Which outcomes matter in Alzheimer disease and who should define them?

The identification of salient outcomes depends on the conceptual map of the disease and its consequences. Early attention focuses on cognition. Cognitive losses can lead to behavioral problems, which may be exacerbated by treatment. Behavioral problems can create a need for supervision. Client functioning can require another form of supervision, cuing. Because Alzheimer disease affects families as much as patients, many outcomes are directed at measures of caregiver burden and stress. A therapeutic model of chronic care management, which aims at producing results at least as good as might be reasonably expected (i.e., slowing decline), creates a different mind set from a compensatory model of care, which seeks primarily to meet dependency needs. In the latter, good care is equivalent to meeting needs without incurring adverse events. Outcomes and locus of decision-making intersect around issues of quality of life. Assumptions about the ability of a patient with Alzheimer 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 serve poorly to convey information about another person's quality of life.