Table 5-15. Diseases or conditions of care recipients at baseline

Conditions told by a doctor % Yes* % Don’t know 

Arthritis 67.4 1.5 

Any other disease or condition such as liver disease, kidney disease, high 

blood pressure, or a mini-stroke 66.6 0.8 

Alzheimer’s disease, dementia, or other type of memory problem 52.2 0.4 

Serious difficulty hearing 39.2 0.5 

Serious difficulty seeing 34.2 0.7 

Osteoporosis or thinning of the bones 34.1 3.6 

Other heart disease, including angina or congestive heart failure 33.9 1.8 

Diabetes 33.0 0.6 

Lung disease such as emphysema, asthma, COPD, or chronic bronchitis 24.7 0.7 

Cancer 26.4 0.8 

Heart attack or myocardial infarction 24.0 1.5 

* This is the percent of valid “yes” or “no” responses. “Don’t know” is not considered a valid response.
Outcome Evaluation of the National Family 

Caregiver Support Program 5-18 

 

The table above shows the percentages of “don’t know” responses because more than 1 percent of 

caregivers seemed to have difficulty in reporting if their CR had arthritis, osteoporosis, or a heart 

condition. Over half of the caregivers had a CR with Alzheimer’s or dementia. Similar to national 

caregiver statistics (e.g., Reinhard at al., 2014), the majority of the CRs had multiple chronic physical 

and cognitive conditions that required complex care by the caregivers. 

All caregivers were asked questions about their CR’s behavior that could impact the complexity of 

the caregiving situation. The interviewer led with “Does CR display any of the following behaviors?”

Table 5-16 shows the five behaviors and the baseline “yes” percentages. These behavior questions 

were asked of all caregivers, not just those who had a CR with Alzheimer’s disease or dementia. As 

shown in Table 5-16, almost one-third of the 1,568 caregivers said they had a CR who resists aid.

Table 5-16. Items about care recipient behavior

Question % Yes 

Does he/she yell? 29.7

Does he/she moan frequently? 25.5

Does he/she resist your attempts to provide aid? 30.4

Does he/she hit or bite you? 8.1 

Does he/she wander or get lost? 17.1

Lastly, caregivers were asked if the CR had been hospitalized in the past 6 months, and twenty-seven 

percent (414) said “yes.” The most common reasons were injury from a fall or accident (17%), 

respiratory condition (16%), infection of organ or body part (13%), cardiac condition (13%), 

cardiovascular condition (9%), digestive or gastrointestinal (7%), cancer or tumor (3%), or 

orthopedic condition (3%). Post-hospitalization of the CR is a time when caregiving can become 

relatively more complex for a caregiver (Moon, 2017; National Academies of Sciences, Engineering, 

and Medicine, 2016; National Alliance for Caregiving & AARP, 2015). 

5.2.3 Care Recipient Institutionalization 

An analysis was performed to measure rates of CR institutionalization to a nursing home or other 

long-term care facility during the evaluation timeframe. For this analysis it was decided to focus on 

the sample of 1,010 caregivers with a CR age of 65 or older who did not die during the 12-month 

evaluation timeframe. At follow-up interviews, caregivers were asked if they were still the CR’s 

caregiver. Unfortunately, there were 88 caregivers who either left a phone message that they were no

longer a caregiver after receiving a pre-notification letter, or who did not stay on the phone long 
Outcome Evaluation of the National Family 

Caregiver Support Program 5-19 

 

enough to tell the interviewer why they stopped caregiving. (See Section 5.1.7 of this report for the 

reasons why caregivers stopped caregiving.) 

At baseline, caregivers reported how long they had been a caregiver for their CR. The years ranged 

from 0 to 20 years. Each caregiver’s length of caregiving was used to estimate a beginning (or origin) 

date by subtracting the reported number of caregiving years from the follow-up interview date. 

Using this retrospective origin date, an analysis called survival analysis was performed to calculate

the event rate of CR institutionalization across the number years of caregiving. This analysis method 

computes and graphically displays the survival probability of not having an event. As expected, the

probability of “surviving” the event decreases or declines with longer caregiving years. In other 

words, the probability of CR institutionalization increases with longer caregiving years because the 

CRs are aging. 

The evaluation team compared the survival probabilities trended by caregiving years—and the 

converse event rate of institutionalization—by caregiver race and if the CR had been recently 

hospitalized. More details about this analysis can be found in Appendix C: Evaluation Methodology. 

In Figure 5-9a, the lowest survival probability (steepest downward trend line) was for the CRs of 

White caregivers. For example, among White caregivers who had been caregiving for 10 years, about 

80 percent of the CRs had not been institutionalized and 20 percent had been institutionalized. In 

comparison, among the non-Hispanic Black caregivers who had been caregiving for 10 years, about 

97 percent had not been institutionalized and 3 percent had been institutionalized. There were no 

CRs institutionalized among the Hispanic caregivers. For the second comparison, Figure 5-9b shows 

a steeper decline in survival probability for CRs who had been recently hospitalized in comparison 

to those who had not been recently hospitalized. 
Outcome Evaluation of the National Family 

Caregiver Support Program 5-20 

 

Figure 5-9a. Comparison of care recipient institutionalization trends by caregiver race/ethnicity

0.50

0.55

0.60

0.65

0.70

0.75

0.80

0.85

0.90

0.95

1.00

0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20

Survival Probability of Not Being Institutionalized

Caregiving Years

White

Black

Hispanics

Other
Outcome Evaluation of the National Family 

Caregiver Support Program 5-21 

 

Figure 5-9b. Comparison of care recipient institutionalization trends by prior hospitalization of 

care recipient

0.50

0.55

0.60

0.65

0.70

0.75

0.80

0.85

0.90

0.95

1.00

0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20

Survival Probability of Not Being Institutionalized

Caregiving Years

No hospitalization

Hospitalization

 What Do These Results Mean? 

The rate of CR institutionalization across caregiving years was highest among White caregivers, 

suggesting that White caregivers may choose to institutionalize the CR sooner and/or at a higher 

rate than caregivers that are non-White. This differential of institutionalization rates among 

race/ethnicity groups may be related to differentials in socioeconomic status among the groups. 

However, previous research has shown that African American caregivers report significantly less 

burden than White caregivers (e.g., Clay et al., 2008; Lee et al., 2010; Dilworth-Anderson et al., 

2012), which may lead to longer caregiving. The rate of CR institutionalization was higher when the 

CR had a prior hospitalization, regardless to how many years the caregiver had been caregiving. 

These results should be reviewed with caution because there were 88 caregivers for whom the 

evaluation team was unable to collect the reason why they stopped caregiving. Additionally, this 

evaluation was unequipped and unable to determine if NFCSP service use was associated with CR

institutionalization because: (1) the timeframe was too short for this outcome, (2) the interview 

instrument and the data collected focused mainly on caregiver characteristics and caregiver wellbeing and did not collect enough information on the family’s situation, caregiver experience and 
Outcome Evaluation of the National Family 

Caregiver Support Program 5-22 

 

expectations, the CR’s living situation, or the CR’s current state of health for proper analysis, and 

(3) the complexity of this event and end of life care may best be researched qualitatively through 

interviews that allow for the collection of more in-depth information (Ornstein et al., 2017).

5.3 Caregiver Perceptions of the Usefulness of NFCSP Services 

for Continuing Caregiving and Delaying Institutionalization 

of the Care Recipient 

This analysis explored the relationship between the receipt of NFCSP agency services on caregivers’ 

perceived usefulness of services in supporting the caregiver to continue taking care of the CR at 

home. 

All NFCSP client caregivers were asked these first two questions:

1. Continued caregiving

Have the services you received from {Agency} enabled you to provide care longer than would have been possible without 

these services? Would you say. . . (1)“Definitely yes,” (2)“Probably yes,” (3)“No, probably not,” or (4)“No, 

definitely not”? The “Definitely yes” response is favorable.

2. Continued staying at home

Would {care recipient} have been able to continue to live at home if caregiver services from {Agency} had not been 

provided? The response options were (1) “Definitely yes,” (2) “Probably yes,” (3) “No, probably not,” 

or (4) “No, definitely not.” The “no” responses (3 and 4) are favorable as they indicate that the 

caregiver feels as though the services help the CR to live at home. When a caregiver responded 

“no,” they were asked this third item:

3. Delayed institutionalization

Where do you think CR would be living without AGENCY services? The response options were: “in my 

home,” “in the home of another family member or friend,” “in an assisted living unit,” “in a nursing 

home,” “CR would have died,” or “other, specify.” For analysis purposes, “in an assisted living 
Outcome Evaluation of the National Family 

Caregiver Support Program 5-23 

 

unit,” “in a nursing home,” and certain “other specify” responses were grouped as a favorable “yes” 

response to the perception that the NFCSP services help delay institutionalization.12

Receipt of NFCSP services and caregivers’ perceived usefulness of services 

As shown in Table 5-17, there were 51 percent of caregivers who received respite services and 

responded favorably to the Continued caregiving item, in comparison to 37 percent of caregivers

who did not receive respite services. 

Table 5-17. The percentage of favorable responses by recent NFCSP service use at baseline

 

Service helps with 

Continued caregiving 

Service helps continue 

staying at home of CR 

Service helps delay 

institutionalization of CR 

Definitely 

yes 

Chi square 

p-value Yes 

Chi square 

p-value Yes 

Chi square 

p-value 

Received respite care in last 6 months 

Yes 50.8% <0.001 39.7% 0.039 25.4% 0.022 No 36.8% 33.6% 19.6% 

Received educational services in last 6 months 

Yes 46.7% 0.152 37.3% 0.742 21.1% 0.718 No 41.6% 35.9% 22.4% 

To measure the association between service use and the favorable responses to these survey items, 

the evaluation team performed a logistic regression that controlled for 13 covariates.13 These are 

potential influencing factors that could confound the relationship between service use and 

perception of usefulness. Including these factors as control variables in the model helps to 

distinguish better and separate out the independent relationship between NFCSP service use and the 

amount of use on the probability of responding favorably to these questions.

Table 5-18 shows the results from three multivariable logistic regression models—one per survey 

question. Only the covariates with a significant association are listed. (See Appendix C: Evaluation 

Methodology for more details about the modeling.) After the 13 covariates were taken into account, 

the probability of the favorable “Definitely yes” response for Continued caregiving remained 

significantly higher for caregivers who said “yes” to receiving respite services in the past 6 months. 

 

12“Other, specify” items: “Care center,” “continuing care community,” “group home,” “state-run facility,” “VA 

Hospital,” “adult foster care,” “convalescent,” “rehab center,” “senior building.”

