National and international models of involving people with lived experience in dementia policy, advocacy and research

Abstract

Globally, there is growing recognition of the need to advance approaches to involve people with lived experience of dementia as collaborators in policy, advocacy and research activities. Involvement is viewed as a right by dementia advocates and others, and some organizations have developed mechanisms to support this collaboration, such as through dedicated resources for infrastructure or as a condition of research funding. However, there is limited literature on how national and international organizations support the involvement of people with lived experience of dementia. In this perspective article, we describe different approaches to involving people with lived experience in policy, advocacy and research activities across national and international network contexts. We outline and compare the approaches taken by the Engagement of People with Lived Experience of Dementia program and advisory group (Canadian Consortium on Neurodegeneration in Aging), Alzheimer Society Research Network (Alzheimer’s Society UK), European Working Group of People With Dementia and European Dementia Carers Working Group (Alzheimer Europe), and the Lived Experience Advisory Group (Global Brain Health Institute, Trinity College Dublin). For each example presented, we describe the initiative (e.g., purpose, brief history, structure). We discuss the four initiatives in order to identify common and context-specific barriers and enablers to involvement. We hope that the findings will help others to develop their own initiatives to involve people with lived experience of dementia.

Plain Language Summary

What we studied: We described different approaches to involving people with lived experience in policy, advocacy and research activities across national and international network contexts.

How we studied it: We outlined and compared the approaches taken by the Engagement of People with Lived Experience of Dementia program and advisory group (Canadian Consortium on Neurodegeneration in Aging), Alzheimer Society Research Network (Alzheimer’s Society UK), European Working Group of People With Dementia and European Dementia Carers Working Group (Alzheimer Europe), and the Lived Experience Advisory Group (Global Brain Health Institute, Trinity College Dublin). For each example presented, we described the initiative (e.g., purpose, brief history, structure).

What we found: Common across all of the groups was the imperative to center the voices of people with lived experience of dementia in the activities that impact them, thereby challenging the stigmas associated with dementia and improving the health and quality of life of people living with dementia and their families.

Why it matters: Involving people with lived experience of dementia is essential to ensuring that dementia policy, advocacy and research prioritize the needs of those most impacted. We hope that the findings will help others to develop their own initiatives to involve people with lived experience of dementia.