Four people sit on a sofa with a painting

We didn't know anyone with a Frontotemporal dementia diagnosis

Helen Cumpstey was diagnosed around 2012 with Frontotemporal dementia (FTD), after years of not knowing. Her husband Ray explains the challenges they faced along her dementia diagnosis journey...

About 12 years ago, myself and a couple of the family, her sister in particular, noticed something. 

We didn’t know what it was and we didn’t know anyone with dementia.  

We eventually went to see our doctor when things got really bad. He recommended we go to the psychiatric clinic at the hospital.  

We were told she’d have to undergo a series of tests. They wanted her to come in every day for five days, for three to four hours each day. I asked what the tests were, and they said memory tests.

Getting an Frontotemporal dementia diagnosis

The doctors were really good, but it was horrendous for Helen.  

The second day, she didn’t want to go. Some of the questions were so hard. Holding up a picture with 20 items on and then 10 minutes later asking her to remember them. I was sat there and even I was struggling.

Then, on day three she didn’t want to go, but we went though with it, and she was crying by the end of it.  

I said, we’re not going to come for the other two days and that they must have got enough by now.

We were told that if we returned the next day, we would hear their conclusions, so we went back.  

His opening words were  “…well, the good news is that it’s not Alzheimer’s.”  

I was thinking, well, great, I wonder what it is then.  He said “…the bad news is that it’s dementia…”  I thought, eh?  What is the difference.  I knew nothing about it.  

He didn’t bother to explain.  He said, that’s the diagnosis and that he’ll send a report back to my doctors.

Our dementia advisers are here for you.

I got a call the next day from my GP, and he confirmed the diagnosis.  

It was, in fact, Frontotemporal dementia (FTD), which again – didn’t mean anything to me at the time.  

I took Helen home. She was obviously very upset.  

Singing for the Brain support

We didn’t get any help from then on. Not for years. 

It’s only because a friend had told me about Alzheimer’s Society – Singing for the Brain, actually – that things changed.

We used to go to one in St. Anne’s and gradually I got more involved, taking the register etc.  

As her sister was still able to come, I ended up becoming a volunteer at the groups! This has led to me contributing to assisting in interviews for positions in Alzheimer’s Society.  

But, as time has gone on, Helen’s situation has worsened.  

She doesn’t communicate too well and she has other health issues.

She has osteoarthritis in her knee. She’s in tremendous pain. She was having steroid injections.  

We went to see a surgeon about a knee replacement, as the injections will only work for so long, but just two weeks before she was due to be operated on, the surgeon rang and said: “I really don’t think this is a good idea. She won’t understand the amount of exercise that needs doing after the operation.”  

If you don’t exercise – things can get a lot worse. So, we didn’t go through with it.

She is very unsteady on her feet and subsequently fell and broke her leg.  

Pacemakers and dementia

One day in 2022, the district nurse came in and took one look at her and said she was really pale. I hadn’t noticed really. She took her blood pressure and rang for an ambulance straight away. She said her BP was horrendous. She was whipped into hospital, and they got her onto a ward, and I stayed with her.  

The following morning, the nurse came round at 7.30am to do the usual checks, and she shot off like a rocket and came back 10 minutes later with a doctor. The doctor said if she doesn’t have a pacemaker fitted now, she’ll be dead by the end of the day!

She had the operation, and she has the Formula One version! She’s fine now!

From a dementia point of view, she was OK with it.  

She didn’t understand a lot of what was going on in the hospital, but she was ok.  

Being doubly incontinent, she did fight a bit with the nurses when they tried to change her, but other than that, she was fine.

Helen and Ray do a jigsaw

'She still knows me by name'

We have a granddaughter – 10, going on 20 – who used to visit. She’d dash straight in, give Grandma a hug, and say, "what we doing now, Grandma? Are we reading a book? Doing a jigsaw?" 

I’ve so many pictures of them together. But within the last 6 months, she stopped recognizing her. 

I dread it happening when it’s my turn. She still knows me by name. 

Her sister comes every Tuesday and she recognizes her. We do a video call with one of our sons, every Sunday. She always waves at him, but I don’t know if she knows who he is. 

'She doesn't recognise him'

The upsetting thing is with our eldest son, who lives just 200 yards away. She’ll often tell him to clear off.  He wears a hat.  He has a beard. She doesn’t recognise him as her son.

On New Year’s Day, we all got together. There's only eight of us so what we do is that he sits at the end of the table, and she sits at 90 degrees to him. That way she’s not looking directly at him.  

Her friends come round, and she had no idea who they are. She tells them to clear off. She doesn’t tend to speak a great deal.  

But most of the time, she’s very settled. Her day is very regimented.

She used to like doing 500-piece jigsaws, but that got too much. So I bought the large 100-piece ones.  

But I found she was struggling to do the outside, so what I’ve done is made a board up for each jigsaw and glued the outside edges on to start her off. I’ve made about 8 or 9 of them.

Her passion is music and she was into Gilbert and Sullivan Operettas. 

So we have an inside joke for when I’m driving down to see family, they ask me how many Gilbert & Sullivan songs I had to listen to on the way!

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Helen is my cousin and it is so sad to see her deteriorate like this. I feel for Ray, her husband, who has to live with seeing the love of his life slowly fade away. Anyone, carer, who has to cope with this disease deserves a medal.
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