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Why Rob Says Yes to Alzheimer’s Research

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.

A man in running gear standing in park

“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.”

Rob MitchellResearch participant

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.

When Alzheimer’s becomes personal

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.

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A woman and three men standing side by side smiling at the camera Open image in lightbox: Rob Mitchell family Open image in lightbox: Rob Mitchell family
A woman with white hair and glasses smiling Open image in lightbox: Rob Mitchell friend Open image in lightbox: Rob Mitchell friend

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.

Choosing to take part

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.”

A man sitting in a garden chair with a dog on his lap

Why finding Alzheimer’s earlier matters

Rob has seen first-hand what Alzheimer’s can mean for individuals and their families. That is one reason he is interested in research that could help scientists understand the disease earlier.

Changes associated with Alzheimer’s can begin in the brain years before someone receives a diagnosis. Researchers are therefore exploring ways to identify and understand these changes earlier, potentially creating more opportunities for treatment, support and planning.

At Scottish Brain Sciences, researchers are following changes in brain health over time and exploring new approaches to detecting Alzheimer’s disease, including the potential role of blood-based biomarkers.

For Rob, being part of that work is about helping researchers build the knowledge that could make a difference in the future.

Helping future generations

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.”

More news from Scottish Brain Sciences

Dr John Harrison

Redefining clinical meaningfulness

28th March 2023
A World Dementia Council Summit will this week (Monday) discuss how teams conducting clinical research into Alzheimer’s disease and wider dementia can measure what matters when some interventions clearly benefit patients but may not deliver the dramatic improvements needed to meet current definitions of effectiveness.
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Dementia: A treatable condition of midlife

28th February 2023
One of the world’s foremost researchers into Alzheimer’s Disease and the wider diagnosis and treatment of dementia says, for the last century, investigations into these conditions have been focusing on the wrong place.
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