People throughout the UK speak out with one voice for dementia

IMMEDIATE RELEASE
24 MARCH 2006
To: News/Health/Community Editors

On 23rd March 2006, around 50 people with dementia from England, Scotland and Wales attended the first UK Convention of people with dementia, held in Newcastle upon Tyne.

The event was run by people with dementia and had four themes at its core: better services, inclusion, involvement and empowerment.

Presentations were given by three action groups, The Autonomy, Choice and Education group (ACE) from North Wales, The People Relying on People group (PROP) from Doncaster and the Scottish Dementia Working Group (SDWG).

James McKillop, Chairman of the Scottish Dementia Working Group who has a diagnosis of vascular dementia says,

“The SDGW exists because we want to be heard, to support each other, to get better services, and to challenge attitudes to dementia. We have been working hard to campaign and raise awareness of dementia over the last few yeas, which has included meetings with Scottish Minsters and lobbying the Scottish Parliament.”

He continues ”The UK Convention not only allows us to share our experiences with other dementia groups, but also learn from them about how we can get our voices heard and maintain the independence and dignity of people with dementia.”

Delegates at the conference produced a set of action points about how to improve the lives of people with dementia:

• Getting the message about Alzheimer’s over to school children
• Building up a strong UK e-mail forum for people with dementia
• Extending the availability of Help cards for people with dementia
• More support immediately after diagnosis
• Positive portrayals of dementia
• More groups run by people with dementia
• Spreading the word about success stories
• Lobbying Government for more research funding

The overwhelming message from the delegates was that people with dementia can speak for themselves and want to make their voices heard.

A spokesperson from the action group ACE stated, “I can honestly say that I am proud to have Alzheimer’s, and joining ACE has given me laughter and unconditional friendship…Alzheimer’s is a life sentence not a death sentence.”

James McKillop, Chairman of the Scottish Dementia Working Group who co-hosted the conference alongside Peter Ashley member of the Living with Dementia Group says, “We are delighted that the conference has been such a success and will be looking at ways to work towards a repeat event in the future. We want to ensure that many more people with dementia are give the chance to experience what can be achieved if we work together to make change happen throughout the country.”

Please give our Freephone 24hr Dementia Helpline telephone number: 0808 808 3000 and our website address: www.alzscot.org at the end of articles.

Contact details:
Sarah Bromley, PR & Marketing Manager, tel 0131 243 1453, mob 07966 458 869, sbromley@alzscot.org

Notes for editor:
The UK Convention was funded by Dementia North, in large part through a grant from the Department of Health. It was also supported by the Alzheimer’s Society: Living with Dementia Project and the Scottish Dementia Working Group.

Dementia affects approximately 63,000 people in Scotland.
Alzheimer’s disease is the main form of dementia. The second most common is vascular dementia. As yet there is no cure.

Alzheimer Scotland is Scotland’s foremost voluntary organisation working for people with dementia and their carers. It:

• speaks out for the rights and concerns of people with dementia and their carers;
• operates services on over 60 sites throughout Scotland providing practical services such as day, evening and weekend centres, home care and befriending and carers' support services;
• provides the 24 hour national freephone Dementia Helpline (0808 808 3000);
• provides the website www.alzscot.org;
• supports a network of over 40 carers' support groups;
• provides information to carers, professionals and people with dementia;
• publishes leaflets, booklets, reports and a quarterly newsletter keeping carers and professionals up-to-date
• has a research programme.