13The following covariates were used: (1) caregiver geographical area type (urban center, urban area, rural area), 

(2) caregiver age, (3) caregiver gender, (4) CR age, (5) caregiver race, (6) if the caregiver is spouse to CR, (7) how long 

the caregiver has been caregiving, (8) caregiving intensity, (9) if the caregiver is employed, (10) caregiver annual income 

category, (11) if the caregiver takes care of any children under age 18, (12) if the caregiver cares for any other adults age 

60 years or older, and (13) if the caregiver lives with the CR.
Outcome Evaluation of the National Family 

Caregiver Support Program 5-24 

 

For example, the 0.168 marginal effect means that the probability of responding “Definitely yes” 

was 17 percent higher for a caregiver receiving respite care in comparison to a caregiver who did not 

receive respite care. This is a significant association with p-value < 0.001. The probability of 

responding “Definitely yes” to Continued caregiving was higher by 7 percent for those who received 

NFCSP educational services in the past 6 months, although the association was not significant. The 

probability of a favorable response for the Continued staying at home and Delayed 

institutionalization questions were 5 percent higher for caregivers who received respite care in the 

past 6 months in comparison to those who did not, yet not statistically significant. There was no 

association between receipt of educational services and the probability of the most favorable 

responses to these questions. 

Table 5-18. Regression model results to predict favorable responses of service usefulness

Variables (reference category) 

Continued 

caregiving 

Continued staying 

at home 

Delayed 

institutionalization 

Marginal 

effect P-value 

Marginal 

effect P-value 

Marginal 

effect P-value 

Received respite care 0.168 0.000 0.054 0.074 0.049 0.054

Received educational services 0.070 0.055 0.019 0.581 -0.014 0.613

Caregiver Race (ref = Non-Hispanic White) 

Non-Hispanic Black 0.126 0.012 0.012 0.805 0.004 0.919

Hispanic 0.069 0.225 -0.023 0.655 -0.046 0.239

Non-Hispanic Other -0.021 0.746 -0.043 0.475 -0.017 0.731

Care for another adult age 60+ -0.048 0.337 -0.143 0.001 -0.057 0.096

Living with CR -0.167 0.001 -0.056 0.249 -0.029 0.485

Caregiver Annual Income (ref =< $11,500) 

11,500 to <20,000 0.001 0.994 0.204 0.014 0.254 0.019

20,000 to <30,000 0.004 0.956 0.134 0.096 0.199 0.048

30,000 to <40,000 -0.039 0.593 0.161 0.049 0.210 0.043

40,000 to <50,000 -0.058 0.457 0.143 0.109 0.210 0.065

50,000 to <60,000 -0.029 0.722 0.251 0.004 0.344 0.004

60,000 to <70,000 -0.007 0.940 0.081 0.414 0.152 0.218

70,000+ -0.050 0.499 0.172 0.040 0.210 0.048

Note: A marginal effect with respect to a variable represents the partial effect for the average observation. For 

dichotomous (“yes” or “no”) variables, the comparison is with caregivers who do not have the characteristic. For 

categorical variables, changes are expressed moving from the reference category to a particular category.

Only the covariates that were significantly related to at least one of the outcome variables are shown. 
Outcome Evaluation of the National Family 

Caregiver Support Program 5-25 

 

 What Do These Results Mean? 

The caregivers who responded at baseline that they had used services in the past 6 months 

compared to the caregivers who said they did not, were more likely to say that “Definitely yes,” the 

NFCSP services were enabling them to be a caregiver longer. 

 Amount of NFCSP Respite Care and Continued Caregiving 

For a deeper analysis, the evaluation team looked to see if the probability of a more favorable 

response for the Continued caregiving question increased for caregivers who had higher amounts of 

respite care. The modeling technique called ordinal regression was used to see if respite hours were a 

significant factor for predicting each of the response categories in order: (1) “Definitely no,” 

(2) “No,” (3) “Yes,” and (4) “Definitely yes.” 

The analysis included a sample of 447 caregivers who said “yes” to receiving NFCSP respite care in 

the past 6 months and were followed up with a question asking how many hours of respite care they 

usually received each week. The average number of respite care hours per week among the 

447 caregivers was 9.5. 

Table 5-19 shows the results of the regression model, with respite hours as the main factor of 

interest. Because the sample size used in the analysis was smaller, the number of covariates in the 

model was reduced to only four: CR age, caregiver race, if the caregiver lives with the CR, and 

caregiving intensity. The reported 1.047 odds ratio for respite care hours means that the probability 

of a caregiver responding more favorably to Continued caregiving increases 4.7 percent for each 

hour increase in respite hours (p < 0.001). In other words, caregivers in our sample with the fewest 

amount of respite hours were more likely to say “definitely no” to the Continued caregiving 

question, and caregivers with the most respite hours were more likely to say “Definitely yes.” 
Outcome Evaluation of the National Family 

Caregiver Support Program 5-26 

 

Table 5-19. Respite care hours and the odds ratio of a more favorable response to Continued 

caregiving (N = 447 caregivers)

Variables (reference category) Odds ratio P-value Lower CI Upper CI 

Respite care hours per week 1.047 0.000 1.024 1.073 

Control Variables:

CR Age (< 65 years old) 

65 to <75 0.607 0.359 0.195 1.699

75 to <80 0.476 0.180 0.151 1.357

80 to <85 0.486 0.182 0.157 1.348

85 to <90 0.840 0.749 0.271 2.347

90+ 0.374 0.068 0.121 1.034

Caregiver Race (Non-Hispanic White) 

Non-Hispanic Black 1.518 0.168 0.847 2.787

Hispanic 1.382 0.404 0.655 3.024

Non-Hispanic Other 1.394 0.364 0.689 2.910

Living with CR 0.455 0.014 0.238 0.844

Count of ADL’s Needing Help Daily (No ADLs) 

1 1.571 0.175 0.819 3.032

2 1.995 0.039 1.038 3.865

3 2.592 0.005 1.340 5.069

4 1.505 0.199 0.807 2.817

5 1.428 0.276 0.753 2.719

 What Do These Results Mean? 

Among caregivers who used NFCSP respite in the past 6 months, as the number of hours increased, 

so did the probability of a more favorable response to “Have the services you received from {Agency} 

enabled you to provide care longer than would have been possible without these services?”

 Amount of NFCSP Educational Services and Continued Caregiving 

The same analysis was performed to see if the probability of a more favorable response to the 

Continued caregiving question increased for caregivers who had higher amounts of educational 

services. This analysis included a sample of only 216 caregivers because only caregivers who said 

“yes” to receiving NFCSP educational services in the past 6 months were followed up with a 

question about how many times they attended a class or session in the past 6 months. The average 

number of times that caregivers used an educational service in the past 6 months was 7 times. Again, 

because the sample size was smaller, the number of covariates in the model was reduced to four. See 

Appendix C: Evaluation Methodology for more details about the construction of the educational 

services amount. As shown in Table 5-20, the reported odds ratio for educational services amount 

for a more favorable response to the Continued caregiving question was 1.064 (p = 0.023). This
Outcome Evaluation of the National Family 

Caregiver Support Program 5-27 

 

means that the probability of a caregiver responding more favorably to Continued caregiving 

increases 6.4 percent for each additional time that a caregiver used an educational service. 

Table 5-20. Educational services amount and the odds ratio of a more favorable response to 

Continued caregiving (N = 212 caregivers)

Variables (reference category) Odds ratio P-value Lower CI Upper CI 

Total Educational Services 1.064 0.023 1.010 1.124 

Control Variables:

CR Age (ref = < 65 years old) 

65 to <75 0.722 0.636 0.178 2.732

75 to <80 1.421 0.616 0.343 5.545

80 to <85 0.787 0.728 0.193 2.998

85 to <90 1.283 0.727 0.301 5.138

90+ 0.826 0.790 0.193 3.333

Caregiver Race (ref = Non-Hispanic White) 

Non-Hispanic Black 1.522 0.391 0.594 4.117

Hispanic 1.664 0.288 0.663 4.406

Non-Hispanic Other 1.982 0.229 0.670 6.433

Living with CR 0.536 0.168 0.214 1.282

Count of CRs’ ADL’s Needing Help Daily (ref = No ADLs) 

1 1.993 0.091 0.905 4.508

2 2.646 0.040 1.057 6.845

3 2.350 0.084 0.903 6.333

4 2.561 0.044 1.041 6.559

5 1.678 0.242 0.710 4.042

 What Do These Results Mean? 

Among caregivers who used NFCSP educational services in the past 6 months, as the amount of 

service use increased, so did the probability of a more favorable response to “Have the services you 

received from {Agency} enabled you to provide care longer than would have been possible without these services?”

5.4 Most Helpful Caregiver Service from AAA 

At baseline, NFCSP client caregivers were asked “Now, thinking back to all the caregiver services that you 

received only from the agency, which service was most helpful for you?” This question was not asked of the 326 

initial Comparison caregivers. Table 5-21 shows the response frequencies for the most helpful 

caregiver service.
Outcome Evaluation of the National Family 

Caregiver Support Program 5-28 

 

Table 5-21. Caregiver response frequencies to most helpful AAA service

Response category Frequency Percent 

Information about available services 47 4.1 

Assistance accessing supportive services 71 6.2 

Caregiver education and training, individual counseling, support groups 159 13.8

Respite care 480 41.6

Supplemental services, on a limited basis 113 9.8 

None of the above (“other”) 284 24.6

Total 1,154 100 

Respite was deemed the most helpful service by 42 percent of the respondents. Second most 

helpful, at 25 percent were “other” services, which caregivers said were mainly home health aide, 

physical therapist, homemaker services/house cleaning, and meals. The third most helpful at 

14 percent was caregiver education and training, individual counseling, and support groups. 
Outcome Evaluation of the National Family 

Caregiver Support Program 6-1 

 

6. Association Between Processes for Delivering 

NFCSP Services and Caregiver Outcomes 

6.1 NFCSP Process Evaluation 

In 2015, the NFCSP process evaluation assessed how AAAs planned for and operated their 

programs. Using cross-sectional survey data collected as part of the 2015 NFCSP Process 

Evaluation, Lewin analyzed caregiver assessment policies and practices in 54 State Units on Aging

(SUA), 619 AAA, and 642 local service providers (LSPs). 

The Lewin process evaluation examined the policies and procedures through which SUAs, AAAs, 

and LSPs meet NFCSP goals. Key findings regarding organizational structure, policies, and 

procedures at the AAA level were:

• There were 231 AAAs (51.8%) who reported that they did not operate a caregiver 

program before year 2000. 

• Large AAAs have a mean of 4.3 full-time employees (FTEs) at their agency who work 

on their caregiver programs, with small and medium AAAs averaging slightly fewer than 

2.0 FTEs. 

• Caregiver populations that AAAs most commonly target are caregivers of persons with 

Alzheimer’s disease or a related disorder, grandparents raising grandchildren and other 

relative caregivers, and rural caregivers.

• The majority of AAAs (69.7%) assess both CRs and caregivers in their caregiver 

support programs. Fifteen percent only assess CRs.

• Among those with a wait list for NFCSP services, the majority of AAAs (56.4%) have a 

single wait list maintained for the NFCSP overall, while 27.5 percent maintain multiple 

wait lists by NFCSP specific caregiver support services.

• More than 7 in 10 AAAs (74.4%) have a policy that limits or caps the amount or cost of 

service a caregiver may receive. 

• AAAs reported that caregivers apply for respite care services far more often than for 

any other service. 
Outcome Evaluation of the National Family 

Caregiver Support Program 6-2 

 

• Thirty-one percent of AAAs said that the frequency of caregiver training and offerings 

was determined by LSP, 31 percent said they were regularly scheduled, and 30 percent

said programming was provided on an as-needed basis.

