Order Code RL34123
Family Caregiving to the Older Population:
Background, Federal Programs, and
Issues for Congress
Updated October 24, 2008
Kirsten J. Colello
Analyst in Gerontology
Domestic Social Policy Division

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Family Caregiving to the Older Population: Background,
Federal Programs, and Issues for Congress
Summary
Family caregiving to older individuals in need of long-term care encompasses
a wide range of activities, services, and supports. Caregiving can include assistance
with personal care needs, such as bathing, dressing, and eating, as well as other
activities necessary for independent living, such as shopping, medication
management, and meal preparation. In addition, family caregivers may arrange,
supervise, or pay for formal or paid care to be provided to the care recipient.
Family caregivers fulfill the majority of the need for long-term care by older
persons with chronic disabilities in the United States. As a result of increases in life
expectancy, as well as the aging of the baby-boom generation, demand for family
caregiving to the older population is likely to increase. However, demographic trends
such as reduced fertility, increased divorce rates, and greater labor force participation
among women may limit the number of available caregivers to older individuals, as
well as the capacity for caregivers to provide needed care.
Although many family caregivers find caregiving for an older family member
a rewarding experience, other life circumstances, in addition to caregiving, may
increase caregiver stress. For example, family members may not live in close
proximity to the care recipient, they may face the competing demands of child care
and elder care, and they may have to manage work with caregiving responsibilities.
As a result, family caregiving can lead to emotional and physical strain and financial
hardship. These effects are more likely to be felt among those caring for persons
with high levels of disability or cognitive impairment. Caregiver stress has been
linked to nursing home admission for the care recipient, thus interventions that can
reduce stress may also reduce nursing home placement.
Recognizing family caregivers as an important part of the nation’s long-term
care delivery system, the federal government has established programs and initiatives
that provide direct supports to caregivers, such as respite care, education and training,
tax relief, and cash assistance. These benefits are targeted at family caregivers to
reduce stress and financial hardship, and to improve caregiving skills, among other
things. Other federal programs and initiatives provide home and community-based
long-term care services and supports to the care recipient. These programs can
indirectly benefit caregivers in relieving caregiver burden by either supplementing
the informal care they are providing or substituting with paid support.
Three sets of policies that would provide direct assistance to family caregivers
to older adults are briefly discussed in the last section of this report. These policy
issues, which have been the subject of discussion among federal policymakers and
other interested stakeholders, include the following: caregiver services and supports,
flexible workplace accommodations and income security, and additional tax credits.
This report will be updated as warranted.

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Contents
What Is Caregiving? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
Background . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2
Who Receives Care? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
Who Provides Care? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
How Many Caregivers Are There? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
What Are Their Characteristics? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9
Long-Distance Caregiving . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10
The Sandwich Generation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
Work and Caregiving . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12
How Much Care Do They Provide? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13
The Effects of Family Caregiving . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14
The Economic Value and Costs of Caregiving . . . . . . . . . . . . . . . . . . . . . . 17
Federal Government Initiatives to Assist Caregivers . . . . . . . . . . . . . . . . . . . . . . 18
Programs and Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19
Older Americans Act (OAA) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19
Ask Medicare . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22
Alzheimer’s Disease Demonstration Grants to States (ADDGS) . . . . 23
Senior Companion Program (SCP) . . . . . . . . . . . . . . . . . . . . . . . . . . . 23
Social Services Block Grant (SSBG) . . . . . . . . . . . . . . . . . . . . . . . . . . 23
Medicaid . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25
Employment Policy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25
Tax Policy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26
Dependent Care Tax Credit (DCTC) . . . . . . . . . . . . . . . . . . . . . . . . . . 26
The Dependent Care Assistance Program (DCAP) . . . . . . . . . . . . . . . 27
Exemptions for Dependents . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28
Head of Household Status . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29
Unreimbursed Medical Expenses . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29
Issues for Congress . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30
Caregiver Services and Supports . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30
Workplace Accommodations and Income Security . . . . . . . . . . . . . . . . . . . 31
Tax Credits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31
Appendix A. Federal Programs and Initiatives Offering Direct and Indirect
Benefits to Caregivers: Eligibility, Services, and Scope of Benefit . . . . . . 33

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List of Tables
Table 1. Distribution of Those Non-Institutionalized Aged 65 and Older
Receiving Care, by Level of Disability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
Table 2. Distribution of Those Non-Institutionalized Aged 65 and Older
Receiving Care, by Type of Care and Level of Disability . . . . . . . . . . . . . . . 5
Table 3. Alternative Estimates of Number of Caregivers . . . . . . . . . . . . . . . . . . . 7
Table 4. Relationship of Caregivers to Care Recipients, 2002 . . . . . . . . . . . . . . . 9
Table 5. Monthly Hours of Help Provided by Informal Caregivers to
Noninstitutionalized Frail Older Adults, by Type and Relationship, 2002 . 13
Table 6. Selected National Family Caregiver Support Program Services, by Number
and Percent of Caregivers Receiving Service, FY2006 . . . . . . . . . . . . . . . 22
Table 7. Selected SSBG Expenditures, by Service, 2006 . . . . . . . . . . . . . . . . . . 24

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Family Caregiving to the Older Population:
Background, Federal Programs, and Issues
for Congress
What Is Caregiving?
Caregiving encompasses a wide range of activities, services, and supports to
assist persons who are limited in their capacity for self-care because of a physical,
cognitive, or mental disability or condition that results in a functional impairment and
dependence on others. Those in need of assistance over an extended period of time
often require long-term care services and supports. Although the need for long-term
care affects people of all ages, the likelihood of needing long-term care assistance
increases with age.
Caregiving assistance to older persons with long-term needs can be provided in
a variety of settings, including the care recipient’s or caregiver’s home; in a
community residential setting, such as an assisted living facility; or in an institution,
such as a nursing home. Formal caregiving refers to care that is provided by paid
individuals who are employed by a long-term care service organization or agency,
such as a nursing home or home health care agency, or who are self-employed.
Informal caregiving refers to assistance provided by unpaid individuals, such as a
family member, friend, or neighbor. This report focuses on family caregiving —
informal care provided primarily by spouses and children — to the older population.
Family caregiving activities include assistance with personal care needs, or
activities of daily living (ADLs), such as eating, bathing and showering, dressing,
using the toilet, walking across a small room, and transferring (getting in and out of
a bed or chair). They may also include assistance with activities that are necessary
for independent living, or instrumental activities of daily living (IADLs), such as
shopping for groceries or personal items, performing housework or yardwork,
managing money, preparing meals, using a telephone, doing laundry, getting around
outside the home, and taking medications.
Other family caregiver activities may include accessing the health care and
social services systems, communicating with providers and insurers, and advocating
for the care recipient. In addition to hands-on assistance, caregivers may arrange,
supervise, or pay for formal care to be provided to the care recipient, either as
temporary relief from the caregiver’s responsibilities (i.e., respite care) or on a more
permanent basis. As caregiving needs change over time, formal and informal care
arrangements can also shift. Formal or paid care may supplement or substitute for
the informal caregiving activities provided by a family member.

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CRS-2
Background
Family caregivers fulfill the majority of the need for long-term care by older
persons with chronic disabilities in the United States. More than 90% of older care
recipients receive informal care, either alone or in combination with formal care.1
Demographic trends such as increases in life expectancy, as well as advances in
medical care, have enabled persons with disabilities to live longer. As a result, the
demand for informal care provided to older relatives can last many years. The aging
of the baby-boom generation is also likely to increase demand for family caregiving
to the older population. Moreover, most older individuals prefer to remain in their
own homes and live in the community for as long as possible.2 Finally, the difficulty
of recruiting and retaining paid long-term care workers has placed increased pressure
on family caregivers.3 The growing demand for care provided in the home has
focused the attention of federal and state governments on efforts to expand programs
that provide services and supports to family caregivers.
As demand for caregiving to older persons with disabilities is likely to increase,
other demographic trends, such as smaller family sizes and increased divorce rates,
may limit the number of available caregivers to older individuals, as well as the
capacity for caregivers to provide needed care. Increased labor force participation
among women, who traditionally have assumed the role of family caregiver, may
make them unavailable to take on this role.4 Also, family members who no longer
live in close proximity may limit the direct-care assistance that families are able to
provide.
Family caregivers are diverse in terms of gender, age, relationship to the care
recipient, and life circumstances. For many, caregiving is a rewarding activity;
however, some may face challenges associated with their caregiving responsibilities.
Adult children caring for an elder parent might experience increasing stress or
financial hardship as a result of the competing demands of work or child care. Others
may experience increased physical and emotional strain sometimes associated with
assisting a spouse or parent who has a disability or is cognitively impaired. Research
indicates that, over time, a larger proportion of family caregivers were providing
1 Brenda C. Spillman and Kirsten J. Black, Staying the Course: Trends in Family
Caregiving, AARP Public Policy Institute (Washington, DC, November 2005). This report
is based on an analysis of the National Long Term Care Survey, 1999. (Hereinafter referred
to as Spillman and Black, Staying the Course: Trends in Family Caregiving, 2005.)
2 AARP, Beyond 50.5 — A Report to the Nation on Livable Communities: Creating
Environments for Successful Aging, AARP Public Policy Institute (Washington, DC, May
2005).
3 National Commission for Quality Long-Term Care, The Long-Term Care Workforce: Can
the Crisis Be Fixed? Institute for the Future of Aging Services (Washington, DC, January
2007).
4 Bureau of Labor Statistics, Changes in Men’s and Women’s Labor Force Participation
Rates, accessed at [http://www.bls.gov/opub/ted/2007/jan/wk2/art03.htm] on October 8,
2008.

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CRS-3
assistance to persons with higher levels of disability.5 Moreover, technical advances
in home care mean that caregivers are more likely to assist with medical equipment
and medications that require more skilled forms of care in the home, including
oxygen equipment, intravenous medications, and catheters.6 These caregivers may
have little training or formal assistance in providing such care.
The federal government has expressed an interest in directly supporting family
caregivers who provide the majority of long-term care assistance to older individuals,
as evidenced by the National Family Caregiver Support Program enacted under the
Older Americans Act Amendments of 2000 (P.L. 106-501). Sustaining informal
caregiving can offset the need for publicly financed care. However, demographic
shifts that may affect the supply of family caregivers raise concerns about whether
caregivers will be able to meet the potential increase in demand for long-term care
assistance by older individuals in the future. A recent study projects that the disabled
older population, even under the most optimistic scenario, will increase by 50%
between 2000 and 2040.7 Over this same period, the share of older adults receiving
paid long-term care is projected to increase (from about 22% to 26%), while those
receiving unpaid assistance from an adult child will fall (from 28% to 24%).8
Recognizing family caregivers as an important part of the nation’s long-term
care delivery system, the federal government has established programs and initiatives
that provide direct support to caregivers. Direct supports such as respite care,
education and training, tax relief, and cash assistance are targeted at caregivers to
reduce stress and financial hardship, and to improve caregiving skills, among other
things. Other federal programs and initiatives provide home and community-based
long-term care services and supports to the care recipient. These programs can
indirectly benefit caregivers in relieving caregiver burden by either supplementing
the informal care being provided or substituting some informal care with paid
support. Services provided to care recipients that can indirectly assist caregivers may
include formal personal care services, assistive devices, and home modifications,
among other things. Access to federal services that provide direct and indirect
benefits to caregivers have different eligibility criteria and benefits. As a result, these
services are often limited and may be insufficient in terms of the scope and duration
of benefits.
5 Mary Jo Gibson, In Brief — Staying the Course: Trends in Family Caregiving, AARP
Public Policy Institute (Washington, DC, November 2005).
6 AARP, “Valuing the Invaluable: A New Look at the Economic Value of Family
Caregiving,” AARP Public Policy Institute (Washington, DC, June 2007). (Hereinafter
referred to as AARP, Valuing the Invaluable, 2007.)
7 Richard W. Johnson et al., Meeting the Long-Term Care Needs of the Baby Boomers: How
Changing Families Will Affect Paid Helpers and Institutions, The Retirement Project,
Discussion Paper 07-04, The Urban Institute (Washington, DC, May 2007).
8 Ibid.

