Dementia-bereaved couple join call for Welsh data as half of sufferers go undiagnosed

• 'If you don't know who has it, how to goodness are you going to be able to cure them?'

The NHS does not know how many people have dementia in Wales, contributing to the worst diagnosis rate in the UK, a leading Alzheimer's charity has exclusively told ITV Wales.

Alzheimer's Society Cymru estimates that of around 50,000 people living with dementia in Wales, only half have been diagnosed.

The charity and Senedd members from all four parties are calling on the Welsh Government to collect and publish data on what is Britain's biggest killer.

Latest figures show that 3,530 people in Wales died from the disease in 2021.

Husband and wife John and Sarah Bennett-Green, from Mumbles, Swansea, shared their "awful" and "upsetting" experiences of both losing a loved one to dementia.

Sarah, whose mother Joyce died in 2005 aged 85, said: "She was so active and quite brilliant as a woman, very intelligent, knew everything, did everything and then suddenly to see that go it's awful.

"What I found was I was mourning her before she'd died because she wasn't mum anymore, she became this other person and that was very painful."

John recalled one memory of his father, John, not recognising him when he visited him in his care home. His father died in 2000 at the age of 71.

"He did deteriorate very badly and that was quite sad from my perspective but in some ways also it was a relief because I knew then he wasn't suffering with this awful thing anymore," John said.

'Without knowing you have dementia it's impossible to unlock the care you need'

Data on the number of people diagnosed with dementia in Wales has not been published since 2018.

It has a diagnosis rate of around 50%, the worst of all four UK nations according to Alzheimer's Society Cymru.

On Wednesday (13 September), the charity sent an open letter to NHS Wales insisting that it logs dementia care data like other UK nations.

It described the lack of data as "unacceptable in a modern society", adding that "we have no way of gauging the breadth of the issue, where we are succeeding as a country, nor where we are failing".

James White, head of national influencing at Alzheimer's Society Cymru said: "A more complete data picture will allow services locally to be more prepared for what's coming.

"It will also allow us to identify gaps, so where maybe the diagnosis rates aren't where they should be, so that might allow us to encourage more people with potential dementia to come forward.

"Without knowing you have a dementia diagnosis it's impossible to unlock the care and support that you, your family and your loved ones need."

In England, the NHS publishes the number of people diagnosed with dementia every month. Its diagnosis rate is almost 64%.

In Scotland, where the diagnosis rate is also around 64%, data is collected but not made public.

In Northern Ireland, dementia diagnoses are published once a year and 60% of people with dementia get a diagnosis there.

The Welsh Government has said it is working to make regional and national dementia diagnostic data publicly available on a quarterly basis, with a plan to publish it every month in the longer term.

John and Sarah also expressed their disappointment at the fact Wales is seemingly lagging behind.

"It would mean that we could, the key word here, identify, identify the people who have it," John said.

"If you don't know who has it and don't know where they are, how to goodness are you going to be able to cure them?"

Sarah added: "I know that it's always money sadly, as far as I'm concerned, that's a big reason why things aren't done.

"But if we're going to talk about money, there will be savings if people can be recognised earlier and something can be done, the NHS can be saved money."

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