• Approximately 25 percent of AAAs reported that they administer a separate caregiver 

program funded outside the NFCSP.

6.2 Processes and Structure at the AAA-Level Associated with 

Optimal Caregiver Outcomes 

Evaluation Question #1: In conjunction with information from the process evaluation 

(conducted in Phase 1), what types of organizational structures and/or approaches for 

NFCSP services are associated with the best participant-level outcomes? 

To identify the organizational characteristics, policies, and procedures that are associated with 

caregiver outcomes, the Westat evaluation team merged the AAA-level process survey data with the 

caregiver outcome data for Program caregivers (i.e., those who received NFCSP respite care or 

educational services). Each caregiver was associated with an agency and the two datasets was merged 

on the AAA id number. The two datasets coincided on 105 AAAs. AAAs were excluded if they had 

fewer than five caregiver respondents (N = 51 AAAs) in the post-merge sample. The final sample 

for this analysis included 458 caregivers among 54 AAAs within 29 states. The states included 

19 percent in the Midwest region, 17 percent in the Northeast region, 30 percent in the South 

region, and 34 percent in the West region. The mean number of clients per AAA was 8.5 with a 

range of 5 to 22 caregivers. An exploratory analysis for significant differences using correlations and 

frequency tables was performed on all AAA-level items collected in the process evaluation with 

caregiver outcomes. Associations were found with AAA assessment policies. The following two 

analyses were pursued. 

The relationship between AAA assessment and reassessment policies and caregiver 

outcomes. 

Assessment and reassessment activities are critical for determining how clients receive services.

From the merged process evaluation data, Table 6-1 shows the AAA-level response frequencies to 

the questions asked of the AAAs about their assessment process. 
Outcome Evaluation of the National Family 

Caregiver Support Program 6-3 

 

Table 6-1. AAA caregiver assessment policies: Items from the process evaluation

Question AAAs with a response % Yes 

Does your agency use a standardized assessment tool? 51 69

Does your agency’s needs assessment include assessing the 

impact of caregiving on the caregiver?

50 70

Does your agency have a policy for client reassessment? 51 75

Does your agency use caregiver assessment and reassessment 

to prioritize who receives services?

51 35

Does your agency use needs assessment to determine the type 

and amount of caregiver service?

53 68

An analysis was performed to compare the mean burden, mental health, and physical health scores 

between caregivers with agencies who responded “yes” to caregivers with agencies who responded 

“no” to the implementation of each of these processes. The outcome measures used in this analysis 

were the PROMIS Mental health and Physical health scores and the Zarit Caregiver burden collected 

at baseline. Table 6-2 shows the results of t-tests, which were used to determine if the means were

significantly different. Significantly higher mean Caregiver burden scores were found among the 

caregivers from AAAs that include the impact of caregiving in their needs assessment, in 

comparison to AAAs that do not include such evaluation (p = 0.02). 

Table 6-2. Comparison of mean caregiver outcome scores among AAA groups: t-test results

Process item 

Caregiver burden Mental health Physical health 

AAA response 

P-value 

AAA response 

P-value 

AAA response 

Yes No Yes No Yes No P-value 

Uses a standardized 

assessment tool

11.4 10.7 0.09 12.1 12.9 0.04 14.1 14.7 0.09

Needs assessment includes 

assessing the impact of 

caregiving

11.5 10.5 0.02 12.0 12.8 0.04 14.1 14.6 0.15

Has policy for client 

reassessment

11.2 11.1 0.78 12.2 12.7 0.28 14.1 14.9 0.04

Uses caregiver assessment 

and reassessment to 

prioritize who receives 

services

10.8 11.3 0.19 12.1 12.4 0.35 14.0 14.4 0.17

Uses needs assessment to 

determine the type and 

amount of caregiver service

11.2 11.2 0.99 12.4 12.3 0.86 14.3 14.2 0.94

The evaluation team also explored possible covariates that may have confounded the associations 

and/or were not balanced between the two AAA groups for each process item; there were no 

differences in mean caregiver age (68 years), caregiver gender (male = 30%), and “my care recipient 

has dementia, memory problem, or Alzheimer’s” (mean = 65%). 
Outcome Evaluation of the National Family 

Caregiver Support Program 6-4 

 

 What Do These Results Mean? 

The AAA process of including the impact of caregiving in the needs assessment was associated with 

clients reporting higher caregiver burden. These results suggest that agencies assessing the impact of 

caregiving may have more opportunities to understand their clients’ needs than agencies that do not 

have these processes. Having a standardized assessment tool may help target caregivers with poor 

mental health for service receipt. One could argue that a clear understanding of client needs may 

enable AAAs to better educate their clients about the impacts of caregiving and provide a more 

customized caregiver support plan. More research is needed to understand the organizational 

characteristics that enable effective assessment for the determination of services that meet the 

caregivers’ needs. 

The association between AAA frequency of measuring client program satisfaction and 

caregivers’ perceived benefits of NFCSP for Continued caregiving. 

The AAA process and caregiver outcome survey datasets were merged at the AAA level for 105 

AAAs. AAAs that had less than five caregiver respondents (N = 51) in the sample, and were missing 

responses to the question about the frequency of measuring client satisfaction (N = 11), were 

excluded. The final sample for this analysis included 364 caregivers among 43 AAAs within 31

states. The mean number of clients per AAA was 8.5 with a range of 5 to 22 caregivers.

Agencies were asked the following question: 

How frequently does your AAA assess {NFCSP} program participant satisfaction?

The responses (and frequencies) were “ongoing” (9.3%), “semi-annually” (2.3%), “quarterly” (0%), 

“monthly” (2.3%), “annually” (62.8%), “varies by service” (20.9%), and “other” (2.3%). The first 

four were categorized as a frequency of “more often than annually” (14%).

The analysis used caregiver responses to the Continued caregiving question: 

“Have the services you received from {Agency} enabled you to provide care longer than 

would have been possible without these services?” 

The percentage of caregivers who responded “Definitely yes” was calculated per AAA. Across the 

43 AAAs, the average percentage of “Definitely yes” responses among the caregivers was 

48 percent. AAAs that said they assess client satisfaction more often than annually had a higher 
Outcome Evaluation of the National Family 

Caregiver Support Program 6-5 

 

percentage of caregivers who responded “Definitely yes” for Continued caregiving (unadjusted 

mean = 66.5% versus 44.9%, p = 0.0073).

However, it is better to analyze this relationship while controlling for measured factors that can 

influence the caregivers’ “Definitely yes” response. Therefore, a multivariable regression model was 

performed to estimate the association between the frequency of client satisfaction assessment with 

aggregated AAA-level percent of caregivers who responded “Definitely yes” to the Continued 

caregiving question. Table 6-3 lists the four control variables in the model and their mean values 

aggregated at the AAA-level.

Table 6-3. Mean value of model control variables

AAA-level measure Mean percent 

% Caregivers with CRs with dementia or Alzheimer’s 63.1

% Of five ADLs that caregivers help daily* 45.9

% Caregivers who get help from family/friends 36.1

# Of caregivers per AAA in sample 8.5 

* The five ADLs include bathing, eating, dressing, toileting, and mobility. A 100 percent represents that a caregiver 

responded that they help with all 5 ADLs on a daily basis. (Bathing includes daily or several times a week.)

Figure 6-1 displays the adjusted mean “Definitely yes” percent between the two groups of AAAs. 

Figure 6-1. Comparison of AAA adjusted means for Continued caregiving (N = 43 AAAs)

65.7%

45.0%

0%

10%

20%

30%

40%

50%

60%

70%

80%

Measure client satisfaction

more often than annually

Measure client satisfaction

annually or less frequently

AAA Average Percent

Percent of Caregivers that said "Definitely yes" 

Note: Mean response scores adjusted for these AAA-level variables: % of CRs with Alzheimer/dementia, help with ADLs 

daily, informal help with caregiving, and # of caregivers surveyed. Significantly different means (p = 0.0085). 
Outcome Evaluation of the National Family 

Caregiver Support Program 6-6 

 

Table 6-4 shows the results from the multivariable linear regression model. The regression 

coefficient estimate of 0.206 means that in comparison to AAAs that do not assess more often than 

annually, the AAAs that do measure satisfaction more often than annually have a significantly higher 

percentage of caregivers who responded “Definitely yes” to the Continued caregiving item (p = 

0.009). The percentage of caregivers with more daily caregiving responsibility was significantly

associated with more “Definitely yes” responses to the Continued caregiving question, suggesting 

that caregivers with more intense caregiving perceive more benefit/helpfulness from NFCSP respite 

care and/or educational services. 

Table 6-4. Regression estimates for AAA-level means of “Definitely yes” to NFCSP services 

enabling the caregiver to Continued caregiving

Variable 

Linear model results 

Estimate (B) SE B P-value 

AAA measures satisfaction more often than annually 0.206 0.074 0.009

 – vs AAA measures <= annually (reference group) 0 – – 

% Caregivers with CRs with dementia or Alzheimer’s -0.059 0.135 0.686

% of five ADLs that caregivers help with daily 0.482 0.173 0.008

% Caregivers who get help from family/friends -0.152 0.127 0.238

# of caregivers per AAA -0.000 0.007 0.977

 What Do These Results Mean? 

These findings suggest that agencies with a process to measure caregiver/client satisfaction more 

often than annually have, on average, a higher percentage of caregiver clients with the most

favorable perception that NFCSP enables them to be caregivers longer. It is possible that AAA 

measurement of satisfaction that is more frequent provides better monitoring and management of 

what each client needs to support him/her in taking care of his/her CR in the community. Because 

this analysis was cross-sectional, the results only show an association and not causation. More 

research is needed to understand the organizational structure and goals of the AAAs that measure

client satisfaction more often, and to determine if those AAAs are providing NFCSP caregiver 

services in a more effective manner.
Outcome Evaluation of the National Family 

Caregiver Support Program 7-1 

 

7. Caregiver Targeted Need and Overall Support 

7.1 Targeting NFCSP Service to Those with the Greatest Need 

Evaluation Question #2: Are services reaching the groups targeted by the OAA, including 

caregivers (serving older adults), with greatest social or economic need? 

The objective of this analysis was to measure if caregivers with more social or economic need were

receiving as much NFCSP services as those with less need. This analysis stacked the survey data to 

allow for more responses. For example, we used 1 to 3 survey responses per caregiver, depending on 

if they took only the baseline, the 6-month follow-up, the 12-month follow-up, or any combination 

of the three. 

The evaluation team developed an SES Need Index, as the sum of five factors/components. The 

factors were selected to be as similar as possible to the greatest economic and social need indicators 

described in the Older American Act of 1965. The Act defined the individuals in greatest economic 

and social need as older, low income, minority, with limited English language proficiency, and 

socially isolated. 

SES Need Index Components and Criteria:

Older Caregiver. Caregiver is 60 years of age or older.

