Southampton researcher's mission to end stigma of dementia

Dr Ruth Bartlett launches her dementia learning pack with Agnes Houston, left, and Nancy McAdam Dr Ruth Bartlett launches her dementia learning pack with Agnes Houston, left, and Nancy McAdam

A Southampton researcher has embarked on a mission to ditch the stigma surrounding dementia, an illness that affects 18,000 people in Hampshire.

Dr Ruth Bartlett from the University of Southampton has launched a pioneering learning pack that aims to change the way we view and speak about dementia and those diagnosed with it.

In collaboration with an artist from the University of Bradford, Caroline Hick, The No Limits Re-imagining Life with Dementia Educational Resource aims to start conversations about the strengths and hopes of men and women with the condition. With the use of picture postcards bearing slogans and a documentary film – all contributed by dementia activists – it shows that the illness does not mean all doom and gloom and that there is life once the condition has been confirmed.

Funded by the Economic and Social Research Council the free pack is for any individual or group with an interest in the illness or whose role it is to educate others about it.

It covers a range of topics from active citizenship and seeing dementia as a journey to end of life planning. Dr Bartlett said: “The aim of the original study was to challenge, inform and educate a wider community about the strengths and hopes of those living with dementia, including younger people.

“The word patient or sufferer is often used, for example, yet not everyone living with dementia is suffering or feels like a patient.

“Hopefully the stigma around the condition will begin to erode and people will be accept-ed as more of a regular person rather than just someone who is incapable of doing anything. We are providing another story about what it’s like to have dementia, a more hopeful story.

“When someone first receives the diagnosis it is very dramatic, shocking and stressful. However, people eventually get over that shock and settle into the illness and at that point that’s when I think people welcome the chance to be able to grow and develop as a person – they do not want to sit around and do nothing. They want to make the most of their lives before the illness really begins to take effect and by getting people to talk about the positive aspects, hopefully it will change people’s perceptions and allow them to do this.”

The next step for the project is to develop the learning pack for schools to help teachers educate the younger generation about the issues faced by those living with the disease.

 

To receive a pack or to find out more information email Dr Bartlett at R.L.Bartlett@soton.ac.uk.

 

Comments(2)

G-man1 says...
1:15pm Sun 16 Sep 12

My mother has had Alzheimers for the last 5 years- not sure there is any stigma but there is a total lack of understanding of the condition within the population at large and my experience is that sufferers and families of sufferers are treated appallingly. Shockingly, her treatment by the medical profession these past few years has been universally poor.

One of the biggest challenge over the next few years for this country is how we are going to fund treatment for sufferers. My mum deliberately never bought a house when she was younger as she knew the state would take it off her-as they did with my gran. She made the right choice.never built up a pot of savings either but I`ve seen families of sufferers at her care home lose savings that they`d built up over decades. People who've paid taxes for years and years and who've never asked for anything back treated like dirt by the government- Labour and Coalition to be fair

The other thing that concerns me is that retirement ages are going up. My mum was 61 when she was diagnosed- others get it earlier. By the time I get to retire I imagine the expectation will be that I work to 68 or 70 odd. There`s a timebomb waiting to explode in the next couple of decades of people being forced to go to work when they're in the early stages of undiagnosed dementia.

bazzeroz says...
1:53pm Sun 16 Sep 12

Well said G-man1. Instead of wasting time and money on 'stupid' projects give Dementia and Alzheimer's research more profile and funding. A terrible way to go.

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