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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.

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.

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.

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

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.

The purpose of this paper is to describe the key elements of a major work programme on dementia, and to reflect on the practical learning derived.

The paper describes the whole range of programme activity, including research projects, think-pieces, action research, demonstrations, evaluations and production of resources such as films, infographics, case studies, practice guides and positive image galleries.

The active, meaningful engagement of people with dementia and their families is fundamental. Communities must engage with, and achieve equity for, all people with dementia, whatever their circumstances. Practical barriers to inclusion must be addressed if normal lives are to be continued. The human rights of people with dementia and carers must be recognised and promoted. Local grassroots community activity is the bedrock of dementia friendly communities – but this activity must be supported by strong strategic planning, commissioning and leadership. There is no template – each community must develop its own approach.

The paper highlights many examples of good practice which can inform the work of commissioners and practitioners, as well as wider communities. These focus particularly on good practice in engagement and involvement; and the co-production of dementia friendly communities with people with dementia.

The programme highlights the importance of social barriers to the inclusion of people with dementia in their communities, and gives examples of communities which have tried to overcome these through attitudinal and environmental change.

Joseph Rowntree Foundation’s programme is highly innovative and well-regarded.

Recovery Colleges were developed to support the recovery of people with mental health difficulties through courses co-produced by professionals and people with lived experience. This study aims to examine the use of Recovery Colleges to support people with dementia.

A survey was circulated to UK Recovery College and memory service staff, exploring provision, delivery and attendance of dementia courses. Open responses provided insight into participant views about recovery in post-diagnostic support and the practicalities of running dementia courses.

A total of 51 Recovery College staff and 210 memory service staff completed the survey. Twelve Recovery College dementia courses were identified across the UK. Three categories emerged from the qualitative data: post-diagnostic support, recovery in the context of dementia, challenges and areas of innovation.

This study highlights the benefits and practicalities of running Recovery College courses with people with dementia. Peer-to-peer learning was seen as valuable in post-diagnostic support but opinions were divided about the term recovery in dementia.