Dementia in Wales: 'The system missed us at every stage'

When Moira Owens from Caernarfon, Gwynedd, heard the words “he has dementia”, her world tilted. Her husband, Idwal, had just been diagnosed with Parkinson’s, and follow-up tests revealed he also has vascular dementia

“It was such a shock when they told me straight out, he has dementia," she said. "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.”

Moira’s story mirrors what many families across Wales say they have experienced: a system that can miss people at every step.

Unlocking the Door

New findings released for Dementia Action Week (18–24 May) by Alzheimer’s Society in its Unlocking the Door Reports* paint a stark picture of delays in diagnosis and gaps in treatment and support.

On average, it takes 3.5 years from first noticing symptoms to getting a diagnosis. Even after a GP referral, there can be a 22-week wait to be seen by a memory clinic. By then, precious time may have been lost.

One in five people report receiving no support at all after diagnosis and families describe being “released into the wild”.

Meanwhile, early signs often go unnoticed: estimates suggest around 15% of people aged 65+ in the UK have early memory problems, yet there is no national system to monitor how many of these go on to develop dementia.

It’s estimated that 51,000 people are living with dementia in Wales today, a figure projected to rise to 70,000 by 2040. Yet Welsh Government data shows only 57% of people with dementia have a formal diagnosis. Access is uneven too, with rates lower in rural areas such as Powys, where just 48% are diagnosed.

Recent data from Alzheimer’s Society Cymru shows the Welsh public wants dementia placed firmly at the top of the political agenda, with clear calls for better diagnosis, improved access to treatments and health and social care ready to meet growing demand.

The findings from more than 1,000 adults surveyed across Wales come as the country continues to record some of the lowest dementia diagnosis rates in the UK, leaving thousands of families without clarity, support or access to treatments.

Ensuring an early and accurate diagnosis remains a critical concern for the people of Wales, with 91% of people who took part in the survey saying they believe that Wales must improve access to timely diagnosis. While 87% support increased investment in diagnostic services.

Though targeting diagnosis alone isn’t enough, with the Welsh public equally agreeing (91%) that it is important people with dementia have the right support to help unpaid carers.

“Right now, we are seeing delays throughout the dementia care system in Wales," said Gemma Roberts, Alzheimer’s Society’s national influencing manager. "Symptoms can be missed, diagnosis can be 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 can miss 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."

Call for action

Gemma added: “We are in a key moment for dementia. New diagnostic tools are emerging which are expected to speed up and improve the accuracy of diagnosis."

Disease-modifying treatments that may help slow the progression of Alzheimer’s disease have shown promising results in clinical studies, with research suggesting they can be used safely and effectively in certain patients.

“Welsh Government action can’t wait," she said. "Alzheimer’s Society Cymru is calling for a bold, ambitious new dementia strategy from the new Welsh Government, one that revolutionises diagnosis and ensures access to quality care, treatments and support, wherever you live.

“That means faster routes to memory assessment, clear referral pathways, consistent prescribing and review of medication, and guaranteed post-diagnostic support for every family.”

Moira continued: “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.”

Moira’s message to decision-makers is simple but urgent. “I want the people making decisions to understand our needs and make dementia a priority,” she said.

Her hope is that the next family who receives a diagnosis will leave that appointment with a clear plan, meaningful support and the reassurance that they have not been forgotten.

If you are living with dementia, or caring for someone who is, your voice can help shape what happens next in Wales.

Share your experience to support campaigning for faster diagnosis and better care at alzheimers.org.uk/your-views

* The Unlocking the Door to Diagnosis Report is informed by a comprehensive programme of evidence gathering conducted between 2025 and early 2026, including five evidence reviews, a series of Memory Assessment Service visits, and a UK-wide GP survey. Draft recommendations were shared for expert feedback with clinicians, commissioners, researchers and people with lived experience of dementia. The report can be read here