CLACKMANNANSHIRE residents can get involved with international research into dementia, right on their doorstep.
A team from the University of Stirling is hoping to hear from people affected, and their carers, who could help with a five-year research programme, funded by the UK Government and part of the prime minister's challenge on dementia.
The researchers, from the university's Faculty of Social Sciences, are investigating the role neighbourhoods play in supporting and caring for people with dementia and are working in partnership with colleagues from the University of Salford, Manchester, as well as Linköping University in Sweden.
They are looking for men and women from around the central belt and are keen to hear from couples, where one partner has been diagnosed with dementia, those who live alone and have dementia, as well as carers whose spouse or partner is now residing in a care home.
Researcher Dr Kirsty Alexander, who hails from Menstrie, told the Advertiser: “What we are trying to find out is how local communities and neighbourhoods can enable people with dementia to live well.”
The project is part of a broader study, which aims to bring about change by listening to people, and the researchers at Stirling are asking participants to do a series of interviews and activities.
First, Dr Alexander and the team would ask those taking part for a quick tour around their home. Participants are asked to speak about what they like about their residences, if there have been any changes since their diagnosis and if they consent, they are asked to take photographs.
Dr Alexander, 31, explained: “It underlines the importance of capturing visuals; we are using visual methodology to get a better sense of what people like and the changes that have been made.”
Then, there would be a walk around the participant's neighbourhood, when they can tell about the people around them and those who help out.
The researcher added: “It allows us to understand how people actually think about their neighbourhood, what it is, what they enjoy about it, the people that they meet – the informal support networks that they have.
“Even, for example, nipping down to the local shop, having a chat with the people there, for some, that can be key to their experience and enjoyment in the neighbourhood.”
The third activity maps the participant's social network, meaningful people, in a visual form. Dr Alexander said: “We do that to find out what kinds of support there is, [and the extent of], in the neighbourhood.”
After 6-12 months, the researchers, led by principal investigator Dr Richard Ward, would hope to repeat the interviews to see how things have changed.
Dr Alexander continued: “People who take part often enjoy the activities.
“The activities are underlined by the value of participation, having people with dementia, and their carers, actively participate in the project so it is their voices that are heard.
“Some participants have been saying to us that while they have capacity, they want to contribute what they can to raising awareness about dementia, different forms of dementia, and to challenge stigma.”
Charity Alzheimer Scotland is also raising awareness and challenging stigmas, with its Dementia Awareness Week beginning on Monday, May 30.
The charity highlights that dementia is not a natural part of ageing, it is caused by diseases, which lead to changes to the structure and chemistry of the brain.
There are a range of ways to get involved and raise awareness as well as funds, visit alzscot.org/daw2016 for more information.
Dr Alexander added: “If people with dementia, and their carers, want to contribute to raising awareness about what dementia is, how it impacts on their daily lives, their working lives, and if they want to help contribute to the creation of dementia-friendly communities, then participating in the research is one way to do that.
“It is about raising awareness, creating a better understanding and challenging the stigma that is still wide-spread.”
The project runs until April 2019, having started in 2014. It is funded by the Economic and Social Research Council and the National Institute for Health Research.
To take part, contact the team on 01786 467 624 or email kirsty.alexander3@stir.ac.uk
Alternatively, contact research project administrator Lindsay Sibbald on 01786 466 303 or email l.a.sibbald@stir.ac.uk
For more information about the study, visit the project website, the researchers at Stirling are taking part in Work Programme 4.
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