Toby Williamson, Head of Development and Later Life at the Mental Health Foundation, explains more about a project showing how people with dementia can take an active role in influencing services and society.
In
August, the Mental Health Founda- tion, a UK research and development
charity, together with Innovations in De- mentia (a community interest company) and the Alzheimer’s Society, launched the Dementia Engagement and Empowerment Project (DEEP).
The project is being led by the Mental Health Foundation and is funded by the Jo- seph Rowntree Foundation (JRF). The first project of its kind, DEEP aims to identify and map out groups, projects and activities throughout the UK that are led by people diagnosed with dementia to influence the services and policies that affect them.
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 involve- ment of people with dementia in develop- ing the policies and services that affect them can greatly improve outcomes for the people concerned. We believe that by mapping out these existing initiatives led by or actively involving people diagnosed with dementia, individuals will have a real chance to further influence policy and the services they receive, actively change the public’s perception of dementia and ulti- mately gain greater control of their own lives.
A steering group involving members from the four collaborating organisations is guiding the project, which is also being in- formed by an advisory group of people with dementia, convened to ensure the project remains relevant to their views and needs.
Further to identifying and mapping out ex- isting dementia initiatives throughout the UK, DEEP aims to investigate the ways in which people with dementia are currently engaged in influencing the issues that af- fect their lives, and explore the approaches and structures through which they can most effectively do so in the future.
The project will furthermore help to plan a process to support the development of an independent UK-wide network of demen-
100 | national health executive Sep/Oct 11
tia initiatives, should those involved with DEEP feel that it would be advantageous.
In order to achieve these aims, we are call- ing on people living with dementia who are leading or actively involved in these initia- tives to take part in the project by complet- ing the DEEP survey online (
www.mental-
health.org.uk/deep) before 31st October. The partnership is also currently asking key organisations, groups, advocates, sup- porting staff, and family carers who have direct engagement with people with de- mentia to complete the survey to provide further information about how dementia initiatives of this nature operate.
We will then use the information gathered from the survey to identify and map out groups, projects and activities that are led by or that actively involve people with de- mentia, enabling us to create the first ever map of dementia initiatives throughout the UK. The information collected from the survey will also be used to identify what is working with current dementia initiatives and the areas that still need to be devel- oped.
The partnership will then support people with dementia who are involved with DEEP to organise a one-day national event at the
end of 2011 where the initial findings from the mapping exercise will be revealed and examples of successful initiatives will be showcased. We will also begin to discuss and plan the ways that this work can be taken forward to support the development of a UK-wide network of initiatives led by or actively involving people with dementia.
Following on from the national event, the JRF will produce a report which will in- clude a brief summary of the proceedings from the event and the ways in which peo- ple living with dementia and the organisa- tions involved in DEEP could work togeth- er to support further development of an in- dependent UK-wide network of initiatives.
The report will also outline the mapping exercise, together with the process of ac- tively involving people with dementia in the project itself. In addition, a DVD will be produced featuring people living with de- mentia’s experiences of dementia initiatives and footage from the national event.
Toby Williamson FOR MORE INFORMATION Visit
www.tinyurl.com/MHF-DEEP
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