Living with dementia magazine April 2012

Sharing the Alzheimer's disease experience

For Peter Dunlop, talking about his dementia not only gives him a chance to tell his story, but raises awareness and challenges people's preconceptions. He spoke to Luke Bishop about his role in a community outreach project.

When talking about dementia, there is no stronger voice than that of the people living with the condition day in, day out. This ethos is at the heart of the EDUCATE project in Stockport, Greater Manchester, which encourages people with dementia to get involved in awareness-raising in the local community and beyond.

The project was started as an 18-month pilot in 2009, funded by the Department of Health as a group of people in the earlier stages of dementia who would be able to do outreach and education work. It is currently funded by the European Union through its Senior European Network Support programme.

The people involved with the project meet on a monthly basis, giving them a chance to get to know people with dementia in a similar situation and allowing them to choose which talks they would like to do.

People sit in a circle

'Bit of a shock'

Peter Dunlop became involved with the project in 2010, less than a year after he was diagnosed with Alzheimer's disease. Peter had been a consultant in obstetrics and gynaecology, a career that he left following his diagnosis.

He says,

'When I got involved EDUCATE had already been set up and was running and they were looking for people to join up, so I went along to see it.

'When I went I didn't know what to expect and in a way it was a bit of a shock to see some of the people who were much further on in their dementia than I was, but they were doing really well.'

Community awareness

Since the project's launch volunteers have presented at community centres, churches, mosques, synagogues and schools.  This is in addition to using their expertise on living with dementia in training and educating health and social care professionals and students.

Peter is particularly keen on raising awareness in the community and has given presentations to groups such as the Rotary Club.

'I go out and talk to anyone who is interested. For example, the local Rotary Club said they would like me to come and speak to them as several of the people living on my road are members.

'When we talk to these groups a lot of people do not know what to expect. When they find that people with dementia are actually pretty normal but just do funny things like forgetting words, then they realise we are not too different.'

Confidence boost

Mark Perry is the Development Worker for EDUCATE and Stockport Dementia Care Training and says that giving these talks can be a great self-confidence booster for the 20 people with dementia who volunteer for the scheme.

Mark says,

'The strength of EDUCATE is that it enables and empowers people with dementia after their diagnosis to dip their toes in the water and start to communicate with other people, such as professionals, staff at residential homes and students on health and social care courses. It improves their confidence and self-esteem and they realise their communication difficulties aren't barriers and that they can be used to explain how other people can help.'

All about talking

For Peter, telling people about his life with dementia, including its problems and difficulties, also gives him the chance to continue to put his decades of medical experience into practice.

'A lot of people have heard of this terrible word "dementia" and of Alzheimer's disease but they don't know what it actually means. So they are delighted to see people with dementia who are living well.

'Presenting doesn't worry me at all and I think it is useful that people actually find out that there are people who look normal and appear to have a normal life. For me it is all about talking about problems, and that's exactly what I did in medicine.'

If you are a person with dementia living in the Stockport area who is interested in being involved in EDUCATE, you can email stockportdementiacaretraining@nhs.net or call 0161 419 6016.

To find out about Alzheimer's Society peer support and social groups, contact your local office.

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