The patient perspective has been largely ignored in studies of Alzheimer's disease. The person with dementia is often relegated to the status of object rather than legitimate contributor to the research process and much can be gained from a systematic study of patients' views regarding their illness and care. We examine the status of dementia patients in three research areas and identify research challenges and opportunities that may substantially increase our understanding of dementia.

This study examined the relationship between patients' cognitive status, deficit awareness, medication management skills, and actual medication adherence. Twenty-seven persons with Alzheimer's disease and 20 healthy controls were evaluated for their predicted and objective performance on tasks related to medication management. Caregivers were also evaluated for their prediction of the care recipient's management abilities. A pill count was taken at the initial interview and 30 days later. MMSE and deficit awareness were related to amount of help received from a family member, suggesting that caregivers tend to accurately assess their relatives' medication management abilities. Adherence rates were acceptable, but some intervention strategies selected by caregivers were not effective in assuring adequate adherence. Additional study is needed to determine the effectiveness of various strategies adopted by informal caregivers.

This study examined the relationship between driving behaviors and awareness of deficit in patients with Alzheimer's disease (AD). Fifteen mildly impaired AD patients and 15 healthy elderly controls with valid drivers' licenses were administered a series of questionnaires concerning daily functioning and driving performance, and all 30 subjects were evaluated on a standardized road test. Self-report and caregiver/informant responses were compared with determine levels of discrepancy in ratings, while comparisons of AD and healthy elderly controls revealed group differences. Actual driving performance was considered the standard by which to determine accuracy of perceptions. Drivers with AD were rated as significantly worse than healthy elderly drivers on nine of 10 driving behaviors by an independent evaluator. AD patients' self-reports of driving ability were significantly better than the evaluator's ratings on seven of the 10 items, whereas the healthy elderly drivers rated themselves better than did the evaluator on one item. Although caregivers were likely to acknowledge a general concern with their AD patients' driving, they underreported specific driving problems when their ratings were compared with those of an independent evaluator. These findings have implications for the development of caregiver-based modifications of driving behavior.

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