Community Engagement Evidence Synthesis : A final report for Alzheimer’s Society

Abstract

This report presents a review of the evidence that demonstrates where there is robust evidence for community engagement activities, what is important to think about and consider when planning new or revised activities and additionally outcomes that can inform current work and future service development. We wanted to understand, the dominant approaches to promoting community engagement with and awareness of dementia in the UK, the underlying assumptions/theories about how they work and how impact is assessed. The first phase provided an overview of what is known about community engagement activities specifically focussed on dementia. We found these clustered around the following activities: awareness raising to normalise living with dementia, co-ordination and integration of services to be dementia aware and responsive, promoting inclusion in culture and leisure activities to reduce social isolation, environmental adaptation and, digital technology to support orientation and involvement. We found three key motivations for community engagement that all need to be underpinned by awareness and understanding of dementia.  Compassion: ‘we must do something’ driven by concern for the wellbeing of people affected by dementia  Utilitarian: ‘we must do something’ driven by practical cost-benefit or utilitarian analysis  Rights-based: ‘we should not be excluded’ driven by a social justice/disability rights/citizenship based perspective In phase two, we focused on the proposition that Community Engagement that is grounded in a rights based approach is likely to be more effective in achieving the short and long term goals of the inclusion of people with dementia in their local community and wider society. There is good evidence that empowerment approaches work and are the most sustainable. Participation is key, yet we must remember that presence does not necessarily equate to participation and measuring impact needs to account for this, (for example counting who attends an event or service does not tell you about a person’s involvement or if it is an activity they benefit from and want to do).