Landmark reports expose a dementia care system failing patients in Wales at every stage

Nation.Cymru Team

New findings published for Dementia Action Week (May 18-24) have found that people with dementia routinely face prolonged delays to diagnosis followed by gaps and stark inequalities in treatment and support.

Alzheimer’s Society Cymru says delays of this scale have quietly become routine for dementia, Wales’s biggest killer, but would not be accepted for cancer or heart disease.

This one-of-a-kind analysis to examine the entire dementia and treatment pathway end-to-end reveals patients are not just delayed or ignored once, but are repeatedly being missed for opportunities for diagnosis, treatment and support at every stage.

The missed, delayed, abandoned findings across the UK:

• Diagnosis delays: From first symptoms to diagnosis, people wait an average of 3.5 years – with almost six months of that spent waiting for diagnosis after GP referral to a memory clinic.
• Early signs going unnoticed: Estimates suggest around 15% of people aged 65+ in the UK have early memory problems, yet there’s no national system in place to monitor progression to dementia.
• Left without support: One in five say they received no support after diagnosis, with families describing being “released into the wild”.
• Treatment inconsistencies: Only half of those prescribed dementia medication remain on it for a year, despite benefits of continued treatment.

Recent data from Alzheimer’s Society Cymru shows the Welsh public wants dementia placed firmly at the top of the political agenda.

The findings from more than a thousand adults surveyed across Wales found that 91% believe that Wales must improve access to timely diagnosis.

The charity is calling on the new Welsh Government to publish and deliver a bold and ambitious new dementia strategy that revolutionises diagnosis and access to quality care, treatments and support.

Gemma Roberts, Alzheimer’s Society’s National Influencing Manager, said:“Right now, we are seeing delays throughout the dementia care system in Wales.

“At every stage, people are missed. Symptoms are missed, diagnosis is delayed, and support often comes too late to be that lifeline so desperately needed by people with dementia and their loved ones.

“This is not a backlog problem. It is a system that is missing people at every stage and while the system waits, dementia progresses – stealing time, independence and dignity.

“While the focus is on waiting lists, people with dementia aren’t even in the queue. Welsh Government action can’t wait.”

Follow up tests

Moira Owens is from Caernarfon, Gwynedd. Her husband Idwal Owens was diagnosed with Parkinson’s seven years ago, then follow up tests revealed he also has vascular dementia.

Moira said: “It was such a shock when they told me straight out, he has dementia – I wasn’t expecting it. Then I asked what they were going to do about it but there was no help, no advice, no name for me to contact.

“He wasn’t offered any treatment. We left the appointment without any support or guidance at all.

“I want the people making decisions to understand our needs and make dementia a priority. We must shout loud about dementia. It’s not like when you’ve broken your arm or you’ve hurt your face – it’s not obvious, you can’t see it. It’s hidden. I want leaders in Wales to sit up and listen.

“My hope is that people will not be in the same place as me when Idwal was diagnosed. I don’t want to see the partners, friends and family of people who are newly diagnosed left on their own.”

Delays

On average, across the UK people wait 3.5 years from first symptoms to diagnosis, including a 22-week wait after referral and even then, one in five report receiving no support at all after diagnosis like Moira and Idwal.

The analysis shows how these failures compound: many people miss early warning signs, face long delays to diagnosis, and then fail to receive recommended treatments or follow-up care. Access varies widely across Wales with diagnosis rates lower in rural areas.

It’s estimated that 51,000 people are living with dementia in Wales, rising to 70,000 by 2040. Welsh Government reports that only 57% of people in Wales have a diagnosis, and diagnosis rates are even lower in rural areas like Powys which is 48%.

Without Welsh Government action to fix the diagnosis and care system, the charity says delays will continue to push people into crisis faster, increase emergency hospital admissions, and place growing strain on health and social care services.

The findings form part of Alzheimer’s Society’s ‘Unlocking the Door’ reports, which bring together published research, clinical perspectives and data, and insight from people with lived experience of dementia. They are released ahead of the charity’s biggest annual fundraising campaign in June – the Forget Me Not Appeal – raising vital funds for research and to support people affected by dementia.

If you are living with dementia, or caring for someone who is, share your story with us to support our campaigning in Wales. Visit alzheimers.org.uk/your-views32