In the Public Domain
Vol. 39, No. 2, 177-185
Analyzing data from more than 1,500 family caregivers from the 1996 National Caregiver
Survey, this study documents the ways in which dementia care is different from other
types of family caregiving. Not only do dementia caregivers spend significantly more hours
per week providing care than nondementia caregivers, they also report greater impacts in
terms of employment complications, caregiver strain, mental and physical health prob-
lems, time for leisure and other family members, and family conflict. Differential impacts
remain even after controlling for intensity of caregiving involvement and
sociodemographic factors. Study findings suggest the need to tailor programs and services
to the unique challenges faced by dementia caregivers.
Key Words: National survey, Stressors, Families, Services
Prevalence and Impact of Caregiving:
A Detailed Comparison Between Dementia
and Nondementia Caregivers
Marcia G. Ory, PhD, MPH,1 Richard R. Hoffman III, MA,2 Jennifer L. Yee, PhD,3
Sharon Tennstedt, PhD,4 and Richard Schulz, PhD5
Numerous studies carried out over the past decade
have addressed the nature and extent of caregiving as
well as its impacts on the health and well-being of the
caregiver (e.g., Bookwala, Yee, & Schulz, 1998; Schulz
& Quittner, 1998). The personal, social, and health
impacts of dementia caregiving have been well docu-
mented (Schulz, O'Brien, Bookwala, & Fleissner, 1995).
The direct costs of dementia care are also staggering,
with recent estimates exceeding $50 billion per year
(Leon, Cheung, & Neumann, 1998). With the aging
of the population, the number of people in the United
States aged 65 and older with Alzheimer's disease and
related disorders is expected to increase from nearly
two million in 1995 to nearly three million by the
year 2015 (U.S. General Accounting Office, 1998).
Given the characteristic cognitive, behavioral, and
affective losses associated with the progression of the
disease, caring for relatives with dementia is assumed
to be more difficult and burdensome than caring for
The authors thank the National Alliance for Caregiving and American
Association of Retired Persons for the use of their data published in the
Family Caregiving in the U.S.: Findings from a National Survey, National
Alliance for Caregiving and American Association for Retired Persons, 1997.
The data from the National Caregiver Survey are available on disk to
nonprofit research organizations and individuals at a nominal charge. Re-
quests to: National Alliance for Caregiving, Suite 462, 4720 Montgomery
Lane, Bethesda, MD 20814.
The content of this publication does not necessarily reflect the views
or policies of the U.S. Department of Health and Human Resources.
1Address correspondence to Marcia G. Ory, BSR/NIA/NIH, Gateway
Building Suite 533, 7201 Wisconsin Ave. Msc 9205, Bethesda, MD 20892-
9205. E-mail: email@example.com
department of Psychology, University of Maryland, College Park.
'University Center for Social and Urban Research, University of Pitts-
4New England Research Institutes, Watertown, MA.
5University Center for Social and Urban Research and Department of
Psychiatry, University of Pittsburgh, PA.
loved ones with other chronic conditions and disabili-
ties (Light, Niederehe, & Lebowitz, 1994). However,
this assertion has never been adequately examined in
a large, representative population that includes both
dementia and nondementia caregivers.
To date, few studies have been conducted that ex-
amined differences between dementia and nonde-
mentia caregivers. The results of these prior studies
have been inconsistent with respect to the impact of
caregiving on dementia versus nondementia caregivers.
Some studies have reported few differences between
dementia and nondementia caregivers in terms of burden
or depression (Cattanach & Tebes, 1991; Draper, Poulos,
Cole, Poulos, & Ehrlich, 1992). In contrast, some in-
vestigators have noted that dementia caregivers suffer
more negative effects, such as increased depression
and anxiety levels, than do nondementia caregivers
(Hooker, Monahan, Frazier, & Shifren, 1998; Moritz,
Kasl, & Berkman, 1989). However, most of these studies
relied on relatively small convenience samples that were
not nationally representative. In addition, these stud-
ies primarily investigated differences in caregivers' mental
health and! did not include detailed descriptions con-
cerning characteristics of dementia and nondementia
caregivers. Furthermore, in examining differences in
mental health outcomes between dementia and non-
dementia caregivers, these studies did not control for
other factors known to influence mental health out-
comes, such as level of caregiving involvement and
sociodemographics (e.g., gender, income). Thus, it re-
mains to be seen whether differences in mental health
outcomes between dementia and nondementia care-
givers are due to the dementia status of care recipi-
ents or other uncontrolled factors.
