Playing a part in dementia research: Stan’s story
Retired electrician Stan first came across Join Dementia Research when it was presented at a local dementia group meeting by Alzheimer’s Society. He was keen to learn more about the service and sign up having experienced dementia in his family.
Stan lost his mum to vascular dementia and through his caring for her, he was aware of the early signs and was diagnosed himself in 2014 after visiting his GP. Following his diagnosis and motivated by his family history, Stan signed up to Join Dementia Research earlier this year.
“I signed up to Join Dementia Research as I want to break down the stigma around dementia, contribute to our understanding of the disease and make a difference to the future of dementia care, diagnosis and treatment. “
Useful techniques for independent living
Stan manages his dementia through techniques such as leaving commonly used items where he can see them. He explains:
“If I put them away, I sometimes can’t remember where they are, so I have to buy replacements which can be expensive!”
He also uses virtual assistants like ‘Alexa’ to remind him about important dates or as a prompt to take his medication.
Stan explains that it’s important to retain independence and to find the best way of living well with dementia:
“Dementia will have to fit around my life, rather than me living my life around my diagnosis,” he says.
Since signing up to Join Dementia Research Stan has taken part in a number of online studies including ‘The Me in Dementia study’. This study was looking at how memories and thoughts about oneself change throughout life, and whether these changes are different in people diagnosed with dementia.
Stan was able to take part in the study from home and all communication with the research team took place via his smartphone or tablet and laptop.
The first part of the study included a test to measure attention, memory and language skills. There was also a questionnaire about how in control the person feels over their own actions. In the second session, Stan was asked to watch a clip of a rocket launching and asked to judge how quickly this happened and also look at some images of famous people and identify if the word on the screen described the person in the photo.
“I was surprised to learn that all aspects of the study took place online from the comfort of my own home and the researchers were easy to deal with and each step of the process was explained clearly.”
Stan has also taken part in another study, ‘Individual Cognitive Stimulation Therapy using Zoom’ which like ‘The Me in Dementia study’ took place online and included a variety of activities to stimulate the brain virtually. The benefits of face-to-face cognitive stimulation therapy are well reported, and the study is investigating whether participants can still benefit in the same way from online activities.
Making a difference
Stan believes his approach to his diagnosis is in part due to his previous career as an electrician and the way in which he would always do his research before deciding the best approach. He feels that research could offer solutions and hope.
Taking part in research has enabled Stan to make new connections with other research participants and engage with university PhD students all while making a contribution to our understanding of dementia.
If you are inspired by Stan’s story, sign up to Join Dementia Research today and see how you too can make a difference.