Mental Health Foundation

The Mental Health Foundation is a research and development charity so our role is to carry out research into how better outcomes can be delivered for people with dementia and their carers, and to disseminate these as practical solutions and recommendations for policy makers, service providers and practitioners.

10 February 2016
Communication, Care, Health, Voluntary Sector

1. Action Plan

1. The National Dementia Declaration lists a number of outcomes that we are seeking to achieve for people with dementia and their carers. How would you describe your organisation’s role in delivering better outcomes for people with dementia and their carers?

The Mental Health Foundation is a research and development charity so our role is to carry out research into how better outcomes can be delivered for people with dementia and their carers, and to disseminate these as practical solutions and recommendations for policy makers, service providers and practitioners. We do this through the reports and guidance we produce, our policy and public affairs work and responses to Government consultations, and the information we provide to print and broadcast media. Recent examples of this have been producing the reports Dementia - Out of the shadows and My name is not dementia for the Alzheimer's Society.

We also carry out service improvement projects in collaboration with service providers to develop new and innovative ways of delivering dementia care. These have included Dementia Choices, a project about personalisation and dementia, and Home Improvements, a grant-making scheme for projects aimed at benefiting people with dementia living in care homes. Maintaining the well being of people with dementia and supporting their involvement to retain retaining as much control as possible over their lives, as well as being able to influence policies and services that affect their lives are also areas we consider to be important in both what we do and how we do it.

We are currently working with Innovations in Dementia to deliver the Dementia Engagement & Empowerment Project (DEEP). We are also working with Housing 21 on a project involving self help groups for people with dementia living in extra care housing schemes. We also produce information in the form of booklets and via our website about dementia aimed at these groups.

 2. What are the challenges to delivering these outcomes from the perspective of your organisation?

 The main challenges from our perspective are the current public spending restraints, especially among local authorities, and limited resources for research (especially when compared to other illnesses and diseases), at a time when the numbers of people with dementia are increasing rapidly. We have concerns that these restraints will have a detrimental impact on the ability to properly implement national dementia policies. It would also be helpful if there was greater clarity about the status of the national dementia strategy in relation to the Prime Minister’s challenge on dementia.

We also believe there is an inadequate public and sometimes professional understanding of dementia issues, and this is exacerbated by the stigma attached to a diagnosis of dementia.

2. Actions

  • People with dementia as active citizens

    Support the on-going involvement of people with dementia in being able to be active and respected participants in their communities, influence services and policies affecting their lives, and having opportunities to be involved directly in the work of the Mental Health Foundation.


    2014 - First Quarter Update

    We continue to work closely with Innovations in Dementia and the JRF to support DEEP, including providing specialist communications and fund raising advice, and assisting with events and the small grants programme.

    2012 - Fourth Quarter Update

    Dementia Engagement and Empowerment Project (DEEP).

    The report on the Dementia Engagement & Empowerment Project (DEEP) was published on the 24 October. This is available on the Joseph Rowntree Foundation (JRF) website. The report describes the findings from the first UK wide survey of groups actively involving or led by people with dementia that have been influencing services and policies affecting the lives of people with dementia. The report (and a Solutions summary) can be downloaded for free at:

    DEEP produced the films showing people with dementia from across the UK talking about their involvement in activities and groups that are influencing services and policies. The films were made at two national events held in 2012 that were part of the project. As well as the films there is an Appendix to the main report which includes a literature review, more detailed information containing the responses from the survey, and transcripts of interviews with groups of people with dementia. These can be seen or downloaded for free at:

    As part of the new Dementia Without Walls programme, JRF have decided to provide additional and continuing support to DEEP over the next three years. The next phase of DEEP will provide support to existing and new groups of people with dementia. The project will be developed in collaboration with people with dementia, and will include opportunities for sharing resources and ideas, building the capacity of groups and setting up networking opportunities between groups. The project is led by Innovations in Dementia in partnership with the Mental Health Foundation, and supported by the Alzheimer’s Society.

    For more information about DEEP please contact Rachael Litherland, email or telephone 01392 420076.

    People with dementia also participate in advisory groups for other projects we have, such as the dementia self help project.

  • Dementia - what is truth? Inquiry. Exploring the real experience of people with more severe dementia

    An 18 month long project staring in January 2014 that will investigate ways of reframing our understanding of some of the most challenging and distressing symptoms of dementia – confusion, disorientation, and “delusions” – usually experienced by people with more advanced dementia. Funded by the JRF.

    Initial Scoping
  • Positive risk taking and dementia friendly communities.

    The Mental Health Foundation was commissioned by the Joseph Rowntree Foundation (JRF)  to undertake a brief consultation with key experts and stakeholders, including people living with dementia, to produce a‘think piece’ for the JRF that will be published later in 2014 by JRF.

  • Mapping dementia friendly communities across Europe

    The European Foundations' Initiative on Dementia (EFID) have commissioned the Mental Health Foundation to map dementia friendly commmunites and similar initiatives across Europe. A report and guide will be produced in 2015.

  • Dementia, rights and the social model of disability

    Following extensive consultation with people with dementia, carers, professionals, disability activists and experts, legal professionals, and opinion formers the Mental Health Foundation, supported by Innovations in Dementia, are producing a policy discussion paper on this topic for policy makers and key influencers. It will stress the relevance of a human rights based approach, the social model of disability, and relevant legalisation (e.g. the Equality Act, Mental Capacity Act) to the lives of people with dementia, services that support them, and dementia friendly communities, and how dementia activists, like other disability activists, can be potential agents of change. The paper will be available in the summer of 2015. The project is funded by the Joseph Rowntree Foundation.

    Being implemented
  • Mental Capacity Act training for dementia care staff

    The Mental Health Foundation is working in partnership with Support in Dementia (SiD) who are carrying out Mental Capacity Act training for dementia care staff. SiD is aiming to train up to 600 staff in Sussex and Essex and the Mental Health Foundation will evaluate the impact of the training. The project is due to complete by June 2015. Funded by the Department of Health.