95% of councils can’t track the number of local people with young-onset dementia, new report finds

Care England¹ and Dementia Forward² warn that there may be up to 100,000 working-age people with dementia across England (40,000 more than common estimates suggest). Despite this, 95% of local authorities have no way of recording young-onset dementia (YOD) in their data systems. That is the central finding of A Hidden Population, a new report from Care England and Dementia Forward, published ahead of Young Onset Dementia Awareness Day (24th October).

You can access a press copy of the report here. 

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. Most of this is spent on generic, ‘all-ages’ services, generally designed for people decades older. YOD often involves atypical symptoms, occurring in life stages characterised by careers, young children and mortgages. For those with young-onset dementia, the impact of the condition is often devastating; all-ages support is often unsuited to providing the right support; and the support they need is too often inaccessible.

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, said:

“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 3-to-5-year funding commitment.

Click here to access the embargoed press copy of the report.