Low Income. Caregiver’s annual household income from all sources was less than or equal to 

$30,000. If the annual income was missing but monthly income was available, the annual 

income was supplemented with appropriately converted monthly income. The above cutoff 

was based on the definition of low income as being approximately 200 percent of the federal 

poverty level (O’Brien, Wu, & Baer, 2010) and using the 2018 federal poverty guidelines for a 

two-person household (U.S. Department of Health and Human Services, 2018). 

Minority Status. Caregiver’s race and ethnicity were anything other than White and nonHispanic. 

Limited English Proficiency. Caregiver took the survey in Spanish. 

Social Isolation. Caregiver who (1) resided in a rural location based on their zip code, 

(2) reported being nearly always stressed between caring for the CR and trying to meet other 

responsibilities, such as work or family, and (3) provided poor rating for satisfaction with 

social activities. This variable was a proxy for the Older American Act-defined isolationrelated need. Social isolation—culturally, socially, or geographically—can lead to “negative 

social interaction” which has been found to be a stronger risk factor for poorer caregiver well-
Outcome Evaluation of the National Family 

Caregiver Support Program 7-2 

 

being than the level of recipient impairment or the amount of care provided (Haley et al., 

2003; Smith, 2011). 

 NFCSP Respite Care Hours 

To analyze the relationship between the SES Need Index and NFCSP respite hours, the sample only 

included caregivers who said that they used respite care in the past 6 months and answered the 

question about how many hours of respite care they usually received each week. The sample 

included 637 unique caregivers and 987 survey responses; an average of 1.5 surveys per caregiver.

For this “repeated data” sample, caregivers reported receiving an average of 9.03 hours of NFCSP 

respite care per week. 

 NFCSP Educational Services 

The NFCSP educational services sample included any caregivers who said “yes” to using 

education/training, individual counseling or support group services and answered the question 

about how many times they attended or received each service in the past 6 months. The amount of 

services was summed across all three types of services. The sample included 257 unique caregivers 

and 431 survey responses; an average of 1.7 surveys per caregiver. For this “repeated data” sample, 

on average, the caregivers reported receiving these services 6.95 times during the past 6 months. 

 SES Need Index Among NFCSP Respite Care Users 

On average across the three timeframes, 82 percent of the caregivers were older, 42 percent were 

low income, 27 percent were racial/ethnic minorities, 1.5 percent had limited English proficiency, 

and 36 percent were considered to be socially isolated. Table 7-1 reports the percentage of caregivers 

who met the criteria for each of the SES Need Index indicator by timeframe. 

Table 7-1. SES Need Index indicators among caregivers who used NFCSP respite care

Indicator 

Percent of caregivers with indicator 

Baseline 

(N = 474) 

6 months 

(N = 286) 

12 months 

(N = 227) 

Older caregiver age 80.4 83.2 82.4

Low income 42.4 43.7 40.1

Minority status 27.6 25.5 27.3

Limited English 1.9 0.7 1.8 

Social isolation 35.4 38.5 35.2
Outcome Evaluation of the National Family 

Caregiver Support Program 7-3 

 

 Association Between SES Need Index and Respite Hours at Baseline 

At baseline, 5 percent of 474 respite-using caregivers had an index = 0; 31 percent had an index = 1; 

40 percent had an index = 2; 20 percent had an index = 3; and 4 percent had an index = 4. The 

index’s six-level range (0-5) was transformed into 0-4 by collapsing the two highest categories 

(4 and 5) to improve the distribution of this variable because there were very few caregivers with an 

index = 5. 

Figure 7-1 shows the mean agency respite hours for each SES Need Index value; the overall pattern 

suggests that caregivers with more social and economic needs received fewer hours of respite each 

week. However, the differences were not statistically significant.

Figure 7-1. Mean NFCSP respite hours per week at each SES Need Index value at baseline

(N = 474 caregivers)

10.63

9.45

8.97

8.30 8.30

6

7

8

9

10

11

12

13

0 1 2 3 4

Mean agency respite hours

Caregiver SES Need Index

NFCSP Respite Hours by SES Need Index 

Table 7-2 shows the mean agency respite hours for caregivers with and without each of the SES 

Need index indicators. The only statistically significant finding in this table is that minority status 

caregivers received more respite than non-minority caregivers at 6 months (11.6 versus 8.6, 

p = 0.0400). 
Outcome Evaluation of the National Family 

Caregiver Support Program 7-4 

 

Table 7-2. Comparison of mean weekly respite hours by each indicator of the SES Need Index

Index indicator 

Respite hours at 

baseline 

(N = 747) 

Respite hours at 

6-months 

(N = 286) 

Respite hours at 

12-months 

(N = 227) 

Index: Older Age ( ≥ 60) 8.6 9.0 8.3 

Age < 60 10.7 10.8 10.3

Index: Low Income (≤ 30K) 8.2 10.0 8.9 

Income > 30K 9.7 8.8 8.4 

Index: Minority Status 10.4 11.6 9.6 

Not Minority Status 8.5 8.6* 8.3 

Index: Limited English 12.1 10.0 16.3

No Limited English 9.0 9.3 8.5 

Index: Social Isolation 8.2 8.6 7.2

No Social Isolation 9.5 9.8 9.4 

* p < 0.05, ** p < 0.01, *** p < 0.001

 Association Between Respite Hours and SES Need Index 

Findings from the repeated measures regression model with respite hours as the dependent variable 

and the SES Need Index as the independent variable showed no association between the index and 

hours. However, when the SES Need Index was replaced with the five index indicators, the model 

showed that older age (60+) was associated with fewer hours (regression coefficient B = – 1.92, 

p = 0.034) and minority status was associated with more respite hours (B = 1.79, p = 0.031). 

(Regression results not shown.) 

 SES Need Index Among NFCSP Educational Service Users 

Among the subset of caregivers who used NFCSP educational services, 82 percent of the caregivers 

were older, 28 percent were low income, 22 percent were racial/ethnic minorities, 1 percent had 

limited English proficiency, and 30 percent were considered to be socially isolated. (See Table 7-3.)

In comparison to the respite care sample displayed in Table 7-1, fewer of these caregivers were low 

income or socially isolated. 
Outcome Evaluation of the National Family 

Caregiver Support Program 7-5 

 

Table 7-3. Frequency of SES Need Index indicators among caregivers who used NFCSP 

educational services

Indicator 

Educational services sample 

Baseline 

(N = 222) 

(%) 

6 months 

(N = 117) 

(%) 

12 months 

(N = 92) 

(%) 

Older caregiver age 77.9 86.3 81.5

Low income 27.0 30.8 27.2

Minority status 22.5 18.0 25.0

Limited English 1.4 0.0 1.1 

Social isolation 26.1 29.9 34.8

 Association between SES Need Index and Educational Services 

At baseline, 8 percent of 222 caregivers who used NFCSP educational services had an index = 0; 

42 percent had an index = 1; 40 percent had an index = 2; 9 percent had an index = 3; and 2 percent 

had an index = 4. Figure 7-2 shows a graph of the mean agency educational services amount for 

each SES Need index value in the NFCSP educational services sample at baseline. The pattern 

suggests that an increase in the number of social and economic needs corresponds to a decrease in 

mean educational services amount received, with the exception of the 2 percent of caregivers with 

an index = 4. The differences were not statistically significant.

Figure 7-2. Mean NFCSP educational services amount at each SES Need Index value at 

baseline (N = 222 caregivers)

7.65

7.25

6.56

5.79

7.50

4

5

6

7

8

9

0 1 2 3 4

Mean agency education times

SES Need Index

Education Services Amount by SES Need Index
Outcome Evaluation of the National Family 

Caregiver Support Program 7-6 

 

Table 7-4 shows the mean NFCSP educational services amount for caregivers with and without each 

of the SES Need indicators. There were no significant differences in the means. 

Table 7-4. Comparison of mean educational services amount by each indicator of the SES 

Need Index

Index indicator 

Baseline amount 

(N = 222) 

6 months amount 

(N = 117) 

12 months amount 

(N = 92) 

Index: Older Age ( ≥ 60) 6.9 6.2 7.6 

Age < 60 6.8 8.1 8.2 

Index: Low Income (≤ 30K) 6.0 5.9 7.1 

Income > 30K 7.2 6.7 8.0 

Index: Minority Status 5.6 7.2 7.6 

Not Minority Status 7.0 6.3 7.8 

Index: Limited English 5.0 – –

No Limited English 6.9 – – 

Index: Social Isolation 6.9 5.9 7.1

No Social Isolation 6.9 6.7 8.1 

 Association Between Educational Services Amount and SES Need Index: 

Regression Model Results 

Findings from the repeated measures regression model with educational services amount as the

dependent variable and the SES Need index as the independent variable showed no association 

between the index and hours. The model was also performed with the five indicators as independent 

variables replacing the index. There were no associations found from the multivariable model; 

however, significant associations are more difficult to detect with a smaller sample size. (Regression 

results not shown.) 

 What Do These Results Mean? 

This analysis examined the association between NFCSP service amount and SES need. Because the 

focus of the analysis was on social and economic needs based on the OAA, the analysis did not 

include other important aspects of caregiver needs assessment and targeting, such as care recipient 

frailty, care recipient diagnosis of Alzheimer’s disease or dementia, or caregiver burden. Results 

indicate that, at baseline, over 90 percent of the caregivers receiving NFCSP services had at least one 

of the socioeconomic need factors. Although caregiver SES Need index was not associated with the 

amount of NFCSP respite hours received, significant associations emerged for two of its 

components: caregiver age and minority status. Among this caregiver sample, the caregivers under 

age 60 reported significantly more respite hours per week (on average) than caregivers age 60+. One 
Outcome Evaluation of the National Family 

Caregiver Support Program 7-7 

 

could hypothesize that younger caregivers may have more competing responsibilities such as 

childcare and employment, aspects that may necessitate the need for longer respite care hours. 

Additionally, racial/ethnic minority caregivers reported receiving more respite hours per week 

(on average) than non-minority caregivers.

For educational services, neither the SES Need index nor any of its components were significantly 

associated with more service use. Because educational services can be provided in a group setting 

and are often less costly to provide than respite care, there is less necessity for SES-based targeting 

for these services.

7.2 Barriers to Receiving Services from Any Organization 

The survey included several items about barriers to receiving caregiver services. The first question 

was “Have you tried to obtain any formal caregiving support services from a community organization such as a 

business or agency but were not able to receive them?”

Of the baseline caregivers who responded to this question, only 12 percent (N = 190) replied “yes” 

and 88 percent replied “no.” The caregivers who answered “yes” were then asked questions about 

reasons for not obtaining services (shown in Table 7-5). 

