• Lauren J Hunt, See J Lee, Krista L Harrison, and Alexander K Smith.
• 1 Department of Physiological Nursing, University of California , San Francisco, San Francisco, California.
• J Palliat Med. 2018 Feb 1; 21 (2): 130-142.

ObjectiveTo provide a guide to researchers selecting a dataset pertinent to the study of palliative care for people with dementia and to aid readers who seek to critically evaluate a secondary analysis study in this domain.BackgroundThe impact of dementia at end-of-life is large and growing. Secondary dataset analysis can play a critical role in advancing research on palliative care for people with dementia.MethodsWe conducted a broad search of a variety of resources to: 1. identity datasets that include information germane to dementia and palliative care research; 2. review relevant applications of secondary dataset analysis in the published literature; and 3. explore potential validity and reliability concerns.ResultsWe synthesize findings regarding: 1. Methodological approaches for determining the presence of dementia; 2. Inclusion and measurement of key palliative care items as they relate to people with dementia; and 3. Sampling and study design issues, including the role and implications of proxy-respondents. We describe and compare a selection of high-value existing datasets relevant to palliative care and dementia research.DiscussionWhile secondary analysis of existing datasets requires consideration of key limitations, it can be a powerful tool for efficiently enhancing knowledge of palliative care needs among people with dementia.

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