Vol. 39, No. 2, 1999
by guest on October 28, 2015
Recent innovations—such as the development of
new cognitive enhancing drugs and the emergence of
new residential care facilities—are likely to affect the
course and care of people with dementia. Similarly,
with a rapidly expanding population of older adults,
smaller family sizes, and more women in the paid la-
bor force, there are concerns regarding the availabil-
ity and willingness of future generations of family care-
givers (Hooyman & Gonyea, 1995; Marks, 1996; Wolf,
1994). However, functional deficits are still likely to
occur, particularly at the later stages of the disease,
and there is no reason to believe that, for the fore-
seeable future, family members will not remain pri-
mary caregivers throughout most of the course of ill-
ness. As a result, research on caregiving remains a pri-
ority because of the need to strengthen family mem-
bers' abilities to provide needed care without jeopar-
dizing caregivers' own health or well-being or relin-
quishing their caregiver responsibilities prematurely
(Schulz & Quittner, 1998). In order to establish the
different needs that dementia and nondementia care-
givers may have for services, it is important to de-
velop a detailed characterization of the differences be-
tween these two types of caregivers.
Thus, the primary purpose of this study is to pro-
vide a detailed description of the differences between
dementia and nondementia caregivers with regard to
several areas that are germane to caregivers' well-
being. Differences between dementia and nondementia
caregivers are examined in terms of who is providing
care, impacts of caregiving on the caregiver (caregiver
strain, role strain, family conflict), involvement in caregiving
(hours spent caregiving, tasks performed), effects of care-
giving on employment, and service utilization. In ad-
dition to developing a detailed description of demen-
tia and nondementia caregivers, multivariate analyses
are performed that control for factors known to influ-
ence caregivers' mental health, (e.g., gender, income
and level of caregiving involvement) in order to de-
termine whether there are differences in caregiver strain
by dementia status over and above those due to other
factors. Unlike prior research, differences between dementia
and nondementia caregivers are investigated using nation-
ally representative data from the 1996 National Caregiver
Survey (National Alliance for Caregiving and Ameri-
can Association for Retired Persons [NAC/AARP], 1997).
The guiding question throughout this article is how
caring for someone with dementia or related prob-
lems affects the caregiving experience. In addition, im-
plications for policy and practice will be noted.
In 1996, the National Alliance for Caregiving and
the American Association of Retired Persons con-
ducted a survey to identify and profile the impacts of
caregiving. Two samples were employed in this sur-
vey. One sample was a fully replicated, stratified, single-
stage random-digit-dialing (RDD) sample of U.S. house-
holds with telephones generated in-house by the ICR
Survey Research Group, Inc., of Media, Pennsylvania.
In addition to this sample, a supplemental sample was
generated from ICR's EXCEL Omnibus Service. This
sample included respondents who previously had iden-
tified themselves as Black, Hispanic, or "other race"
and was used to oversample by race for Black, His-
panic, and Asian caregivers. Because funds were not
available to conduct interviews with non-English-speak-
ing participants, the telephone survey was adminis-
tered only to individuals previously identified by ICR
In the overall sample, there was a total of 1,509
participants (623 Whites, 306 Blacks, 307 Hispanics,
264 Asians, and 9 "other") who were at least 18 years
of age; the mean age of all caregivers was 46. The
actual number of participants used in our analyses was
somewhat smaller due to missing data on items of in-
terest. In order to be considered a caregiver for the
present study, potential respondents either currently
had to be providing unpaid care or had provided un-
paid care within the last 12 months to a relative or
friend who was at least 50 years of age. Caregiving
could include helping with personal needs, household
chores, financial matters, outside service arrangement,
or regular visitation. It was not necessary for the caregiver
to live with the care recipient to be included in this
Trie caregivers were asked about the health status
of the care recipients. Those who said they provided
care to someone with Alzheimer's disease, confusion,
dementia, or forgetfulness were classified as "demen-
Survey Format and Measures
The survey consisted of 44 questions about topics
such as amount and type of care, caregiving impacts,
and service utilization. This survey couldbe completed
in about 20 minutes. Participants were assured ano-
nymity and when contacted were told that the data
would be beneficial to government and private agen-
cies who are interested in assisting caregivers.
Amount and Type of Care
In addition to standard demographic measures, there
were items concerning amount and type of care pro-
Activities of Daily Living (ADLs).—Respondents an-
swered yes/no questions as to whether they assisted
the care recipient with getting out of bed or a chair,
getting dressed, getting to and from the toilet, and bath-
ing or showering. They also were asked if they helped
feed the care recipient and if they changed diapers.
Instrumental Activities of Daily Living (IADLs).—Re-
spondents also answered yes/no questions concerning
whether they managed the care recipient's finances,
shopped for groceries, did the housework, prepared
meals, and administered pills, medications, or injec-
tions. In addition, the caregivers reported whether they
were responsible for transportation as well as arrang-
ing or supervising outside services.
by guest on October 28, 2015
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