The American Society on Aging is pleased to acknowledge the AARP Andrus Foundation, based in Washington, D.C., for funding "Research Today." This section was written by Aging Today associate editor April Thompson.
Research Today
HOW AGENCIES BEST SERVE ELDERS: PATHS--AND BARRIERS--TO SUCCESS
Tribute Paid To The Late Rosalie Wolf
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The American Society on Aging is pleased to acknowledge the AARP Andrus Foundation, based in Washington, D.C., for funding "Research Today." This section was written by Aging Today associate editor April Thompson. |
In this issue of Aging Today, the "Research Today" section looks at two studies that examine a wide range of innovative, high-quality support programs for elders and that analyze both the barriers that impede the work of those programs and the paths leading to their success. The first study, conducted by the National Council on the Aging, examines the special features and challenges unique to four different kinds of programs. The second study, conducted by a team at the Wellesley College Center for Research on Women, focuses more exclusively on caregiver support programs serving families of people with dementia.
CARING FOR THE CAREGIVERS--SURVEY TARGETS DEMENTIA PROGRAMS
This year, caregivers are receiving an unprecedented nod of support from the U.S. Congress in the form of a $125 million annual commitment under the newly launched National Family Caregiver Support Program. The program is part of the federal Older Americans Act reauthorization passed by Congress last fall. With such increased federal aid underway, a comprehensive, soon-to-be released study--funded by the Retirement Research Foundation and the Helen Bader Foundation--provides a timely addition to the growing body of research on how family caregivers can best be served.
In the study, "The National Dementia Caregiver Intervention Policy Study," researcher Nancy Emerson-Lombardo and colleagues at the Wellesley College Center for Research on Women in Wellesley, Mass., focus on identifying and analyzing intervention programs that suc- cessfully aid those caring for someone with dementia. One aim of the study is to persuade policymakers to provide more funding for individualized services, Emerson-Lombardo told Aging Today. She added, "One-on-one interventions are a relatively neglected but essential area of programming, public policy and funding."
ONE ON ONE
Emerson-Lombardo and the Wellesley team defined "one-on-one interventions" as programs tailored to the individual needs and circumstances of the caregiver or the person with dementia. These differ from group interventions, which use a set of procedures that don't vary from client to client. The three-year study of individualized dementia caregiver support programs, which will be released this spring, is the first systematic review and evaluation run by both agency-based providers and researchers, according to Emerson-Lombardo.
In compiling the study, the Wellesley team reviewed published and unpublished literature about individualized interventions for caregivers dealing with dementia. They identified about 1,300 support programs, then selected 186 of them and interviewed their administrators. Many were from Alzheimer's Association chapters, other agencies or state- and federal-subcontracted organizations, and about one in six were from research-based programs.
To help craft policy recommendations, the Wellesley researchers also conducted separate interviews with 22 administrators. Half were heads of state-level dementia organizations and half were officers at the Alzheimer's Disease Demonstration Grants-to-States Program of the U.S. Administration on Aging (AoA). This program was formerly part of the Health Resources and Services Administration (hrsa) of the U.S. Department of Health and Human Services. The Alzheimer's demonstration grants were launched in 1992; the AoA took over the program in the fall of 1998.
When the Wellesley team asked how important one-on-one interventions are--and why--72% of the administrators said they felt such interventions were either extremely important or very important. They said that individualized programs gave their staffs more flexibility in providing services and enabled them to respond better to clients' unique needs. Some respondents commented that certain things cannot be done within a group approach, such as assessing individuals' situations, offering personal counseling or tailoring care plans.
OVER THE LONG HAUL
A key finding in the report involved helping caregivers over the long haul. More than half of the providers interviewed (53%) extended support for as long as participants needed them. Another 14% provided assistance "for as long as participants qualify." Only one in four study participants offered interventions that lasted a year or less. Most of the 22 federal and state program officers favored public policies that provide long-term help for caregivers. Of the 22 administrators interviewed, 17 said they thought that interventions should be ongoing; the other five had no opinion or said they were undecided on the point.
Providers are learning the value of long-term support, Emerson-Lombardo said. She explained, "Providers of new programs start with limited funds, so they try to be conservative and guard against not being able to meet the demand. Then, as they see that they are able to raise the money and meet the demand for service, they find that caregivers come in and out of needing support."
Policymakers ought to think about the effects of depression on caregivers when they consider how long services should be made available, said Lynn Friss Feinberg, deputy director of the National Center on Caregiving, a program of the Family Caregiver Alliance (FCA), based in San Francisco, Calif. The Wellesley researchers identified FCA as a noteworthy model. "In California, 57% of the family caregivers who completed in-home assessments showed clinical signs of depression," noted Feinberg. "It's a major health problem." Additionally, she said, caregiver depression skyrockets during the year following placement of the family member with dementia in a nursing home.
"Alzheimer's can last up to 25 years, with half of that time in assisted living or a nursing home," Emerson-Lombardo said, "so we argue that many caregivers continue to need intervention."
When the Wellesley researchers asked whom a program sees as the main client 68% of the 22 respondents said both the caregiver and the person with dementia, whereas 23% said only the caregiver should be the client. Another 9% said that they regarded only the person with dementia as the client. "In the Alzheimer's field, some states still focus on the older person, and they haven't made the transition of seeing the caregiver as a client," said Emerson-Lombardo, a former chair of the national Alzheimer's Association's board of directors. "But a lot of people who have been in the field for some time now see this as a family unit, and they often call it the 'caregiver-client dyad.'"
The administrators also felt that the definition of caregiver should be much broader than that provided by many state legislatures. Some said that the caregiver should be any family member, friend or paid helper; others said it should be anyone who helps the most or someone with legal decision-making authority, such as a court-appointed guardian; a few said unpaid aides should be included as well.
The researchers also wanted to know which of the participants in caregiving administrators thought should be targeted for caregiver programs, both in community outreach efforts and in the allocation of limited resources. Nearly a third (8 respondents) answered that underserved elders should be targeted, including those with low socioeconomic status, members of ethnic or racial minorities, those in rural and inner-city areas, those who do not speak English, medically underserved older adults and isolated elders.
Detailed discussions about caregiver issues raised by the study are necessary to help policymakers create informed policies, said Robyn Stone, executive director of the Institute for the Future of Aging Services at the American Association of Homes and Services for the Aging in Washington, D.C. Stone called the Wellesley study "a good descriptive start" because it provides the field of aging with a picture of the range of interventions being offered.
When it is released, the final Wellesley report will showcase 20 best-practice programs along with case studies of 20 other noteworthy programs. For a copy of this study after April 1, 2002, contact Nancy Emerson-Lombardo at nemerson@wellesley.edu or call (781) 283-2740.
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