Alzheimer’s Society Living with Dementia Working Group
Themes:
- Service users as volunteers
Influencing services Challenging stereotypes People with Alzheimer’s disease are often seen as the recipients of services, yet the Alzheimer’s Society Living with Dementia Working Group has turned this round, involving individuals with Alzheimer’s disease to forms the key consultative body for the Society and external organisations with people with dementia.
The group meets quarterly and has the following aims
- Establish future plans for the Living with Dementia programme
- How and where we can involve more people with dementia
- How to encourage more people with dementia to speak out in local and national media
- Establish national working group priorities
- How to build influence locally in branches and areas
- Influencing the branch guidelines and other policy
- Feedback ideas and experience to the Alzheimer’s Society
- To receive support, advice and information from the living with dementia team
- Taking positive action to challenge the stigma of dementia
- Collectively move the Living with Dementia programme forward to the future
It also helps to
- To help the Alzheimer’s Society achieve its strategic goal:
“To advance recognition and acceptance of the rights of people with dementia and the people who care for them, by influencing the understanding and behaviour of opinion makers, and moving dementia to the top of the political agenda”.
- To provide people with dementia the opportunity to mutually support each other through the working group meetings
- To offer people with dementia the opportunity to discuss aspects of dementia and to suggest speakers who might increase their knowledge.
- To influence the Alzheimer’s Society’s through feedback to the senior management team via the LWD coordinator and development officers.
Members of the group are individuals with experience of dementia who have previous experience of working or volunteering as a member of a group. They join the group for one year, with the possibility of renewal, and attend four forum meetings within that year, and occasional other meetings.
In the last year the group has achieved
Planning and running the second UK Convention for People with Dementia, in cooperation with the Scottish Dementia Working Group, creating a well attended and very successful event.
Working with publications on the redesign of the member’s magazine to reflect the Society’s commitment that “people with dementia will always be at the centre of everything we do.”
Setting up a small Living with Dementia magazine editorial group to ensure standards are upheld.
- Responding to numerous requests for consultations with external organisations such as National Audit Office and Commission for Social Care Inspection.
- Joining the National Dementia Strategy working groups.
- Vast amounts of media and campaigns work both locally and nationally enabling the Society to achieve higher level of public recognition in 2007 than ever before.
- Consultation on the new offices to ensure it meets the needs of people with dementia.
- Commenting on Alzheimer’s Society policy such as the requirement of buddy runners to fundraise when supporting a runner with dementia in a marathon.
- Establishing a new support group for people with dementia in a home county where no resource was present previously.
Overall the working group members, with the support of their careers and staff, are driving a steady impetus to give people with dementia a voice within the Alzheimer’s Society and in the outside world.
This will enable people with dementia to meaningfully shape the policies and services that affect them.
For more information on these opportunities or the Living with Dementia working group please contact:
Clare Taylor
020 7423 3591
clare.taylor@alzheimers.org.uk