Table 7-5. Reasons caregivers were unable to obtain caregiver support services from any 

organization

Question % Yes 

Were you on a waiting list? 24.7

Did the services cost too much? 46.0 

Did your local agency not have the service you need? 3.8 

Was there some other reason? 63.0 

The top specified response was that the services cost too much (46 percent); however, 63 percent of 

the respondents also indicated “other reasons” they could not obtain services. Table 7-6 shows the 

top “other reasons” as reported by 116 caregivers. 
Outcome Evaluation of the National Family 

Caregiver Support Program 7-8 

 

Table 7-6. Other reasons caregivers were unable to obtain caregiver support services from any 

organization

Specified “other” reasons Frequency 

Ineligible: income or assets too high 48

Did not qualify/ineligible not because of income 20

Agency underfunded or short staffed 7 

Never heard from agency 6 

Insurance not accepted/couldn’t afford 5 

When determining respite care eligibility, an organization may give priority to older persons with low 

incomes (as compared to the Federal Poverty Level) when choosing their clients. For example, most 

AAAs will assess the income and sometimes the assets of the CR. Eligibility requirements for respite 

care differ with each administering AAA. Most commonly, respite care from the AAA is offered free 

of charge. However, some agencies might require a co-payment based on income. For example, they 

may grant $500 of respite care, but the family has to pay $100 (20% co-pay).

7.3 Why Caregivers Do Not Seek Services 

To better understand why caregivers listed as NFCSP clients were not receiving services, new items 

were asked during the 6-month interview. More specifically, during the 6-month interview, 

323 NFCSP client caregivers who responded “no” to receiving respite care or respite vouchers were 

subsequently asked for the reasons why they did not receive the service. The responses are shown in 

Table 7-7. 

Table 7-7. Reasons caregivers responded “no” to receiving NFCSP respite care or vouchers

Did you not receive respite care from {Agency} during the past 6 months because .... 

% Yes 

(among 323) 

You didn’t know about this service from this agency? 39.3 

You didn’t need the service from this agency? 3.7 

You were previously not satisfied with the service and did not request again from this 

agency?

0.9 

Prior to 6 months ago, you used all your allotted respite hours for the year from this 

agency?

4.3 

You wanted to receive respite care from this agency, but they didn’t have the staff or 

resources to provide during the past 6 months?

5.6 

Because of some other reason? 10.8

More than one-third of those who were on the NFCSP client list but did not use respite care 

services said that they did not know about the service from the agency. The two most common 
Outcome Evaluation of the National Family 

Caregiver Support Program 7-9 

 

“other reasons” for not obtaining respite services were: (1) does not qualify and (2) the CR does not 

want anybody to come over.

During the 6-month interview, 472 NFCSP client caregivers who responded “no” to receiving 

educational services were asked about specific reasons they did not receive the service. The 

responses are shown in Table 7-8. 

Table 7-8. Reasons caregivers responded “no” to receiving NFCSP educational services

Did you not receive caregiver education, training, counseling, or support group services 

from {Agency} during the past 6 months because .... 

% Yes 

(among 472) 

You didn’t know about this service from this agency? 56.4 

You didn’t need the service from this agency during the past 6 months? 28.2 

You have not been satisfied with the service and did not request again from this agency? 0.0 

You wanted these services, but there were no classes, courses, or sessions offered from 

this agency? 2.5 

You wanted individual counseling, but were unable to get an appointment through this 

agency? 0.8 

Because of some other reason? 8.3 

More than half of those who were on the NFCSP client list but did not use educational services said 

that they did not know about the services from the agency. The two most common “other reasons” 

for not obtaining educational services were: (1) unable to attend and (2) ineligible.

7.4 The Extent to Which NFCSP Clients Receive Other Services 

The analyses in this section used the responses from caregiver survey results collected at baseline 

only. The Program/Comparison group assignments that used 6-month responses for caregiver 

group determination were not applicable for this baseline-only analysis (See Appendix C: Evaluation 

Methodology for details about group assignment). For this analysis, an NFCSP caregiver is defined 

as a caregiver who reported: 

• Receipt of at least 1 hour per week of NFCSP respite care, or 

• Attending an NFCSP educational service one or more times in the past 6 months. 

 Respite Care and Educational Services 

The survey asked the caregivers detailed questions about caregiver respite care and educational 

services that were obtained from NFCSP and other sources. The first two tables (Tables 7-9 and 
Outcome Evaluation of the National Family 

Caregiver Support Program 7-10 

 

7-10) show caregivers’ reported use of these two services within the past 6 months at the baseline 

interview.

As shown in Table 7-9, 54 percent of NFCSP caregivers received respite care from family and 

friends. A lower percentage (36%) of the non-NFCSP caregivers received respite care from family 

and friends, yet they reported more hours per week. The two groups reported the same amount 

educational services although, again, more NFCSP caregivers (19%) reported receiving this service

in comparison to the non-NFCSP caregivers.

Table 7-9. Comparison of receipt of respite care or educational services provided by family, 

friends, or neighbors

Services by family/friend 

NFCSP caregivers 

(N = 617) 

Non-NFCSP caregivers 

(N = 951) 

% Yes Mean amount % Yes Mean amount 

Respite care 54.0 9.77 hrs./week 35.8 13.42 hrs./week

Educational 18.6 5.11 sessions 10.7 5.13 sessions

Table 7-10 shows that, at baseline, the percentage of NFCSP caregivers who received respite care 

from a non-NFCSP organization was slightly higher than the percentage of non-NFCSP caregivers

(20% versus 16%, respectively). Similar to the respite care received from family and friends, the 

NFCSP caregivers received fewer hours, on average, than non-NFCSP caregivers (14.5 versus

15 hours per week, respectively). 

Table 7-10. Comparison of receipt of respite and educational services provided by different 

sources: NFCSP versus non-NFCSP caregivers

Services by non-NFCSP organization 

NFCSP caregivers 

(N = 617) 

Non-NFCSP caregivers 

(N = 951) 

% Yes Mean amount % Yes Mean amount 

Respite care 20.0 14.51 hrs./week 16.1 15.47 hrs./week

Educational services 21.7 6.99 sessions 16.7 5.62 sessions

Less than one-fourth of all the caregivers were receiving respite care from another paid 

agency/organization that was not an NFCSP agency. 
Outcome Evaluation of the National Family 

Caregiver Support Program 7-11 

 

 Use of Home and Community-Based Services (HCBS) 14 for Caregiver or Care 

Recipient 

To address Evaluation Question #3, an analysis was performed to understand the extent to which 

the NFCSP caregivers also receive other HCBS. Caregivers were asked the following questions 

about other services that they or the CR received from a non-NFCSP paid agency: “In the last 6 

months, have you, as the caregiver, or CR received any of the following services offered by another organization with 

paid staff? This includes services paid for by Medicaid or Medicare.” Comparison caregivers were asked “In the 

last 6 months, have you, as the caregiver, or CR received any of the following services offered by any organization with 

paid staff? This includes services paid for by Medicaid or Medicare.” 

The results for NFCSP caregivers and non-NFCSP caregivers are shown in Table 7-11. 

Incontinence supplies, home health aides, home delivered meals, and case management were the 

most reported services. For the majority of services, there was little difference between the two types 

of caregivers. However, there were exceptions for two types of services. NFCSP caregivers were

significantly more likely to have received legal assistance (9.4% versus 5.3%; p = 0.010). By contrast, 

NFCSP caregivers were significantly less likely to have received home-delivered meal services 

(16.7% versus 30.2%; p < 0.001). 

Table 7-11. Receipt of home and community-based services: NFCSP versus non-NFCSP 

caregivers

 Service 

NFCSP caregivers 

(N = 709) 

Non-NFCSP 

caregivers (N = 859) % Received % Received P-value Help applying for services 24.17 22.37 0.40

Case management 23.64 23.54 0.96

Training on attending to recipient’s medical needs 13.21 11.02 0.19

Legal assistance 9.39 5.26 <0.01*

Incontinence supplies 25.53 23.92 0.46

Home modification such as grab bars or ramps 12.31 10.50 0.26

Nutritional supplements such as Ensure or Boost 11.91 9.37 0.10

Transportation 18.56 21.59 0.14

Home delivered meals 16.67 30.22 <0.01*

Congregate meals 12.02 13.79 0.30

Mental health services 9.65 8.24 0.33

Homemaker services 20.85 24.50 0.09

Home health aide that was not respite care 23.90 25.12 0.58

Other services 8.91 8.18 0.61

Note: P-values shown are for two-tailed chi square tests; physical and occupational therapist were the most common 

“other” services.

 

14HCBS includes the following 14 categories: Help with applying; Case management; Training on attending to recipient’s 

medical needs; Legal assistance; Incontinence supplies, home modification such as grab bars, ramps; Nutritional 

supplements such as Ensure or Boost; Transportation; Home delivery meals; Congregate meals; Mental health services; 

Homemaker services; Home health aide that was not respite care; Any other services.
Outcome Evaluation of the National Family 

Caregiver Support Program 7-12 

 

 Relationship Between Use of HCBS and NFCSP: A Look at the Initiation of 

Services 

For this analysis, the evaluation team used survey data from baseline and follow-up for caregivers in 

the Program group (N = 747 caregivers). The evaluation team performed an analysis to best answer 

these two questions: 

1. Do clients receive other HCBS as a result of initiating NFCSP caregiver services?

2. Do clients of other HCBS become aware of and initiate NFCSP services?

To answer the first question, the evaluation team identified 163 Program caregivers who used 

NFCSP caregiver services at baseline but did not receive any HCBS at baseline. For the second 

question, the sample was limited to 330 caregivers who received HCBS at baseline, but not NFCSP 

caregiver services at baseline.

Logistic regression models were performed to determine whether the use of one service at baseline 

increased the likelihood of starting the use of the other service at follow-up. The hypothesis for the 

first question was that receiving NFCSP respite/educational services would help caregiver clients 

and their CRs receive other HCBS as well. The odds ratio of 1.2 means that receiving NFCSP 

service at baseline increased the likelihood of HCBS at follow-up (an OR > 1.0 is an increased 

likelihood), but the finding was not statistically significant. (See Table 7-12, Model 1). The 

hypothesis for the second question was that initiating HCBS for either the caregiver or the CR

would initiate the use of NFCSP services. The odds ratio of 1.9 indicates that receiving HCBS at 

baseline increased the likelihood of receiving NFCSP services at follow-up. This finding was 

statistically significant (p = 0.04) (Table 7-12, Model 2.)

Table 7-12. Results of logistic regression predicting use of a service at follow-up

Variables (reference category) 

Model 1 (N = 163 who did 

not use other HCBS at 

baseline) 

Model 2 (N = 330 who did 

not use respite/ 

education at baseline) 

Using other 

HCBS at follow-up 

Using respite/ 

educational services 

at follow-up 

Odds ratio P-value Odds ratio P-value 

Received respite/education offered by 

NFCSP agencies at baseline (not received) 1.23 0.52 – – 

Received other HCBS at baseline

(not creceived) – – 1.90 0.04
Outcome Evaluation of the National Family 

Caregiver Support Program 7-13 

 

 What Do These Results Mean? 

There is no clear suggestion that NFCSP is serving as a gateway to receiving HCBS. Thus, these 

findings suggest that NFCSP could be more integrated with HCBS providers. The caregivers and 

CRs receiving other HCBS from their local AAA or another paid organization did appear to initiate 

NFCSP services subsequently, either through discovery of their own or through introduction to the 

NFCSP services by the organization providing the other HCBS.

A higher percentage of NFCSP caregivers are receiving respite care and educational services from 

family and friends than non-NFCSP caregivers. The same was found for respite care and educational 

services from other paid organizations. However, when comparing the amount of support received 

from other sources, the NFCSP caregivers receive fewer respite hours, especially from family and 

friends.