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CRS-4
Who Receives Care?
About 5.5 million adults aged 65 and older — about 16% of the U.S. population
aged 65 and older — receive long-term care services and supports. Of those
receiving services, the majority (70%, or 3.8 million) live in the community; the
remaining 30% (1.7 million) live in institutional settings.9
Generally, those individuals who live in long-term care facilities are the most
impaired; however, many older individuals with fairly significant limitations live in
the community. Eligibility for assistance through publicly and privately financed
long-term care benefits typically requires people to have limitations in or need
supervision with at least two or more ADLs. Of those aged 65 and older who live in
the community and receive long-term care, more than half (55.6%) have three or
more limitations in ADLs, 29.3% have limitations in one or two ADLs, and 15.1%
have less intensive needs, requiring assistance only with IADLs (see Table 1).
Table 1. Distribution of Those Non-Institutionalized Aged 65 and
Older Receiving Care, by Level of Disability
Total
Number
(in thousands)
Percent
IADLs only
558
15.1
1-2 ADLs
1,086
29.3
3-4 ADLs
990
26.7
5-6 ADLs
1,068
28.9
Total
3,701
100.0
Sources: Federal Interagency Forum on Aging-Related Statistics, “Older Americans 2004: Key
Indicators of Well-Being,” Table 37b (Washington, DC: U.S. Government Printing Office, November
2004), p. 115; Data are from the 1999 National Long Term Care Survey.
Notes: Data refer to Medicare enrollees living in the community who report receiving personal care
from a paid or unpaid helper for a chronic disability.
Among those older individuals who live in the community and receive
long-term care, the vast majority receive some form of informal care. For two-thirds
of this group (65.5%), informal care is the only source of care provided in the home;
another quarter (25.9%) receive some combination of informal and formal care, and
the remainder (8.5%) receive formal care alone. Although the presence of formal
care is more likely to increase as a care recipient’s level of disability increases, half
of those most severely impaired with five or six ADLs (50.6%) rely on informal
caregivers alone for their personal care needs (see Table 2).
9 CRS calculations based on unpublished tabulations from the 1999 National Long Term
Care Survey by Brenda C. Spillman, the Urban Institute, 2003. For further information, see
CRS Report RL33919, Long-Term Care: Consumers, Providers, Payers, and Programs, by
Carol O’Shaughnessy, Julie Stone, Laura B. Shrestha, and Thomas Gabe.

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CRS-5
Table 2. Distribution of Those Non-Institutionalized Aged 65 and
Older Receiving Care, by Type of Care and Level of Disability
Informal
Informal and
Formal
Care Only
Formal Care
Care Only
Total
Total
Number
Percent Distribution
(in thousands)
IADLs only
80.1
12.8
7.1
100.0
558
1-2 ADLs
75.8
16.1
8.1
100.0
1,086
3-4 ADLs
62.2
28.1
9.7
100.0
990
5-6 ADLs
50.6
40.8
8.6
100.0
1,068
All
65.5
25.9
8.5
100.0
3,701
Sources: Federal Interagency Forum on Aging-Related Statistics, “Older Americans 2004: Key
Indicators of Well-Being,” Table 37b (Washington, DC: U.S. Government Printing Office, November
2004), p. 115; Data are from the 1999 National Long Term Care Survey.
Notes: Informal care refers to unpaid assistance provided to a person with a chronic disability living
in the community. Formal care refers to paid assistance. Data refer to Medicare enrollees living in
the community who report receiving personal care from a paid or unpaid helper for a chronic
disability. Figures may not add to 100.0% due to rounding.
Other factors, such as gender and living arrangement, influence the type and
amount of informal care received. Research findings indicate that women are more
likely than men to receive any help, but that men receive a greater amount of care.10
Older men typically receive assistance from one caregiver, primarily their spouses,
whereas older women are more likely to have multiple caregivers. Variation in the
amount of care may be related to gender differences in the types of care received. For
example, men are more likely to receive help with personal care, housekeeping, and
meal preparation activities, whereas women are more likely to receive help with
transportation, shopping, and home repairs. Those who live with someone else
receive a substantially greater amount of informal care than those who live alone.
Alternatively, research has found that those who live alone, are not married, and live
in public housing are more likely to use paid care.11
Income of the care recipient may also influence the type of care received. Data
from a 2002 nationally representative study of the older population found that poor
and near poor older care recipients living in the community with severe disabilities
(i.e., three or more ADLs) were more likely to receive paid personal care assistance
than those with incomes greater than 125% of the federal poverty level (FPL).12
10 Sharon Tennstedt, Family Caregiving in an Aging Society, presented at the U.S.
Administration on Aging Symposium, Baltimore, MD, March, 1999, accessed at
[http://www.aoa.gov/prof/research/famcare.pdf] on October 8, 2008.
11 Ibid.
12 Richard W. Johnson and Joshua M. Wiener, A Profile of Frail Older Americans and Their
Caregivers, The Retirement Project, Occasional Paper Number 8, The Urban Institute
(Washington, DC, February 2006). (Hereinafter referred to as Johnson and Wiener, A
Profile of Frail Older Americans and Their Caregivers, 2006.) The authors’ estimates are
based on data from the 2002 Health and Retirement Study, a nationally representative survey
(continued...)

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CRS-6
Greater reliance on paid help among the poor elderly most likely reflects assistance
from Medicaid and other public support programs. The same study found that those
with incomes between 125% and 400% of the FPL were more likely to rely on unpaid
assistance only and received less paid support than those with lower incomes. These
individuals are less likely to meet income eligibility requirements for public benefits,
such as Medicaid, and may be unable to afford the costs of privately paid care.
Who Provides Care?
How Many Caregivers Are There?
Estimates of the number of informal caregivers range from 7 million to 54
million (see Table 3). There is wide variation in these estimates for several reasons,
including differences in the definitions of caregiver and care recipient, the amount
and intensity of care provided, and the data collection methodology. Methodological
considerations include whether the respondent is asked to identify themself as a
caregiver or whether the care recipient identifies those who provide care, the time
frame for reporting caregiving activities (i.e., past year or no recall period), and the
sample size. These differences in methods make it very difficult to compare
estimates across surveys.
Table 3 shows the range of estimates of the number of caregivers from selected
national surveys, as well as a comparison of survey characteristics and methodology.
Estimates at the high end of the range include those individuals who provide care to
the adult-disabled or to individuals of all ages and use a less restrictive measure of
disability that may also include short-term disability or acute spells of illness.
Data from the 1999 National Long Term Care Survey (NLTCS) — the only
national survey that estimates the number of persons providing care to an older
population (aged 65 and older) — estimated that 7 million individuals were
providing care to individuals aged 65 and older. This estimate is more conservative
than other survey estimates in part because a care recipient’s functional status or
disability is measured as receiving help with ADLs or IADLs for at least three
months, a more restrictive definition that measures chronic disability, defined as
ADL or IADL impairments lasting at least three months, among the older population.
12 (...continued)
of older Americans aged 55 and older and living in the community. The study classified
respondents as disabled if they reported any difficulty because of health or memory
problems with at least one ADL (bathing, getting in and out of bed, eating, dressing, walking
across the room, and using the toilet) or IADL (shopping for groceries, preparing hot meals,
using the telephone, taking medications, and managing money). Respondents were not
considered disabled if they expected their limitations to last less than three months. The
analysis is restricted to those aged 65 and older and living in the community in 2002. In this
analysis, “poor” refers to care recipients with incomes less than 100% of the federal poverty
level; “near poor” refers to care recipients with incomes between 100% and 125% of the
poverty level.

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CRS-7
Table 3. Alternative Estimates of Number of Caregivers
NSFH
NLTCS
SIPP
NCOA/PEW
NFCA
NAC/AARP
1997, 1996
1998, 1996
Year
1992
1994
1999
Wave 5
Wave 7
1997
2000
1997
2003
Caregivers
(in
millions)
52.0 7.1
7.0 13.0 9.5
7.0
54.0
22.4
44.4
Unit of
observation Individuals
Individuals
Individuals
Individuals
Individuals
Individuals
Households
Individuals
Care recipient characteristics
Age
All ages
65+
15+
All ages
55+
All ages
50+
18+
Functional
Physical or mental
ADL or IADL impairments
ADL or IADLa
Long-term illness
Unspecified Disability
or
Need help to
Need help to
status
condition, or
of 3+ monthsa
impairment
or disability
chronic illness take care of
take care of self
disability
self
Methodological considerations
Timeframe for
Past 12 months
Not specified
Not specified
Past month
NA
NA
Past 12
Past 12 months
reporting
months
Caregiver
Self-identified
Care recipient identified up to Care recipient
Self-identified
Self-identified
Self-identified Self-identified Self-identified
designation
five helpers
identified up to two
helpers
Sample size
10,005 individuals;
About 6,000 aged 65+
36,700 households; 36,700
200 caregivers
1,000
1,509
6,139
about 3,000
individuals with disabilities
about 60,000
households; about
individuals;
caregivers
individuals;
caregivers
individuals; about
60,000
266 caregivers
1,247
2,500 with ADLs
individuals; 2,829
caregivers
or IADLs
caregivers

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CRS-8
Source: Adapted by CRS from Administration on Aging, “The National Family Caregiver Support Program, Resource Guide,” prepared by The Lewin Group, Inc. (Washington, DC,
August 2002), at [http://www.lewin.com/content/publications/2479.pdf], accessed on October 8, 2008.
Notes:
National Survey of Families and Households (NSFH), 1992: Administration on Aging (AoA) and the Office of the Assistant Secretary for Planning and Evaluation (ASPE), Informal
Caregiving: Compassion in Action, 1998, at [http://aspe.hhs.gov/daltcp/reports/carebro2.pdf], visited October 8, 2008.
National Long Term Care Survey (NLTCS), 1994: AoA and ASPE, Informal Caregiving: Compassion in Action, 1998, at [http://aspe.hhs.gov/daltcp/reports/carebro2.pdf], visited
October 8, 2008; NLTCS, 1999, tabulated by The Lewin Group.
Survey of Income and Program Participation (SIPP), 1997, 1996, Wave 5, Adult Disability Topical Module, tabulated by The Lewin Group; SIPP, 1998, 1996, Wave 7 Home Care
(Caregiver) Topical Module, tabulated by The Lewin Group.
National Council on Aging (NCOA) and Pew Charitable Trusts (PEW), 1997: Donna L. Wagner, “Long-Distance Caregiving for Older Adults,” Healthcare and Aging, National Council
on the Aging, 1997.
National Family Caregivers Association (NFCA), 2000: NFCA, Caregiver Survey-2000, Kensington, MD, 2000.
National Alliance for Caregiving (NAC) and the American Association of Retired Persons (AARP), 1997: NAC and AARP, Family Caregiving in the U.S.: Findings from a National
Survey, Washington, DC: AARP, 1997; NAC and AARP, 2003: NAC and AARP, Caregiving in the U.S., Washington, DC: NAC and AARP, 2004.
a. ADLs refer to activities of daily living, such as bathing, dressing, toileting, transferring from a bed to a chair, and eating; IADLs refer to instrumental activities of daily living, such
as shopping, money management, preparing meals, and doing laundry.

