Putting Data to Work for Older People

RESEARCH BRIEF NUMBER 5 • SEPTEMBER 2011

Supporting Family Caregivers Through Title III of the OAA 

by Leslie Foster and Rebecca Kleinman, Mathematica Policy Research

Since passage of the Older Americans Act (OAA) in 1965, the Administration on Aging (AoA) has supported the delivery 

of services to older Americans, helping them maintain independence and remain in their own homes. Through its Aging 

Services Network, including State Units on Aging (SUAs), Area Agencies on Aging (AAAs), tribal partners, and service 

providers, AoA works to provide services designed to mitigate the effects of declining physical health and functioning 

experienced by frail older adults. This brief, the fifth in a series that presents findings from AoA’s National Survey of 

OAA Program Participants, focuses on the National Family Caregiver Support Program (NFCSP). Authorized under 

OAA Title III in 2000, the NFCSP provides caregivers with information or help so they can connect with services and 

resources; training, education, counseling, and support groups; respite care; and supplemental goods and services to 

help family and informal caregivers care for loved ones at home.1

The Aging Services Network provides a range of 

community-based services—home-delivered and 

congregate meals, case management, transportation, and homemaker and caregiver support. Such 

services enhance both the quality of life and social 

interaction, and reduce the effects of disability for 

homebound and more active seniors. Funded under 

Title III of the OAA, services are available to individuals age 60 and older, though delivery is targeted 

to the most vulnerable elderly. 

Background What Is The Aging Services Network?

Family caregivers are a mainstay of home- and communitybased long-term care in the United States. Research from 

the last decade has shown that family caregivers make 

an important economic contribution to the care of people 

needing long-term services and supports (estimated at 

$450 billion in 2009 by Feinberg et al. 2011).2 Without 

family caregivers, the cost and burden to the nation’s 

long-term care system would be substantial. Many frail 

older adults who live at home receive assistance from 

family caregivers (61 percent), and the share of those who 

use paid supportive services and rely on help from family 

caregivers is even larger (72 percent) (Johnson and Weiner 

2006). If family caregivers become unable to help as much 

as needed or in the ways needed, then nursing home care 

or paid in-home services may be the only long-term alternatives. These alternatives would likely require significant 

public financing, which is increasingly constrained. 

When caregivers are supported in their roles, however, 

they may be able to provide better care for longer periods 

of time, to the benefit of their families and society as a 

whole. The NFCSP recognizes caregivers as consumers 

and provides services and supports that help them care 

for relatives at home. 

The Aging Services Network has been involved with 

both frail older adults and family caregivers for a long 

time; however, the authorization of the NFCSP in 2000 

brought more attention and resources to the development 

of a multifaceted system of support services for caregivers. Annually, more than 600,000 caregivers receive 

NFCSP services (AoA). These services include help 

or information so caregivers can access long-term care 

services in their communities, training and education to 

help them address problems and make decisions, respite 

to provide breaks from caregiving, and supplemental 

goods and services to help them continue providing care.

1

Persons eligible for NFCSP services include informal (unpaid) caregivers of people age 60 or older; adult caregivers of individuals of any 

age with Alzheimer’s disease or related illness; and grandparents or 

other nonparent relatives, age 55 or older, caring for an adult age 18 to 

59 with a disability or a child younger than 18. 

2

Gibson and Houser (2007) describe the factors used to estimate the 

economic value of the unpaid contributions of family caregivers, 

including the number of such caregivers in the United States under 

various definitions and the number of hours spent providing care. 
This research brief draws data from the Fifth National 

Survey of OAA Program Participants to describe NFCSP 

caregivers who help frail older relatives.3 It describes 

the types and amount of care the caregivers provide, the 

services caregivers receive from the NFCSP, and the 

benefits they report deriving from NFCSP services. Data 

were examined separately for spouses, adult children, and 

other caregivers because members of these groups were 

expected to have different characteristics and circumstances and, perhaps, different experiences as caregivers. 

Key similarities and differences between and among these 

caregiver groups are noted throughout the brief. 

