The Impact of Dementia Activism

The Impact of Dementia Activism

Making an impact together

The DEEP network (see started nearly five years ago and is now the main UK network linking activist/influencing groups led by people with dementia themselves. Since 2012 the number of such groups in the UK has grown rapidly, from merely a dozen to over 80 at the time of writing (November 2016). The common link between all these disparate groups is that they want to make change through collective action – whether at a local, regional, national or even international level. But how are these groups faring in terms of making an impact together, what have they learnt in the process, and could this experience be useful to others?

These were some of the questions that the IDA project has been trying to answer. IDA (The Impact of Dementia Activism) commenced in January 2016 and Phase 1 will complete by April 2017. Funded through the ESRC’s Impact Grant, IDA is a collaboration between Edinburgh Centre for Research on the Experience of Dementia (ECRED), Innovations in Dementia (iD), the DEEP network and HammondCare.

The project aimed to:

  • collect experiential evidence from DEEP groups themselves on influencing and activism of people with dementia in the UK, and on its impact
  • share this learning with other existing and potential groups in the DEEP network and beyond
  • work with them to speed up and achieve impact, and find ways to capture the impact they are having
  • produce outputs that help other groups to have impact.

Three DEEP groups agreed to work in partnership: EDUCATE Stockport, East Kent Forget Me Nots, and SURF Liverpool. In February 2016 I visited each of the groups to discuss and record their experiences of working collectively and to identify the learning from this process that they felt would be useful to other DEEP groups.

We then held a 24-hour residential event in London in March 2016, with 10 members of the 3 DEEP groups, plus their supporters (family members, group facilitators and members of the project team). The groups discussed how they would like to go forward, and what they felt would be most useful to the DEEP network as a whole. It was agreed that this phase of the project should focus on co-producing four main outputs:

  • a guide on ‘Making an Impact Together’
  • a very simple ‘Impact Tool’, which could be used by DEEP coordinators and facilitators with DEEP groups to collect information and collate and share examples of activism across the network
  • two simple, evidence-based checklists for use in auditing outside and inside spaces
  • a film – compiled from audio diaries – in which a number of people with dementia talk about their perspectives on ‘making an impact’

It was agreed that a priority was to make sure that this learning and these outputs are available to as many people with dementia as possible. The discussions also stressed the impact of the process of activism – the ‘being part of something’ and the links to peer support. Any impact is not just on policy but also on individual people and their experience of living with dementia.

Co-producing the outputs

I subsequently visited each of the groups again, in order to work with them on the agreed outputs. The main one is the guide ‘Making an Impact Together’ which was authored by me with regular reference back to the three groups, and illustrated by Michael Young, husband of one of the group members. It was published as a pdf on three websites (DEEP, Dementia without Walls and ECRED) and hard copies were also circulated to all DEEP groups. In November 2016 the guide was launched by members of the DEEP groups involved at the UK Dementia Congress in Brighton, and also in the same week at the Alzheimer Europe conference in Copenhagen. It was also promoted via social media.

To complement the guide, the Dementia Diaries project produced a 7-minute film The Impact of Dementia Activism’, based on a number of bespoke audio diaries by 7 members of the DEEP groups. They describe how they are trying to have an impact on social policy, practice and attitudes.

For more information see

What next?

Following interest expressed by the team’s Japanese contacts during the course of this project, an adapted Japanese version is now being developed. To be completed by the end of 2016, this will be circulated across Japan to dementia groups and organisations.

Subject to acceptance of the abstract, both versions will be launched at the ADI (Alzheimer’s Disease International) conference in Kyoto in April 2017, as part of a planned symposium. We hope that one or more of the people with dementia who have been involved will be able to be there.

With support from HammondCare’s dementia design team, two design checklists have also been produced in simple, accessible format and language for use by dementia activist groups as they audit buildings and spaces. In Spring 2017 these will be tested and refined with a number of DEEP groups, through observation of their use and usefulness at actual audit exercises. The final lists will then be published and disseminated.

Phase 2 of the project is subject to funding. It aims to collect further evidence on the influencing and activism of people with dementia in the UK, and on its impact, and to share learning across the UK and internationally. This phase will specifically test out the Impact Tool included in the new guide and seek new examples of impact to include in edition 2.


To date the project has illustrated how the development of the collective voice of people with dementia has more than exceeded expectations in both growth and influence.  The guide has been very well received, not only in the UK but also in Japan! It provides evidence both of achievements to date, and also of some of the issues that inevitably arise when people come together to work collectively.  The willingness of the DEEP groups to share their learning around this with each other is impressive, and bodes well for the future of the network.


For more information see

Philly Hare
Philly Hare is Programme Manager at JRF for Dementia without Walls. Throughout 2016 she will be on secondment to Innovations in Dementia. Philly is also currently an Exchange Fellow at the University of Edinburgh and Advisor to the Life Changes Trust.

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