At the end of World Alzheimer’s Month, the Lewy Body Society is warning that people with Lewy body dementia – the second most common type of dementia in older people after Alzheimer’s – are being failed.
According to experts, Lewy body dementia accounts for 10–15% of all dementia cases. In England, up to 110,000 are estimated to have the condition, yet only 15,000 are recorded with a diagnosis. This means thousands are living without answers, and without access to the care that a diagnosis can unlock.
The chief executive of Lewy Body Society Jacqui Cannon said: “When people hear the word dementia, most think only of Alzheimer’s. But Lewy body dementia is widespread, devastating, and still too often missed. Families are left in limbo, struggling without answers. We want everyone to understand that it’s never too early to diagnose, and never too late to diagnose.”
Lewy body dementia has a distinctive set of symptoms, which can make it particularly hard to diagnose. Alongside problems with memory and thinking, people often experience fluctuating levels of alertness, vivid visual hallucinations, sleep disturbances, and movement problems similar to Parkinson’s disease. These overlapping symptoms mean the condition is frequently mistaken for Alzheimer’s or Parkinson’s, delaying the right support.
For Alistair Leaver, whose wife Elspeth was eventually diagnosed, the journey took a year: “Twelve months after first visiting the doctor, we had a diagnosis. Don’t put off going to the doctor when you suspect the onset of dementia. It takes a long time to get a definitive diagnosis. You need to know to start planning.”
Paul Stone’s wife Sue was first labelled with Alzheimer’s: “They assessed her based on a half-hour discussion with a nurse and without having received the results of a scan. ‘I’m sure it’s Alzheimer’s,’ they said. Later, a more experienced psychiatrist reviewed Sue and said, ‘I’m changing the diagnosis to Lewy body’.”
Paul added: “Accurate diagnosis matters, because without it, you’re fighting blind.”
For Rob Garrett, the breakthrough only came when he refused to leave hospital without answers for his wife Jane: “In 2018, she had been discharged with no help, no support, no care, no nothing. I said, I’m not leaving this hospital until there’s a diagnosis and there’s a care package in place. Jane and I and the family need the care and support – we’re not going to be left in the lurch like we were last time.”
He finally received the confirmation he had suspected all along: “The consultant neurologist said, ‘I think it’s Lewy body dementia’. Once our diagnosis was made, we then had the support and access to the Admiral Nursing Team. I knew about them, but I couldn’t access any services locally at the time because there was no diagnosis.”
Kerry Hine, pictured, also describes battling for recognition of her husband Charles’s symptoms: “We kept going to the doctor, but they just did short-term memory tests. That’s not how this works. By the time Charles was finally sent to the memory clinic, I had already worked out he had Lewy body dementia.”
She added: “Doctors need to be trained. Healthcare workers need to be trained. His healthcare team didn’t understand Lewy body dementia. I was literally printing out the management toolkit and journal articles to wave in their faces.”
The Lewy Body Society is calling for faster access to diagnostic scans, better training for GPs and hospital staff, and more support for families from the moment they first raise concerns.
Jacqui Cannon said: “We hear the same stories again and again. Families waiting months or years. People being told it’s Alzheimer’s when it’s not. Others discharged without answers. Yet the moment a proper diagnosis is given, doors open – to Admiral Nurses, to social care, to planning for the future. This “diagnosis gap” leaves thousands without recognition or support. That’s why we are raising our voices to mark the end of World Alzheimer’s Month.”