Caregiver Characteristics 

and Circumstances 

NFCSP caregivers are a diverse group. Forty-seven 

percent are adult children caring for a parent; 39 percent 

are spouses caring for a spouse; and 14 percent are grandchildren, nieces or nephews, daughters- or sons-in-law, or 

other relatives or friends. 

Spouses, adult children, and other caregivers have notably 

different characteristics and personal circumstances. Compared to adult children and other caregivers, spouse caregivers are more likely to be men, to be older than 70, to 

be in fair or poor health themselves, and to report having 

a health problem that affects caregiving (Table 1). Spouse 

caregivers have less education and lower income, on average, than adult children and other caregivers. Virtually all 

spouse caregivers live with their care recipients. Conversely, adult children and other caregivers are more likely 

than spouse caregivers to be in the workforce and they are 

less likely than spouses to live with their care recipient. 

Such diverse personal circumstances may affect caregivers’ availability, physical ability to help with personal and 

household tasks, and experience of stress and strain.

NFCSP caregivers help frail older relatives who have a 

range of conditions and needs. Many help someone who 

may be at risk for nursing home entry. Fifty-nine percent 

care for someone with Alzheimer’s disease, dementia, 

or other memory-related illness, and 67 percent care for 

someone with at least three limitations in activities of 

daily living (ADLs) (not shown). Fifty-five percent of 

NFCSP caregivers say the person they care for needs 

someone nearby almost always to be safe (reported by 

63 percent of spouses, 51 percent of adult children, and 

45 percent of other caregivers). 

2

3

The Fifth National Survey of OAA Program Participants included 

only caregivers of adults. The grandparents and other relatives caring 

for children were not included.

Finally, the advanced age of NFCSP caregivers is striking. 

Sixty-eight percent of all NFCSP caregivers are older 

than 60 and care for someone 85 or older. The majority of spouses (61 percent) who care for someone 85 or 

older are themselves older than 80 (not shown).4

 Therefore, in addition to NFCSP services, these caregivers are 

eligible for other OAA services to help them maintain 

their own independence. These services may include 

home-delivered or congregate meals, case management, 

homemaker services, and transportation.

Table 1. NFCSP Caregivers Have Diverse 

Characteristics and Circumstances 

(Percentages)

Characteristic

Adult 

Child Spouse Other

Female 77.6 66.1 81.3

Age

60 or younger 61.5 5.6 49.8

61 to 70 34.5 22.4 29.4

71 to 80 3.9 43.8 11.3

81 or older 0.2 28.1 9.6

At Least Some College 70.4 51.1 52.3

Employment Status

Working full or part time 51.4 9.8 40.0

Retired 26.4 78.6 36.4

Not working 22.2 11.6 23.5

Annual Household Income

At or below $20,000 20.4 21.7 34.1

$20,001 to $50,000 41.5 65.6 42.7

Above $50,000 38.1 12.7 23.2

Self-Rated Health Status

Excellent or very good 38.4 27.5 37.6

Good 34.4 36.1 42.0

Fair or poor 27.2 36.4 20.4

Health Problem or Disability 

Affects Caregiving

35.0 51.1 25.3

Lives with Care Recipient 57.0 98.8 50.1

Number of Respondents 831 715 246

Source: Calculations based on the Fifth National Survey of OAA 

Program Participants, 2009.

Amount and Types of Assistance 

Provided by Caregivers

Seven in 10 NFCSP caregivers say they provide at least 40 

hours of care per week—the equivalent of a full-time job. A 

4

Compared with the general U.S. population of family caregivers and 

care recipients, NFCSP caregivers in the survey sample are more likely 

to be 75 or older (22 versus 5 percent) and to care for someone who is 

75 or older (87 versus 63 percent) (Link and Klocinski 2010). 
3

sizable proportion of spouses (38 percent) and some adult 

children and other caregivers (18 and 15 percent, respectively) say they provide round-the-clock care (not shown). 

