Leading dementia organisations launch pioneering project to increase the involvement of people with dementia in service and policy development across the UK

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The Mental Health Foundation today leads the collaboration of three organisations that work in the area of dementia in launching the Dementia Engagement and Empowerment Project (DEEP). DEEP is a ground-breaking project aiming to identify and map out groups, projects and activities across the UK that are led by people diagnosed with dementia to influence the services and policies that affect them.

 11 August 2011

The aim is to investigate the ways in which people with dementia are currently engaged in influencing the issues that affect their lives, and explore the approaches and structures through which they can most effectively do so into the future. The partnership is calling for people living with dementia who are actively involved in such initiatives, their families, carers and advocates, to take part in this project by completing the DEEP survey from today.

Toby Williamson, Head of Development and Later Life at the Mental Health Foundation said:


“Many people who have been diagnosed with dementia have been side-lined in society due to the nature of the condition they live with and the commonly held views about what they are capable of doing. We know that direct engagement and involvement of people with illness and disabilities in developing the policies and services that affect them can greatly improve outcomes for the people concerned, and we also know that many groups of people with dementia are already running successful initiatives. By mapping out these existing initiatives led by or actively involving people diagnosed with dementia, individuals have a real chance to further influence policy and the services they receive, actively change the public’s perception of dementia and ultimately gain greater control of their own lives.”


DEEP is led by the Mental Health Foundation, in collaboration with Innovations in Dementia and the Alzheimer’s Society, and is funded by the Joseph Rowntree Foundation. A steering group involving all four organisations will guide the project. DEEP will also be informed by an advisory group of people with dementia, convened to ensure the project remains relevant to their views and needs.


To achieve the aims of the 10-month project, the following three-stage programme will be followed:


  1. Starting from today, key organisations, groups, advocates, supporting staff, and family carers who have direct engagement with people with dementia are invited to complete a survey to provide information about how their dementia initiatives operate. Those contacted will be encouraged to cascade the survey on to other individuals and organisations that may be able to provide information. The survey runs until the 31 October and can be completed online or downloaded from www.mentalhealth.org.uk/deep.
  2. Information gathered from the survey will be used to publicise the various initiatives that are taking place that actively involve people with dementia, and will identify what works well and the areas that still need to be developed.
  3. The Mental Health Foundation, Innovations in Dementia and the Alzheimer’s Society will then support people with dementia who are involved with DEEP to organise a national event at the end of 2011 where the findings from the initial mapping stage will be revealed and examples of successful initiatives will be showcased. Planning will also commence on ways to take this work forward to support the development of a UK-wide network of dementia initiatives.


At the conclusion of the project, the Joseph Rowntree Foundation will produce a report to summarise the DEEP project processes and findings, along with a DVD featuring people living with dementia’s experiences of dementia initiatives and footage from the national event.


For further information, including the DEEP survey, please visit www.mentalhealth.org.uk/deep.

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