Engagement and activism

Engagement and activism

Chris and Jayne Roberts, Keith Oliver

How can we support people with dementia to set their own priorities about the issues they find important?

People with dementia are increasingly sharing their views about living with dementia. By working together, people can have their views heard at a higher level. People with dementia are setting their own priorities about the issues they find important.

People with dementia have been involved in all aspects of the Dementia Without Walls programme.

The Dementia Engagement and Empowerment Project (DEEP) brings together groups of people with dementia from across the UK. DEEP supports these groups to try to change services and policies that affect the lives of people with dementia.
For more information go to the DEEP website: www.dementiavoices.org.uk

Dementia activists are starting to make a real impact – for more information download ‘Making an impact together‘ below.

Dementia Diaries is a national series of audio diaries that document the day-to-day lives of people living with dementia.
For more information go the Dementia Diaries website: www.onourradar.org/dementia/ 



  • Making an Impact Together

    This guide is written by and with several groups which are members of the DEEP network, with the aim of helping other people with dementia in influencing and activism groups. It offers hints, tips and suggestions based on their experience of trying to make change happen. The booklet aims to be a helpful resource for other groups in DEEP (or indeed other dementia activism groups), in the UK and possibly beyond. It is written by and with people with dementia, for people with dementia… and should also be useful for group facilitators/supporters

  • Dementia without Walls – reflections from people with dementia on how people with dementia have been involved

    This paper brings together the thoughts of ten of the many people with dementia who were involved in the work of Dementia Without Walls in different ways.


  • Developing a national user movement of people with dementia

    Although the voices of people with dementia are increasingly heard, the user movement is still in its infancy. By connecting local groups and individual activists through a national network (DEEP) that engages and empowers people with dementia, people are beginning to work together to set priorities about dementia and to shape political agendas

  • A stronger collective voice for people with dementia

    Can groups provide a stronger collective voice for people with dementia?

    A growing number of people with dementia in the UK are becoming actively involved in groups to try to influence services and policies affecting people with dementia. The Dementia Engagement & Empowerment Project (DEEP) was a one-year investigation aiming to highlight groups and projects involving people with dementia. The report offers specific ways forward for organisations wishing to engage with people with dementia.

  • Perspectives on ageing with dementia

    This Perspectives paper explores the views and experiences of people living with dementia. Dot Weaks spoke to key group members about the formation, development, challenges and benefits of the Scottish Dementia Working Group (SDWG) over the past ten years.


  • The Impact of Dementia Activism

    A film made as part of the IDA project (Impact of Dementia Activism), a collaboration between the University of Edinburgh and Innovations in Dementia CIC. People with dementia from groups in the DEEP network including SURF, East Kent Forget me Nots, York Minds and Voices and EDUCATE talk about their experiences of dementia activism.

  • Window of Opportunity

    SURF (Service User Reference Forum) are a group in Liverpool who meet regularly to enable people living with dementia to work together with health and social care commissioners, clinicians and others to influence policy and practice.

    In this film Tommy Dunne and Gina Shaw describe the achievements of the group and their ambitions to transform Liverpool into a city that enables people living with dementia to live full and active lives independently for as long as possible

  • Day in the Life of a Dementia Campaigner: Trevor Jarvis

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Philly describes a project to collate learning from some of the groups in the DEEP network.