Families left without support as charity calls for urgent Welsh Government action
DEMENTIA patients in Wales are being “missed, delayed and abandoned” at every stage of care, according to a major new report published for Dementia Action Week.
Alzheimer’s Society Cymru says people are facing long waits for diagnosis, patchy access to treatment, and a lack of support after being told they have the condition.
The charity says people in the UK wait an average of 3.5 years from first symptoms to diagnosis, including almost six months after being referred by a GP to a memory clinic.
One in five people said they received no support after diagnosis, with some families describing the experience as being “released into the wild”.
The report also found that only half of those prescribed dementia medication remain on it for a year, despite the benefits of continued treatment.
In Wales, Alzheimer’s Society Cymru says 91% of people surveyed believe access to timely diagnosis must be improved.
The charity is calling on the new Welsh Government to publish a bold new dementia strategy covering diagnosis, care, treatment 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.”
The charity says around 51,000 people are living with dementia in Wales, a figure expected to rise to 70,000 by 2040.
Welsh Government figures show only 57% of people with dementia in Wales have a diagnosis. Diagnosis rates are lower in rural areas, including Powys, where the rate is 48%.
The report includes the experience of Moira Owens, from Caernarfon, whose husband Idwal was diagnosed with Parkinson’s seven years ago before further tests revealed he also had 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.”
The findings form part of Alzheimer’s Society’s Unlocking the Door reports, which bring together research, clinical views, data and experiences from people living with dementia and their families.
The charity says failure to improve diagnosis and care will push more people into crisis, increase emergency hospital admissions, and place greater pressure on health and social care services.
Anyone living with dementia, or caring for someone who is, can contact Alzheimer’s Society’s support line on 0333 150 3456. Welsh speakers can call 03300 947 400.
