Last Updated on November 3, 2026
A new report has found that 95% of councils cannot track the number of local people with young-onset dementia (YOD). The report, A Hidden Population, from Care England and Dementia Forward warns there may be up to 100,000 working-age people with dementia across England, which is 40,000 more people than estimates suggest.
The report is based on case studies and Freedom of Information requests to 139 local authorities, 34 Integrated Care Boards (ICBs) and 36 NHS Foundation Trusts. Findings include:
- 95% of local authorities do not record YOD as a distinct category.
- 64% of local authorities fund care for fewer than a quarter of the people with YOD in their area.
- Just 10% of local authorities report having any specialist YOD support locally.
- 76% of local authorities make no specific mention of YOD in their dementia strategies.
- Just 41% of ICBs have a strategy that mentions YOD.
- 70% of mental health trusts reported at least one detention under the Mental Health Act of a person with YOD in the past 12 months.
The report estimates that councils spend around £267m a year on YOD care, mostly on generic, 'all-ages' services, generally designed for people who are decades older. YOD often involves atypical symptoms, occurring in life stages characterised by careers, young children and mortgages. For those with young-onset dementia, all-ages support is often unsuited to providing the right support and the support they need is too often inaccessible.
Commenting on the report findings, Professor Martin Green OBE, Chief Executive of Care England, said, ‘Our collective failure is fundamentally one of visibility. What is uncounted in our data inevitably remains unplanned for in our communities. Care organisations want to deliver life-enriching support but they are routinely constrained by commissioning frameworks that treat a 50-year-old the same as a 90-year-old.’
Jill Quinn MBE, Chief Executive of Dementia Forward, adds, ‘North Yorkshire is not unique. The gap between 173 and 449 shows a significant under-recognition of demand, and systemic flaws in how YOD is identified and recorded. Without accurate data, families get little support until they reach crisis point.’
The report calls for better recording of young-onset dementia across data systems and commissioning of age-appropriate services. It also calls for standardised diagnostic pathways, updated national clinical coding and a three- to five-year funding commitment.
It comes at a time when Government is increasing investment in dementia diagnosis. On 2nd October, the Government announced up to £80 million for its Dementia Challenge, which will test nine technologies and approaches aimed at speeding up diagnosis, with an ambition for 92% of people to receive a diagnosis within 18 weeks of referral. However, the Care England and Dementia Forward report highlights a separate challenge: ensuring that people diagnosed with young-onset dementia can be identified in local data and access appropriate care and support.
Read the report here.
In other news, the Care Quality Commission (CQC) has published its latest annual State of Care report, revealing a social care market in flux.