ARTICLE IN BRIEF
An analysis of a support program at a New York academic medical center for caregivers of patients with dementia estimated and projected that a similar program in Minnesota could result in about 5 percent more patients remaining at home over 15 years, with 19.3 percent fewer patients dying in institutions.
A model program providing counseling and other help for caregivers of Alzheimer's dementia patients could prolong home care while reducing stress and depression among caregivers, a new analysis in the April issue of Health Affairs suggests.
The program, the New York University Caregiver Intervention (NYUCI) program, was developed by researchers at the New York University Langone Medical Center under a translational research grant from the National Institute on Aging. The intervention consisted of six sessions of individual and family counseling, support group participation, and continuous availability of ad hoc telephone counseling.
Developed by researchers led by Mary S. Mittelman, PhD, research professor in psychiatry and director of caregiver research at NYU's Silberstein Institute for Aging and Dementia, NYUCI has been evaluated in several studies.
In a new analysis of the program, investigators estimated the costs of running a similar model in Minnesota to caregivers of patients with dementia over a projected 15-year period from 2010 to 2025. They found that the model could result in about 5 percent more patients remaining at home over 15 years, with 19.3 percent fewer patients dying in institutions. According to the study, the state would save $996 million in direct care costs over that period, ranging from $100 million to $2.64 billion depending on worst- and best-case scenarios, respectively.
WHAT THE MINNESOTA TEAM DID
The research team developed a population-based statistical model to estimate disease progression and place of residence for individuals with Alzheimer's disease or other dementias between the ages of 65 and 100. The eligible population included people with dementia who initially lived in the community with a spouse or adult child care-giver.
The model projected and tracked, from 2010 to 2025, the number of individuals who remained in their community and their associated costs of care; the number who required residential placement and additional facility fees; and the number who died or could be expected to die over that time period. Literature on the epidemiology, natural history, costs, and evidence-based management of dementia was incorporated into the model and cost projections.
The model analyzed associated costs under two scenarios: with enhanced caregiver supports where caregivers participated in the NYUCI, or normal services without the NYUCI. They then assessed potential savings associated with the NYUCI, without incorporating variable implementation factors such as program and marketing costs and less- than-complete participation rates.
THE NYU INTERVENTION
Dr. Mittelman told Neurology Today in a telephone interview that she started researching the potential benefits of caregiver support more than 25 years ago in a study supported by NIH. Recent community translation programs have been supported by grants from the Administration on Aging.
“If you are going to make an argument for the benefits of such translational research, this project in Minnesota is a powerful example. In fact there are plans to make the intervention part of a statewide program,” she said.
Because the estimated health care savings reported in the Minnesota study did not include those for treating caregiver stress and depression, the actual savings would be even larger, she added.
The program involves caregiver assessment and counseling, family counseling, and ongoing availability of further counseling, as needed, by telephone or e-mail. She said, however that the researchers have found that the family counseling sessions appear to be the most powerful part of the intervention.
This includes seven individual counseling sessions over a four-month period, with follow-up sessions for up to two years. She added that Minnesota, where the association is headquartered, was the first state to test the NYUCI program but that California, Utah, Georgia, Wisconsin, and Florida are also implementation sites.
Dr. Mittelman noted that other countries are also beginning to adopt this caregiver support model, including Queensland, Australia, and Israel.
The cost analysis of the Minnesota program was led by Kirsten Hall Long, PhD, senior health economist at K. Long Consulting in St. Paul, MN. In addition to Dr. Mittelman, the team also included James P. Moriarty, MSc, a health services analyst at Mayo Clinic in Rochester, MN, and Steven S. Foldes, PhD, an adjunct associate professor of epidemiology and community health at the University of Minnesota School of Public Health.
Heidi Haley-Franklin, director of clinical services at the Alzheimer's Association, told Neurology Today that Minnesota has implemented a four-year evaluation of the NYUCI caregiver support program under a US Administration on Aging grant, and while the study's final cost data are not yet available, an evaluation in 2012 estimated the average cost per dementia caregiver to range between $2,500 and $3,000.
Amy Sanders, MD, an assistant professor of neurology at SUNY Upstate Medical University in Syracuse, was one of the authors of a set of dementia quality management measures developed by an interdisciplinary working group representing the major national organizations and advocacy organizations concerned with dementia patients and their caregivers.
In the report, published last year in Neurology, the group concluded that caregivers “are essential partners in health care management” of such patients and noted that several different models of integrated care have been shown to increase family caregivers' competence while helping to reduce stress and other problems.
However the cost of starting dedicated caregiver support programs is a major barrier, Dr. Sanders told Neurology Today in a telephone interview.
“The upfront costs of hiring social workers, psychologists, and/or counselors are very expensive, and the payback is only realized in the long term,” she said. “A lot of facilities [that could provide such services] are pinched for money right now, and in many places there is diminishing care. This is almost a no-win situation and a real impediment. I spend a lot of time with dementia caregivers and there is a basic need for greater education and support.”
She noted that caregiver hotlines, while helpful, do not provide the individualized personal connection that seems most helpful, and that similar support resources are only available on an ad hoc basis.
“Caregiver support needs to be individualized and I think this paper and other research at least raise awareness of this issue, and that there is much to be gained by face-to-face psychosocial support for caregivers and family members.”
Another problem, she said, is that some caregivers are unwilling to seek psychiatric consultation or agree to antidepressant or anti-anxiety treatment.
One of the most significant things that she has found with caregiver support programs is that including family members in sessions has an incrementally beneficial effect on the mental health of primary caregivers.
“Awareness of this issue is growing, but compared to resources and programs for those caring for cancer and HIV patients, there is much less attention to this population because dementia can go on for years before institutionalization is necessary. But that also means caregivers have to cope for a longer amount of time, which can slowly affect their psychological state. The issue is relentless, and it is not just depression, stress, and anxiety, but also a sense of guilt that they are not doing enough.”
A PILOT PROGRAM FOR CAREGIVERS IN RURAL NORTH DAKOTA
In the same issue of Health Affairs, investigators conducted an analysis of another caregiver program for patients with Alzheimer's — this time, in rural North Dakota.
The North Dakota study evaluated the state-funded Dementia Care Services Program, which provides individualized assistance to caregivers and may be especially helpful in rural areas where access to medical care is limited and hospital visits often require considerable travel time.
Led by Marilyn Klug, PhD, an associate professor at the Center for Rural Health at the University of North Dakota School of Medicine and Health Sciences, in Grand Forks, the researchers estimated potential savings from the program would be $39.2 million by delaying long-term care placement of dementia patients and $0.8 million from reduced use of medical services.
During the program's first two years, assistance was provided to 1,750 caregivers and primarily family members of 951 individuals with dementia. Unpaid caregivers said the program helped them feel more empowered in addition to delaying long-term placement, and that as a result they used fewer medical services such as hospitalizations and 911 calls. The two-year cost of the program was $1.2 million.
Under the system, caregivers can contact program representatives at any time and may continue to contact them throughout the years they are caring for the person with dementia.