New findings published today by Alzheimer’s Society reveal that people living with dementia are routinely facing prolonged delays to diagnosis, followed by major gaps and stark inequalities in treatment and support — prompting fresh calls for dementia to be treated with the same urgency as other major conditions.
The charity warns that delays of this scale have quietly become normalised for dementia, now the UK’s biggest killer, despite the fact such delays would be considered unacceptable for conditions such as cancer or heart disease.
The analysis – described as one‑of‑a‑kind – is the first to examine the entire dementia diagnosis and treatment pathway, revealing that people are not delayed once, but are repeatedly missing opportunities for diagnosis, treatment and support at every stage of their journey.
Alzheimer’s Society describes a system in which warning signs are missed, referrals are slow, and care too often falls away after diagnosis.
The report highlights a series of systemic failures:
- Diagnosis delays: From first symptoms to diagnosis, people wait an average of 3.5 years, including almost six months waiting after referral from a GP to a memory clinic.
- Early signs going unnoticed: Nearly 250,000 people in England have been diagnosed with early memory problems, yet there is no national system to track progression to dementia. Almost 75% of GPs report long waits for diagnosis.
- Left without support: One in five people say they received no support at all after diagnosis, with families describing being “released into the wild”.
- Treatment inconsistencies: Only half of people prescribed dementia medication remain on it after a year, despite clear evidence that continued treatment is beneficial.
On average, people experience a 22‑week wait after referral, and even once diagnosed, many receive little or no follow‑up care.
The findings show how failures in the system compound over time. People miss early warning signs, wait years for diagnosis, and then fail to access recommended treatment or ongoing support.
Access to diagnosis and care varies significantly depending on where people live, their level of deprivation and ethnic background, reinforcing existing health inequalities.
Around one million people in the UK are currently living with dementia — a figure expected to rise to 1.4 million by 2040. The condition already costs the UK £42 billion a year, with that figure projected to more than double to £90 billion by 2040.
Without urgent action to fix the diagnosis and care pathway, Alzheimer’s Society warns that continued delays will:
- Push people into crisis more quickly
- Increase emergency hospital admissions
- Place even greater strain on health and social care services
The charity is calling on the Government to treat dementia like other major conditions, including the introduction of clear national targets for early diagnosis and action to ensure equal access to treatment and post‑diagnosis support without delay.
Alzheimer's Society Chief Executive, Michelle Dyson, said:
“Dementia care in the UK is stuck in a system of delay, denial and neglect. In the digital age of instant answers, people are still waiting far too long for a diagnosis of the country’s biggest killer. That would never be tolerated in cancer care, yet for dementia it has become routine.
“At every stage, people are missed. Symptoms are missed, diagnosis is delayed, and support often comes too late to be that lifeline so desperately needed by people with dementia and their loved ones.
“This is not a backlog problem. It is a system that is missing people at every stage and while the system waits, dementia progresses - stealing time, independence and dignity. While politicians race to cut waiting lists, people with dementia aren't even in the queue. Government action can’t wait.”
The findings form part of Alzheimer’s Society’s ‘Unlocking the Door’ report series, which brings together the charity’s research, clinical insight and the lived experience of people affected by dementia.
They are published ahead of the charity’s Forget Me Not Appeal in June – its biggest annual fundraising campaign – which raises vital funds to support people living with dementia and their families.
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