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CRS-9
What Are Their Characteristics?
Spouses and adult children are the most common source of informal care to the
older population with long-term care needs. A nationally representative survey of
older Americans found that among older disabled persons receiving informal care in
the community in 2002, more than 80% received some care from a spouse or adult
child, 13% received care from another relative, and almost 7% received care from a
non-relative.13 In addition, family caregiving activities are highly concentrated; more
than two-thirds of care recipients received informal help from one caregiver.14
Marital status plays a large role in determining the caregiver relationship (see
Table 4). Married care recipients were more likely to receive help from one adult
caregiver, primarily their spouse. Unmarried care recipients were more likely to
receive help from more than one helper, most often from their adult children.
Table 4. Relationship of Caregivers to Care Recipients, 2002
Marital Status of Care Recipient
All Care
Married Care
Unmarried Care
Recipients
Recipients
Recipients
Spouse
27.6
66.7
n/a
Daughter/daughter-in-law
36.4
18.5
49.1*
Son/son-in-law
16.4
7.3
22.9*
Grandchild
6.4
3.3
8.6*
Other relative
6.6
2.0
9.7*
Friend/neighbor
6.6
2.1
9.8*
All caregivers
100.0%
100.0%
100.0%
Sources: Johnson and Wiener, A Profile of Frail Older Americans and Their Caregivers, Table 5.1,
2006; data are from the 2002 Health and Retirement Study.
Notes: Estimates are based on a sample of 2,427 caregivers to frail adults aged 65 and older living in
the community, of which 1,044 assisted married adults and 1,383 assisted unmarried adults. An
asterisk indicates that the estimate differs significantly (p < .10) from the estimate for married
recipients. Figures may not add to 100.0% due to rounding.
Women are the majority of informal caregivers to older adults. Because women
have longer life expectancies than men and caregiving is still viewed by many as a
woman’s responsibility, wives are more likely to care for their husbands and older
widows are more likely to be cared for by their daughters. In the 2002 Health and
Retirement Survey (HRS), daughters were more than twice as likely than sons to
provide care to their parents, regardless of the parent’s marital status. However, the
percentage of male caregivers has increased during the past few decades. Using data
from the NLTCS, researchers reported a 50% increase in men reporting they were
13 Johnson and Wiener, A Profile of Frail Older Americans and Their Caregivers, 2006.
14 Ibid.

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CRS-10
primary caregivers from 1984 to 1994.15 Male caregivers were more likely to be
spouses and least likely to be friends or neighbors. However, women are more likely
to engage in the more physically demanding aspects of caregiving. A MetLife study
of working men and women caregivers found that while men were just as likely as
women to provide assistance with IADLs, such as managing medications, shopping,
and transportation, women reported more involvement with personal care tasks or
ADLs, such as bathing, dressing, and toileting.16
Caregivers can be of any age and face particular challenges based on their own
life circumstances, including the competing demands of work, child care
responsibilities, and chronic illness and decline in their own personal health. Most
spouses who provide care to their disabled elderly spouse are aged 65 and older, with
44% of spouse caregivers in their 70s and about one-quarter in their 80s.17 Because
of advanced age and chronic illness, spouse caregivers may be in poor health
themselves. About one-third described themselves to be in fair or poor health, more
than 20% reported one or more limitations with ADLs or IADLs, and 17% reported
poor mental health, measured by the presence of depressive symptoms. Only a small
fraction of spouse caregivers reported they were employed full-time (6%); another
10% reported working part-time.18
Adult children providing care to their older parents are most likely to be in their
40s and 50s (68%). The greatest proportion of adult child caregivers live separately
from their older parent (68%). About one-third (32%) of adult child caregivers live
with their parent. More than half of adult children providing care to their older
parents worked full-time (53%), another 10% worked part-time.19
Long-Distance Caregiving. Observers have expressed concern that family
caregiving may be affected by a more mobile society, resulting in greater
long-distance caregiving and a reduced supply of family caregivers.20 However,
some researchers have questioned this notion, suggesting instead that our society is
actually less mobile than in previous decades.21 Data from the 2002 HRS indicate
15 Brenda C. Spillman and Liliana E. Pezzin, “Potential and Active Family Caregivers:
Changing Networks and the ‘Sandwich’ Generation,” The Milbank Quarterly,
78(3):347-374, 2000. (Hereinafter referred to as Spillman and Pezzin, Potential and Active
Family Caregivers, 2000.)
16 MetLife Mature Market Institute, The Metlife Study of Sons at Work: Balancing
Employment and Eldercare (New York: Metropolitan Life Insurance Company, 2003).
17 Johnson and Wiener, A Profile of Frail Older Americans and Their Caregivers, 2006.
18 Ibid.
19 Ibid.
20 MetLife Mature Market Institute, Miles Away: The Metlife Study of Long-Distance
Caregiving (New York: Metropolitan Life Insurance Company, 2004). (Hereinafter referred
to as MetLife Mature Market Institute, Miles Away, 2004.)
21 Douglas A. Wolf and Charles F. Longino, Jr., “Our ‘Increasingly Mobile Society’? The
Curious Persistence of a False Belief,” The Gerontologist, vol. 45, no. 1 (February 2005),
(continued...)

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CRS-11
that the majority (63%) of frail older adults have at least one adult child living in
close proximity to them (defined as within 10 miles); almost 20% have two or more
adult children nearby.22
A study by MetLife found that half of long-distance caregivers, defined as living
more than one hour from the care recipient, reported that they played a secondary
helper role, typically to another sibling who lived near the care recipient. Although
primary caregivers may be more likely to live in close proximity to the care recipient,
the same study found that a sizeable group of long-distance caregivers (23%) were
the primary or only care provider. Both primary and secondary long-distance
caregivers reported living an average distance of 450 miles away. The majority
reported managing needed services, helping with IADLs such as shopping and
managing finances, and visiting at least a few times a month. These activities were
not only time consuming, with half spending the equivalent of one full day a week
managing care from a distance, but added a substantial financial burden in terms of
travel costs. Long-distance caregivers reportedly spent an average of $392 per month
on travel and out-of-pocket expenses. Nearly 80% of the caregivers surveyed were
employed either full- or part-time.23
The Sandwich Generation. Many researchers have focused attention on the
“sandwich generation” of caregivers — those caught between the demands of caring
for their aging parents and supporting their dependent children. Some have
expressed concerns that delayed fertility among women will lead to greater
caregiving burden, with demand for caregiving only increasing as the baby-boom
population ages. Approximately 3.5 million individuals, primarily women, were
potentially responsible for both an aging parent and a dependent child.24 According
to a 2004 survey of all family caregivers, including those caring for individuals under
age 65 with disabilities, more than one-third reported the presence of a child under
the age of 18 living at home. Adult caregivers under the age of 50 were more likely
to have a child in their home, compared with caregivers aged 50 and older. More
than half (52%) of caregivers between the ages of 18 to 34 and almost 6 in 10 (57%)
caregivers between the ages of 35 to 49 had a child under age 18 living in the
household.25
Although data suggest that many caregivers have been squeezed into the
“sandwich generation,” other research suggests that only a small subset of this group
are simultaneously providing support to a dependent child and parent. For this
reason, some researchers disagree about the caregiving demand and burden faced by
the “sandwich generation,” arguing that the phenomenon is an exception rather than
the norm. These researchers maintain that child care activities and eldercare
21 (...continued)
pp. 5-11).
22 Johnson and Wiener, A Profile of Frail Older Americans and Their Caregivers, 2006.
23 MetLife Mature Market Institute, Miles Away, 2004.
24 Spillman and Pezzin, Potential and Active Family Caregivers, 2000. This report is based
on an analysis of the National Long Term Care Survey, 1994.
25 National Alliance for Caregiving and AARP, Caregiving in the U.S., 2004.

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CRS-12
activities more often occur sequentially rather than simultaneously.26 Moreover, the
types of activities and support provided to a dependent child may be very different
from those provided to a disabled parent.
Data from the National Longitudinal Survey of Young Women found that about
1% of women aged 45 to 56 years old have both a parent and a child living in the
household.27 Broadening the definition of the “sandwich generation” of caregivers
to include those who are providing either financial support of more than $1,000 or
caregiving support of more than 500 hours to both a child and a parent, neither of
whom necessarily live in the same household, increases the percentage of women in
the “sandwich generation” to 9%.28
Work and Caregiving. A substantial share of caregivers are balancing work
with caregiving responsibilities. In a 2002 survey conducted by the Families and
Work Institute, more than one-third (35%) of workers indicated they provided care
for a relative or in-law aged 65 or older in the past year.29 However, those working
full-time are less likely to be shouldering the primary caregiving responsibility. A
2004 national survey conducted by the National Alliance for Caregiving (NAC) and
AARP found that those who have a lower caregiving burden were more likely to be
employed full-time.30
Employed caregivers often make workplace adjustments to care for older family
members, such as changing their daily work schedules, reducing their work hours,
or taking a leave of absence to care for an older relative.31 Workplace policies that
can assist family caregivers to older adults include flexible work schedules, part-time
hours, job-sharing, paid and unpaid leave policies, telecommuting, and worklife
benefits such as counseling and information and referral services. The 2002 Families
and Worklife Institute survey found that elder care resource and referral services have
increased significantly in the past decade. In 2002, almost one-quarter of employees
reported they had access to this benefit, an increase from 11% in 1992.32 Federal
initiatives such as the Family and Medical Leave Act provide a limited amount of
26 Christine Himes, “Parental caregiving by adult women: A demographic perspective,”
Research on Aging, vol. 16 (2004), pp. 191-211; L.S. Loomis and A. Booth,
“Multigenerational caregiving and wellbeing: The myth of the beleaguered sandwich
generation,” Journal of Family Issues, vol. 16 (2005), pp. 131-148.
27 Charles R. Pierret, “The ‘sandwich generation’: women caring for parents and children,”
Monthly Labor Review, September 2006. This report is based on analyses of the1997 and
1999 waives of data from the National Longitudinal Survey of Young Women.
28 Ibid.
29 James T. Bond et al., Highlights of the 2002 National Study of the Changing Workforce,
Families and Work Institute, 2002.
30 National Alliance for Caregiving and AARP, Caregiving in the U.S., 2004.
31 For further information, see CRS Report RL31755, Family Caregiving to the Elderly by
Employed Persons: The Effects on Working Caregivers, Employers, and Federal Policy, by
Linda Levine.
32 James T. Bond et al., Highlights of the 2002 National Study of the Changing Workforce,
Families and Work Institute, 2002.

