Left in the dark’: One in five people affected by dementia get no support, as the true impact of dementia is laid bare in a new report

One in five people affected by dementia have received no health care, social care or financial support, a new in-depth report by Alzheimer’s Society Cymru has found.

Of those who received support, fewer than half were satisfied with it, with only 29% saying dementia-related care was easy to access.

More than half believe this situation could be improved if increased support from professional carers trained in dementia was available.

Published ahead of World Alzheimer’s Month, Alzheimer’s Society Cymru’s Lived Experience Survey captures the voices of almost 3,500 people affected by dementia, including those living in Wales. The responses are made up of those living with the condition, unpaid carers, and loved ones.

In the charity’s largest ever survey of people living with and affected by dementia, the report exposes a system buckling under pressure and serious gaps in care, diagnosis, and public awareness – leaving too many families to cope alone.

Professor Fiona Carragher, Chief Policy and Research Officer at Alzheimer’s Society, said:

“Almost a million people are living with dementia in the UK, yet its scale and the day-to-day realities often remain hidden. These findings tell us that far too many people are going without the help they need – whether it’s support after a diagnosis, trained care professionals, or someone to turn to when things get hard.

“As the UK’s leading dementia charity, we are committed to giving a voice to those who feel unheard, left in the dark and struggling to cope. This report provides the evidence we hope will galvanise society to solve the UK’s biggest health and care crisis.”

Around 50,000 people are living with dementia in Wales and around half of them don’t have an official diagnosis.

The survey, conducted by Walnut Unlimited, lays bare some of the barriers to a diagnosis as just one third report that their experience of the diagnosis process was positive.

Key findings from the report include:

• One in five people received no support after diagnosis
• Less than half of those who did get help were satisfied with it
• Only 29% saif dementia-related care was easy to access
• 52% faced long wait times for diagnosis
• 38% of unpaid carers don’t feel respected by social care professionals – rising to 60% among carers from ethnically diverse backgrounds
• Over one third of carers report a decline in mental health, and nearly a quarter feel socially isolated

The report highlights that the stigma surrounding dementia could be preventing people from accessing support, as two in five people living with dementia feel ashamed or stigmatised. As a result, many have not sought a diagnosis because of concerns about what their families and friends will say if they are diagnosed with the condition.

Experiences vary widely, but some groups face particular challenges. Among unpaid carers, 38% said they don’t feel respected by social care professionals – a figure that rises to 60% among carers from ethnically diverse backgrounds.

Alzheimer’s Society Cymru will use the findings to inspire governments, local authorities, communities and the public to take action. The charity is also encouraging people across Wales to find out more about its Dementia Friends programme, the biggest ever initiative to change people’s perceptions of the condition and reduce stigma.

Anne-Marie Duff, actor and Alzheimer’s Society ambassador whose brother Eddie is living with early-onset Alzheimer’s disease, said:

“It’s shocking just how many people still feel isolated and helpless, receiving little support from the social care system. 

“I can absolutely relate, and I encourage anyone who feels the same to join the fight. We must make dementia a priority, for everyone affected by the condition – those living with it, and their families, friends and carers.” 

Professor Carragher said Alzheimer’s Society, the UK’s leading dementia charity, is calling for rapid improvements to dementia diagnosis and support.

“For decades dementia has suffered from a lack of attention and investment. It’s been seen as too complex, too expensive, and too hopeless. We’re leading the way by providing the evidence and delivering support to those who need it, but it will take a society to beat dementia.

“Alzheimer’s Society brings together carers, researchers, volunteers, fundraisers, politicians, Dementia Advisers, and support staff. We all have a role to play in ending the devastation dementia causes.”

To join the campaign to end the devastation caused by dementia, visit alzheimersociety.org.uk. Alzheimer’s Society Cymru is here for everyone affected by dementia. Call their Support Line on 0333 150 3456, if you speak Welsh call the Welsh-speaking support line on 03300 947 400, or visit alzheimers.org.uk