Last Updated on September 2, 2025
Alzheimer’s Society has issued a call for rapid improvements to dementia diagnosis and support as new evidence has been published. According to the charity, one in five people affected by dementia have received no health care, social care or financial support. Of those who received support, fewer than half were satisfied with it, with only 29% saying dementia-related health 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’s lived experience survey captured the voices of almost 3,500 people affected by dementia, made up of those living with the condition, unpaid carers and loved ones. The charity reports that the findings expose a system buckling under pressure and serious gaps in care, diagnosis and public awareness – leaving too many families to cope alone.
More than a third of people living with dementia in the UK don’t have an official diagnosis, the survey found. 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.
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.
- It also highlights that people living with dementia are afraid of receiving a diagnosis (35%), apprehensive about speaking to healthcare professionals (31%), and worried about the impact of diagnosis on daily life (29%).
The report highlights that stigma 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.
Seven in ten say that caring has negatively impacted their lives, with over a third reporting a decline in their mental health and a quarter feeling socially isolated. Despite this, many are unaware of the support they are entitled to – including one in seven who said they did not know of any support at all.
Alzheimer’s Society will use the findings to inspire governments, local authorities, communities and the public to take action. The charity is also working to improve understanding of dementia amongst the public with our Dementia Friends programme, the biggest ever initiative to change people’s perceptions of the condition and reduce stigma.
Commenting on the publication of the new survey findings, 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.
'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.'
To read and download the full lived experience survey 2025 report, click here.
In other news, research by finance experts has revealed that health and social care workers are the worst affected by workplace illness.