Seeing the unseen: Rethinking dementia diagnosis (Alzheimer's Research UK, 18 September 2025)

Summary

Dementia is the UK’s leading cause of death, and by 2040, 1.4 million people are expected to be living with the condition. Yet one in three go undiagnosed - denying them vital support, the chance to plan, and the opportunity to join research that could find a cure. Across 2024 and 2025, Alzheimer’s Research UK surveyed more than 500 people affected by dementia and over 160 healthcare professionals to understand the realities of diagnosis. This report shares findings from this process and considers what works, what gets in the way, and what needs to change. 

Content

Key findings Alzheimer’s Research UK highlight in this report are as fololows:

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.

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.”

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.”

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.

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.”

Based on these insights, the report outlines five key priorities to build a diagnosis pathway that is efficient, equitable, and supportive for everyone:

1. Earlier, faster and more accurate diagnosis: cognitive assessments, imaging, diagnosis and support should be provided together during a single visit to a “one-stop shop” clinic – reducing fragmentation and speeding up care.
2. Consistent and integrated diagnosis: diagnostic pathways should be standardised across regions, with shared digital patient records. Where appropriate, memory assessments should be provided in the community, via home visits, outreach clinics and virtual consultations.
3. Improved pre- and post-diagnostic support: dedicated support services should sit alongside clinical appointments, to help guide people through the diagnosis process and beyond.
4. Investment in people and infrastructure: the Government and NHS leaders must commit to targeted investment for more staffing, infrastructure and training in dementia services.
5. Improved access to advanced diagnostics: diagnosis is being held back by outdated assessment methods and limited access to technology – services need to be future-proofed and made ready to rollout promising next-generation tests on the way, such as blood tests to detect Alzheimer’s disease.