WHICH OUTCOMES MATTER IN ALZHEIMER-DISEASE AND WHO SHOULD DEFINE THEM

The identification of salient outcomes depends on the conceptual map o f the disease and its consequences. Early attention focuses on cogniti on. Cognitive losses can lead to behavioral problems, which may be exa cerbated by treatment. Behavioral problems can create a need for super vision. Client functioning can require another form of supervision, cu ing. Because Alzheimer disease affects families as much as patients, m any outcomes are directed at measures of caregiver burden and stress. A therapeutic model of chronic care management, which aims at producin g results at least as good as might be reasonably expected (i.e., slow ing decline), creates a different mind set from a compensatory model o f care, which seeks primarily to meet dependency needs. In the latter, good care is equivalent to meeting needs without incurring adverse ev ents. Outcomes and locus of decision-making intersect around issues of quality of life. Assumptions about the ability of a patient with Alzh eimer disease to express positive feelings or to indicate preferences for care need to be explored carefully. Although the use of agents or proxies may be necessary when making decisions about care, proxies ser ve poorly to convey information about another person's quality of life .