182: The 'D' Word with Pete Hill - Episode 182182: The 'D' Word with Pete Hill - Episode 182
UK Health Radio Podcast
Pete Hill talks with dementia nurse Neil O'Lingshig about the high dementia risk among people with learning disabilities and the gaps in support they face. The conversation looks at missed diagnoses, practical tools for carers, and the need for more coordinated services and training.
35:35•18 Sept 2026
Hidden Dementia: Learning Disabilities, Missed Diagnoses and One Nurse’s Mission
Episode Overview
- Many people with learning disabilities are not known to services, increasing the risk of undetected dementia until crisis point.
- Dementia can present differently in people with learning disabilities, so carers need specific training and tools to spot early changes.
- Baseline assessments and regular reviews from around age 30, especially for people with Down syndrome, help identify meaningful changes over time.
- Accommodation that suits independent living may be completely unsuitable once dementia progresses, so future care needs must be planned early.
- Joined-up pathways between dementia and learning disability services, and mandatory dementia awareness training, could reduce distress for families and staff.
“There is what they call the hidden majority in this country… they are essentially ghosts in the system.”
What makes a recovery story truly inspiring? Here, the focus isn’t alcohol, but the huge challenge of dementia in people with learning disabilities – and how one passionate nurse is trying to change the system before crisis hits. Pete Hill chats with dementia nurse and trainer Neil O'Lingshig, who started his career as a marine biologist and wildlife filmmaker before realising that “I just loved” hands-on care.
That unusual background now helps him digest research and turn it into simple, usable tools for carers on the front line. The episode centres on a stark warning: many people with learning disabilities are, as Neil puts it, “essentially ghosts in the system” and at high risk of developing dementia without anyone noticing until things reach breaking point.
You’ll hear about families quietly coping at home, ageing parents caring for adult children, and even people with learning disabilities trying to look after a parent who now has dementia. Neil explains how dementia looks different in this group, why diagnosis is often delayed, and how “diagnostic overshadowing” means symptoms get written off as pain, anxiety or behaviour rather than brain changes.
He talks through his BASELINE framework for spotting early signs and his ambition to build an online platform so carers can record changes and hand a clear report to health professionals. There’s also a frank look at system gaps: dementia services and learning disability services passing people between them, patchy care pathways, and brilliant pockets of practice that no one else hears about.
Neil’s solution is simple but ambitious – more coordinated training, clear post-diagnostic pathways, and spaces where clinicians, researchers, carers and families can actually work together. If you care about vulnerable people on the edges of health and social care, this conversation might leave you asking: what small step could you take to make sure they’re not ghosts in the system anymore?
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