95% of councils don’t track people with young-onset dementia

Most local authorities in England don’t separately record people with young-onset dementia, spiking concerns about whether services are meeting their needs. 

Research by Care England and Dementia Forward found 95% of councils surveyed did not record the condition as a distinct category. 

Young-onset dementia affects people who develop symptoms before the age of 65, often while they’re still working or raising a family. 

The report, published on Friday, estimates councils spend £267m a year on care for this group, but says most funding goes towards general services which might not be suitable.

It also found 64% of councils funded care for fewer than a quarter of people with young-onset dementia in their area, while just 10% reported having specialist local support. 

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.’ 

Martin warned care organisations want to help support people affected by the disease but they’re ‘constrained by commissioning frameworks that treat 50-year-olds the same as a 90-year-olds.’ 

The study was based on case studies and Freedom of Information requests to 139 local authorities, 34 integrated care boards and 36 NHS foundation trusts.

It found 76% of councils didn’t mention young-onset dementia in their strategies and only 41% of integrated care boards had a plan that mentioned the illness. 

Jill Quinn MBE, chief executive of Dementia Forward, said: ‘As the leading dementia charity for York and North Yorkshire, we understand the profound impact of young onset dementia on individuals and families. 

‘The average time to diagnosis remans unacceptably long, and too often, people affected [by the condition] are left isolated without the right support.’ 

Karen Thomas, head of young onset services at Dementia Forward, added: ‘For a number of years, people with young onset dementia have made up 7.5% of our caseload in North Yorkshire; the national statistics have now caught up to the same figure.’

Following its publication, the report is calling on the government for a three-to-five year funding commitment and for age-appropriate services. 

Researchers have previously warned young onset dementia is under-recognised – a 2022 study found around 70,800 people in the UK were living with it. 

Image: geralt/Openverse

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