Dementia awareness in the community

ContactHelen Single, Long Term Conditions Commissioning Manager – Disease Management Programmes, NHS Berkshire West
Telephone0118 982 2701
Emailhelen.single@berkshire.nhs.uk
Address55-57 Bath Road, Reading, RG30 2BA

This project aims to build on the individual support available locally and take it one step further by creating a more inclusive community across West Berkshire so that people with dementia feel they can continue to enjoy life, live as independently as possible and be part of the community.

People with dementia and their carers have told us that they want to feel safe in getting around their area and feel comfortable in using shops and leisure facilities.  This project will help public facing organisations to understand the needs of people with dementia, how it can affect their behaviour and what changes they could make to improve the customer experience.

‘I thought I would never play golf once I was diagnosed with dementia, now I am still able to enjoy my real love’, commented a person in Reading who can still enjoy his interest thanks to the support of a volunteer from the Alzheimer’s Society.

The project would assist in building dementia-friendly communities from two different perspectives – top down and bottom up:

  1. The development of a dementia declaration as outlined by the Dementia Action Alliance in each unitary authority area which would be signed by major employers, the council and the voluntary sector.  The declaration would stem from work with people with dementia and their carers to establish what a local dementia- friendly community would look like. It would commit those who sign it to review and change the activities of their organization in line with the declaration.
  2. Inter-generational working with schools, colleges and youth groups in partnership with people affected by dementia and their carers.

Based initially on follow up meetings with existing groups, consultation would then expand to work on a more individual level with people with dementia and their carers, using the Innovations in Dementia Toolkit. As well as the work of the Dementia Action Alliance it would also draw upon the Ageing Well programme as used in Hampshire. The development of action plans as the result of the declaration will address awareness of dementia amongst organisations and their employees, how the work place might be adapted for people with dementia, and how public-facing services might better provide for people with dementia and their carers. A particular scheme developed for individuals with learning disabilities in two of the Unitaries – Safer Places – will be adapted to confirm membership of the declaration. This scheme identifies shops that are happy to assist a person with a learning disability if they feel distressed or otherwise unhappy. The scheme has been quoted as best practice by the DoH in its safeguarding material.

On a practical level, action plans could address matters such as the effectiveness of signage; what “landmarks” might be placed around a building to help navigation; lighting and the impact mirrors in lifts have on those affected by dementia.

The project will utilise outreach workers to identify major stakeholders, work together in formulating a declaration describing what a dementia friendly-community might look like in their area, and then enlist commitment from local organisations. Initially this would focus on organisations identified by individuals with dementia and their carers but would over time fan out to encompass other major players as the Alliance develops. This may take longer than the initial twelve month period.

The inter-generational aspect of the project would address awareness of dementia amongst young people and help reduce from an early age the fear and stigma associated with the disease. The project would involve community development workers working with individuals affected by dementia, carers and local support groups in developing dementia awareness workshops appropriate for young people in school, college and youth settings. In the three unitary authorities six schools have expressed an interest in taking part and this would build upon work already done by the Alzheimer’s Society in facilitating cross generational services.

Both strands will inform the early discussions with people with dementia and their carers who will be involved as they wish in then further developing any work streams. This could include the development of a local Dementia Alliance.

Deliverables

It is expected that this project would take place over 12 months.

  • October – November 2012.  Establishment of posts and initial publicity. Discussions with Safer Places Worker re building on this work in terms of dementia.
  • November – December 2012. Workers have more in depth discussions with individuals with dementia and carers, building on the previous discussions. Volunteers identified to take forward one or both of the two strands of the project.
  • January 2013 onwards. Recruitment to the Dementia Alliance. Discussion with Chambers of Commerce re ongoing funding. Discussion with first tranche of businesses/organisations identified as a priority. Opening of discussion with Schools, Colleges and Youth Groups. Publicity.
  • February – April 2013. Development of workshop/drama material for presentation to young people. First businesses showing the dementia friendly logo (as developed by the consultation groups). Evaluation tools developed. More publicity.
  • May 2013 onwards. Presentation of workshop/theatre material to young people. Further recruitment to Alliance.
  • June 2013 onwards. Survey Questions and survey process developed and piloted. Feedback then sought in a variety of ways – individual or group discussion; written questionnaire. Publicity based on the outcome of this consultation.
  • By October 2013. Project written up.

Anticipated outcomes

  • Giving a stronger voice to existing support networks such as the dementia cafes in each Unitary and Al’s café – a peer support group for individuals with young onset dementia plus the various carers support groups.
  • Enabling individuals with dementia and their carers to help develop and deliver workshops to schools and colleges in their locality.
  • Identify how the local infrastructure and organisations help or fail to contribute to a dementia friendly community.
  • A scheme which will identify shops and businesses that are sympathetic to people with dementia.
  • Empower individuals with dementia in a range of ways – awareness raising in their local communities; lobbying for further dementia friendly developments; giving talks to groups or media; accessing local amenities either individually or with support. In Reading this would apply particularly to the Black and Ethnic minority community.
  • A greater understanding of the needs of individual with dementia in the  service sector such that they are encouraged and better enabled to access those services.
  • Changing how services respond to individuals with dementia and their carers will enable them to lead a more fulfilling and relaxed existence – and so remain for longer in their own homes in their local community.

Progress update

The council has commissioned an external training provider to co-ordinate and provide dementia awareness training throughout the local community; initially focusing on retail and transport providers. It is anticipated that this activity will begin in October 2013.

If the training is successful, this model could be rolled out throughout the community and throughout other LA areas.