Joseph Rowntree Foundation/ Joseph Rowntree Housing Trust

We are two charities, working together for social justice, and sharing trustees and directors. Joseph Rowntree Foundation is an endowed foundation funding a UK-wide research and development programme. Joseph Rowntree Housing Trust is a registered housing association and provider of care services managing around 2,500 homes.

Updated:
10 February 2016
Location:
National
Sectors:
Care
Local Alliances:
Yorkshire & Humber Dementia Action Alliance

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?

Nationally we have a track record of over a decade of research relating to dementia, in addition to our wider JRF programmes of research on older people and disabled people (influential in promoting a social model approach). Our major programme 'Dementia without Walls' (founded on scoping work on Dementia & Society carried out both nationally and in York during 2011-12.) has the following long-term aim - that the UK is a good place for those of us who have dementia to live, and live well.

To achieve this, we need to challenge attitudes, understanding and behaviours around dementia which reinforce stigma, isolation and exclusion. We need to inspire local communities, organisations and businesses to become more aware and understanding of dementia, and more inclusive. And we need to support the collective engagement of people with dementia, inspiring local communities, organisations and businesses to become more aware and understanding of dementia, and more inclusive as their voices are central in this debate.

Our new programme Dementia without Walls includes three main strands:

Strand 1 - Empowering people with dementia

Strand 2 - Dementia-friendly communities

Strand 3 -Thinking differently about dementia

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

While it is recognised that the concept of citizenship has helped other discriminated groups to promote their status to people with power, entitled to the same from life as everyone else, there is as yet no consensus on what this means for people with severe dementia, who will rarely have the self-cognisance to exercise either rights or responsibilities. People with dementia themselves have very low expectations and little awareness of the rights they do have.

The voice of people with dementia is seldom heard (or listened for). This is especially true for those living in an institutional setting (1/3 people with dementia live in care homes and 2/3 of care home residents have dementia). In recent years, some people with dementia have started to group together to campaign and raise awareness. Some celebrities have also come out publicly as carers or as people with dementia. Notwithstanding this, most people with dementia remain effectively voiceless at all levels and in all spheres of life. It is not yet clear how well recent mental capacity legislation is being understood or implemented in practice.

Research is severely under-funded, although the Ministerial Advisory Group on Dementia Research is committed to redressing this. In the practice world, there is a growing number of resources, which is helpful but also confusing. There is a lot of catching up to do in ensuring that practice is evidence-based.

Most policy debate focuses on the statistics, conceptualising dementia as a time-bomb, as a burden to society, as the greatest health and social crisis of the century. The numbers and costs certainly present a great challenge, and we will have to find ways of doing things differently. But the challenge for those committed to human rights for all is also, crucially, about finding ways to help individuals with dementia to live well - and to retain the fullest possible role as citizens in our society.

Finally, we are aware that there is a risk that a focus on dementia - a medical label - may reinforce medicalised and 'deficit' models, rather than challenging the barriers that people with dementia face and share with a wider range of people. We will be alert and questioning about this.

2. Actions

  • DEEP - Dementia Engagement and Empowerment Project

    DEEP found that the collective voice of people with dementia is at a relatively early stage. However user-led groups are growing in number and confidence. They ask for support in capacity-building, networking and learning from each other so they can increase their influence over attitudes, policy and services.

    Status:
    Implementation

    2012 - Third Quarter Update

    The final report (including a Solutions summary, an accessible version and a short film) was launched at the NCAS conference in October 2012.

    2012 - Second Quarter Update

    Our one-year scoping programme Dementia & Society is completed.

  • York Dementia without Walls

    Project led by the consultancy Aesop, also completed. A sounding-board event brought together all those involved in the project to help shape the emerging messages.  There has been huge interest in the project both nationally and locally, especially since it was cited as a case study in the PM's Dementia Challenge report) and in the Alzheimer's Society 2012 report. Our involvement with the PM's Dementia Challenge Champions Group will enable us to share lessons from the York project and to learn from others engaged in similar endeavours. City of York Council has committed to supporting York to becoming a dementia-friendly city.

    Status:
    Implementation

    2012 - Third Quarter Update

    The report, a summary Solutions and an accessible summary was published on 4 October.

    2012 - Second Quarter Update

    During 2011-12 we held dementia round tables in Scotland, Northern Ireland, Wales and Bradford. We have signed up to the national and regional DAAs. We also published ‘Perspectives on Ageing with Dementia’ by the Scottish Dementia Working Group.

  • Perspectives on Ageing with Dementia

    We have signed up to the national and regional DAAs. We also published ‘Perspectives on Ageing with Dementia’ by the Scottish Dementia Working Group.

    Status:
    Delivery

    2012 - Third Quarter Update

    During 2011-12 we held dementia round tables in Scotland, Northern Ireland, Wales and Bradford. 

  • The Unique Ambassador programme

    Launched the Unique Ambassador programme for our own care staff. This includes completion of an accredited dementia care qualification at a higher level than that previously offered to frontline care staff. This has been delivered alongside a co-production project to develop an excellence framework for all our care and support services. This will include gathering the views of people who use our services about what is required to live a good life when you have care and support needs.

    Status:
  • Additional Activities

    In addition to our routine care service and activities, JRHT has:

    • Assisted with  the development and evaluation of Yorkshire Film Archive
    • Successfully piloted dementia awareness workshops for WRVS in Sheffield
    • Produced a leaflet on dementia for front-of-house staff in JRHT
    • Delivered knowledge workshops for North Yorkshire County Council's Dementia Champions project.

     Our internal communications team has been building experience of making our events and reports as accessible as possible to people with dementia.

    Status:
  • Development of Dementia - Friendly communities across the UK

    Our DEEP project continues through a partnership with Innovations in Dementia. Our goal is to influence the development of a collective voice of people with dementia through investing in emerging and established groups.

    We also continue to support the development of dementia-friendly communities across the UK.  We will strive to become a dementia-friendly employer. We are also supporting York to become a dementia-friendly city by:

    • Providing small grants to local groups who wish to play their part in making York or their local community more ‘dementia-friendly’
    • Supporting GeniUS! York with their dementia challenge
    • Involving people with dementia in both of these
    • Hosting a resource hub
    • Providing on the ground support with networking, sharing learning, co-ordinating and building relationships, and community development
    • Using social media and local media
    • Using our relationships with influential local figures
    • Organising a programme of small events and meetings to help share learning
    • Engaging in partnership activities with a range of private, public, community groups.

    We have also commissioned the Alzheimer’s Society to develop their work around dementia-friendly communities in Bradford.  We are recruiting a community development worker to support the work in York and Bradford.

    Status:
    Implementation
  • Short seminar series

    Finally, we propose a short seminar series (or similar) with commissioned papers in 2013 to foster thinking and debate. This may:

    • Explore what lies at the bottom of stigma and discrimination (multi-cultural/cross- cultural/ cross-generational/ different life stages);
    • Stimulate and challenge current thinking on dementia;
    • Consider the use of language and images around dementia, and how these affect attitudes (including self-perception by people with dementia, and their families).
    • Move forward the conceptualisation of dementia within the context of citizenship, human rights, equalities and a social model approach.
    Status:
  • Commisioned the Alzheimer's Society

    We have also commissioned the Alzheimer’s Society to develop their work around dementia-friendly communities in Bradford.  We are recruiting a community development worker to support the work in York and Bradford.

    Status:
    Implementation