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CRS-13
job-protected unpaid leave to qualifying employees. Also, some current law tax
provisions assist family caregivers with an older relative who is a qualifying
dependent. However, these federal provisions (discussed in the next section) are not
widely used for the purpose of caring for an older frail family member.33
How Much Care Do They Provide?
Family caregivers who are the primary source of care to an older disabled
relative spend a significant amount of time providing assistance. Primary ADL
caregivers helped the most by providing, on average, about 46 hours of care per week
(or 201 hours per month) — more hours than a typical full-time job. Those providing
primary IADL assistance averaged fewer hours of care, with about 83 hours per
month, or just over 19 hours on average per week. Spouses, who typically assume
the role of a primary caregiver, provided the most hours of care to a disabled older
spouse, followed by daughters, then sons (Table 5).
Table 5. Monthly Hours of Help Provided by Informal Caregivers
to Noninstitutionalized Frail Older Adults,
by Type and Relationship, 2002
Mean Hours
Median Hours
per Month
per Month
Caregiver Type
Primary ADL
201
90
Primary IADL
83
31
Other Caregivers
53
16
Relationship
Spouse
153
61
Daughter/daughter-in-law
98
31
Son/son-in-law
71
30
Other
83
20
Source: Johnson and Wiener, A Profile of Frail Older Americans and Their Caregivers, Table 5.2,
2006.
Notes: Data from the 2002 Health and Retirement Study. Estimates are based on a sample of 2,427
caregivers to frail adults aged 65 and older living in the community, which includes 738 primary ADL
caregivers, 736 primary IADL caregivers, and 953 other caregivers and helpers.
Table 5 also shows that the median hours of care per month, regardless of
relationship or caregiver type, is substantially lower than the average or mean hours
of care per month. The 2002 HRS data suggest that the distribution of informal
caregiving hours is highly skewed. Thus, there is likely to be wide variation in the
amount of hours of informal care that caregivers reported providing to an older care
33 See CRS Report RL31755, Family Caregiving to the Elderly by Employed Persons: The
Effects on Working Caregivers, Employers, and Federal Policy, by Linda Levine.

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CRS-14
recipient. Indeed, the NAC/AARP 2004 survey of caregivers found that almost half
of caregivers to individuals of all ages reported providing up to 8 hours of care per
week (48%), whereas almost one-fifth of caregivers (17%) provided more than 40
hours of care per week. These data reflect the wide variation in amount of care and
a much greater intensity of caregiving for a relatively smaller but sizeable portion of
the caregiving population.34
Further research indicates that the amount of time spent caring increases
substantially for older persons with varying degrees of cognitive impairment.
Individuals aged 70 and older with no dementia received 4.6 hours of informal care
per week, compared with 13.1 hours per week for those with mild dementia, 22.0
hours per week for those with moderate dementia, and 46.1 hours per week for those
with severe dementia.35
Many family caregivers devote significant time assisting older adults during the
course of a year; however, caring for the long-term needs of an older frail family
member can continue for many years. In the 2004 NAC/AARP survey of caregivers,
the average duration of care was 4.3 years. Almost 30% of caregivers reported
assisting the recipient for five years or more. Older caregivers were more likely to
have been providing care for 10 years or more, compared with caregivers under age
50.36
The Effects of Family Caregiving
While many family members find caregiving a rewarding and satisfying activity,
caregivers may also face increased physical strain, emotional stress, and financial
hardship as a result of caregiving responsibilities. Moreover, caregiver satisfaction
and caregiver strain may be experienced simultaneously. Some caregivers find
personal satisfaction from forming a close relationship with a family member. They
may find caregiving fulfills a sense of duty to the recipient. Also, they may find
satisfaction from their personal belief that they can provide the best care to the
recipient.37 One factor associated with caregiver stress is whether the caregiver had
a choice in taking on caregiving responsibilities. Other factors associated with high
caregiver stress and strain include poor caregiver health and heavy caregiving burden.
One study found that those caregivers experiencing high levels of stress because of
heavy caregiving burden were more likely to provide more than 20 hours of care per
week, to provide care to a recipient with more than three ADLs, to have little to no
34 National Alliance for Caregiving and AARP, Caregiving in the U.S., April 2004.
35 Kenneth M. Langa et al. “National Estimates of the Quantity and Cost of Informal
Caregiving for the Elderly with Dementia,” Journal of General Internal Medicine, vol. 16
(November 2001), pp.770-778.
36 National Alliance for Caregiving and AARP, Caregiving in the U.S., April 2004.
37 M. Nolan et al., Understanding Family Care: A Multidimensional Model of Caring and
Coping, (Philadelphia: Open University Press, 1996).

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CRS-15
backup assistance, and to experience problems providing care (e.g., sleep
interruption, disruptive behavior by the care recipient).38
Most caregivers report they are in good health. However, factors such as age,
gender, education, income, and whether or not the caregiver lives with the recipient
are associated with the caregiver’s health.39 Caregivers with increased caregiving
responsibilities face greater levels of caregiver stress, which may place their physical
health at risk. Researchers have documented several adverse health outcomes related
to caregiving, including elevated blood pressure, impaired immune systems, and
potential increased risk for cardiovascular disease.40 Older spouse caregivers who
experienced caregiver-related stress had higher mortality rates than non-caregivers
of the same age.41 Research has also linked high levels of caregiver stress to nursing
home entry of the care recipient, where having a highly stressed caregiver increases
the likelihood that a chronically disabled older adult will enter a nursing home by 12
percentage points within one year and 17 percentage points over a two-year follow-up
period.42 The same study concluded that initiatives to reduce stress among caregivers
would also reduce the rate of nursing home admission.
Providing care to an older person can also affect a caregiver’s mental health.
Several studies have documented high levels of depressive symptoms and other
mental health problems among those who provide care compared with those who do
not.43 In particular, higher levels of depression are associated with caregivers
assisting those individuals with dementia. Studies have shown that about 30% of
dementia caregivers suffer from depression, and more than 40% report high levels
of emotional stress as a result of caregiving.44
38 Brenda C. Spillman, “Primary Informal Caregivers: Factors Associated with High Stress,”
presented at Conference on Caregiver Health as a Public Health Issue, Urban Institute,
Washington DC, September 26, 2006. (Hereinafter referred to as Spillman, Primary
Informal Caregivers, 2006.)
39 National Alliance for Caregiving and AARP, Caregiving in the U.S., 2004.
40 Sunmin Lee et al., “Caregiving and Risk of Coronary Heart Disease in U.S. Women: A
Prospective Study,” American Journal of Preventive Medicine, vol. 24, pp. 113-119.
41 Richard Schulz and Scott R. Beach, “Caregivers as a Risk Factor for Mortality: The
Caregiver Health Effects Study,” Journal of the American Medical Association, vol. 282,
no. 23 (1999), pp. 2215-2219.
42 Brenda C. Spillman and Sharon K. Long, “Does High Caregiver Stress Lead to Nursing
Home Entry?” Office of Disability, Aging and Long-Term Care Policy, Office of the
Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human
Services, January 26, 2007.
43 Carolyn C. Cannuscio et al. “Reverberation of Family Illness: A Longitudinal
Asssessment of Informal Caregiver and Mental Health Status in the Nurses’ Health Study,”
American Journal of Public Health, vol 92, issue 8, pp. 1305-1311; Nadine Marks et al.,
“Transitions to Caregiving, Gender, and Psychological Well-Being; A Prospective U.S.
National Study,” Journal of Marriage and Family, vol. 64, no. 3, pp. 657-667.
44 Kenneth E. Covinsky et al.,”Patient and Caregiver Characteristics Associated with
Depression in Caregivers of Patients with Dementia,” Journal of General Internal Medicine
(continued...)

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CRS-16
Research on caregiver burden indicates that caregivers need more assistance and
information on where to find supportive services. A national study of caregivers to
adults aged 60 and older found that more than one-third (35%) expressed a need to
find time for themselves. However, the same study reported that almost one-third of
caregivers said they did not know where they would turn for information on either
short- or long-term care for the care recipient.45 Another study found that high-stress
caregivers are more likely to say they need help with caregiving, time-off or a break
from caregiving responsibilities, and some form of financial assistance such as cash,
a tax break, or a subsidy for caregiving.46
Caregivers who do report using supportive services are more likely to be in
high-stress caregiving situations. In the 2004 NAC/AARP survey, caregivers were
more likely to report using supportive services if they assisted someone with
Alzheimer’s or dementia, lived with the person they also cared for, or were older
themselves (i.e., aged 50 and older). Furthermore, those assisting individuals with
high levels of disability are more likely to report experiencing financial hardship and
requesting information about how to get financial help for the care recipient.47
Research comparing high-stress and low-stress caregivers found that caregivers
rating their stress level as 6 or higher on a scale of 1 to 10 were more likely to have
ever used paid help for ADLs, adult day care, or respite. The overwhelming majority
of low-stress caregivers reported that they did not use these services because they did
not need them. However, high-stress caregivers were four times more likely than
low-stress caregivers to indicate they have not used these services because they were
unaware of them, and 20 times more likely to report not using these services because
they could not afford them.48
For some family caregivers, providing care to an older relative can pose a
significant financial burden. A 2007 study by Evercare and NAC looked at the extent
to which family caregivers to older individuals pay for the goods and services
provided to their care recipients.49 According to the study’s findings, family
caregivers reported an average annual out-of-pocket expense of $5,531, more than
10% of the median income of the survey group, which was $43,026. Long-distance
caregivers reported the highest average annual expenses ($8,728) compared to
caregivers who lived in the same household as the care recipient ($5,885) and those
who cared for someone nearby but not in the same household ($4,570). The most
44 (...continued)
vol. 18 (2003), pp. 1006-1014; Alzheimer’s Association, Alzheimer’s Disease Facts and
Figures (Chicago, IL, 2007).
45 Sarah L. McKune et al., Caregiving: A National Profile and Assessment of Caregiver
Services and Needs, Rosalynn Carter Instute and the University of Florida, 2006.
46 Spillman, Primary Informal Caregivers, 2006.
47 National Alliance for Caregiving and AARP, Caregiving in the U.S., 2004.
48 Spillman, Primary Informal Caregivers, 2006.
49 Evercare and National Alliance for Caregiving, “Family Caregivers - What They Spend,
What They Sacrifice?” November, 2007.

