My research interests over thirty-five years at the Duke Center for Aging have evolved from early studies with Drs. Linda George and Elizabeth Clipp of the emotional, physical and financial consequences of caring for a family member with dementia, to evaluating outcomes of dementia-specific care practices such as providing trained in-home respite care workers and individualized family education to reduce negative mental health effects of providing family dementia care. Later, I collaborated on National Institute on Aging multi-site studies of the effectiveness, benefits and limits of Alzheimer’s special care units in nursing homes, culminating in a collaboration with UNC Sheps Center investigators titled “Families Matter in Long-Term Care”, a group randomized trial funded by the National Institute on Aging. “Families Matter” was designed to help families work with staff and residents to create a role for themselves that would benefit the resident’s quality of life and improve family/staff relations. The paper published in the journal, Seniors Housing and Care, won the journal’s Outstanding Research Paper award.
Families of assisted living and nursing home residents were helped to develop plans for their visits which included activities categorized as “doing things”, “getting around”, “looking good” and “eating well”. Families of residents with dementia did not differ in their frequency of visits from other families, but they spent more time on nutrition, mobility and discussing care with staff. Overall, the program decreased family burden and improved resident quality of life. Residential care staff also reported less burnout and greater partnership with families. However, personal care staff reported greater burden and frustration and felt less in partnership and more controlling by families than their supervisors. We learned that creating, roles for families may foster a greater sense of responsibility, but perhaps a concomitant realization that they hadn’t been doing as much as they could or should, which resulted in increased family guilt and conflict.
Currently, I am working with Bobbi Matchar, MSW from the Duke Family Support Program on the “Alzheimer’s Medical Advisor” project funded by the National Institute of Nursing Research, led by UNC geriatrician, Dr. Philip Sloane, with team members from the UNC Sheps Center.
When people with Alzheimer’s disease or related dementias develop new symptoms, such as cough, abdominal pain, or fever, their family caregivers must decide whether the problem is minor enough to try treating at home, or whether to go to a physician’s office or the emergency department. This can be challenging when the person with dementia has difficulty communicating accurately how s/he feels or resists going to an office visit or evaluations by medical professionals. Families need tools to help them evaluate and manage symptoms that could represent new or evolving medical illness in a family member with Alzheimer’s disease.
The “Alzheimer’s Medical Advisor” is a series of materials in development to help family caregivers of persons with dementia deal with these issues. It consists of internet-based, written, and video tools to help concerned family understand, identify, communicate with health professionals, and make decisions about medical problems. The materials will: 1) inform families about common medical problems experienced by persons with dementia; 2) help family caregivers decide what to do next when their family member has a new or exacerbated medical problem; new physical symptom; 3) provide a way to record and communicate information that doctors want to know; and 4) provide home care tips for common medical conditions in persons with dementia.