Identifying and Implementing Best Practices for Including Persons Living With Dementia in Research

TL;DR

This paper outlines best practices for including people with dementia in research, ensuring their voices are heard in healthcare studies.

Contribution

The paper introduces and pilots an inclusive practice guide for engaging persons living with dementia in research.

Findings

The interview guide was found acceptable by participants and generated robust responses.

Participants provided suggestions for improving the guide without experiencing distress.

The guide was successfully translated into Spanish and tested in multiple locations.

Abstract

Including persons living with dementia (PLwD) in research is increasingly a priority for professional organizations (e.g., Gerontological Society of America) and national research strategies (e.g., National Plan to Address Alzheimer’s). However, PLwD have unique barriers to effective communication, including memory impairment, word-finding difficulty, and executive dysfunction, limiting their participation. Further, few research studies explicitly describe practices for facilitating the participation of PLwD in research, henceforth termed “inclusive practices”. Our aim was to develop and pilot an inclusive practice guide that allowed PLwD to share their perspectives in a study on the barriers and enablers to interpersonal communication in triadic healthcare visits (i.e., PLwD, care partner, healthcare provider). We identified best practices for including PLwD in research from the literature, which directed our interview guide and training manual development. We then mapped the interview questions onto the Capability-Opportunity-Motivation model of Behavior (COM-B) theoretical framework to understand interpersonal communication and the component(s) to target for change. We also translated the guide into Spanish. Using purposive sampling to identify participants who could provide feedback on the interview guide, we pilot-tested the interview guide with seven participants living with dementia, five in English (in Lebanon, New Hampshire) and two in Spanish (in New York City, New York). Participants found the interview guide acceptable and provided suggestions for improvement. The final interview guide generated robust responses to the research question without causing distress. Explicitly incorporating inclusive practices for including PLwD research is an essential step in soliciting the important perspectives of PLwD.