DEEP: the engagement, involvement and empowerment of people with dementia in collective influencing

Abstract

Purpose

The purpose of this paper is to discuss the mapping processes and lessons learned in a project to scope the user involvement activity of groups of people with dementia across the UK.

Design/methodology/approach

Data was gathered using a mapping questionnaire designed with help from people with dementia, in‐depth interviews and through a filming process at two national events. A total of 32 groups completed the main questionnaire and five groups were interviewed.

Findings

The collective voice of people with dementia is at a relatively early stage. Groups are at different stages on their journeys and many (completely understandably) prioritise peer support, and local rather than national action. But user‐led groups are growing in number and confidence. They ask for support in capacity‐building, networking and learning from each other so they can increase their influence over attitudes, policy and services.

Research limitations/implications

The paper relies on self reports from groups the authors were able to identify.

Originality/value

Research that looks at the mechanisms that support the involvement of people with dementia is still in its infancy. This paper combines data and findings from a wide range of groups to provide recommendations about how to improve the involvement of people with dementia.

Citation

Litherland, R. and Williamson, T. (2013), "DEEP: the engagement, involvement and empowerment of people with dementia in collective influencing", Working with Older People, Vol. 17 No. 2, pp. 65-73. https://doi.org/10.1108/13663661311325481