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CRS-17
common expense categories that respondents reported they may have had as a result
of the help and support they provided were: household goods, food and meals (42%
reporting), travel and transportation costs (39%), and medical care co-pays and
pharmaceuticals (31%).
However, it is often difficult to differentiate those household expenses that are
care related expenses from those that are general household expenses, particularly
when a caregiver co-resides with the care recipient. For example, co-resident
households may have certain shared household expenses such as groceries, certain
household items, and transportation. In the Evercare study 45% of respondents co-
resided with the care recipient, and caregiver related expenses may have been paid
for with the caregiver’s own money or with household money.
The Economic Value and Costs of Caregiving
The total value (non-economic as well as economic) of caregiving to older
persons with disabilities can be substantial. Some researchers have attempted to
document the economic value associated with family caregiving. Generally, the
economic value of informal care is measured as the cost of replacing informal
(unpaid) care with formal (paid) care. Estimates of the value of informal care vary
widely, depending on the identified caregiving population, the number of caregivers
or caregiving hours counted, and the estimated hourly wage rate for caregivers’ time.
These studies provide the following estimates:
! Annual cost of replacing informal caregiving with paid home care at
$45 billion to $94 billion.50
! Imputed value of informal caregiving at $168 billion (18.7 billion
hours of caregiving at $9 per hour).51
! Economic value of caregiving using a range of three estimates —
from a low estimate of $149 billion (27 million caregivers each
providing 20.5 hours of care per week at $5.15 per hour) to a
mid-range estimate of $306 million (28.9 million caregivers each
providing 20.5 hours of care per week at $9.92 per hour) to a high
estimate of $483 billion (30.7 million caregivers each providing 20.5
hours of care per week at $14.68 per hour).52
50 Department of Health and Human Services, Informal Caregiving: Compassion in Action,
Administration on Aging, at [http://aspe.hhs.gov/search/daltcp/reports/Carebro2.pdf ].
51 Mitchell Laplante et al., “Estimating Paid and Unpaid Hours of Personal Assistance
Services in Activities of Daily Living Provided to Adults Living at Home,” Health Services
Research, vol. 37, no. 2 (April 2002).
52 Peter S. Arno, Economic Value of Informal Caregiving: 2004, presented at the Care
Coordination and the Caregiver Forum, Department of Veterans Affairs, National Institutes
of Health, Bethesda, MD, January 25-27, 2006. This research is based on previous research
by the author and other researchers.

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CRS-18
! Economic value of unpaid caregiving activities in 2006 to be $354
billion, assuming 34 million caregivers each providing 1,080 hours
of care per year (about 21 hours of care per week) at a cost of $9.63
per hour.53
Other researchers, however, have cautioned that some estimates may overstate the
economic costs of informal caregiving.54 For example, some estimates may include
the time family members spend performing activities that they would have done
regardless of the care recipient’s disability status (e.g., meal preparation, shopping,
housework).
Some researchers have attempted to quantify the economic costs to family
caregivers and to employers that can be associated with caregiving. Caregivers that
take time out of the work force to care for a family member not only lose wages but
fail to accrue savings and benefits, which may place them at economic risk over their
lifetimes. Another measure of economic cost looks at lost economic productivity
resulting from caregiving activities. In a small, nonrepresentative study of family
caregivers, MetLife found that as a result of caregiving, informal caregivers lost a
lifetime estimated average of $566,433 in pre-taxable wage wealth, $25,494 in Social
Security wealth, and $67,202 in pension wealth.55 Combined, the result is a loss in
total pre-taxable wealth of approximately $659,000 per person over a lifetime.56
Another study by MetLife and NAC estimated that the aggregate costs of caregiving
in lost productivity to U.S. businesses for full-time employees was between $17.1
and $33.6 billion annually, based on NAC’s 2004 survey of caregivers.57
Federal Government Initiatives to Assist Caregivers
The federal government has established programs and initiatives that provide
direct support to family caregivers, including grant programs authorized under the
Older Americans Act and Title XX of the Social Security Act (the Social Services
Block Grant program). These programs provide family caregivers with information
and referral, respite care, and training. In addition, some states’ Medicaid home and
community-based waivers offer respite care as a covered service. Recently, some
53 AARP, Valuing the Invaluable, 2007.
54 Douglas A. Wolf, “Valuing Informal Elder Care,” in Family Time: The Social
Organization of Care, edited by Nancy Folbre and Michael Bittman.
55 Wage wealth is defined as the present value of lifetime wages calculated as of the date of
retirement; Social Security wealth is defined as the respondent’s total estimated Social
Security benefits; pension wealth is defined as the respondent’s estimated average annual
pension benefits accumulated in retirement.
56 MetLife Mature Market Institute, The MetLife Juggling Act Study: Balancing Caregiving
with Work and the Costs Involved (New York: Metropolitan Life Insurance Company,
1999).
57 MetLife Mature Market Institute and National Alliance for Caregiving, The MetLife
Caregiving Cost Study: Productivity Losses to U.S. Businesses (Westport, CT: MetLife
Mature Market Institute, July 2006).

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CRS-19
states began allowing family caregivers to be hired by the Medicaid beneficiary,
giving some cash assistance to caregivers. Other initiatives that offer direct
assistance to caregivers include the Family and Medical Leave Act, which provides
unpaid leave to eligible employees in order to care for a spouse, parent, or child with
a serious health condition. Furthermore, tax provisions in current law offer
caregivers some direct tax relief.
Other federal programs and initiatives provide home and community-based
long-term care services and supports to the care recipient. These programs can
indirectly benefit caregivers by relieving caregiver burden through supplementing the
informal care being provided by caregivers or substituting it with paid support.
Services provided to care recipients that can indirectly assist caregivers include
formal personal care services, adult day health care, assistive devices, transportation,
and nutrition services (i.e., home-delivered meals). Many of these services are
offered through the same programs mentioned above (i.e., Older Americans Act,
Social Services Block Grant, and Medicaid waivers).
Access to benefits that directly assist caregivers are often limited by program
funding and may be insufficient in coverage and duration. Furthermore, coverage for
direct benefits to caregivers may be uneven across states. Federal programs that
provide long-term care services to care recipients that, as a result, indirectly assist
caregivers are often limited to those recipients who meet certain age requirements
and financial and functional eligibility criteria (e.g., limitations with two or more
ADLs). In addition, some states use state-funds to provide programs and services,
such as respite care, or offer state tax benefits to assist family caregivers. These state
initiatives are outside of the scope of this report. The following describes the various
federal government initiatives and programs. A summary table of these federal
programs and initiatives is provided in the Appendix.
Programs and Services
Older Americans Act (OAA). The OAA (P.L. 89-73, as amended; 42 USC.
§ 3001 et seq.) funds a number of programs and activities to support family
caregivers of older individuals (aged 60 and older) directly through information and
referral services, respite, and caregiver training and support. The OAA also provides
indirect services that can assist caregivers through the delivery of other home and
community-based services and supports.
National Eldercare Locator Service. Title II of the OAA requires the U.S.
Administration on Aging (AoA) to develop the National Eldercare Locator Service.
The Eldercare Locator Service allows caregivers and older adults to connect with
state and local area agencies on aging and community-based organizations that
provide services to older individuals. By calling a nationwide toll-free number
(1-800-677-1116, weekdays, 9:00 a.m. to 8:00 p.m., EST) or accessing the website
at [http://www.eldercare.gov], individuals can access the resources of state and local
OAA information and referral programs and other service providers identified for
every ZIP code across the nation.
The National Eldercare Locator Service can help caregivers identify local
resources and enables long-distance caregivers to access information about services

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CRS-20
available to family members in other parts of the country. The Eldercare Locator
Service can connect individuals to more extensive information sources for a variety
of services, including transportation, home-delivered meals, housing options,
Alzheimer’s hotlines, adult day care, respite services, home health services,
long-term care ombudsmen, and legal assistance.
In FY2007, approximately 115,000 callers received information and referral
services through the toll-free number, down from 131,000 and 132,000 callers in FYs
2005 and 2006, respectively. However, the number of Eldercare Locator web
contacts has increased 43% over a two-year period, from 188,000 in FY2005 to
269,000 in FY2007.58 For FY2008, overall funding available for National Eldercare
Locator Service program activities is approximately $800,000.59
Aging and Disability Resource Centers (ADRCs). Another federal
initiative to provide family caregivers and individuals with information and improve
access to public and private long-term care services and supports at the community
level is the Aging and Disability Resource Center (ADRC) program. A collaborative
effort of the AoA and the Centers for Medicare and Medicaid Services (CMS), the
ADRC initiative provides grants to support states’ efforts to streamline information
and access to public and private long-term care services at the community level.
ADRCs are designed to be single points of entry to publicly administered long-term
care benefits funded under Medicaid, the OAA, and state programs. The vision of
AoA and CMS is for ADRCs to serve as highly visible places where people can turn
to for information and support on long-term care in every community.
The OAA Amendments of 2006 (P.L. 109-365) authorized AoA to award funds
for ADRCs in all states.60 As of February 2008, approximately 140 ADRC pilot sites
operating in 40 states, the District of Columbia, and two territories (Guam and the
Commonwealth of the Northern Mariana Island) have received grant funding through
the joint AoA/CMS ADRC program initiative: 12 in FY2003, 12 in FY2004, and 19
in FY2005.61 For FY2007 AoA provided continued support to the 12 states that
received FY2004 funding. From FY2003 through FY2007, the AoA and CMS have
awarded over $42 million in grants to states. In addition, CMS has made investments
of $8 million in FY2008 to 7 states through its Real Choice Systems Change grants
to develop person-centered hospital discharge planning models using ADRCs.62
58 Administration on Aging, Fiscal Year 2009: Justification of Estimates for Appropriations
Committees, Department of Health and Human Services, 2008.
59 Personal communication with Administration on Aging, October 9, 2008.
60 For further information, see CRS Report RL31336, The Older Americans Act: Programs,
Funding, and 2006 Reauthorization (P.L. 109-365), by Carol O’Shaughnessy and Angela
Napili.
61 For further information on location of ADRCs, see the ADRC Technical Assistance
Exchange at [http://www.adrc-tae.org/tiki-index.php?page=PublicHomePage], visited on
October 6, 2008.
62 Personal communication with Administration on Aging, October 17, 2008.

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National Family Caregiver Support Program (NFCSP). The NFCSP
provides direct services for caregivers in five core service areas:
! Information about health conditions, resources, and
community-based services.
! Assistance with accessing available services.
! Individual counseling, support groups, and caregiver training.
! Respite care services to provide families temporary relief from
caregiving responsibilities.
! Supplemental services on a limited basis that would complement
care provided by family and other informal caregivers (e.g., adult
day health care, home care, home modifications, incontinence
supplies, nutritional supplies, assistive devices).
Priority for NFCSP services is given to caregivers aged 60 and older. Services
are intended to be distributed to individuals with the greatest economic or social
need; particular attention is given to low-income older individuals. However, the law
also clarifies that priority is to be given to older individuals who are providing care
to those with severe disabilities (including children with severe disabilities). Among
other things, the OAA Amendments of 2006 (P.L. 109-365) included additional
provisions giving priority for NFCSP services to those caregivers who provide
assistance to older persons with Alzheimer’s disease and related neurological
disorders. For FY2008, NFCSP funding accounts for $153.4 million, or 8% of total
OAA expenditures.63
Table 6 shows the number of caregivers who received assistance by service type
for selected NFCSP services in FY2006. Using the most conservative national
estimate of caregivers to the chronically disabled elderly (7.1 million from the
NLTCS 1999 survey; see Table 3), it is estimated that approximately 15.5% of
caregivers received assistance in locating services from both private and voluntary
agencies, 2.0% received counseling and training services, and 1.0% received respite
care. Thus, it appears that these services assist only a relatively small percentage of
family caregivers. However, because data sources vary by year and defined
population, these estimates should be interpreted with caution.
63 See CRS Report RL33880, Older Americans Act: FY2008 Funding and FY2009 Funding
Proposals, by Angela Napili.

