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Innovations in Dementia CIC

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Innovative projects - hearing the voice of people with dementia

We have work with various organisations to consult with people with dementia about plans and services.

For example
Camden Council asked all people who live in Camden to give their views on proposals about the future development of Camden care homes. The Council wanted to ensure that people with dementia currently living in their care homes could be involved in the consultation process.

We work with Pictures to Share to ensure the images included in their books were engaging and interesting for people with dementia.

Find out more about our consultancy work.

On this page:


Dementia Engagement and Empowerment Project (DEEP)

Innovations in Dementia is part of a project run by the Mental Health Foundation called DEEP (Dementia Engagement and Empowerment Project).

Over the course of a year we investigated:

  • The ways in which groups of people with dementia across the UK were actively involved in trying to influence policies and services, and
  • Whether these groups of people with dementia were interested in networking with each other.

Some findings from DEEP
DEEP found that:

  • There are only a small number of groups led by, or actively involving, people with dementia that are influencing services and policies.
  • 'Influencing' work includes national lobbying and meeting with government officials, local lobbying of services, media work, training and education, participating in advisory groups, awareness-raising, and speaking at events.
  • Most groups undertook influencing work alongside peer support and social activities, and were local and relatively informal.

The report sets some challenges:

  • For groups involving people with dementia that want to participate in a network.
  • For governments who need to listen to people with dementia.
  • For organisations working with people with dementia who want to support people with dementia to influence policy and practice.
  • And for dementia action alliances, the media, event organisers, trainers and researchers who can all change how they work to make sure that people with dementia are heard.

In February and March 2012 the project held two networking events for people with dementia. One in London and one in Stockport. The aim of these events were to:

  • Celebrate the achievements of people with dementia in influencing policy and practice.
  • Provide an opportunity for people with dementia to meet other people with dementia from across the country to exchange experiences and ideas.
  • Enable people with dementia to discuss the next steps in developing a UK-wide network of people with dementia.

There was also be an opportunity to hear about and discuss the main results from the DEEP questionnaires.

You can:

  • Watch a short film about DEEP, where people with dementia talk about the activities they are involved with.
    Go to the Mental Health Foundation website: www.mentalhealth.org.uk/DEEP
  • Read the reports from the first phase.
    Go to the JRF website: www.jrf.org.uk/publications/stronger-collective-voice

    You can find more information on the Mental Health Foundation website, go to: http://www.mentalhealth.org.uk/deep

    November 2012

    Logos of the Mental Health Foundation, Alzheimer's Society and Innovations in Dementia


    Videos by people with dementia

    Someone with dementia being filmedFilm is an incredibly powerful medium – through film people who are not usually heard can be seen telling their stories in their own words.

    While dementia does have an effect on communication, many people with dementia retain the ability to communicate even if their dementia is quite progressed. Many people with dementia have a story to tell, or something they want to say. Their voices are a powerful tool for challenging stigma and negative stereotypes.

    Our video projects
    We have undertaken two exciting video making projects: one focussed on individuals telling their stories, the other on the importance of support from a 'club' or group of people with dementia.

    Although these films have been made by people who are living with dementia, and are about people who are living with dementia, they are not just about dementia.

    They are about people living their lives positively, with vitality and creativity. They are about people who are still learning, and still growing.
    They show that dementia is life-changing, but not life-ending.

    Download our guide on filmmaking with people with dementia as a PDF file: Telling our stories

    View the films

    Contact us for more information
    Email: steve@innovationsindementia.org.uk. Telephone: 01392 420076
    Innovations in Dementia CIC, PO Box 616, Exeter, EX1 9JB

    December 2011



    Talks and presentations by people with dementia

    Thinking Differently

    Here is a video from the conference Thinking Differently about Dementia in Essex. This conference was organised by Dementia Adventure.

    View a video of June talking about living with dementia
    My voice - my life

    May 2011

    People with dementia at Innovation Live event

    Innovation Live took place at the QEII Conference Centre in London on 12 November 2008. The event was attended by around 500 people from within the NHS and from external organisations interested in
    transforming healthcare.

    The event was jointly run by NESTA and the NHS Institute for Innovation & Improvement. It was the first event of its kind to take an in-depth look at exploring and stimulating innovation in health.

    Among the exhibitors were three people with dementia supported by three care workers from Tresham day care centre. The day centre is run by Housing21 and has been part of a project funded by NESTA.
    The people with dementia were there to tell delegates about the computer project that has been running their day centre this year.

    Each pair has prepared a presentation using PowerPoint. The presentations explained how they used the computers at the day centre.

    Example picture of a baking dayThey showed how they took pictures of activities such as a baking day and trips. They used these pictures to make slide shows or write an article for the day centre newsletter. They also showed how they
    used PowerPoint to create life history books and the internet
    to search for information and pictures of favourite places. They also used the internet to search for music from the past.

    The delegates were very interested to hear from people with dementia about how they used the computers. And the staff and people with dementia enjoyed the day too.

    November 2008

    Penelope gives an ‘inspirational’ talk in London

    Penelope is a ThinkTank volunteer with Innovations in Dementia. She has dementia and she also cared for her mother.

    Penelope has helped us with our project about an information resource of equipment.

    She spoke at the National Telecare Conference in London. She answered questions from the audience as part of a workshop run by Stephen Wey.
    Stephen is an occupational therapist. He also does research at York St John’s University.

    The workshop was about how important it is to include people with dementia in decisions about equipment that might help them.
    The audience included equipment makers and occupational therapists.
    Penelope talked about:

    • How important it is to listen to the views of people with dementia.
    • How difficult it was for her to get information
    • How important dementia training is.

    And most importantly Penelope stressed that:
    “It is vital that we change attitudes towards people with dementia.”

    Penelope certainly changed the attitudes of the conference delegates who heard her speak.
    One member of the audience told us that Penelope had made her look ‘beyond the disease and to see the person’.
    Another person in the audience told Penelope that her talk had been
    inspirational.

    November 2009



    Valuing the contribution of people with dementia

    At Innovations in Dementia, we want people with dementia to be at the heart of everything we do.

    We are drawing up policies around the ways we involve people with dementia in our work. A key issue is how we value the contribution that people make.

    Although we are a social enterprise, we charge for our services. We believe that people with dementia should be rewarded for any work they undertake with us.

    We are asking people for their views round incentives and payments for people with dementia.

    Peter Ashley had Lewy Body dementia. Peter was an associate of Innovations in Dementia.

    He beleived:
    "If we don’t offer payment to people with dementia we are saying that we do not value the voice of people with dementia. I always say that you can have as many professionals in a room as you want but the real expert is the person with the condition. Payment is, at the very least, a gesture of thanks. If we don’t thank people for the work they do we will not encourage more people to get involved and society as a whole will be less well off."


    Contact us

    Innovations in Dementia CIC, PO Box 616, Exeter, EX1 9JB
    Telephone 01392 420076

    Registered as a community interest company No. 06046815.
    Find out more about community interest companies

    © Innovations in dementia CIC 2012
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