Dementia is the greatest health challenge of our time. It’s the UK’s leading cause of death — and by 2040, 1.4 million people are expected to be living with the condition.
Yet right now, tens of thousands of people with dementia in the UK are living without a formal diagnosis. Many face long, confusing and fragmented journeys through NHS services just to get answers. Without a diagnosis, people are denied vital support, the chance to plan for the future, and the opportunity to join research that could find a cure.
The new Alzheimer’s Research UK [1] Report – Seeing the unseen: Rethinking dementia diagnosis [2] – amplifies the voices of those at the heart of this challenge. Across 2024 and 2025, we worked with over 500 people affected by dementia and more than 160 healthcare professionals working in NHS dementia services to understand the realities of diagnosis — what works, what gets in the way, and what must change.
Their insights are powerful and often painful. If you agree, help us campaign for change by signing our petition [3] to ensure dementia diagnosis is a right, not a waiting game.
Seeing-the-Unseen-Rethinking-Dementia-Diagnosis-Online [4]Here’s a snapshot of ARUK discovered:
1.Diagnosis matters
Nine in 10 (91%) healthcare professionals agreed a formal diagnosis benefits patients, and almost all (98%) said it benefits families and carers. Respondents recognised the need for an early diagnosis “so that treatment can start”, even in the absence of a cure.
For people with dementia and their loved ones, gaining insight into the changes in behaviour also helped with their own feelings about the situation. The ability to put a “name to it” and have a clear understanding of the condition was seen as crucial for managing the situation effectively.
2. But the system isn’t working as it should
Fewer than a third (27%) of healthcare professionals felt current diagnostic pathways are fit for purpose. Respondents described the system as “appalling”, “shameful” and “broken”, with many people “left to come to terms with the diagnosis alone.”
They consistently highlighted a lack of funding and staff, describing services as “under-resourced”, with “not enough staff to run clinics due to a massive rise in referrals.”
3. Staff are struggling to provide the care they want to give
Fewer than half (43%) of healthcare professionals feel able to provide patients with the best level of care. Respondents spoke of a lack of “seamless communication between health and social care services” which often leaves people to “fall through the cracks” and leads to “delays in diagnosis, inconsistent care, and confusion for families who are left trying to coordinate everything on their own.”
4. Families face disjointed and confusing journeys
People living with symptoms of dementia described a gradual and often confusing journey. One in three said their symptoms had been present for more than a year before help was sought. Respondents described feelings of frustration and a “loss of control” over their lives, with guilt and fear of “becoming a burden.” Somone living with a dementia diagnosis described the wait as “tedious” and “worrying” as they recognised their symptoms were increasing in frequency and severity.
5. People wait too long for a diagnosis
Sadly, one in five people (22%) were still waiting more than two years for a diagnosis after visiting their GP for help. One respondent, who is still seeking a diagnosis, said: “My mum is struggling with day-to-day life, and there is nothing we can do about it. We can’t even officially put a name to it. It’s devastating watching what is happening with no answers, no support. We desperately need the reassurance of a diagnosis, so at least we know.”
Samantha Benham-Hermetz, Executive Director at Alzheimer’s Research UK, said NHS staff working in dementia services “do an incredible job in very difficult circumstances” and are deeply committed to providing the best possible care.
But, she said, they are too often being let down by “a system that isn’t keeping pace with the scale of the challenge”. With nearly a million people living with dementia in the UK, she warned, “we cannot afford for diagnosis to remain slow, unequal and unfit for purpose.”
That’s why, through our Dementia Unseen campaign, we’re calling on Government to ensure everyone who needs one can access an early and accurate dementia diagnosis.
Launched in June, the petition has already gained support from over 45,000 people, including broadcaster Anneka Rice [5].
The campaign calls for GP referrals to a specialist within six weeks, with a diagnosis and treatment plan in place within 18 weeks. It also urges faster adoption of new technologies, such as blood tests, [6] and better use of healthcare data to speed up and improve diagnosis. Our full Blueprint for Dementia Diagnosis [7] outlines a bold, evidence-based plan to ensure everyone affected by dementia can access a fast, fair, and accurate diagnosis— empowering people to access support, join research, and benefit from new treatments.
Add your name [3] to the petition calling for early, accurate dementia diagnosis
Our health information [8] is available to everyone who has questions about getting a dementia diagnosis.
About the surveys
The two surveys underpinning this report were co-designed by people affected by dementia, healthcare professionals, Alzheimer’s Research UK and health research experts at Thiscovery. They were shared through a range of direct communications, networks and channels, meaning respondents were self-selecting rather than randomly chosen.
As a result, the findings are not representative of the wider UK population and cannot be generalised. The views and experiences shared reflect only those who took part, and may differ from others who did not complete the surveys.
However, this does not diminish the value of their insights. Together, these responses offer a powerful picture of the experiences and challenges people face when seeking a dementia diagnosis.
You can read the full ARUK report on dementia diagnosis here: https://www.alzheimersresearchuk.org/news/delays-and-gaps-in-dementia-diagnosis-revealed-in-new-survey/ [9]