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Table 6. Selected National Family Caregiver Support Program
Services, by Number and Percent of Caregivers Receiving
Service, FY2006
Number of
Percent of
Caregivers
Caregivers
Receiving
Receiving
Service Type
Service
Service
Access assistance
1,100,000
15.5
Counseling and training
148,000
2.0
Respite care
69,000
1.0
Source: Administration on Aging, Fiscal Year 2009: Justification of Estimates of Appropriations
Committees, Department of Health and Human Services, 2008; CRS estimates based on source cited.
Notes: Data on services is for FY2006 from AoA administrative sources; the denominator used to
calculate the number of caregivers (7.1 million) is from the 1999 NLTCS. Priority for OAA services
is given to older care recipients, defined as being aged 60 and older, and their families. The NLTCS
is based on a population of Medicare recipients, aged 65 and older.
Home and Community-Based Supportive Services. Title III home and
community-based services provide for a broad array of supportive services to assist
caregivers indirectly by helping older adults remain in their own homes for as long
as possible. These services include transportation; case management; in-home
services, such as personal care, chore, and homemaker services; and community
services, such as adult day health care and senior center activities. These services can
assist caregivers indirectly by allowing them to continue working, and directly by
providing brief respite from caregiver responsibilities or helping to alleviate caregiver
burden.
In FY2005, transportation services provided more than 36.5 million rides to
doctors’ offices, grocery stores, senior centers, meal sites, and other critical daily
activities. Personal care, homemaker, and chore services provided over 20 million
hours of assistance to older adults to perform both ADLs and IADLs.64 Case
management services provided almost 4 million hours of assistance conducting needs
assessment, developing care plans, and arranging services for older adults and their
caregivers. Moreover, adult day health care provided over 7 million hours of care for
dependent adults in a group setting for some portion of the day. For FY2008,
funding for OAA supportive service programs is $351.3 million.65
Ask Medicare. In September of 2008, CMS launched a new initiative to assist
family caregivers to Medicare beneficiaries titled “Ask Medicare.” The initiative
provides caregivers with easy access to useful information about Medicare and other
essential health care information about services and available resources. This
64 Administration on Aging, Fiscal Year 2008: Justification of Estimates of Appropriations
Committees, Department of Health and Human Services, 2008.
65 Ibid.

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information can be accessed through a web-site for caregivers at
[http://www.medicare.gov/caregivers].66
Alzheimer’s Disease Demonstration Grants to States (ADDGS). The
Alzheimer’s Disease Demonstration Grants to States (ADDGS) program provides
competitive grants to help states plan and coordinate demonstration programs that
address the specific needs of Alzheimer’s patients, with particular focus on
hard-to-reach and underserved persons with the disease. The program’s mission is
to expand the availability of diagnostic and support services for person’s with
Alzheimer’s disease, their families, and caregivers. States may use funds to deliver
respite care services that can directly benefit family caregivers, as well as supportive
services (i.e., home health, personal care, day care, and companion services) that can
indirectly benefit caregivers. The program is administered by the Administration on
Aging (AoA) of the U.S. Department of Health and Human Services (HHS).
The program grant to states was created under the Older Americans Act (OAA)
Amendments of 1987 (P.L. 100-175). However, there was no funding until 1992,
after the program was reauthorized and expanded by the Home Health Care and
Alzheimer’s Disease Amendments of 1990 (P.L. 101-557). The Health Professions
Education Partnerships Act of 1998 (P.L. 105-392) re-authorized funding for
ADDGS for FY1998 through FY2002. While the program is currently unauthorized,
Congress continues to appropriate funding. For FY2008, funding for ADDGS is
$11.5 million.67
Senior Companion Program (SCP). Title II-C of the Domestic Volunteer
Service Act (DVSA, P.L. 93-113), as amended, establishes the Senior Companion
Program (SCP). Administered by the Corporation for National and Community
Service, SCP provides older adults with the opportunity to assist homebound, frail
elderly, and other adults with disabilities. SCP volunteers offer companionship to
care recipients, as well as help with transportation and a variety of in-home tasks, so
that older individuals can remain independent in their homes. Volunteers can directly
assist family caregivers by providing respite care. Other services, such as
transportation to medical appointments, can indirectly benefit family caregivers. For
FY2008, funding for SCP is $46,144.68
Social Services Block Grant (SSBG). Title XX of the Social Security Act
authorizes the SSBG block grant. SSBG directs funds to states for a broad array of
social services. Direct services that states may make available to caregivers through
SSBG include information and referral and respite care. Although respite services
are not specifically mentioned in statute, they fall within the allowable social services
66 CMS Office of Public Affairs, “New CMS Initiative Helps to Assist and Identify
Individuals Who Care for Medicare Beneficiaries as Caregiviers,”September 18, 2008,
accessed at [http://www.cms.hhs.gov/apps/media/press/release.asp?Counter=3271], on
October 9, 2008.
67 Ibid.
68 See CRS Report RL33931, The Corporation for National and Community Service:
Overview of Programs and FY2009 Funding, by Ann Lordeman and Abigail B. Rudman.

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that states may provide.69 Services provided to persons with long-term care needs,
including adult day care, home-delivered and congregate meals, and home-based
services, such as homemaker, chore, home maintenance, and house management
services, may also provide indirect benefits to caregivers.
The SSBG program is administered by the Administration for Children and
Families (ACF). The ACF allocates funds to the states and territories, who then in
turn determine whether services will be provided by state or local agency staff or
through grants or contracts with private organizations. States have broad discretion
in determining the use of SSBG funds. There are no federal eligibility requirements
for SSBG activities. States may set their own criteria (with the exception of any
SSBG funding that comes via a transfer from the Temporary Assistance for Needy
Families [TANF] block grant; individuals served with TANF funds must be below
200% of the Federal Poverty Level).70
In 2006, SSBG fund allocations were $1.70 billion and TANF transfers to SSBG
were about $944 million, for a total of $2.77 billion in SSBG expenditures.71
However, the services that provide direct and indirect support to caregivers are small,
relative to total SSBG program expenditures. Furthermore, SSBG services are not
exclusively targeted at caregivers or older adults and vary by state. For example,
2006 SSBG expenditures for home-based services, information and referral, and
adult day care combined were less than 8% of total SSBG expenditures (see Table
7).
Table 7. Selected SSBG Expenditures, by Service, 2006
2006 Total SSBG
Expenditures
Percentage of Total
Number of
SSBG Service Category
(millions)
SSBG Expenditures
States
Information and Referral
$18.0
0.7%
22
Home-Based Services
$182.1
6.6%
46
Adult Day Care
$15.8
0.6%
24
Source: Adapted by CRS from DHHS, Social Services Block Grant Program: 2006, accessed at
[http://www.acf.dhhs.gov/programs/ocs/ssbg/annrpt/2006/index.html].
Note: Total SSBG expenditures includes SSBG expenditures and any expenditures made from TANF
transfers; Number of states include states reporting SSBG expenditures and states reporting TANF
transfers.
69 SSBG regulations include a list of 29 uniform definitions of service categories for which
SSBG funds may be used, including “prevention and intervention services” and “special
services for the disabled,” which include respite care.
70 For further information, see CRS Report 94-953, Social Services Block Grant (Title XX
of the Social Security Act), by Melinda Gish.
71 U.S. Department of Health and Human Services, Administration for Children and
Families, Office of Community Services, Social Services Block Grant Program: 2006, at
[http://www.acf.dhhs.gov/programs/ocs/ssbg/annrpt/2006/index.html]. (Hereinafter referred
to as DHHS, Social Services Block Grant Program: 2006.)

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Medicaid. The Medicaid program gives states the ability to cover services that
can directly and indirectly assist family members who provide long-term care to an
eligible beneficiary. Jointly funded by federal and state governments, Medicaid is
a state-administered entitlement program that operates within broad federal
guidelines. The program covers long-term care services in both institutional and
home and community-based settings for eligible persons with disabilities of all ages
and is intended to serve as a safety net for those who cannot afford the cost of care.
The majority of Medicaid home and community-based services are designed to
help the beneficiary live and function independently in the community. One optional
service under Medicaid that directly assists family caregivers is respite care. Respite
care can provide direct assistance to caregivers who need a short break from
caregiving responsibilities. States that choose to offer respite care may target this
service to specific beneficiaries and limit the benefit amount available.
Another Medicaid program feature that states have experimented with is
consumer-directed service delivery models. These programs often allow the
consumer (i.e., the beneficiary) to hire family members to provide certain long-term
care services. Thus, in some circumstances, family caregivers may be paid with
Medicaid dollars to provide personal care services. Self-directed program models
can assist family caregivers by providing some monetary compensation. Cash
assistance to caregivers may help caregivers replace lost wages from unpaid time off
work or continue to provide care in the care recipient’s home rather than transferring
the care recipient into an institution. Hiring family caregivers may increase the
supply of direct care workers, particularly in rural and hard-to-service areas.72
Other Medicaid home and community-based services may indirectly benefit
family caregivers by supplementing informal care provided to beneficiaries in the
home or substituting some informal care for formal care. These services may have
an indirect effect on family caregivers by relieving the strain and physical burden
often associated with hands-on care to a disabled older family member while
allowing the care recipient to remain in the home. Home and community-based
services may include personal care services, case management, homemaker/home
health aide services, and adult day health, among other services.
Employment Policy
To assist workers in balancing work and caregiving-related activities, Congress
passed the Family and Medical Leave Act of 1993 (FMLA, P.L. 103-3). The FMLA
makes it possible for workers who take time off to care for a parent, spouse, or child
with a serious health condition to do so without fear of jeopardizing their jobs. The
FMLA requires private employers with at least 50 employees employed within 75
miles, and public employers, regardless of size, to extend job-protected, unpaid leave
to employees who meet length-of-service and hours-of-work eligibility requirements.
Covered, eligible employees are entitled to 12 weeks of unpaid leave per year.
72 For further information on consumer-directed care, see CRS Report RL32219, Long-Term
Care: Consumer-Directed Services Under Medicaid, by Karen Tritz.

