The perspective of the person with Alzheimer disease: which outcomes matter in early to middle stages of dementia?

As more persons with Alzheimer disease are diagnosed earlier in the disease progression, their perspectives, values, and preferences warrant closer attention from clinicians, service planners and providers, and the research community. Demographic changes suggest that more persons with early-stage Alzheimer disease will be living alone. Their treatment, housing, and service preferences, as well as values about desirable health, mental health, and cognitive and functional outcomes may differ from those of their concerned families. Clinicians and researchers must identify relevant domains of life quality from the perspective of the person with dementia and develop individually sensitive, reliable, and valid instruments to assess, monitor, and evaluate outcomes of care and services.