One in five people affected by dementia are being “left in the dark” and have received no health care, social care or financial support, a damning report reveals. A survey by Alzheimer’s Society found that, of those who did receive support, fewer than half were satisfied and only 29% said it was easy to access. More than half believed this situation could be improved with increased support from professional carers trained in dementia.
Professor Fiona Carragher, chief policy and research officer at Alzheimer’s Society, warned that the day-to-day realities of living with dementia “often remain hidden”, despite the condition now affecting almost one million Britons. She added: “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. This report provides the evidence we hope will galvanise society to help solve the UK’s biggest health and care crisis.”
The survey gathered views from almost 3,500 people, including those living with dementia, loved ones and unpaid carers. The findings also highlighted the impact of dementia on unpaid carers.
Some 38% did not feel respected by social care professionals, more than a third reported a decline in their mental health and a quarter felt socially isolated. One in seven did not know of any support they were entitled to.
Gareth Davies, 43, is among thousands of people who are caring for loved ones with dementia. He is a full-time carer for his mum Teresa, 76, who was diagnosed with Alzheimer’s during the Covid pandemic, and his disabled sister.
Remembering the day Teresa was diagnosed, Gareth said: “We were in the garden looking up at the trees, listening to the birds when I told her what the GP had said. We both started crying, our biggest fear becoming reality.
“This diagnosis was life-changing. I became Mum’s carer overnight, also caring for my dad before he passed away and my sister, who developed brain damage in childhood. I needed all the help I could get.”
Gareth reached out to Alzheimer’s Society and was put in touch with a dementia adviser, who provided “invaluable” practical and emotional advice.
He added: “Unfortunately, so many people are left without any kind of support. Watching someone you love receive a dementia diagnosis is heart-breaking. It’s normal not to know who to turn to as you’ve likely never been through something like this before.
“However, leaning on a support network, whether that’s a friend, a healthcare professional or an organisation like Alzheimer’s Society, is the best thing you can do. Help is out there and it’s perfectly fine to ask for it.
“We need to be talking about it more, so everyone affected by dementia, both now and in the future, gets the help and support they deserve.”
The survey also found that two in five people with dementia felt ashamed or stigmatised. And just one third said their experience of the diagnostic process was positive.
A record half a million people living with dementia now have a diagnosis recorded by the NHS. The milestone was passed last month, with figures showing 506,549 had received a formal diagnosis, compared with 490,163 this time last year.
However, one in three people with the condition still do not have a diagnosis.
Long wait times (52%) and seeing multiple healthcare professionals (41%) were among barriers to diagnosis highlighted in the survey.
A significant number of people with dementia were also afraid of receiving a diagnosis (35%), apprehensive about speaking to healthcare professionals (31%), and worried about the impact of diagnosis on daily life (29%).
Prof Carragher said: “An early and accurate diagnosis is vital to enable people living with dementia to access the care, support and treatments they so desperately need.
“Those who have been able to access these treatments experienced benefits, but we simply aren’t diagnosing people early or accurately enough to see current and prospective treatments rolled out widely.
“We are working with governments across the UK to ensure an ambitious diagnosis rate target is implemented, and we are pushing for all care staff to undertake dementia training.”
