How my husband was diagnosed with Frontotemporal Dementia at 42

If I was walking with somebody old, people wouldn't think twice if they behaved like Mark does. They'd say, “Oh, they're old, they probably have dementia”.

But my husband has dementia, and it's the rare kind. It's Frontotemporal Dementia (FTD), and he was diagnosed at the age of 42.

One of the most challenging parts for us is that the community don't understand. 

There's a huge misconception that dementia is all about memory loss and it only happens to old people.

We made the vows 'in sickness and in health' when we got married, and that's what I'm trying to do.

I always feel like I'm explaining or apologising for Mark. FTD affects someone's behaviour and their emotions, and not so much the memory.

People just don’t know about this. For example, if we're in a restaurant, Mark will take food from someone's plate and think nothing of it. 

Picking up on personality changes

Mark was diagnosed in 2021, but I think I can trace it back to around 2018.

His personality change…it was subtle. If we'd gone to a GP, they wouldn't have believed it.

I first noticed some strange behaviours, like Mark waking in the night and banging clothes hangers together, or completely forgetting how to load a dishwasher.

At work he was becoming really disorganised, which was unlike him.

Mark was one of the most generous people I knew. But he'd stopped being generous and stopped thinking about other people.

He became more selfish, and he was getting more muddled. He’d repeat his conversations. 

When Mark's grandma died, he wasn't upset at all, and they'd been really close. So, with all of this in mind, I tried to get help. But then Covid hit.

Getting someone to listen

I tried to get the doctors to see Mark, but nobody would talk to me. Being so young neither of us had even discussed getting Power of Attorney.

He did eventually speak to three separate counsellors but, because of the Covid restrictions, these were still over the phone.

The three counsellors all concluded that he was just missing the routine of work. But I knew they were wrong.

I felt like nobody would listen to me.

We finally got a GP appointment, but only because I made it for myself. Despite my frustration, I began to feel heard, and the GP met with us every four weeks. 

Help and hope

I asked the GP to please test his memory. Of course, he passed with flying colours because FTD doesn't affect the memory like other dementias.

Without Power of Attorney, I couldn't speak for him or book any therapy through the NHS. 

We got the opportunity to meet with a CPN (Community Psychiatric Nurse). She came for two hours and observed Mark. She told us to go to A&E immediately.

Finally getting a diagnosis

We were supposed to have a CT scan and we waited 13 hours. For somebody with FTD, this was unbearable. 

The results led to Mark being admitted for two weeks in the neurology department at the hospital.

Finally, he got his diagnosis of Frontotemporal Dementia (FTD) in August 2021.

Now I have to think about the family and what Mark would have wanted as a parent.

Support and the Society

I'm very lucky to have such brilliant friends and family. I have a big network of support.

I also found a lot of support and information from leaflets and brochures from Alzheimer’s Society.

I use the website to inform myself of his rights and the support that we can get. 

Mark’s carer takes him to Alzheimer’s Society’s Singing for the Brain every week and he really enjoys that. 

I know that he'd be proud of what I've achieved for him. He can't say it, but I know him and I can feel he's proud.

I can't change his diagnosis. There's no magic wand.

The way I see things is that there are some things in our life that are out of our control. And the things I can change…well, I focus on those.