Results also suggest that the caregiver’s connection with NFCSP increased the likelihood of a 

referral for legal assistance. In contrast, the non-NFCSP caregivers reported more use of home 

delivered meals and homemaker services. This is not surprising considering that the evaluation’s 

sample frame for Comparison caregivers came from finding CRs who were AAA clients for OAA 

services such as home-delivered meals and homemaker services. 
Outcome Evaluation of the National Family 

Caregiver Support Program 8-1 

 

8. Caregiver Outcome Evaluation 

Evaluation Question #4: To what extent do NFCSP program participants’ outcomes differ 

from those of caregivers who do not receive support and services from the NFCSP? 

To compare outcomes between NFCSP caregivers and Comparison group caregivers, the evaluation 

team used caregivers’ longitudinal survey response data to measure change in outcomes such as 

Mental health, Physical health, Caregiver burden, Caregiver satisfaction, and Caregiver confidence. 

8.1 Propensity Score Matching 

To evaluate the effectiveness of NFCSP services across time, the first step was to create a 

longitudinal dataset of caregivers interviewed at baseline and who remained eligible (i.e., “still a 

caregiver”) for a follow-up interview (N = 908). Each of these caregivers was assigned a caregiver 

group based on the actual use of NFCSP services as described in Section 4.1 of this report. The full 

longitudinal sample included 908 caregivers: 491 Program caregivers and 417 Comparison 

caregivers. 

A linear regression analysis was conducted for each of the five outcome measures as described in 

Section 4.3 of this report: PROMIS Mental health, PROMIS Physical health, Zarit Caregiver 

Burden, Caregiver satisfaction, and Caregiver confidence. 

Each regression model’s main variables of interest to evaluate the effectiveness of NFCSP services 

across time were:

• Time. Single item indicating data collection time (Time 1 = 0, Time 2 = 1). Whereas 

Time 1 indicated baseline measurement, Time 2 indicated either 6-month or 12-month 

measurement, specific to each caregiver’s latest completed survey. 

• Caregiver Group. (Program = 1; Comparison = 0). 

• Time x Group. An interaction term that is the product of the two variables above. This 

value = 0 for all interactions except Time 2 for the Program group.
Outcome Evaluation of the National Family 

Caregiver Support Program 8-2 

 

An ideal way of evaluating the effectiveness of NFCSP services would be to compare outcomes for 

caregivers who are alike in all aspects except if they received the services. In a randomized controlled 

trial, this is done by randomization of treatment or intervention that minimizes the differences 

between treatment and control groups. However, such designs are often not feasible in real-world 

situations. An alternative approach is to use data from an observational study to isolate caregivers 

receiving NFCSP services and compare them to caregivers who are not receiving those services on 

selected outcomes. Statistical methods such as propensity score matching can then be used to make 

the two groups as similar as possible on known characteristics. 

The evaluation team took the latter approach and used propensity score matching to improve the 

balance of key baseline characteristics that can influence the probability of receiving caregiver 

support services between the Program group and the Comparison group. After exploration of 

several caregiver characteristics, the following variables were selected for matching based on their 

conceptual relevance to the receipt of NFCSP services and their correlation with the caregiver 

outcomes: 

1. Caregiving Intensity. The percentage of five ADLs with which the caregiver provided 

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

(bathing), with greater values indicating greater intensity (range 0 to 100%). 

2. Other Respite Care. Binary variable assessing whether caregiver received respite 

services from sources other than the selected agency in the past 6 months (0=No, 

1=Yes).

3. CR Dementia Diagnosis. Binary measure capturing whether CR was diagnosed with 

dementia (0=No, 1=Yes).

4. Spouse Relationship to CR. Binary variable assessing whether CR was a spouse of the 

caregiver (0=No, 1=Yes).

5. Caregiver Race (Black/African American). Binary measure capturing whether 

caregiver was Black/African American (0=No, 1=Yes). 

6. Caregiver Education. Binary variable assessing caregiver’s education level (0=Less 

than HS graduate, 1=HS graduate or above). 

7. Caregiver Employment. Binary variable measuring whether caregiver was working for 

pay either full or part time (0=No, 1=Yes).

8. Caregiver Child Care. Binary measure capturing whether caregiver also cared for 

children under 18 years old (0=No, 1=Yes).
Outcome Evaluation of the National Family 

Caregiver Support Program 8-3 

 

9. CR Resists Aid. Binary variable assessing whether CR resisted caregiver’s attempts to 

provide aid (0=No, 1=Yes).

10. Caregiver Lives with CR. Binary variable assessing whether caregiver lives with CR

(0=No, 1=Yes).

11. Other Education. Single item capturing whether caregiver received educational

services from sources other than the selected agency in the past 6 months (0=No, 

1=Yes).

12. Caregiver Age. Continuous variable assessing caregiver’s age (range 21 to 95).

13. Caregiver Income. Categorical variable assessing caregiver’s annual income 

(range 1=11,500 dollars or less to 8=More than 70,000 dollars). If the annual income 

was missing but monthly income was available, the annual income was supplemented 

with appropriately converted monthly income. 

Table 8-1 compares the values of covariates used in matching the full sample of Program and 

Comparison caregivers (N = 908). Program and Comparison caregivers differed significantly on 11 

of the 13 baseline characteristics.

Table 8-1. Comparison of Program and Comparison caregivers before and after propensity 

score matching: Covariate means or percentages (N = 908)

Baseline covariates 

Program caregivers 

(N = 491) 

Comparison caregivers 

(N = 417) 

Caregiver age 68.04 65.27**

Caregiver Black/African American 13.03% 17.27%

Caregiver HS graduate or above 92.06% 88.01%*

Caregiver employed 24.44% 29.26%

Caregiver income category 4.53 3.97**

Caregiving high intensity 45.00% 32.92%***

Caregiver cares for children under 18 years old 7.13% 11.27%*

Caregiver lives with CR 87.98% 75.78%***

Caregiver received other respite services 60.49% 38.85%***

Caregiver received other educational services 34.22% 23.26%**

CR is a spouse 53.16% 43.41%*

CR diagnosed with dementia 62.93% 39.09%***

CR resists aid 34.83% 25.90%**

*p < 0.05, **p < 0.01, ***p < 0.001

 Note: Differences in means were calculated on variables with imputed values. 

On average, the Program caregivers were older, had higher incomes, and greater caregiving intensity. 

They were also more likely to be high school graduates, live with CRs, receive other respite and 

educational services, and less likely to care for children under 18 years of age. Program caregivers’ 

CRs were more likely to be spouses, have a dementia diagnosis, and resist aid. 
Outcome Evaluation of the National Family 

Caregiver Support Program 8-4 

 

For each caregiver, the 13 characteristics were included in a logistic regression model to estimate the 

probability of being in the Program group. The propensity scores obtained with this method were 

used to create matches between caregivers in the Program and Comparison groups for the sample of 

caregivers used to analyze the effect of NFCSP respite care services on mental health, physical 

health, and burden. Matches were also created on the sample of caregivers used to analyze the effect 

of NFCSP educational services on satisfaction and confidence. After matching, the differences 

between Program and Comparison caregivers on the 13 baseline characteristics decreased 

substantially. (See Appendix C: Evaluation Methodology for details about propensity score matching 

and imputation for missing data.) 

8.2 Comparison of Outcomes Between Program Caregivers and 

Comparison Caregivers 

To examine the effect of the NFCSP services on the five caregiver outcomes, the evaluation team

conducted a series of D-i-D analyses. This type of analysis looks at the change in outcomes across 

time for Program caregivers versus Comparison caregivers. For each outcome, the regression model 

included (1) the outcome score as the dependent variable, (2) the three variables of interest—

caregiver group, time (outcome score Time 1 and outcome score Time 2), group by time interaction, 

and (3) all 13 covariates used in matching for double-robustness (Stuart, 2010). Each model also 

included outcome timing, a binary variable assessing whether the caregiver’s latest outcome used in the 

analysis was collected at 6 months or 12 months (0=6 months, 1=12 months) to adjust for any 

effect of outcome timing.

8.2.1 Weighted Regression Results – Full Longitudinal Sample 

Table 8-2 presents the results of multiple linear regression using the full longitudinal sample 

(491 Program; 417 Comparison) and predicting outcome scores from Time 1 to Time 2 after 

propensity score matching (weighted). The table includes unstandardized coefficients (B) for each 

predictor. The unstandardized coefficients are interpreted as the amount of change in the dependent 

variable for one unit increase in the independent variable, while controlling for the effect of all other 

variables in the model. 
Outcome Evaluation of the National Family 

Caregiver Support Program 8-5 

 

Table 8-2. Regression results: Effects on outcomes among 908 caregivers

Variable 

Coefficient estimates (B) for: 

Mental 

health 

Physical 

health Burden+ Satisfaction Confidence 

Time (reference is baseline) -0.06 -0.05 0.05 -0.05 0.03

Group (reference is Comparison) -0.78** -0.07 0.83*** -0.11 0.07

Time x Group 0.05 -0.07 0.05 0.00 -0.01 

Caregiver age 0.00 -0.02* 0.00 -0.01** -0.01*

Caregiver Black/African American 0.10 -0.09 -0.74** 0.04 -0.03

Caregiver HS graduate or above -0.08 0.13 0.76* -0.19 0.04

Caregiver employed 0.67** 0.87*** -0.01 -0.21* -0.08

Caregiver income 0.07 0.23*** 0.16*** -0.04** 0.00

Caregiving high intensity 0.11 -0.13 0.01 0.25* 0.22**

Cares for children <18 years old -0.33 -0.31 0.65** -0.17 0.01

Caregiver lives with CR -0.43 0.17 0.08 -0.14 0.05

Received other respite services 0.36 0.23 0.23 0.00 0.04

Received other educ services -0.17 -0.34 0.65 -0.01 -0.13*

CR is spouse -0.46 -0.42 0.02 -0.05 -0.02

CR diagnosed with dementia -0.30 0.12 0.81*** -0.06 -0.07

CR resists aid -1.42*** -0.84*** 1.53** -0.24** -0.12*

Outcome timing -0.42* -0.09 0.27 0.01 -0.06

*p < 0.05, **p < 0.01, ***p < 0.001

Note: Burden is the only outcome score where lower is better.

The first row (for time) shows that time alone did not have a significant effect on caregiver 

outcomes, meaning that for both groups, the scores did not change significantly from Time 1 to 

Time 2. The second row (for caregiver group) shows that the Program caregivers have significantly

worse scores for Mental health and Caregiver burden. The third row (time x group) shows that the 

change in the outcome scores was not significantly different for Program and Comparison group 

from Time 1 to Time 2.

What Do The Results Mean? 

