Buckwalter, Kathleen C.

AbstractTo address the pending public health crisis due to Alzheimer's disease (AD) and related neurodegenerative disorders, the Marian S. Ware Alzheimer Program at the University of Pennsylvania held a meeting entitled “State of the Science Conference on the Advancement of Alzheimer's Diagnosis, Treatment and Care,” on June 21‐22, 2012. The meeting comprised four workgroups focusing on Biomarkers; Clinical Care and Health Services Research; Drug Development; and Health Economics, Policy, and Ethics. The workgroups shared, discussed, and compiled an integrated set of priorities, recommendations, and action plans, which are presented in this article.

This study identified the salient issues of caregiving for family members of persons with dementia using computer-assisted content analysis followed by factor analysis. Differences in responses between caregivers in two treatment groups were also noted. Caregivers (N = 226) were interviewed on three occasions over 12 months. They consistently identified the following themes of caregiving in order of significance: (a) making meaning of the experience; (b) defining the caregiver role; (c) identifying specific caregiving strategies; (d) dealing with change, unpredictability, and vulnerability; (e) evaluating past and future decisions and quality of care; and (f) finding help and support. This representation of the caregiving experience is useful to home care nurses by providing a framework to address issues most important to caregivers and upon which therapeutic interventions can be developed.