Spouses, adult children, and other caregivers provide 

similar types of care. At least three-quarters of caregivers 

in each group say they help with each of five instrumental 

activities of daily living (IADLs)—laundry, meal preparation, and cleaning; local trips for shopping or medical 

appointments; arranging for services from others; handling medical needs; and managing household finances 

(not shown). Somewhat smaller proportions of caregivers 

(at least two-thirds of spouses, adult children, and other 

caregivers) help with one or more of four activities of daily 

living—dressing, eating, bathing, and using the toilet.

Self-Reported Strain

Caregiving results in emotional, physical, and financial 

strain for some NFCSP caregivers. This is especially pronounced among spouse caregivers. Overall, emotional strain 

is the most commonly reported type of strain, but it affects 

about twice as many spouses and adult children (roughly 

half) as other caregivers (roughly one-quarter) (Figure 1). 

In addition, 44 percent of spouses say caregiving causes 

physical strain, compared with 30 percent of adult children 

and 18 percent of other caregivers. Similarly, 33 percent 

of spouses say they experience financial strain as a result 

of caregiving, compared with 23 percent of adult children 

and 17 percent of other caregivers. Among caregivers who 

report having a health problem or disability themselves, half 

said caregiving worsens the problem (not shown). 

Receipt of NFCSP Services

The NFCSP is designed to alleviate the emotional, physical, and financial strain of caregiving through the types 

of services it provides. Which service types do caregivers most commonly receive, and how do they say they 

benefit? Eighty percent of caregivers say they receive 

information about or help accessing services or resources; 

about 60 percent report getting supplemental goods and 

services, such as canes or walkers, emergency response 

systems, or nutritional supplements for the care recipient; 

half say they receive respite services; and a third participate in training, education, counseling, or support groups 

(Figure 2). There is little variation in the percentages of 

spouses, adult children, and other caregivers who receive 

each of these services. Three-quarters of caregivers said 

they receive two or more types of services (not shown).

Figure 1. Spouses Are Most Likely to Say 

Caregiving Leads to Strain

Physical

strain

Emotional

strain

Financial

strain

0 20 40 60 80 100

47

50

24

18

30

44

33

23

17

Percentage of Caregivers Reporting:

Adult Child Spouse Other

Source: Calculations based on the Fifth National Survey of OAA 

Program Participants, 2009.

Note: The figure shows the share of respondents who rate their stress as 

4 or 5 on a scale from 1 (no strain at all) to 5 (very much of a strain).

Figure 2. Receipt of NFCSP Services Is Similar Across 

Caregiver Types

Information

Supplemental

services

Respite

Training or

education

0 20 40 60 80 100

52

56

52

57

63

55

74

83

78

35

34

36

Percentage of Caregivers Reporting They Received:

Adult Child Spouse Other

Source: Calculations based on the Fifth National Survey of OAA 

Program Participants, 2009.
When asked to name the most useful of the NFCSP 

services they received, 72 percent of those who received 

respite care (temporary relief from caregiving responsibilities) said that it was the most useful service (not shown). 

Among those not receiving respite, 43 percent said help 

or information about connecting to resources was most 

useful; followed by those citing supplemental goods and 

services (32 percent); and training, education, counseling, 

or support groups (25 percent). In general, spouses were 

more likely than adult children to say training, education, 

counseling, or support groups was the most useful service. 

Self-Reported Program Benefits

Caregivers are highly satisfied with NFCSP services; 80 

percent rated the services as excellent or very good (not 

shown). Moreover, large majorities report deriving important 

benefits from those services. For example, 80 percent say the 

services help them provide care longer than they could 

otherwise, 76 percent say the services help them feel less 

stress, and 77 percent say NFCSP services help them deal 

with the difficulties of caregiving. These proportions vary 

little across spouses, adult children, and other caregivers. 

The more types of services caregivers receive from the 

NFCSP, the more likely they are to report benefits. As 

Figure 3 illustrates, 92 percent of caregivers who say 

they received all four types of services also say the services help them deal with the difficulties of caregiving. 

