CAREGIVER ADAPTATIONS TO REDUCE ENVIRONMENTAL STRESS:
THE ROLE OF HOME MODIFICATIONS
Julie Overton, MSG, MHA
National Resource Center on Supportive Housing and Home Modification
University of Southern California Andrus Gerontology Center
Los Angeles, California
According to the most recent National Long Term Care Survey, more than seven
million persons are informal caregivers – providing unpaid help to older persons who
live in home environments and have at least one limitation on their activities of daily
living (Administration on Aging, 2002). Although often overlooked in discussions of
caregiver support, the home environment is a critical component significantly affecting
the capacities of caregivers and service agencies to provide assistance. The home,
whether of the care recipient or the caregiver, functions as a service delivery site.
Adequate space and features within the home environment are essential tools for
caregiving by caregivers (Pynoos & Sanford, 2001).
Home modifications (e.g., portable ramps for access, roll-in showers to assist
with bathing, widened doorways for inside transport) and assistive devices (e.g., raised
toilet seats to assist with toilet transferring, hand held showers for bathing) help address
the physical demands faced by caregivers. Caring for an impaired older person often
requires tasks (e.g., heavy lifting and turning, helping a person transfer on and off the
bed) that physically strain caregivers (many of whom are also older persons) and can
compound existing health problems (Administration on Aging, 2000).
Home
modifications and assistive devices can provide immediate relief and allow caregivers to
provide assistance more easily and safely (Gitlin et al., 2001) and with less stress.
They also can reduce home care costs for frail elders and help to delay
institutionalization (Mann et al., 1999).
“Caregiver Adaptations to Reduce Environmental Stress” or CARES, a project
funded by the Administration on Aging, has taken several steps to assess caregiver
awareness and need for home modifications, ascertain the environmental coping
strategies used by caregivers in their own homes or in the homes of care recipients, and
evaluate the extent to which caregivers use home modification and AAA providers and
professionals. CARES convened four focus groups of caregivers, two consisting of
minorities. Characteristics of the approximately 40 caregivers included: 1) nearly 50%
were spousal caregivers; 30% were adult children; 2) over three-quarters were over age
70; and 3) 75% lived with their care recipient.
Initial focus group findings include:
1) Lifting, transferring, and bathing are the top three physical burdens faced by
caregivers;
2) Most caregivers do not know how to locate home modification products or
professionals. They told CARES they are desperate for a single, comprehensive
information source and they expressed a strong preference that the source be “a human
being they could talk to” as opposed to a booklet or a videotape. None of them were
aware of “Area Agencies on Aging.” Joyce said, “I’ve spent hours on the phone…you
don’t know where to start. Caregivers are so overwhelmed by what’s happening. How
do you learn what’s available?”
3) The most common home modification used to help with caregiving is grab bars,
however,
many home modifications were not specially designed products but are
homemade by caregivers often inventing their own solution (for example, plastic chairs
in showers, using an empty detergent bottle as a urinal, removing the knobs of the
stove).
4) Caregivers perceived the bathroom to be the most problematic room in the house.
Many caregivers mentioned that they were afraid of the hard, wet surfaces and were
particularly worried about slips and falls in the bathroom.
5) A supportive home environment must be accompanied by the ability to get in and out
of the home and to transfer the care recipient into a car or taxi. The majority of CGs
reported extreme difficultly transporting the care recipient in a car or taxi.
6) Caregivers do not use home modifications primarily due to expense and lack of
understanding of the benefits.
7) Caregivers believe they would receive more financial support if they placed their
loved one in a facility. Jerry told us, “Financially I’m being ruined by stupid legislation. If
I put my wife in a nursing home I would get financial assistance… keeping her at home I
get zilch.” However, caregivers also believe that the care they provide at home is
superior to that of a facility. Patrice told us: “No one will love my mother like I do.”
Despite the benefits of environmental coping strategies for supporting caregivers,
several barriers prevent their use: 1) policymakers and programs lack awareness of
unmet needs and the benefits of environmental coping strategies; 2) caregivers lack
understanding of environmental coping strategies benefits; 3) a lack of research on
environmental coping strategies needs of different types of caregivers (e.g., spouses,
adult children); and 4) service provider difficulties in reaching and assessing caregivers
for environmental coping strategies.
To improve the capacity of caregivers to provide daily assistance, several
recommendations are suggested. First, home modification informational resources for
caregivers need to be significantly improved (a future outcome of the CARES project).
Second, local lead agencies need to be more effective in advertising their services.
Third, caregivers need information about government and other funding for home
modifications to reduce their financial burden and increase the likelihood that they will
make environmental changes. Fourth, since caregivers respect the knowledge and
experience of their peers in implementing home modifications, a structure or process
should be put in place to inventory their collective knowledge beyond support groups.
Fifth, because caregivers are often wary of the help available, standardized training and
quality assurance of in home care personnel would allay these fears. Sixth, further
attention is needed with respect to problems associated with transporting care
recipients. Lastly, given that many caregivers reported relying almost exclusively on
retail stores such as Lowe’s and Home Depot, it may be worthwhile for local social
service and AAAs to explore partnerships with these stores (e.g., train employees
regarding home modifications, set up in-store displays, have onsite and contact
information available).
We cannot ignore the physical stresses placed on caregivers who provide daily
assistance to their care recipients. Home modifications can help care for the caregiver
by making caregiving activities less stressful, more convenient, and easier. Additionally,
home modifications for the caregivers’ homes can support their ability to maximize and
maintain their own health. As put by focus group participant, Patrice, “I’m sacrificing
career, I’m sacrificing financial stability by caring for my mother…it is a very
depressing situation …I need some care too.” The ability of caregivers to continue
to provide care hinges on their physical and emotional health. Home modifications and
assistive devices to reduce physical burden and strain must be addressed by programs,
professionals and policies responding to the needs of caregivers. CARES’ next project
will address this recommendation by training and providing technical assistance to
aging network agencies on strategies to improve environmental coping strategies for
caregivers.
References
Administration on Aging (2002). Family Caregiving. Washington, DC: Administration on
Aging.
Administration on Aging (2000). America’s Families Care: A Report on the Needs of
America’s Family Caregivers. Washington, D.C.: Administration on Aging.
Gitlin, L., Corcoran, M., Winter, L., Boyce, A., & Hauck, W. (2001). A randomized
controlled trial of a home environmental intervention: Effect on efficacy and upset in
caregivers and on a daily function of persons with dementia. Gerontologist 41(1), 4-14.
Mann, W.C., Ottenbacher, K.J., Fraas, L., Tomita, M., & Granger, C.V. (1999).
Effectiveness of assistive technology and environmental interventions in maintaining
independence and reducing home care costs for the frail elderly. Archives of Family
Medicine 8, 210-217.
Pynoos, J. (2001) Home Modifications. In G. Maddox (Ed.), The Encyclopedia of Aging
(3rd ed). New York: Springer.
Acknowledgements
Funding for CARES is provided by the Administration on Aging, U.S. Department of
Health and Human Services. For more information on CARES, contact the National
Resource Center on Supportive Housing and Home Modification, USC Andrus
Gerontology Center, 3715 McClintock Avenue, Los Angeles, California 90089-0191.
(213) 740-1364, homemods@usc.edu, or www.homemods.org