UCSF

Objective

To 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.

Background

The 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.

Methods

We 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.

Results

We 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.

Discussion

While 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.