In contrast, 61 percent of caregivers receiving only one 

type of service report the same benefit. The relationship 

between number of services received and the share of 

caregivers reporting a benefit holds for every benefit the 

survey asks about (a total of 12 benefits). 

Figure 3. Share of Caregivers Reporting Benefits Rises with Number of NFCSP Services Received

Feel less stress Provide care 

longer

Deal with diff 

of caregiving

Number of

Service Types

Reported

20

40

60

80

100

0

87

76

62

83

94

81

71

82

92

75

61

86

Percentage of Caregivers

1

2

3

4

iculty

4

Source: Calculations based on the Fifth National Survey of OAA Program Participants, 2009.

Summary 

NFCSP caregivers who help frail older relatives are in 

distinct groups: adult children caring for a parent are the 

largest group, spouses caring for a spouse are a slightly 

smaller group, and other relatives are a much smaller 

group. More than half of all caregivers say they devote 

at least 40 hours each week to a variety of personal and 

household tasks. On average, spouses and adult children 

are more likely than other caregivers to say they experience emotional strain as a result of caregiving. Spouses 

are more likely than caregivers in the other groups to 

say caregiving leads to physical and financial strain. 

They are also more likely to report that they provide 

round-the-clock care. 

Despite differences in their personal circumstances and 

caregiving-related strain, caregivers in the survey sample 

use similar NFCSP services and report similar benefits. 

Among those who receive it, respite is cited as a key 

NFCSP service, surpassing information, training and 

education, and other services or goods. Across all caregivers in the survey sample, 8 in 10 say NFCSP services are 

excellent or very good, and the same proportion of caregivers say the services help them provide care for longer 

than they could otherwise. The more types of services 

caregivers receive, the more likely they are to report these 

and other benefits, such as feeling less stress.

Data

Information on Title III participants was drawn from the 

Fifth National Survey of OAA Program Participants. 

Westat Inc. conducted the telephone survey in 2009, 
administering it to more than 5,000 people who reported 

receiving OAA Title III services. The survey used a twostage sampling design, first selecting a sample of AAAs 

and then randomly sampling participants from each 

selected AAA by service type. The number of participants selected from each AAA was proportional to the 

number of participants who received that particular service from the sampled AAA. This brief includes data for 

participants in the caregiver module of the survey (1,793 

respondents), which is cross-sectional and based upon 

participants’ self-report. All analyses in this brief apply 

sample weights to account for this design. Additional 

data from and more detailed documentation for the 

Fifth National Survey and other AoA data sources are 

available on the interactive AGing Integrated Database 

(AGID) at http://data.aoa.gov.

References

Administration on Aging. NFCSP Resource Guide. Available at: www.lewin.com/content/publications/2479.pdf.

Feinberg, Lynn, Susan Reinhard, Ari Houser, and Rita 

Choula. “Valuing the Invaluable: 2011 Update. The 

Growing Contributions and Costs of Family Caregiving.” 

Washington, DC: AARP, 2011.

5

Gibson, Mary Jo, and Ari Houser. “Valuing the Invaluable: 

A New Look at the Economic Value of Family Caregiving.” 

Washington, DC: AARP, June 2007.

Johnson, Richard, and Joshua Weiner. “A Profile of Frail 

Older Americans and Their Caregivers.” The Retirement 

Project, Occasional Paper Number 8. Washington, DC: 

Urban Institute, February 2006.

Link, Greg, and Jennifer Klocinski. “The National Family Caregiver Support Program: Evaluating Its Effectiveness.” National Council on Aging/Administration on 

Aging Conference, Chicago, IL, March 16, 2010.

This series is funded by AoA, and presents analyses 

conducted by Mathematica Policy Research using 

data from AoA’s National Surveys of Program 

Participants. These surveys collect information 

from Title III participants about their demographics, 

socioeconomic status, health, and functioning, as 

well as their service use and client-reported service 

impact and quality. 

For more information about this study, please contact 

Leslie Foster, senior researcher at Mathematica, 

lfoster@mathematica-mpr.com.

About This Series

Visit our website at http://results.aoa.gov