Living with Dementia Programme

People with dementia have become increasingly involved in the work of the Alzheimer's Society since 2000. Through a national programme called 'Living with Dementia', people with dementia have been sharing their experiences and knowledge, and raising awareness of dementia at local and national levels.

This contribution is crucial to ensure that the Alzheimer's Society develops appropriate information and support for people with dementia. It ensures that people with dementia can influence the work that the Society carries out on their behalf. On a national level the Living with Dementia programme consults with people with dementia in support of the Alzheimer's Society's work of influencing government policy.

People with dementia in action

People with dementia are involved in the Alzheimer's Society in a variety of ways:

• Giving presentations and raising public awareness.
• Organising the unique UK wide convention of people with dementia.
• Contributing articles and letters to the Living with Dementia monthly magazine.
• Lobbying MPs and commenting on government legislation.
• Being interviewed by national press and television.
• Recruiting and inducting new staff at the Alzheimer's Society.
• Helping to make the website easier to use.
• Running the website for people with dementia: Alzheimer's Forum.
• Developing information for other people with dementia and their families.
• Participating in the national consultative body, the Living with Dementia Working group.

These are just a few examples. There are many opportunities in the Living with Dementia programme. Contact the Living with Dementia team for more information.

Living with Dementia Programme

Various initiatives in the Alzheimer's Society have focused on ways of supporting people living with dementia. Many started as two year pilots in 2001 and 2002, but are now established as a core part of the Alzheimer's Society activity. Examples of current initiatives are listed below:

West Kent Computer project

Started in 2001. It supports people with dementia using computer equipment, to find new ways of communicating, pursuing interests and have fun. More information can be found on the West Kent branch website.

Living with Dementia presentation skills training

For people with dementia. Everyone affected by dementia has their own unique story to tell. Personal experiences and views are a powerful way of raising awareness about dementia, making issues come alive. Training people with dementia to share their experience on TV, press and at meetings, helps to reduce the misunderstanding that surrounds dementia and offers hope to people facing the same situation. Providing key skills enables people to undertake publicity work with confidence.

Helpcard for people with dementia

Developed in 2007 by people with dementia and piloted by people with dementia. The helpcard enables people with dementia to feel confident, not alone and able to ask for help at anytime. It is very useful in emergency situations, and is an effective communication tool that informs others of a person's circumstances. There are three different designs, with three different options for describing particular situations.

National conference for people with dementia

The Alzheimer's Society has hosted three conferences for people with dementia in London, Newcastle and Birmingham. The latter two involved members from the Living with Dementia Working group and the Scottish Dementia Working Group, making them the only UK wide events for people with dementia.

In Newcastle the 'Improving Our Lives' feedback included:

• Get out and enjoy life
• Laugh! Confidence
• Remaining the same person after diagnosis
• Open positive communication
• Speak up - have your voice listened to
• Speak to your MP
• Being denied treatment - medication because of a 'cost cutting' exercise - it's a disgrace
• Set up an email group
• Done more since having dementia - living my life to the full

Have your say

If you have dementia and would like to get involved in the Alzheimer's Society in any way, please contact the Living with Dementia team.

Living with Dementia
Alzheimer's Society
Devon House
58 St Katharine's Way
London E1W 1JX
United Kingdom