The propensity score matched regression models results on the full longitudinal sample of 908 

caregivers did not show a significant effect of NFCSP on outcomes (see Table 8-2). The model 

results show that higher income caregivers had better physical health but higher burden and lower 

caregiver satisfaction. As expected, caregivers with a CR diagnosed with Alzheimer’s disease or 

dementia had more caregiver burden. Findings on the full longitudinal sample show that caregivers 

with a CR who resists aid had worse mental health, worse physical health, more caregiver burden, 

and were less satisfied in caregiving. NFCSP may want to provide more caregiver education and 

training to help caregivers cope with difficult behaviors from their CRs.
Outcome Evaluation of the National Family 

Caregiver Support Program 8-6 

 

8.2.2 Effect of NFCSP Respite Care on Mental Health, Physical Health, and 

Caregiver Burden 

Caregivers often said “yes” to using NFCSP respite care, but did not provide respite hours that 

quantifiably supported service use. For this analysis, it was important to have a clear and clean 

distinction between Program caregivers who used NFCSP respite care and Comparison caregivers 

who did not use NFCSP respite care. 

Studies have found that respite care is an effective intervention for caregiver well-being (Sorrell 

2014; Jeon et al. 2005; Hughes et al. 2014, Vandepitte et al., 2016). For example, Richardson et al. 

(2013), found that lack of time to devote to personal needs contributes to poor caregiver physical 

and mental health outcomes. For this analysis, the evaluation team wanted a group of Program 

caregivers who had clearly used NFCSP respite services. Therefore, the Program group caregivers 

included in the D-i-D analyses had to have reported an average (across interviews) of 4 or more 

hours of NFCSP respite care per week as their responses to “How many hours per week of respite care do 

you usually receive through this program?” Furthermore, Comparison caregivers who had conflicting use 

responses across the evaluation period were removed. 

Table 8-3 shows the adjusted mean PROMIS Mental health scores for the Comparison group and 

the Program groups. Time 1 is subtracted from Time 2 to quantify the change in the score. Results 

indicate that the Comparison group had better Mental health scores. Both groups saw an 

improvement in Mental health scores from Time 1 to Time 2. The D-i-D (calculations: 0.342 minus 

0.325 and 0.024 minus 0.007) is very small at 0.017 and not statistically significant.

Table 8-3. Differences in mean PROMIS Mental health scores for Program and Comparison 

groups over time

 

Mental health 

Comparison 

(N = 370) 

Program 

(N = 307) Difference (C-P) 

Time 2 12.636 12.294 0.342

Time 1 12.612 12.287 0.325

Difference (T2-T1) 0.024 0.007 0.017 (D-i-D)

Table 8-4 shows the adjusted mean PROMIS Physical health scores for the Comparison group and 

the Program groups. Time 1 is subtracted from Time 2 to quantify the change in the score. Both 

groups saw a decline in Physical health scores from Time 1 to Time 2, with the Program group 

having more decline. The D-i-D was 0.160 and not statistically significant. 
Outcome Evaluation of the National Family 

Caregiver Support Program 8-7 

 

Table 8-4. Differences in mean PROMIS Physical health scores for Program and Comparison 

groups over time

 

Physical health 

Comparison 

(N = 370) 

Program 

(N = 307) Difference (C-P) 

Time 2 14.056 13.711 0.345

Time 1 14.085 13.900 0.186

Difference (T2-T1) -0.029 -0.189 0.160 (D-i-D)

Table 8-5 shows the adjusted mean Zarit Caregiver burden scores for the Comparison group and the 

Program group. Time 1 is subtracted from Time 2 to quantify the change in the score. The Program

group had significantly more Caregiver burden and the Program group also had a (favorable) 

decrease in their Zarit Caregiver burden mean score from Time 1 to Time 2. More specifically, the 

results in Table 8-5 indicate that while the Caregiver burden increased for the Comparison caregivers 

from Time 1 to Time 2 (by 0.145 points), the burden for the Program group decreased by 0.095 

points, resulting in the overall adjusted D-i-D of 0.239 points. This difference, however, was not 

statistically significant.

Table 8-5. Differences in mean Zarit Caregiver Burden scores for Program and Comparison 

groups over time after propensity score adjustment

 

Caregiver Burden 

Comparison 

(N = 370) 

Program 

(N = 307) Difference (C-P) 

Time 2 10.403 10.947 -0.544*

Time 1 10.258 11.041 -0.784**

Difference (T2-T1) 0.145 -0.095 0.239 (D-i-D)

*p < 0.05, **p < 0.01, ***p < 0.001 

Figure 8-1 illustrates the change in mean Caregiver burden scores over time for the two caregiver 

groups. The Program group’s burden (dashed line) decreased, while the Comparison group’s burden 

increased (became worse).
Outcome Evaluation of the National Family 

Caregiver Support Program 8-8 

 

Figure 8-1. Changes in adjusted mean Zarit Caregiver burden scores for Program and 

Comparison groups between Time 1 and Time 2

11.04

10.95

10.26

10.40

9.8

10.0

10.2

10.4

10.6

10.8

11.0

11.2

Time 1 Time 2

Zarit Burden Score

Program Comparison

 What Do These Results Mean? 

Although the result was not statistically significant, the D-i-D analysis that controlled for thirteen 

covariates, such as respite care from other sources and caregiving intensity, did find a reduction in 

caregiver burden among the Program caregivers but not among the Comparison caregivers. Because 

the sample of Program caregivers was restricted to only those receiving 4 or more hours of respite 

per week, this finding suggests that there may be a certain minimum amount of respite care needed 

to reduce caregiver burden. It is worth noting that Program caregivers reported experiencing more 

burden than the Comparison caregivers at both Time 1 and Time 2, implying that the caregivers 

who received NFCSP respite care were in greater need of support to reduce burden. 

The D-i-D analysis did not find any significant differences in the change in the mental health or 

physical health between the Program caregivers and the Comparisons caregivers. Both groups of 

caregivers had small improvements in mental health over time and both had declines in physical 

health. 

8.2.3 Effect of NFCSP Educational Services on Satisfaction and 

Confidence 

Because the goal of providing caregiver educational services is to increase caregivers’ ability to 

provide care, to cope, and to handle CRs’ challenging behaviors (Graff et al., 2006), it was
Outcome Evaluation of the National Family 

Caregiver Support Program 8-9 

 

hypothesized that education amount would be most relevant to improve Caregiver satisfaction and 

confidence. In analyzing the effect of NFCSP services on Caregiver satisfaction and confidence, the 

evaluation team wanted a group of Program caregivers who had clearly used NFCSP educational 

services. Therefore, the Program group caregivers included in the D-i-D analyses had to have 

reported using an educational service at least once during the evaluation timeframe. Note that more 

NFCSP Program caregivers used respite than educational services, so this inclusion criteria greatly 

reduced the number of Program caregivers in the D-i-D analysis.

The amount of NFCSP educational services was calculated by using the responses to “how many 

times” questions described in Chapter 4.1 of this report. The number of times a caregiver used 

educational services was averaged across time for each caregiver. (See Appendix C: Evaluation 

Methodology for more details.) The aforementioned restrictions reduced the Program group by 

86 percent (from 491 to 71) and the Comparison group by 16 percent (from 417 to 352). 

Table 8-6 shows the adjusted mean Caregiver satisfaction scores for the Comparison group and the 

Program group. Time 1 is subtracted from Time 2 to quantify the change in the score. Both groups 

experienced an increase in satisfaction across time. The Comparison group had higher caregiver

satisfaction; the differences were not significant, but this could be due to the smaller sample size. 

The overall D-i-D of 0.021 is very small and not statistically significant.

Table 8-6. Differences in mean Caregiver satisfaction scores for Program and Comparison 

groups over time

 

Caregiver satisfaction 

Comparison 

(N = 352) 

Program 

(N = 71) Difference (C-P) 

Time 2 4.014 3.812 0.202

Time 1 3.965 3.784 0.182

Difference (T2-T1) 0.049 0.028 0.021 (D-i-D)

Table 8-7 shows the adjusted mean Caregiver confidence scores for the Comparison group and the 

Program group. Time 1 is subtracted from Time 2 to quantify the change in the score. The 

Comparison caregivers’ confidence decreased from Time 1 to Time 2, while the mean score 

increased for the Program caregivers. The overall D-i-D was -0.05, but not statistically significant.
Outcome Evaluation of the National Family 

Caregiver Support Program 8-10 

 

Table 8-7. Differences in mean Caregiver confidence scores for Program and Comparison 

groups over time

 

Caregiver confidence 

Comparison 

(N = 352) 

Program 

(N = 71) Difference (C-P) 

Time 2 4.339 4.583 -0.245

Time 1 4.374 4.569 -0.195

Difference (T2-T1) -0.036 0.014 -0.050 (D-i-D)

Figure 8-2 depicts the change in adjusted mean Caregiver confidence scores over time. 

Figure 8-2. Changes in mean Caregiver confidence scores for Program and Comparison groups 

between Time 1 and Time 2

4.57 4.58

4.37

4.34

4.20

4.25

4.30

4.35

4.40

4.45

4.50

4.55

4.60

Time 1 Time 2

Caregiver Confidence

Program Comparison

 What Do These Results Mean? 

Both groups of caregivers had small improvements in caregiver satisfaction over time. Although not 

statistically significant, the D-i-D analysis found an increase in caregiver confidence among the 

Program caregivers but not among the Comparison caregivers. 
Outcome Evaluation of the National Family 

Caregiver Support Program 9-1 

 

9. Results from the Care Recipient Survey 

CRs were interviewed at baseline (N = 1,338) and 12 months (N = 212). There were 206 dyads of 

caregivers with CRs who were interviewed at both baseline and 12-months.

9.1 Survey Items 

In addition to “Caregiver Receives Needed Help” (see Section 5.1.13), below are the five questions 

from the CR survey:

1. Quality of Life Rating. CR’s rating of his/her quality of life 

(1=Poor to 5=Excellent).

2. Mental Health Rating. CR’s rating of his/her mental health, including mood and 

ability to think (1=Poor to 5=Excellent).

3. Social Activities Satisfaction Rating. CR’s rating of his/her satisfaction with social 

activities and relationships (1=Poor to 5=Excellent).

4. Frequency of Emotional Problems. CR’s frequency of being bothered by emotional 

problems such as feeling anxious, depressed, or irritable in the past 7 days 

(1=Never to 5=Always).

5. Remain at Home. CR’s perceived importance of having a caregiver in helping him/her 

remain living at home (1=Not at all important to 3=Very important).

The baseline frequencies for all of the above variables are provided in Appendix F. 

9.2 Care Recipient and Caregiver Well-Being 

For those CRs who were part of a caregiver-CR dyad and had both baseline and 12-month data 

(N = 206), the evaluation team compared the CR responses to the quality of life and well-being 

items by caregiver group assignment (Program, N = 91 versus Comparison, N = 115) at baseline 

and at 12 months. Results, presented in Table 9-1, indicate that, on average, caregivers and CRs did 

not differ significantly on any of the quality of life and well-being measures at baseline.
Outcome Evaluation of the National Family 

Caregiver Support Program 9-2 

 

Table 9-1. Comparison of care recipients’ responses and caregivers’ responses on the quality 

of life and well-being measures at baseline and at 12 months

Measure 

Baseline 12 months 

CRs Caregivers CRs Caregivers 

Quality of life rating 3.01 3.13 3.12 3.11

Mental health rating 3.26 3.30 3.35 3.35

Social activities satisfaction rating 2.99 2.93 2.87 3.07

Frequency of emotional problems 2.52 2.44 2.44 2.43

As shown in Table 9-2, at baseline, a higher CR mental health rating was associated with a higher 

caregiver mental health rating (Spearman’s correlation coefficient, rs = 0.18, p = 0.0095). There was 

also a positive association between CR and caregiver rating of satisfaction with social activities 

(rs = 0.19, p = 0.0065). 

