New young onset dementia figures
New figures show 70,800 UK adults are affected by young onset dementia
The word dementia is used to describe a group of symptoms – including memory loss, confusion and communication difficulties. Alzheimer’s disease is the most common cause of dementia.
Alzheimer’s is commonly associated with the older generation. However, new figures from Dementia UK show a ‘hidden population’ of 70,800 people in the UK who are currently living with young onset dementia. This is a rise of 28,800 (69 per cent) since 2014.
For World Alzheimer’s Month, we are joining the campaign to call for better awareness of young onset dementia. Also, the need for age-appropriate services and care.
One couple’s story: Stuart and Roger
I met Roger in 1985, and we’ve been in a registered partnership since 1995. He’s 12 years younger than me and a part of me, thought he’d be the one looking after me in my old age. Roger was diagnosed with young onset Alzheimer’s when he was 57.
Nothing could have prepared me
My background is in nursing – general nursing, intensive care, heart surgery patients and later nursing in the community. I had some contact with people with dementia, but nothing could have prepared me for young onset Alzheimer’s. I had never experienced anyone with apraxia, and that’s one of the biggest challenges for me. It’s not something I expected to happen with dementia.
Roger was always good at the practical jobs around the house. He was in charge of fixing things, and I just left him to it. Now that’s become my responsibility and as well as caring for him full time, it’s a lot to learn. Roger has deteriorated considerably since the diagnosis. He’s lost some of his verbal communication.
Roger’s from Norway, and we lived there together for about 30 years before returning to the UK. I speak fluent Norwegian and he still understands English but even in his mother tongue, it’s hard to get answers out of him. He doesn’t enjoy the same things he used to, even something simple like sitting in the sun, he doesn’t have any interest in now. Luckily, his mood has remained good. He’s always smiling, and people tend to be drawn to him.
Gradually, I’ve taken on more and more. Roger can’t go for walks without me, and I prepare all his food. When he was first diagnosed, I wanted to let him do as much as possible for himself. I get a bit frustrated that I’m slowly having to do more and more for him and I resent it.
I didn’t choose to be a carer
It wasn’t a choice and in fact I thought that by now, I would be enjoying my retirement. Living happily ever after.
Like many gay couples, we don’t have children, and I wonder if that’s made it more difficult to be a carer. People who have children have that experience of guiding and nurturing to fall back on if they go into a caring role later in life. If you’ve never had children, you don’t have that.
Ask for help
When it’s just you and the person you care for, you feel like you’re almost in a capsule, cut off from the outside world. It can be very easy to think something is just a symptom of Alzheimer’s and what you have to put up with rather than reaching out for support. Never be afraid to get help, because that’s actually the bravest thing to do.
Reading about other people’s experiences has helped me process some of Roger’s symptoms, and now I’ve made a doctor’s appointment to discuss them and see if we can get additional support.
I began using technology more at the start of the pandemic. Zoom was a new thing, and I did struggle with it in the beginning. It was a great reprieve during lockdown. Just having a normal conversation was and still can be a luxury because I don’t get to have that with the person I live with anymore. He’s the same in many ways, but we’ve lost that communication. We always had conflicting viewpoints and would have hefty discussions about whatever was going on in the world, but that’s changed quite a lot.
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#InThisTogether #WorldAlzheimersMonth #KnowAlzheimers #KnowDementia