In 2013 at the age of 53, we noticed some changes in my dad's behaviour. He was acting strangely, becoming obsessed with the intricacies of a routine. He lost his job. My dad started to do things he wouldn't usually do, like go out to the pub every night. He would make inappropriate jokes and comments and didn't understand that they were wrong. Myself and my sisters convinced him to go to the GP and, due to our family history, he completed a 'dementia test': a mini-cognition test which focuses on information recall and a small task, usually involving drawing a clock-face. To our surprise, Dad's score came back perfect, suggesting no dementia was present. The doctor considered depression as a way to explain his behavioural changes, though we were certain that he was developing one of the rarer dementias, one that couldn't be tested with information recall. 

As time progressed, dad deteriorated. We pushed for another doctor's appointment. Fortunately, this doctor booked dad in for a brain scan. The brain scan revealed slight changes to my dad's brain which were somewhat consistent with Alzheimer's disease and more so with Frontotemporal Dementia (FTD), also known as Pick's disease. 

At times, it was tough to be around him; the only way we could see him at ease was in one of his routine environments where he felt most comfortable: walking the route he walked every day, or drinking with him at the pub where he drank every night. This was fine, but dad's inappropriateness was sometimes tricky to deal with, especially if he was around new people as they they didn't know how to take him. Dad is blessed with the gift of youth, so with the stereotypical dementia sufferer being around 30 years older than dad appeared, it was difficult and confusing for strangers who didn't understand. Fortunately, he became well known in his local pub and myself and my sisters will be forever thankful to those who kept a watchful eye on him and listened to him as he told the same story after story. 

The changes in dad's behaviour got so bad that they warranted a social worker as well as some police visits. Sadly, it also meant some individuals began to take advantage of him. Dad did have some input from medical professionals who tried to support him, but struggled due to the nature of the disease. Some of these professionals were really helpful, but advised that there was little they could do and so we were told that we had to simply wait for a 'crisis point'. At this point, dad was still living independently, though we knew this wouldn't be for much longer. 

At the end of July, the deterioration was quickening and the concerns and worries of knowing that dad was walking the streets got too much, so we made the decision to have an intervention with a mental health team, knowing the likely outcome would be that dad was placed in a facility. He was placed in a dementia assessment centre in Salisbury which aims to help his behaviour and hopefully, find a specialist care unit appropriate for him; he is still there three months later. Care homes for those with FTD are few and far between and placing a 59 year old in a dementia care home, mostly populated with much older residents, is unfair on him and unfair on them. My sisters and I hope that our dad can be placed somewhere which will match his age and his needs, as well as being close to us so we can still see him every week.

*Update - As of the end of January, our dad has moved to a beautiful care home located in The New Forest. The home mostly caters for elderly people but does have some younger patients, like dad. It is reassuring to us that, although we wish it wasn't the case, there are others in the home with Frontotemporal dementia, so we know staff will be well-trained in catering for dad's needs and ensuring he is happy. Although the home is a near three hour round trip, we are confident that dad will be well-looked after and happy in his new home.* 

In the final year of this illness, we were shocked to discover the physical deterioration which came with dad’s form of dementia. He was not able to speak and he was confined to a wheelchair, eventually leading to permanent bed care. On 3rd August 2021, dad peacefully drifted away. Whilst our hearts broke, we were comforted knowing his suffering was over.

Recently, the awareness to 'fix dementia care', raised by the likes of Barbara Windsor, has thankfully brought dementia back into the spotlight. Our experience of dad's dementia has highlighted severe flaws in this system, not just with the care aspect of dementia, but of the diagnoses of rarer cases too. So I have chosen to run the Bath Half Marathon for Alzheimer's Society to fund-raise for all of the work they do, which includes breaking down barriers of stigma, particularly surrounding rarer dementias, and developing their treatment and care. And of course, I'm running to make my dad proud.

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Alzheimer’s Society is transforming the landscape of dementia forever. Until the day we find a cure, we will create a society where those affected by dementia are supported and accepted, able to live in their community without fear or prejudice.