David M. Bass, Ph.D.
Senior Vice President & Senior Research Scientist
Center for Research and Education
Benjamin Rose Institute on Aging
Mark E. Kunik, M.D., M.P.H.
Professor of Psychiatry and Behavioral Sciences
Menninger Department of Psychiatry and Behavioral Science
Baylor College of Medicine
Michael E. DeBakey VAMC
Dr. Bass is a recipient of a 2008 Investigator-Initiated Research Grant from the Alzheimer’s Association. Dr. Kunik is a board member of the Alzheimer’s Association’s Houston & Southeast Texas Chapter.
Burdens of Dementia Care
As populations around the world are aging, Alzheimer’s disease and other dementias affect a growing number of people. In the United States alone, an estimated 5.5 million individuals aged 65 and older are living with Alzheimer’s. Providing adequate care often involves hospital visits, increased pharmacy costs and other burdens that stress the individuals with Alzheimer’s and their caregivers. Novel, cost-effective care services may offer a vital resource for these families.
Drs. David M. Bass and Mark E. Kunik have identified several factors involved both in the cost and quality of family-based dementia caregiving. According to their research, dementia caregivers and care recipients are often poorly connected to health care services and local communities. Moreover, physicians are often unable to provide caregivers with sufficient informational resources for managing daily care responsibilities. To address these problems, Drs. Bass and Kunik, along with several colleagues, assessed the value of a telephone-based care-coaching and coordination program for U.S. veterans with dementia and their family caregivers. They call this program “Partners in Dementia Care” (the partnership version of the evidence-based care program, BRI Care Consultation™).
The program is delivered through the collaboration of a health system (for example, a Veterans Administration Medical Center) and a community organization. The Benjamin Rose Institute on Aging (BRI) licenses and trains organizations to deliver the care program. Licensed sites include seven chapters of the Alzheimer’s Association.
A Novel Care-Coordinating Program
Partners in Dementia Care is designed to (1) provide dementia-related education and information, (2) offer emotional support and coaching, (3) link families to medical and non-medical services and resources and (4) mobilize and organize families’ informal care networks. From 2006 to 2011, Drs. Bass and Kunik led a study of the program that focused on five communities (Boston, Massachusetts; Houston, Texas; Providence, Rhode Island; Beaumont, Texas; and Oklahoma City, Oklahoma) with both a Veterans Health Administration (VHA) health care network and a local Alzheimer’s Association chapter. Their effort was funded in part by a 2008 Investigator-Initiated Research Grant from the Association.
Participants in the Boston and Houston communities received the Partners in Dementia Care intervention, while those in the other three communities received “usual” care as a comparison for the intervention’s potential impact. The program was delivered by part-time staff at the VHA and Alzheimer’s Association chapters. VHA staff primarily focused on helping the participants access VHA medical and non-medical resources, while chapter staff helped veterans’ caregivers access non-VHA resources, including those offered by the chapters themselves.
To gauge their program’s success, the researchers conducted phone interviews with participants, examined VHA and chapter administrative records, and reviewed electronic records that track the use of the Partners in Dementia Care intervention. Study results showed that the program significantly improved veterans’ and caregivers’ overall quality of life without increasing the cost of care.
While more research is needed to confirm these benefits, the results provide encouraging evidence that by partnering with community organizations, health systems such as the VHA may be able to more fully address the diverse problems faced by individuals with dementia and their caregivers.
The study’s findings for service use and cost outcomes were published in 2015 in Alzheimer’s and Dementia: Translational Research & Clinical Interventions and the Journal of General Internal Medicine. Results for quality of life outcomes were published in 2013 in the Journal of the American Geriatric Society and in 2014 in Alzheimer’s Research and Therapy.
A Passion for Improving the Lives of People with Dementia
Drs. Bass and Kunik have a long-standing interest in the mental health care of older adults. As Dr. Kunik describes, “Early in my career, it was apparent to me that physicians were offering little to patients and caregivers beyond a diagnosis. Knowing there is so much we can offer patients and caregivers through education, support and services, finding new approaches to more broadly help them became one of my career missions.” Such a mission involves thinking about better ways to understand and meet the needs of people with dementia, “whether the needs are related to issues of memory, activities of daily living (e.g., bathing), finances, pain or sensory problems.” It also involves understanding how caregiver well-being and patient health are intertwined. By learning the individual strengths and weaknesses of dementia caregivers — and by addressing their individual concerns — health care professionals can improve the lives of caregivers and care recipients alike, he says.
Dementia Care and the Alzheimer’s Association
According to Drs. Bass and Kunik, the Alzheimer’s Association has played multiple roles in their efforts to improve dementia care. Grant funding from the Association provided necessary assistance for their Partners in Dementia Care study. In addition, staff members at the Association chapters were critical in helping deliver the program and completing many other aspects of the study.
Dr. Kunik also credits the Association’s use of advocacy to spur government support for dementia care research. These large-scale efforts in the halls of Washington, D.C., are balanced by smaller, day-to-day forms of assistance for caregivers and families. Such assistance includes the Association’s 24/7 Helpline, which provides information and support to caregivers and others affected by Alzheimer’s, as well as BRI Care Consultation services at some Association chapters. Dr. Kunik advises caregivers to “put aside one hour to comb through the Alzheimer’s Association website (alz.org) and then make a call to your local chapter to learn what they have to offer.”