Losing Function, Staying Connected: Family Dynamics in Provision of Care for People with Dementia
Podgorski, Carol, King, Deborah A., Generations
The considerable progress that has been made over the past decade toward understanding and advancing diagnostic tools and treatment regimens for Alzheimer's disease and other forms of dementia has undoubtedly shaped the experience of dementia not only for the person with the disease, but for family members as well. The majority of dementia care is provid- ed by families in the community, and there is little dispute that families put forth heroic efforts to keep loved ones safe, comfortable, and in familiar sur- roundings for as long as possible. The past thirty years of research have yielded a compre- hensive depiction of all that is involved in providing dementia care to a family member, as well as both the rewards and emotional burdens of providing that care. Yet we still know very little about such important questions as how family interactional styles and dynamics might influence the outcomes of care, whether relationship patterns vary across the trajectory of the disease, or the extent to which family dynamics serve as moderat- ing or mediating factors in the provision of care and support. For the well-being of patients and families, it is crucial that such questions be addressed, taking into account some particular challenges.
For example, one of the central challenges healthcare and social service providers face when they try to develop a plan for patients and families to follow after a diagnosis of dementia is the degree of variability that exists among individual patients and families. Indeed, variability is one aspect that remains a constant in our current understanding of dementia. For example, origins of the disease, rates of progression, and clinical manifestations are different from person to person. Moreover, people with dementia show a great deal of variation in the symptoms they experience, in their attitudes and adjustment toward the illness, and in experiences that determine quality of life. Similarly, while the emotional and physical tasks associated with caring for someone with dementia are largely universal, families vary in the ways in which they respond to the situation, including how they choose to organize themselves and address the situation.
As the symptoms and care needs of the person with the condition change throughout the course of dementia, family dynamics manifest themselves and are affected in a number of ways.
Family Dynamics in Early-Stage Dementia
Since the FDA approved the first medication for the treatment of Alzheimer's in 1993, the standard of care has become promotion of early diagnosis. The push for early diagnosis, propelled by the belief that available treatments have maximal benefit in the earliest stages of the disease, has led to increased awareness and recognition of dementia symptoms. As a result, people with memory loss and other symptoms that do not yet meet the minimum threshold for a dementia diagnosis are seeking treatment. Proponents of early diagnosis contend that early confirmation of the disease allows the patient and family time to get legal and financial affairs in order and to make plans for future care while the patient is able to express preferences.
Unfortunately, however, the actual needs of patients and family members dealing with early diagnosis have not been well described to date, and the voice of the patient has been largely absent. There is anecdotal evidence that patients and families at this stage may benefit from sharing and comparing their experiences with others. For example, the early-stage support group offered primarily by local chapters of the Alzheimer's Association provides this type of forum. A single published report describing anecdotal and qualitative data from a clinical trial (Logsdon, McCurry, and Teri, 2007) suggested that participation in early-stage support groups improves quality of life for participants and decreases family conflict.
Family Dynamics in Middle-Stage Dementia
The middle stages of dementia are characterized by major changes in memory and other cognitive functions. …