Patients in Wales waiting nearly three years for a dementia diagnosis

People in Wales experiencing symptoms of dementia have had to wait up to nearly three years for a formal diagnosis despite the target being 12 weeks, an ITV investigation has found.

Using Freedom of Information laws, ITV Wales asked all of Wales' health boards for data on the longest waits patients had experienced in the last 12 month period, following an initial referral for further tests- for example by their GP.

Hywel Dda University Health Board revealed that at least one patient in their area had experienced a wait of 153 weeks - or just under 3 years - while the average wait was 16 weeks.

The health board says that particular patient was referred into the service during the COVID-19 pandemic, at which stage there were interruptions to service delivery.

The all Wales Dementia Care Pathway of Standards ambition is that all patients are assessed and given a diagnosis within 12 weeks of referral.

The national dementia charity, Alzheimer's Society, said the data uncovered by the FOI request, "paints a really bleak picture of the journey to diagnosis for people in Wales".

"It's absolutely vital that people get a timely diagnosis for dementia. It's important to the person themselves...but it's also important to the system. A diagnosis relieves pressure on the system, it means people are less likely to attend A&E, it means people are more likely to take control of their condition and stay in their homes for longer."

Two other health boards revealed waits of around two years or more for individual patients.

In Cwm Taf Morgannwg University Health Board area, at least one patient waited 127 weeks, or nearly two and a half years.

A patient in Aneurin Bevan University Health Board's area waited 103 weeks, just shy of two years.

In Aneurin Bevan, the average wait time of nearly 16 weeks was closer to the target, but the health board said every patient has a different pathway to diagnosis, and therefore said this would be a misleading representation in isolation.

In Cwm Taf Morgannwg, the average wait is 21 weeks, or nearly 5 months.

The longest average wait for patients was in the Powys Teaching Board area, where for most patients it can take as long as 25 weeks to get a formal diagnosis following an initial referral, more than double the target.

The health board said: "Given the rural and sparsely populated area of Powys, our residents access many of their acute and specialist care services from neighbouring health boards in Wales and neighbouring NHS Trusts in England. Locally we provide those services that it is clinically appropriate to provide in a rural community setting, whilst more specialist services would be provided by commissioned services".

Linda Pearson cares for her husband Michael, who has lived with Alzhiemer's disease - one of the most common types of dementia - since last year.

The couple have lived in In Llandrindod Wells in Powys for the last 7 years, and she says Michael waited between 12 and 14 months for a diagnosis after first going to the GP when he started to feel his brain wasn't working properly.

"I just didn't feel right", Michael said. "It took a long time to get the diagnosis and to work out what was going on in my brain."

Linda explained, "I made him go to the doctors because he was getting quite upset because he kept saying, 'there's something wrong with my brain', and I didn't know what he could or couldn't do, because he couldn't say".

Michael was given a memory test, which included asking him to draw the numbers on a clock face, which he couldn't successfully complete.

Linda says he was sent for a brain scan which did not show any presence of the disease, leading to the couple making numerous visits to a psychologist in Newtown, Powys over the course of months.

Eventually, Michael was given a diagnosis by a nurse practitioner and he is now prescribed medication for Alzhiemer's.

"There's been no empathy", Michael said. "You get your diagnosis, and that's it", Linda added.

"I guess most partners of people who get this disease don't know what they're doing. I don't know whether I should be helping him to do things or letting him do them on his own and fumbling. And basically, all I got from a psychiatrist was to say my job now is to make sure he's safe, and that was it.

"They wouldn't treat someone with cancer like this".

A spokesperson for Powys Teaching Health Board said: “Powys has dedicated teams of dementia specialist staff and we are constantly striving to make improvements to the service and also to make our overall facilities more accessible to those people living with dementia."

"While we have experienced longer periods between referral and diagnosis than we would like in the past, we are taking steps to reduce this and people in Powys can now expect to begin their assessment within around eight weeks of their referral from a GP."

"Michael’s experiences highlight how distressing dementia can be and also that it can take different forms that sometimes make it harder to diagnose. But it is by listening to people like Michael and Linda that we are able to tailor our services. We are proud to both have people living with dementia on our Dementia Steering Group and to also work in partnership with other specialist organisations, helping to shape what we do.”

Linda and Michael have received support from the Alzheimer's Society as well as regularly attending a dementia specific group called a Meeting Centre run by the charity Dementia Matters in Powys, who have four groups operating in different areas of the county.

"They're a community based approach to providing support, advice and information, not only for the person with dementia, whether that's diagnosed or not, but also for the family members, the carers, paid and unpaid carers", Deborah Gerrard, the charity's chief officer told me.

"It's a way of bringing people together to give peer support and get that information advice to them in a timely manner... so every Meeting Centre is person centred."

Run from the Howey Village Hall, the Llandrindod Wells group meet every Monday. After the idea was developed in the Netherlands around 30 years ago, there are now over 70 Meeting Centres around the UK, but only four in Wales, all in Powys.

Established in Wales 8 years ago, Meeting Centres run by Dementia Matters in Powys offer ongoing expert and peer support to people living with mild to moderate dementia and their families, providing a social club where people meet to have fun, talk to others and get help that focuses on what they need.

Deborah says they are proving the international model they follow works, but says timely diagnosis is vital.

"Getting to the stage of going to your doctor to discuss potential cognitive problems is very difficult for most individuals, so that is a huge step for them to take, and then having to wait several months, years, in some cases, to have that form of diagnosis just adds to that anxiety.

"It also stops the person and their families reaching out to support that they need, and the sooner people get that support the better, whether that be in the form of medication or peer support sessions like you find in a Meeting Center.

"It is vital that diagnosis time is speeded up".

The Welsh Government says it will be working on the production of a new Dementia Action Plan throughout next year. The last action plan ran from 2018-2022, but there has not yet been a final report assessing its impact on dementia services in Wales.

"I think we can learn a lot from the years gone by since the first dementia Action Plan in 2018 where it talked about community hubs, but that hasn't really been embraced, particularly by the statutory sector", Deborah says.

"Groups like the Meeting Centers need funding. We need financial support in order to operate and to continue operating and I'd really like to see a push from the Welsh Government to financially support Meeting Centres".

Linda and Michael say they feel isolated and unsupported, other than from charities in their area.

"It has ruined our retirement because we can't go on holiday now as he doesn't cope well in crowds.

"We basically live day to day because it's hard to think about what's coming tomorrow, let alone next year. And nobody's told me what to expect.

"It's like being in the dark and it's scary because I don't know whether I'm helping him or making it worse, because I don't know what I'm supposed to be doing and there's nobody to tell you.

"It's killing me, as well as Michael, to see him like this".

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