1. ITV Report

Charity calls for better diagnosis in Wales for under 65s living with dementia

Young onset dementia affects thousands of people in Wales Credit: ITV Cymru Wales

More than 40,000 men and women in the UK are living with young onset dementia. But according to the Alzheimer’s Society, people in Wales who have developed the condition at a younger age aren’t getting the help and support they need.

Wales currently has the worst dementia diagnosis rates in the UK. Only one in every two people who have the condition here has been formally diagnosed.

Sue Phelps, head of Alzheimer’s Society Cymru, has told ITV Wales that people who develop dementia in middle age are often misdiagnosed.

Alzheimer's Society Cymru says many younger people with dementia are often diagnosed. Credit: ITV Cymru Wales

If you go to your GP in your 40s or 50s feeling that you may have memory problems, or the first signs of dementia, the initial reaction is more than likely going to be, ‘it’s not.’ It’s misdiagnosed. So it will be treated as depression or a stress at work for example.

On the one hand we’ve got a significant group of people in Wales with young onset dementia. But on the other hand we haven’t got the services geared up to be able to advise and support those people to live their lives.

– Sue Phelps, head of Alzheimer’s Society Cymru
people in Wales, under the age of 65, are living with dementia.

Low diagnosis rates mean the actual figure of people in Wales under the age of 65 living with dementia could be even higher.

Developing dementia at a young age can put huge financial and emotional pressure on families. As well as the anxiety of knowing there’s no cure for the condition, there may also be children to look after, a mortgage to pay and dependent parents to care for.

Karen Kitch from Llanharry, Rhondda Cynon Taf, was diagnosed with Alzheimer’s disease at the age of 51.

Karen (centre) was diagnosed with Alzheimer's at the age of 51. Credit: ITV Cymru Wales

It was a bombshell. It was like, oh my God, this can’t be happening to me. This isn’t right. It was almost as if it wasn’t you they were talking about.

Balance is the one thing with me. Sometimes I fall in the house. I come from the bedroom and the next minute I am on the floor. A couple of months back I came out of the bathroom. It was in the middle of the night and I fell in the hallway but I thought I was still in bed.

– Karen Kitch

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Living with dementia has brought huge changes for the family. Karen no longer works, which has put the family’s finances under pressure. Her husband, Jason, is doing his best to make ends meet.

You go from two working people to one person. And I had to try and balance the books. So you’re trying to cut as many corners as you can and there’s only so many corners you can cut at the end of the day.

You’re going without food. Sometimes I didn’t want to come home because Karen would say ‘I will cook food’ and I would say ‘no I’ll get something in work.’ I wasn’t. The boys in work would give me food. You’re at that point. But people don’t see that.

– Jason Kitch

Earlier this year the Welsh Government launched a dementia action plan for Wales which recognises the challenges faced by younger people with dementia. That plan also aims to improve diagnosis rates in Wales year-on-year.

You can see more on this story in Wales This Week: Memory Matters. Tonight at 8pm on ITV Cymru Wales.