Imagine spending your teens and twenties watching a beloved parent living with dementia. I did, and this is my story…
When I tell people that my dad had vascular dementia for about 19 years, the usual reaction is one of surprise – can you really live with dementia for that long?
The answer is a resounding yes, not least because with multi-infarct dementia, the most common type of vascular dementia, the cause is a series of small strokes which can often be so tiny that the person might not notice any symptoms, or the symptoms may only be temporary. The cumulative effects, however, are devastating on the brain and the person’s ability to function.
Devoid of any additional support or resources, we simply had to learn about dad’s dementia as it progressed
My father was, in every other respect, a very healthy person who had led an active, outdoor life as a farmer and man of the country. Without his dementia he would most likely have lived a long and happy retirement, but instead it was characterized by ten years of slow descent into confusion, hallucinations, paranoia and an inability to look after himself or his home. Given that I was a teenager at the time, this was particularly painful to watch.
Dad’s diagnosis finally came after we found him collapsed at home from a much larger stroke. From then on he was to spend the last nine years of his life in three different care homes, punctuated by various spells in hospital, before he died in April 2012, aged 85.
You may well think that as a result of his dementia, my dad had no quality of life, but the reality was very different. As a family we made sure that every moment we were with him had as much meaning as possible, that his life was filled with light, laughter and fun, and that he was surrounded by love until he took his last breath.
For us, devoid of any additional support or resources, we simply had to learn about dad’s dementia as it progressed, inevitably making mistakes along the way, but always trying our best to understand what his life was like and what he needed. Through the work I do now, I aim to use that knowledge to improve the lives of all those who are touched by dementia, increasing awareness and education in society as a whole, and transforming the care given to people with dementia and their families.
Sadly we still don’t know enough about the numerous different forms of dementia, of which vascular dementia is just one of many. So many lives are affected when someone develops dementia, which is why research into the causes, treatments, prevention and cure is so close to my heart. The work of Alzheimer’s Research UK is vital in changing this landscape to one of more certainty and understanding, which as anyone with acute personal experience will tell you is something that we all dearly wish for.