by Soo Borson, MD, Mary Lessig, BS, Elizabeth Zuhr, BS, and Teresa Holder, MSW
Families dealing with Alzheimerís disease often report resistance from their physicians when they first seek a diagnosis. ďMotherís family doctor did not do anything Ė he just said flat out itís memory loss due to aging, thereís nothing that can be done.Ē1 Once a diagnosis is accomplished, many families are dissatisfied with the lack of specific recommendations about what to do next, what to expect from treatment, and how to prepare for the future. Still other caregivers express disappointment that their physician didnít suggest a return visit to talk more about managing a disease that will progress over years and so radically alter the lives of those it touches.
While physicians are becoming more familiar with Alzheimerís disease Ė how to diagnose and treat it, and how to counsel and support families Ė stories like these are unfortunately still common. At the University of Washington, where the Geriatric and Family Services Clinic has been helping diagnose and treat dementia patients and their families for over twenty years, we have initiated a new program of shared medical appointments, which patients with dementia and a family member attend together.
Shared medical appointments are offered to new and established patients as a way of receiving regular, scheduled follow- up care that otherwise would be difficult to obtain in a busy academic medical center. Like many other specialized health care programs, the need far exceeds capacity. In some large health care systems around the country, shared medical appointments have become popular with both patients and doctors for just this reason. Delivering care this way when the problem isnít hypertension or diabetes, but dementia, is new. And itís different from other models of group care that have been described.
Groups meet for two hours once a month with the clinic director, Dr. Borson, and residents in training, with support from the clinic social worker and staff. Six to eight patient and family caregiver pairs generally attend. After the first few meetings, participants look forward to seeing each other and begin to share ideas and resources. Shared medical appointments resemble support groups but differ from them in important ways. First; itís health care; medical aspects of dementia, physical and emotional complications related to it, and psychosocial concerns can all be dealt with in the same session. Prescription changes, new health concerns, follow up tests and lab studies, and problem solving are all part of the process. Second, itís confidential; all participants agree in writing that all health information shared in the group is private and must be safeguarded. Third; itís educational - the groupís needs determine each sessionís teaching focus, e.g. why itís important to stay hydrated, how to manage a complicated medication plan, or how to work on family relationships. Fourth, itís fun.
Next steps will include formally evaluating participant and provider satisfaction and program results, starting drop-in groups for program Ďgraduates,í and creating training tools to teach other providers how to implement this model of care.
Patients sometimes leave the groups, either because they have problems that must be managed more intensively, or because they and their family have reached a new and better way of functioning and no longer require regular visits. From the doctorís point of view, caring for patients this way is a lively, effective, and often moving experience. Among the most exciting discoveries to emerge from this program is how patients change as they participate. Self-esteem and confidence rise, verbal abilities improve, communication increases, and positive emotional attachments form. A man with early-onset Alzheimerís disease, no longer able to speak fluently, regularly contributes to the group through the sound of his voice and the expressiveness of his attentive face; his wife reports that he canít wait to come back. A woman in her 80ís advised another how she could remember to drink enough fluids during the day. Another man, by nature very reserved about personal matters, now says, ďIím not leaving this group!Ē
1. Connell, C., Boise, L., Stuckey, J., et al. Attitudes toward the diagnosis and disclosure of dementia among family caregivers and primary care physicians. The Gerontologist, 2004; Vol. 44, pp.500-507.