Written by Tommy Boyd.

Sometimes it feels like everyone in Prestwick knows my mum. To some she’s the friendly hairdresser who always did her best to fit you in at the last minute. To others she’s the wee runner spotted among the early morning dog-walkers, pounding the esplanade or circling the perimeter of the golf course come rain, hail or shine. To many more she’s simply a friend or familiar face; a valuable member of the local community.

A little over 4 years ago at the age of 56, my mum Betty was diagnosed with a form of frontotemporal dementia, which is a neurodegenerative disease of the brain’s frontal and temporal lobes. Although we normally think of dementia affecting older people, the average age of onset for frontotemporal dementia is in the mid 50s. It is the second most common type of early onset dementia after Alzheimer’s disease, although my mum has a rarer subtype called semantic dementia. There are no clear causes or risk factors, and the main, initial symptoms are a decrease in the ability to read, write and understand what is being said.

Soon after her diagnosis, mum was delighted to be asked to travel to London to participate in some research (and jumped at the chance to visit my sister who lives there!). Not a great deal is known about semantic dementia, but some of the work my mum has contributed to has already been published, and could help with earlier diagnosis of the disease in future. Longer term, we hope the studies she continues to be involved in might help in finding a treatment for semantic dementia.

But it’s not just in the research labs where we can seek to improve the lives of younger people with dementia. Simply raising awareness remains vitally important. With the best intentions, many people have told my mum that there’s nothing wrong with her, and that they too sometimes struggled to find the right words. I doubt they’d say the equivalent to someone with another illness or disability. A better understanding of dementia and how it impacts on people’s lives could reduce the stigma and alleviate some of the unnecessary hurt from such misconceptions.

Our local Dementia Friendly Prestwick initiative seeks to do this and much more. So far, it has given my mum a renewed sense of belonging and worth in the town. Given her difficulties, it’s remarkable that she has retained a very active social life. This has been crucial in slowing the progress of her dementia, and wouldn’t have been possible without the support of friends, family and the wider community. The increase in dementia awareness throughout Prestwick is clear, with regular dementia-friendly cinema screenings and other events a major contributor to this. I’ll continue to do all I can to help my mum live a fun, fulfilling and independent life, and I’m hugely grateful to all those in Prestwick who’ve given my mum the hope and belief that she can do that too.

Tommy