Caring for my dad with frontotemporal dementia - Rachel's story

In 2013, when I was 17, my family and I 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.

My dad was an amazing, funny (and quirky!) person. He was hugely into music – he’s been to Glastonbury Festival twenty times! To my sisters and I growing up – he was a rock and an inspiration.

So when these symptoms began to show when he was only 53 years old, we felt like we needed to do whatever we could.

A diagnosis of frontotemporal dementia

My sisters and I convinced Dad to go to the GP. Due to our family history, he completed a 'dementia test'. It was a mini-cognition test that focuses on information recall and a small task, usually involving drawing a clock-face.

To our surprise, Dad's score came back perfect. This suggested no dementia was present.

The doctor considered depression as a way to explain his behavioural changes.

‘We were certain that he was developing one of the lesser known 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. These were somewhat consistent with Alzheimer's disease and more so with frontotemporal dementia (FTD), also known as Pick's disease. 

Changes in Dad's behaviour

At times, it was tough to be around Dad.

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.

‘Dad's inappropriateness was sometimes tricky to deal with, especially if he was around new people. They didn't know how to take him.’

Dad is blessed with the gift of looking youthful, so with the stereotypical person with dementia being around thirty years older than Dad appeared, it was difficult and confusing for strangers who didn't understand. 

Fortunately, Dad became well known in his local pub. My sisters and I 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. We were told we simply had to wait for a 'crisis point'.

At this point, dad was still living independently, though we knew this wouldn't be for much longer. 

How Dad's dementia progressed

At the end of July 2019, the deterioration was quickening and the concerns and worries of knowing that Dad was walking the streets got too much.

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.

Dad 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.

‘Care homes for people with frontotemporal dementia are few and far between.’

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 hoped that our dad could be placed somewhere to match his age and his needs. We also hoped for somewhere close to us so we could still see him every week.

Settling into residential care

This year, 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 residents, 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.

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.

And Dad is still an incredibly musical man! When my sister got married, he was too poorly to do a speech. We recorded him singing different lyrics to Hey Jude for his father-of-the-bride speech. He sang it note-for-note and word-perfect! It’s amazing how music can reach those with dementia.

My support for Alzheimer's Society

Recently, the focus on the campaign 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.

I have chosen to run the Bath Half Marathon for Alzheimer's Society to fundraise for all of the work they do. This 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.