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Employees can also invoke FMLA to attend to their own serious health condition and
to care for a newborn, newly adopted, or newly placed foster child.73
According to a U.S. Department of Labor survey conducted in the late 1990s,
most employees reported attending to their own health as the predominant reason for
taking leave under the act (48.7%). Only 10.6% of workers reported using the FMLA
to care for a seriously ill parent.74
As of 2008, 45 states and the District of Columbia had enacted family and
medical leave laws. Generally, the FMLA and state family and medical leave laws
are similar with regard to the availability of leave, but can differ in terms of coverage
and scope (e.g., cover small firms and other reasons for leave). In addition, some
employers offer paid family and medical leave benefits. Because FMLA was
intended to guarantee the minimum benefit, employees are entitled to the more
favorable leave benefits offered under state law or by an employer.75
Tax Policy
Tax provisions in current law provide benefits to some caregivers of older
family members. Two tax provisions that provide direct benefits to employed family
caregivers include the dependent care tax credit (DCTC) and the exclusion from
income for employer-provided dependent care assistance programs (DCAP). Three
provisions that provide indirect assistance to family caregivers, regardless of
employment status, include (1) the dependancy exemption, (2) the head of household
filing status, and (3) deductions for unreimbursed medical expenses. Rules regarding
eligibility and other limitations sometimes restrict the use of these benefits.
Dependent Care Tax Credit (DCTC)76. Caregivers may be eligible for a
tax credit to offset some costs of formal care for a qualifying child or a disabled
spouse or dependent. The qualifying child must be the taxpayer’s dependent and
under age 13 when care was provided; the qualifying spouse or dependent of the
taxpayer must be physically or mentally incapable of providing self-care and live
with the taxpayer for more than half the tax year.77 A special rule permits the
disabled person to be classified as a dependent even if they have gross income of
73 For further information, see CRS Report RL31760, The Family and Medical Leave Act:
Recent Legislative and Regulatory Activity, by Linda Levine.
74 For further information, see CRS Report RL31755, Family Caregiving to the Elderly by
Employed Persons: The Effects on Working Caregivers, Employers, and Federal Policy, by
Linda Levine.
75 For further information, see CRS Report RL33710, State Family and Medical Leave
Laws, by Jon O. Shimabukuro, Cassandra LaNel Foley, and Tara Alexandra Rainson.
76 Sec. 21 of the Internal Revenue Code.
77 Persons who cannot dress, clean, or feed themselves because of physical or mental
problems or who must have constant attention to prevent them from injuring themselves or
others are considered not able to care for themselves. For further information, see
Department of the Treasury, Publication 503 Child and Dependent Care Expenses: For use
in preparing 2007Returns, Internal Revenue Service, 2007.

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$3,500 (i.e., the exemption amount in 2008) or more. The credit is limited to
circumstances in which the child or dependent care is necessary for the taxpayer’s
employment. Dependent care may be provided by either a private individual (e.g.,
personal care, home health) or a dependent care center that meets state and local laws
and regulations (e.g., adult day health center).
The DCTC is calculated as a percentage of qualified employment-related
expenses. These expenses are limited to $3,000 for one qualifying individual and to
$6,000 for two or more qualifying individuals. In addition, qualified expenses cannot
exceed the earned income of the taxpayer. For married taxpayers, qualified expenses
are limited to the earned income of the lesser earning spouse.78 The credit rate is
35% for taxpayers whose adjusted gross income (AGI) does not exceed $15,000, and
is gradually reduced to 20% for taxpayers whose AGI is over $43,000. For example,
a married couple with a dependent frail parent living in their household, having an
AGI of $50,000 and $3,000 in qualifying expenses, would be eligible for a credit of
$600 (i.e., $3,000 x 20%).79
The DCTC is a nonrefundable tax credit, which means that the credit is limited
by the taxpayer’s regular income tax liability. A taxpayer whose tax liability is
completely offset by his or her standard deduction and personal and dependent
exemptions does not benefit from the credit. As a consequence, many lower income
taxpayers cannot claim the credit. For example, in 2008, a married couple with one
dependent does not benefit from the credit until their AGI exceeds $21,400. They
could not claim the full credit based on $3,000 of qualifying expenses until their AGI
reaches $29,500. Depending on the couples’ other deductions and exemptions, the
income threshold could be even higher.
The Dependent Care Assistance Program (DCAP)80. Caregivers who
work for employers with a DCAP may exclude up to $5,000 of earnings used for
qualified dependent care expenses. The exclusion applies to income taxes and
employment taxes. The definitions for qualified dependent care expenses and
qualifying person are the same as the DCTC. The employer DCAP must be a written
plan that meets certain rules for nondiscrimination among employees. Employers can
provide day care themselves, provide direct payments to other providers, or
reimburse employees for care they have arranged. Usually, DCAPs are funded under
salary reduction agreements through a “cafeteria plan.”81 Like the DCTC, the amount
78 Exceptions are for a student spouse or disabled spouse.
79 For further information, see CRS Report RS21466, Dependent Care: Current Tax Benefits
and Legislative Issues, by Christine Scott.
80 Sec. 129 of the Internal Revenue Code.
81 Cafeteria plans are employer-established benefit plans under which employees may
choose between receiving cash (typically additional take-home pay) and certain normally
nontaxable benefits (such as employer-paid health insurance) without being taxed on the
value of the benefits if they select the latter. For further information, see CRS Report
RL33505, Tax Benefits for Health Insurance and Expenses: Overview of Current Law and
Legislation, by Bob Lyke and Julie M. Whittaker.

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of the DCAP exclusion cannot exceed the earned income of the taxpayer or, in the
case of a married couple, the earned income of the lower-paid spouse.
The DCAP limit of $5,000 in qualifying expenses applies regardless of the
number of qualifying individuals. For families with only one qualifying person, the
DCAP can be more advantageous than the DCTC, for which the limit on qualifying
expenses is $3,000. Taxpayers can use both the DCTC and the DCAP in the same
year, but not for the same expenses. Qualifying DCTC expenses must be reduced by
the DCAP exclusion. Thus, if the married couple with the frail older parent also had
a child under 13 living in their household and spent $6,000 on care, they could use
the DCAP for $5,000 of the expenses and the DCTC for $1,000 of the expenses (i.e.,
the $6,000 maximum expenses for the DCTC minus $5,000 excluded under the
DCAP).82
Income tax savings from the DCAP depend on the taxpayer’s marginal tax rate.
For example, a taxpayer in the 10% tax bracket would save $500 from a $5,000
DCAP exclusion (i.e., $5,000 x 10%), whereas a taxpayer in the 25% bracket would
save $1,250 (i.e., $5,000 x 25%). In addition, they both would save $383 in
employment taxes ($5,000 x 7.65%).
Exemptions for Dependents83. Caregivers may be allowed a tax exemption
for an older adult if they can claim him or her as a dependent. In general, to be a
dependent, a person must be a qualifying child or a qualifying relative. The
definition of a qualifying relative is defined broadly to include both relatives and
non-relative household members. A qualifying relative could be a
! father, mother, or an ancestor or sibling of a father or mother (e.g.,
grandmother, grandfather, aunt, or uncle);
! brother, sister, or a son or daughter;
! child, stepchild, foster child, or a descendant of the child (e.g.,
grandchild);
! stepbrother, stepsister, stepfather, stepmother, son-in-law,
daughter-in-law, father-in-law, mother-in-law, brother-in-law, or
sister-in-law; or
! any other person (other than a spouse) who lived with the taxpayer
all year as a household member, as long as the relationship did not
violate local law.
To claim a qualifying relative as a dependent, the taxpayer must provide more
than half of the person’s support during the calendar year. Multiple support
82 Ibid. For further information, see CRS Report RL31755, Family Caregiving to the
Elderly by Employed Persons: The Effects on Working Caregivers, Employers, and Federal
Policy, by Linda Levine.
83 Secs. 151 and 152 of the Internal Revenue Code.

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agreements permit one taxpayer to claim the dependent when several taxpayers
together provide more than half of support. The qualifying relative must also have
a gross annual income that is less than the exemption amount (i.e., $3,500 in 2008).84
Tax savings from the dependent exemption depend on the taxpayer’s marginal
tax rate. A taxpayer in the 10% bracket would save $350 (i.e., $3,500 x 10%) by
claiming a single dependent exemption. A taxpayer in the 25% bracket would save
$875 (i.e., $3,500 x 25%).
Head of Household Status.85 Unmarried caregivers in some caregiving
situations may be eligible for a more advantageous tax filing status. Generally,
taxpayers who are unmarried must file as single taxpayers. However, unmarried
taxpayers can claim the more favorable head of household filing status if they paid
more than half the cost of keeping up a home and a qualifying person lived with them
for more than half the year. A special rule permits an unmarried taxpayer who has
a dependent parent to claim the head of household filing status even if the parent
lives in a different household. The taxpayer must also pay more than half the cost of
keeping up the home that was the parent’s main home for the entire year; this
includes paying more than half the cost of a rest home, or home for the elderly.
The head of household filing status is more advantageous than the single filing
status. The standard deduction for a single taxpayer in 2008 is $6,800, and for a head
of household, $9,350. In addition, the tax brackets are more favorable. For example,
in 2008, for a single taxpayer, the 25% tax rate starts with a taxable income of
$32,550, but for the head of household, the tax rate starts with a taxable income of
$43,650.
Unreimbursed Medical Expenses.86 Caregivers may claim a tax deduction
for unreimbursed medical expenses provided to a care recipient. Specifically,
taxpayers who itemize their deductions may deduct unreimbursed medical expenses
to the extent they exceed 7.5% of AGI. These expenses can be for the taxpayer, the
taxpayer’s spouse, or dependents. A special rule permits deductions for
unreimbursed medical expenses for a qualifying dependent who has gross annual
income of $3,500 or more (in 2008).
Medical expenses must be primarily to alleviate or prevent a mental or physical
illness, and do not include expenses for the benefit of general health. The former
expenses include costs for equipment, supplies, and diagnostic devices needed for
these purposes, in addition to dental expenses. Expenses also include health
insurance premiums paid by the taxpayer and, in some cases, transportation to
medical care, qualified long-term care costs, and long-term care insurance premiums
that do not exceed certain limitations.
84 Department of the Treasury, Exemption, Standard Deduction, and Filing Information,
Internal Revenue Service, Publication 501, 2007.
85 Sec. 2(b) of the Internal Revenue Code.
86 Sec. 213 of the Internal Revenue Code.

