MEDICAL GOALS IN DEMENTIA: ETHICS & QUALITY OF LIFE

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The enormous international scope of the problem of dementia combined with exciting discoveries in neurosciences is leading to new hope and urgency in the treatment of Alzheimer's disease and related conditions. Little discussion in either the lay or the academic literature has focused on the practical or conceptual issues surrounding the establishment of therapeutic goals in these disorders. New efforts based in the principal of discourse ethics have begun to explore the kinds of ethical issues and value conflicts faced by patients with dementia, caregivers, and professionals. These approaches have led us to recognize the complexities that are faced in the actual caregiving situation. National and international efforts are underway to design therapies to improve both the cognitive and behavioral symptoms as well as to slow the progression of disease. In this proposal, we will use a variety of methods to explore the establishment of therapeutic goals in dementia. We will expand on our national recognized work to develop focus groups of affected persons, their caregivers, and health care professionals. These focus groups will be complemented by surveys designed to collect data about the attitudes of broader populations of caregivers and patients. In our initial focus groups, improvement of quality of life has consistently emerged as a key concept yet there has been little work done to assess quality of life in intervention studies. We will further develop two instruments designed by Meryl Brod and Rebecca Logsdon and colleagues to assess quality of life. We will examine the relationship between performance on these quality of life instruments and other neuropsychological abilities, including memory, language, executive function and insight. Finally, we will compare methods of establishing utility weights in both patients and caregivers, including time tradeoff, standard gamble and rating scales. The integrating theme behind these efforts is that further exploration of therapeutic goals in dementia is required and that a variety of techniques may allow us to understand better the needs and desires of those families affected by these conditions. In the final years of the proposal we will develop interventions based on the knowledge accumulated during the initial periods of the grant to enhance the decision- making of other caregiving units.