Life-prolonging treatments for end-stage demented patients are costly and of questionable value. Because most elderly individuals have not made directives in advance, decisions concerning their health care are made by surrogates, usually close family members. Currently, there are no standard methods for educating these surrogates concerning health care options and assisting them in decision making. The Pilot will determine the impacts of a structured intervention with families, focusing on the decision-making process of surrogates, distress to caregivers/families, and several outcome measures (e.g., clinical course, survival, and use of health care resources). The sample consists of 97 patients of Cohort 1 with severe Alzheimer's disease (AD), who have been followed in our Alzheimer's Disease Research Center (ADRC) for the past ten years, and their caregivers. The neurological, cognitive, physical, and functional status of patients will be documented, and we will analyze the effects, over the previous six months, of five activities: hospitalization; use of antibiotics; artificial feeding and hydration; resuscitation; and the use of diagnostic tests. The impacts of interventions on the emotional health and decisions of caregivers will be elicited through the use of mailed questionnaires. Caregivers will be assigned randomly to an educational group or a control group. The forum of the educational group will be two sessions of counselling concerning the rationale for specific interventions; control caregivers will not participate in this process. Six months later, we will assess the efficacies of the sessions on several parameters that focus on decision making in health care and benefits/feedback for surrogates, caregivers, and patients. We believe the study of this relatively neglected area may help us to design more effective strategies for dealing with issues commonly encountered in this population of elderly individuals.
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