A new Alzheimer’s Society survey reveals that one in five people affected by dementia in the UK receive no health, social, or financial support. The report highlights critical gaps in care and calls for urgent improvements in services and awareness
A recent survey by the Alzheimer’s Society has highlighted significant gaps in dementia care across the UK. Shockingly, one in five people affected by dementia receives no health, social, or financial support, while less than half of those receiving assistance feel their needs are fully met. This report highlights the pressing need for enhanced services, increased public awareness, and robust support systems. It’s a call to action to ensure that people living with dementia—and their families—get the care they deserve.
Living with dementia: Providing a voice to 3,500 people
Alzheimer’s Society’s lived experience survey captures the voices of almost 3,500 people affected by dementia, including those living with the condition, unpaid carers, and loved ones.
The findings of the Alzheimer’s Society’s lived experience survey paint a stark picture of the healthcare system, highlighting significant gaps in care, diagnosis, and support. The most alarming revelation is that one in five people affected by dementia in the UK receives no health, social, or financial support. These findings underscore the urgent need for improved services and increased public awareness, which cannot be overlooked.
Professor Fiona Carragher, Chief Policy and Research Officer at Alzheimer’s Society, said: “Almost a million people are living with dementia, yet its scale and the day-to-day realities often remain hidden. 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 help solve the UK’s biggest health and care crisis.”
42% of people with dementia felt ashamed or stigmatised
The survey unearths the barriers to a dementia diagnosis, with just one-third of those surveyed reporting a positive diagnosis experience.
Factors that made the diagnosis process difficult included:
- Long wait times (52%)
- Seeing multiple healthcare professionals (41%)
- Fewer than half were given information about the specific type of dementia they have.
The survey also revealed that stigma could be preventing people from accessing support, with two in five people living with dementia feeling ashamed or stigmatised. This could have resulted in low diagnosis rates due to concerns about what people might think.
The researchers found that 46% of respondents were unsure who to contact for social care support, a figure that increased to 56% among unpaid carers and 62% among ethnically diverse respondents.
Professor Carragher noted: “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.”
Gaps in dementia diagnosis and care
Nearly a third (29%) of individuals living with, or caring for someone with, dementia symptoms but no formal diagnosis had not sought one due to concerns about the impact on daily life—a figure that rises to 49% among ethnically diverse respondents.
The survey also found that 29% of respondents felt social care was difficult to access, with this perception increasing to 48% among ethnically diverse groups.
Among those receiving professional care, only 34% of people cared for at home felt that all or most of their needs were met, compared with 61% of those in care homes, highlighting disparities in support and service provision.
Unpaid carers: Unheard and unsupported
The survey specifically focused on the experiences of unpaid carers. The researchers found that 38% of unpaid carers don’t feel respected by social care professionals – a figure that rises to 60% among carers from ethnically diverse backgrounds.
Figures indicate that 70% of unpaid carers reported that their mental or physical health had been negatively affected, leading to reduced time spent on enjoyable activities and increased social isolation. Despite this, many are unaware of the support they’re entitled to – including one in seven who said they didn’t know of any support at all.
Additionally, 72% of people with dementia and 63% of unpaid carers found the dementia diagnosis process stressful.