Table 9-2. Correlations between care recipients’ responses and caregivers’ responses on the 

quality of life and well-being measures at baseline (N = 206 dyads)

Measure 

CG quality 

of life rating 

CG mental 

health rating 

CG social activities 

satisfaction rating 

CG frequency of 

emotional problems 

CR quality of life rating 0.10 0.02 0.00 -0.01

CR mental health rating 0.10 0.18** 0.11 -0.14

CR social activities 

satisfaction rating

0.11 0.07 0.19** -0.08

CR frequency of emotional 

problems

-0.07 -0.06 -0.07 0.15*

*p < 0.05, **p < 0.01, ***p < 0.001

Notes: CG=Caregiver. 

Table 9-3 presents correlations at 12 months. Greater CR satisfaction with social activities was 

related to greater caregiver quality of life rating (rs = 0.20, p= 0.0053). 

Table 9-3. Correlations between care recipients’ responses and caregivers’ responses on the 

quality of life and well-being measures at 12 months (N = 206 dyads)

Measure 

CG quality 

of life rating 

CG mental 

health rating 

CG social activities 

satisfaction rating 

CG frequency of 

emotional problems 

CR quality of life rating 0.13 0.11 0.09 -0.08

CR mental health rating 0.12 0.25*** 0.12 -0.08

CR social activities 

satisfaction rating

0.20** 0.13 0.13 -0.11

CR frequency of emotional 

problems

-0.05 -0.14* -0.04 0.13

*p < 0.05, **p < 0.01, ***p < 0.001

Note: CG=Caregiver. 
Outcome Evaluation of the National Family 

Caregiver Support Program 9-3 

 

 What Do These Results Mean? 

Among 206 caregiver-CR dyads, the comparison of responses showed that mental health was 

correlated; CRs with better mental health had caregivers with better mental health and fewer 

emotional problems. Interestingly, greater CR satisfaction with social activities was related to higher 

caregiver quality of life rating. These findings suggest that some aspects of mental health and wellbeing may not be independent, but instead shared between CRs and caregivers who may be 

influencing each other in dynamic, bidirectional ways (Wolff et al., 2016). Furthermore, interventions 

or programs targeting CR social activities may have a positive effect on both the caregiver and the 

CR. 
Outcome Evaluation of the National Family 

Caregiver Support Program 10-1 

 

10. Summary 

10.1 Profile of Caregivers and Care Recipients 

The mean age of caregivers who took the survey at baseline was 66 years, and 55 percent were age 

65 or older. However, this is an older group of caregivers than the nationally reported mean age of 

49 years among all informal caregivers (National Alliance for Caregiving & AARP, 2015) or the 

reported mean age of 59 among caregivers of Medicare recipients surveyed as part of the National 

Health and Aging Trends Study (Riffin et al., 2017). This is because the evaluation only included 

informal caregivers of CRs who were age 60 and older and caregivers of CRs of any age diagnosed 

with Alzheimer’s disease and/or related memory disorders. Forty-three percent of the caregivers in 

the evaluation were a spouse of the CR, a statistic higher than the nationally reported 10 percent of 

caregivers (National Alliance for Caregiving & AARP, 2015).

Similar to national statistics, 61 percent of caregivers were female and 44 percent were children of 

the CR (National Alliance for Caregiving & AARP, 2015). Among caregivers taking care of their 

parents, 54 percent said it was true that they were chosen by their family as a child to provide care 

for all family members. From 43 different states, 78 percent of the caregivers were White, 17 percent

Black or African American, and 5 percent reported other race. Almost one-fourth of caregivers said 

that they had to stop working because of their caregiving responsibilities, a common situation 

among informal caregivers (Feinberg, 2013). 

The mean age of CRs was 81 years. Two-thirds of the CRs were diagnosed with arthritis, and half of 

the CRs were diagnosed with Alzheimer’s disease, dementia, or a memory problem. Almost onethird of caregivers said they had a CR who resisted aid. 

The activities performed by the highest percentage of caregivers at any time were keeping track of 

money or bills, helping to prepare meals, and helping with housework. On a daily basis, however,

the most common type of assistance was with medications and preparing meals. On a weekly basis, 

three-fourths of caregivers helped with the CR’s medications including administering intravenous 

fluids and injections, activities that become more difficult if the CR has a complex chronic condition 

or has recently been hospitalized (Moon et al., 2017).
Outcome Evaluation of the National Family 

Caregiver Support Program 10-2 

 

The caregiving activity deemed the most difficult was bathing or showering. Interestingly, 71 percent

of CRs needed assistance with this ADL, but among those with bathing assistance needs, 21 percent

of the caregivers were not providing that help. This is an important area for further research to learn 

whether the CR is receiving other assistance with bathing or showering, or is struggling to perform 

this activity himself or herself. 

With the exception of caregiver confidence, the NFCSP Program caregivers had worse outcomes at 

baseline than the Comparison caregivers. There was a decline, or worsening, in caregiver selfreported physical health during the evaluation period. The caregiver burden worsened slightly over 

time. A drill-down into the individual items suggest that the caregivers were feeling stressed between 

caring for the CR and trying to meet other responsibilities, and feeling as though they did not have 

enough time for themselves. Similar to study findings by Hughes et al. (2014), caregivers who 

responded that they were “definitely not” receiving all they help they need had a significantly higher 

mean caregiver burden score than those who did not respond with “definitely not”. 

10.2 NFCSP Service Use, Effectiveness, Targeting, and Perceived 

Helpfulness 

More caregivers used NFCSP respite care than education/training, individual counseling, and 

support group services combined. Among the caregivers who used respite at baseline, 86 percent 

said the service was very helpful and 42 percent deemed respite care the most helpful service 

received from their AAA. However, among those on the NFCSP client list who did not use respite 

care at baseline, one-third reported that they did not know that the agency offered the service.

Among the caregivers who used an educational service, 75 percent said the service was very helpful.

Among those on the NFCSP client list who did not use educational services, 56 percent of 

caregivers reported that they did not know that the agency offered these services. 

This evaluation found that Program caregivers who received four or more hours of respite per week 

experienced a decrease in self-reported caregiver burden over time while the Comparison caregivers 

without NFCSP respite experienced an increase in caregiver burden. The second key finding of the 

evaluation was that Program caregivers who used education, counseling, or support group services 

experienced an increase in caregiver confidence while Comparison caregivers’ confidence decreased 

during the evaluation timeframe. 
Outcome Evaluation of the National Family 

Caregiver Support Program 10-3 

 

Among the caregivers receiving NFCSP respite care, higher respite hours were associated with a 

significantly higher likelihood of responding “Definitely yes” when asked if the services they 

received from their AAA enabled them to continue caregiving. The evaluation team found similar 

results with the number of times a caregiver used educational services, but the strength of the 

educational times association with service enabling continued caregiving was not as high as the 

respite amount. At the AAA level, the “Definitely yes” frequency of responses to the Continued 

caregiving question was higher for caregivers who were clients of AAAs that assessed client 

satisfaction more often than annually, in comparison to the caregivers with AAAs with less frequent 

assessments.

The evaluation did find evidence that NFCSP services are reaching one of the five groups of 

caregivers with greatest social or economic need. More specifically, the caregivers who were 

Hispanic, Black, or other (approximately 25% of the sample) used more respite care hours than 

White caregivers. However, when caregivers were categorized by a summary of socioeconomic 

indicators (with an SES need index), the index was not associated with the NFCSP respite hours. 

The evaluation also found that caregivers younger than 60 years old were receiving more respite 

hours. One could hypothesize that younger caregivers have more competing responsibilities that 

necessitate the need for longer hours of respite. 

In contrast to the SES need, the evaluation did find that NFCSP services are reaching the caregivers 

with more caregiver burden. First, in propensity matching for the D-i-D analysis (Chapter 8, 

Table 8-1), the following caregiver characteristics were associated with the receipt of NFCSP respite 

care: older age, greater caregiving intensity, living with CR, CR being a spouse, CR having 

Alzheimer’s disease or dementia diagnosis, and CR resisting aid. Second, the analysis with AAA 

process data found that caregivers of the AAAs that included the impact of caregiving in their needs 

assessment had significantly higher mean burden scores in comparison to caregivers in the AAAs 

that did not include such evaluation. These findings suggest that agency procedures and policies are 

targeting the caregivers with the most caregiving burden. Yet, are agencies equipped with the right 

tools to gauge change in burden across the caregiving continuum and provide caregiver services and 

support in a timely and efficient manner? NFCSP caregiver services are helping our nation’s 

informal caregivers, but more research is needed to better understand how to determine the ideal 

amount of NFCSP support for each caregiver to make a difference in their outcomes and longevity 

as a caregiver. 
Outcome Evaluation of the National Family 

Caregiver Support Program 10-4 

 

10.3 Evaluation Strengths and Limitations 

This was the first national longitudinal survey of caregivers designed to evaluate the NFCSP. The 

strengths of the evaluation include the use of a comparison group of caregivers and standardized 

outcome measures to measure change in caregiver burden and well-being. Furthermore, the survey 

instrument items were designed to parse out caregivers’ use of NFCSP respite care and educational 

services separately. Lastly, the caregiver data collected in the evaluation coupled with the AAA-level 

data collected during the process evaluation allowed for the investigation into what types of 

organizational structures, approaches, and strategies for delivering NFCSP services are associated 

with optimal participant-level outcomes.

Although the evaluation used sophisticated techniques to randomly select a nationally representative 

sample of caregivers, the non-response bias of caregivers who chose not to participate is unknown, 

and thus, a limitation to the evaluation. At baseline, 45 percent of caregivers who received 

recruitment letters and phone calls either never responded to outreach attempts or opted out of 

participation. Most likely, there are non-random differences between caregivers who participated in 

the evaluation and caregivers who did not (i.e., non-response bias). Lastly, one drawback of the 

12-month timeframe, as opposed to a 24-month or longer timeframe, is that a longer timeframe may

have resulted in a greater amount of measureable change in caregiver outcomes. However, the 

shorter timeframe likely lent itself to greater retention of caregivers for follow-up data collection. 

 Conclusion 

The outcome evaluation shows that the caregiver services provided by the NFCSP are effective in 

reducing caregiver burden, increasing caregiver confidence and increasing the caregivers’ perception 

that the services are helping them continue caregiving. The evaluation found that NFCSP does 

successfully target caregivers with the most caregiving burden. Consistent with other studies focused 

on caregiver services, the findings from this evaluation suggest that the amount of caregiver services 

provided by NFCSP matters and that there may be an ideal amount of respite care needed to reduce 

burden and an ideal amount of education/training, counseling and support group services to 

improve confidence. 
Outcome Evaluation of the National Family 

Caregiver Support Program R-1 

 

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