Meet Rob Mitchell, an Alzheimer’s research participant from Inverness, and discover why his family’s experience of the disease inspired him to take part in research with Scottish Brain Sciences.
“Science is going to stand still unless people come forward and take part. If I can play the tiniest little part in helping to find solutions to some of the causes, the symptoms, whatever it might be, then I’m willing to put myself forward.”
Listen to Rob talk about why taking part in Alzheimer’s research matters to him, and what his experience has been like with Scottish Brain Sciences.
For Rob Mitchell, taking part in Alzheimer’s research is deeply personal. His father, Ron, died with Alzheimer’s disease around 18 years ago, a close friend later developed the disease, and Rob believes his grandfather may also have lived with an undiagnosed form of dementia.
Now 60 and living near Inverness with his partner Mark, Rob is taking part in brain health and Alzheimer’s research with Scottish Brain Sciences through the IONA study. His family history is one of the main reasons he wants to understand more about the disease and contribute to research aimed at changing what diagnosis and treatment might look like in the future.
Rob remembers clearly what his family experienced when his father became ill. At the time, treatment options were limited, although medication did appear to slow the progression for a period.
“It kept us having a dad who, on the whole, we recognised, and who recognised us, for a bit longer,” he says. “So, we were grateful for that.”
He also saw the impact the disease had on his mother as she watched her husband change, something Rob describes as one of the most difficult parts of the experience.
Alzheimer’s touched his life again more recently when his close friend Joan developed the disease. Even towards the later stages, when communication had become difficult, Rob remembers the connection between them remaining.
“Her face used to light up,” he says. “She might have forgotten who I was, but she clearly knew that she knew me, and she felt safe and comfortable with me. That was just lovely.”
Rather than making Rob reluctant to know more about his own risk, those experiences made him more determined to take part in research.
Rob had already been contributing to UK Biobank for more than 15 years when he became involved with Scottish Brain Sciences.
Through IONA, researchers follow people over time to learn more about how brain health changes and how conditions such as Alzheimer’s disease develop.
For Rob, his family history makes this particularly relevant. He knows his father had Alzheimer’s and suspects his grandfather may have experienced similar symptoms.
Taking part gives Rob an opportunity to contribute to research that could help scientists better understand the changes associated with Alzheimer’s and how the disease develops over time.
His experience of taking part has also been overwhelmingly positive.
“Every contact I’ve had with Scottish Brain Sciences has been wonderful,” he says. “People always make time for you, to ask questions and help you understand what you’re doing.”
He particularly values how clearly the research and each stage of participation have been explained.
“Everybody is treated with absolute respect and put at ease. They can’t do enough to make you feel comfortable. It is a positive experience.”
For Rob, the possibility of improving what might be available to future families is enough reason to be involved.
This September, Rob will take on his first Loch Ness Marathon, inspired in part by the people he has known and loved who have been affected by Alzheimer’s.
It is another way of responding to a disease that has had a profound impact on his life.
Rob knows the research he takes part in may not lead to something that benefits him personally. But he hopes it could help create better options for someone else in the future.
After seeing first-hand how much even a little more time can mean to a family, that possibility is reason enough for Rob to keep saying “yes.”
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