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This deduction is not widely used. For most taxpayers, the standard deduction
is larger than the sum of their itemized deductions; moreover, most do not have
unreimbursed medical expenses that exceed 7.5% of AGI. In 2003, about one-third
(34%) of all individual income tax returns had itemized deductions. Of these returns,
less than 20% (about 6.7% of all returns) claimed a medical expense deduction.87
Issues for Congress
As the nation prepares for the growing older population and likely increase in
demand for long-term care services among the frail elderly, Congress will face a
decision whether to expand the role of the federal government in providing direct
support to family caregivers. Some policy makers may favor enhancing services and
supports that provide either direct assistance or federal income tax relief to
caregivers. In doing so, the federal government would devote additional funding to
new or existing programs or reduce federal revenues, implying increasingly difficult
tradeoffs between support to caregivers and federal programs that benefit other
populations.
Alternatively, other policy makers may feel that greater state assistance to family
caregivers is warranted, and that the federal government can best serve family
caregivers by providing technical assistance to states in service planning and
delivery. Still others may believe the federal government has a limited responsibility
in assisting families who provide unpaid assistance, many by choice, to older
individuals. Thus, Congress may decide that no additional federal assistance can be
made available to help family caregivers. In this case, federal policy makers may
want to evaluate how best to spend existing funds.
This section briefly describes three sets of policies that would expand or
enhance the federal government’s role in providing direct assistance to family
caregivers to older adults. These policy issues, which have either received recent
congressional attention or otherwise been the subject of discussion among federal
policy makers and other interested stakeholders, are organized into the following
topics: enhancing and expanding caregiver services and supports, assisting employed
caregivers through flexible workplace accommodations and income security, and
providing caregivers with opportunities for additional tax credits.88
Caregiver Services and Supports
Many family caregivers identify the need for enhanced services and supports
that can help them with their current caregiving responsibilities and provide further
87 For further information, see CRS Report RL33505, Tax Benefits for Health Insurance and
Expenses: Overview of Current Law and Legislation, by Bob Lyke and Julie M. Whittaker.
88 For further information on legislation enacted in the 109th Congress and proposals
introduced in the 110th Congress that directly assist family caregivers, see CRS Report
RS22716, Family Caregiving to the Older Population: Legislation Enacted in the 109th
Congress and Proposals in the 110th Congress, by Kirsten J. Colello.

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information assistance as caregiving demands change over time. Policy makers
indicate that services such as respite care can improve care quality, avoid burnout,
and allow caregivers to continue providing informal care to an older relative, thus
potentially avoiding or delaying unnecessary institutionalization. Proponents of
increased federal funding for services and supports to caregivers have indicated the
need for enhanced education and training for caregivers so that they can develop the
skills necessary to provide quality care to a frail elderly population. Others have
suggested targeting services and supports to those caring for individuals with specific
illnesses or disease, such as Alzheimer’s.
Advocates have also suggested adding an assessment of the caregiver’s needs
to the existing eligibility determination and assessment processes for public
benefits.89 The caregiver assessment process would identify and link appropriate
services and support for family caregivers. These services could provide back-up
support, in cases of emergency, counseling, or respite care. Caregiver assessments
would also elicit information about the caregiver’s health, willingness to provide
care, and training and support needs. Through the assessment process family
caregivers could learn about the resources available to them in their communities.
Workplace Accommodations and Income Security
Employed family caregivers often face disruptions in their work patterns as a
result of elder care responsibilities. These disruptions may include arriving to work
late or leaving early, taking time off during the day, reducing the number of hours
worked from full-time to part-time status, or taking a leave of absence. Major
changes to employee work schedules and work disruptions can affect income and job
security. Those who do leave the workforce to care for an older disabled family
member have less opportunity to save or accrue benefits over their lifetime, which
may leave them economically vulnerable in retirement.
Workplace accommodations that allow employees to take unpaid leave for the
purposes of assisting with the long-term care needs of older relatives can directly
assist caregivers. Requiring employers to provide paid time off to their employees
to care for the medical needs of certain family members may assist in alleviating
some of the financial burden associated with caring for an older family member.
Federal policies that support flexible workplace accommodations may prevent
individuals from leaving the workforce altogether. Publicly funded programs that
allow payment of family caregivers through consumer-directed service delivery
models may provide caregivers with some income security.
Tax Credits
As previously mentioned, for many family caregivers, providing assistance to
a frail older individual can impose a substantial financial burden. Targeted tax relief
to caregivers could offset some of the direct expenses associated with caregiving,
including transportation for long-distance caregivers, purchase of assistive devices
89 Lynn Friss Feinberg et al., “Ahead of the Curve: Emerging Trends and Practices in Family
Caregiver Support,”AARP Public Policy Institute (Washington, DC, March 2006).

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CRS-32
and technology (i.e., grab bars, bed rails, emergency response systems) or home
modifications (i.e., wheel chair ramps, shower stalls) that can assist with the delivery
of personal care, dietary supplements for the care recipient, adult day health care, and
other medical or health-related services and products.
Additional tax relief measures that would directly assist families caring for a
disabled older individual include a targeted tax credit to caregivers. Other tax
policies that would directly assist family caregivers would expand on current tax
relief measures by broadening the taxpayer population eligible for these benefits. For
example, expanding the dependent definition under the DCTC to include disabled
older relatives who do not live with the taxpayer may include additional eligible
taxpayers. Other policy proposals have included expanding the definition of
dependent care expenses to include eldercare-related expenses and services.

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CRS-33
Appendix A. Federal Programs and Initiatives Offering Direct and Indirect
Benefits to Caregivers: Eligibility, Services, and Scope of Benefit
Program/Initiative
Eligibility
Service(s)/Benefit(s) and Scope
Older Americans Act
National Eldercare
Persons aged 60 and older, and caregivers of any age.
Information and referral services. (D)
Locator Service
Aging and Disability
Initially grantee states must target resource services to the elderly with
Information and referral services. (D)
Resource Centers
disabilities and at least one additional population with disabilities (i.e.,
(ADRCs)
adults with physical disabilities, mentally ill, and/or persons with mental
Resource services offered vary by state and may be made available on a
retardation/developmental disabilities), and caregivers of any age.
less-than-statewide basis.
The goal is to serve all individuals with long-term care needs regardless
of their age or disability, and their caregivers.
Home and Community-
Persons aged 60 and older. No means test, but services are to be targeted
Personal care services, homemaker and chore services. (I)
Based Supportive
to those with greatest social or economic need, with particular attention to
Services
those with low-income, minority older persons, those residing in rural
Services offered vary by state.
areas, those at-risk of institutionalization, and those with limited English-
speaking proficiency.
States may establish service guidelines, such as functional eligibility
criteria for personal care, homemaker, and chore services. However,
guidelines must be consistent with federal statutes and regulations.

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CRS-34
Program/Initiative
Eligibility
Service(s)/Benefit(s) and Scope
National Family
Priority given to: caregivers aged 60 and older; caregivers to those with
Information and referral; access assistance; counseling, support groups,
Caregiver Support
severe disabilities (including children with severe disabilities); and,
caregiver training; respite care services, supplemental services. (D)
Program (NFCSP)
caregivers providing assistance to older persons with Alzheimer’s disease
and related neurological disorders.
Services offered vary by state.
No means test, but services are to be targeted to those with greatest social
or economic need, with particular attention to those with low-income,
minority older persons, those residing in rural areas, those at-risk of
institutionalization, and those with limited English-speaking proficiency.
Alzheimer’s Disease Demonstration Grants to States
ADDGS
No federal eligibility criteria; State grantees have discretion to develop
May include respite care. (D)
demonstration programs that are specific to their needs and resources.
May include home health, personal care, day care, and companion
Program funds are intended to target persons with Alzheimer’s disease
services, among other services. (I)
and related disorders (i.e., dementia), with a focus on hard-to-reach and
underserved persons with the disease
Services, if offered, vary by grantee states.
Domestic Volunteer Service Act
Senior Companion
Senior volunteers must be aged 60 or older and meet income eligibility
Respite care. (D)
Program (SCP)
requirements. Volunteers must be able to serve at least 15 hours a week.
Participants receive a stipend of $2.65 an hour.
Homemaker services, chore services, transportation, and companionship.
(I)
Care recipients are frail older adults, adults with disabilities, and those
with terminal illnesses who are homebound.
Title XX of the Social Security Act

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CRS-35
Program/Initiative
Eligibility
Service(s)/Benefit(s) and Scope
Social Services Block
No federal eligibility criteria; states have discretion to set their own
Information and referral, respite care. (D)
Grant (SSBG)
criteria.
Personal care services, homemaker services, chore services, home
No means test, but services are intended to be distributed to individuals
maintenance services, and household management services, adult day
with greatest economic or social need; particular attention is given to
care, home-delivered and congregate meals. (I)
low-income older individuals.
Services offered vary by state.
Title XIX of the Social Security Act
Medicaid Home and
These criteria vary by state.
Respite care. (D)
Community-Based
Services
States may limit the number of individuals who can receive these
Includes case management, homemaker/home health
services.
aide services, personal care, adult day health, habilitation, and respite
care, among others. (I)
Services offered vary by state. Service package may vary by beneficiary
population. Services may be made available on a less-than-statewide
basis.

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CRS-36
Program/Initiative
Eligibility
Service(s)/Benefit(s) and Scope
Family and Medical Leave Act
FMLA
Employees working for a private employer with at least 50 employees
Up to 12 weeks of job-protected, unpaid leave per year to take care of a
employed within 75 miles, or for a public employer, regardless of size,
serious personal health condition, to care for a spouse, child, or parent
who worked for at least 12 months (not necessarily consecutive), and a
with a serious health condition, or to care for a newborn, newly adopted,
minimum of 1,250 hours (excluding paid or unpaid leave time) in the 12
or newly placed foster child. (D)
months preceding the start of their FMLA leave.
FMLA guarantees a minimum benefit. Employees are entitled to more
favorable leave benefits offered under state law, by an employer, or
through a collective bargaining agreement.
Tax Provisions
Dependent Care Tax
Employed taxpayers with qualifying child or a disabled spouse or
Tax credit calculated as a percentage of qualified employment-related
Credit (DCTC), Sec. 21
dependent.
expenses, limited to $3,000 for one qualifying individual, and $6,000 for
two or more qualifying individuals. (D)
Federal tax provision.
Dependent Care
Employed taxpayers with qualifying child or a disabled spouse or
Excludes up to $5,000 of earnings used for qualified dependent care
Assistance Program
dependent.
expenses (exclusion applies to income taxes and employment taxes). (D)
(DCAP), Sec. 129
Federal tax provision.
Exemptions for
Taxpayers can claim a qualifying relative as a dependent if the taxpayer
Tax savings depend on the taxpayer’s marginal tax rate. (I)
Dependents, Secs. 151
provided more than half of the person’s support during the calendar year,
and 152.
and the qualifying relative must have a gross annual income that is less
Federal tax provision.
than $3,500 in 2008.

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CRS-37
Program/Initiative
Eligibility
Service(s)/Benefit(s) and Scope
Head of Household
Taxpayers who are unmarried can claim the more favorable head of
More advantageous than the single filing status and more favorable tax
Status, Sec. 2(b)
household filing status if they paid more than half the cost of keeping up
brackets. (I)
a home;
AND
Federal tax provision.
a qualifying person lived with them for more than half the year.
A special rule permits an unmarried taxpayer who has a dependent parent
to claim the head of household filing status even if the parent lives in a
different household.
Unreimbursed Medical
Taxpayers who itemize their deductions.
Deductions for unreimbursed medical expenses for the taxpayer, the
Expenses, Sec. 213
taxpayer’s spouse, or dependents to the extent they exceed 7.5% of
Adjusted Gross Income (AGI). (I)
Federal tax provision.
Note: (D) = Services that may directly benefit caregivers; (I) = Services that may indirectly benefit caregivers; (D/I) = Services that may directly and
indirectly benefit caregivers.

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