Dementia Support Line
Real stories
Dementia with Lewy bodies needs better health care at every level
Kerry Hine, whose late husband had dementia with Lewy bodies, says people affected by the condition need improved support.
The symptoms of dementia with Lewy bodies (DLB) can be different to other types of dementia.
We visited our GP several times after we first noticed that something was wrong with my husband Charles in 2016. But they just tested his short-term memory, which wasn’t a problem.
Even after Charles was finally referred to a memory clinic in 2019, he was diagnosed with mild cognitive impairment.
It wasn’t until September 2020 that DLB was finally diagnosed.
Connecting the dots
In the end, it was me who first connected the dots about Charles’s symptoms and worked out it was dementia with Lewy bodies.
By this time, he was twitching a lot at night and flailing his arms in his sleep.
I’d had to buy a crash mat to go by our bed because he fell out due to REM (rapid eye movement) sleep disorder.
I’m able to read scientific journal articles and dense medical information. But that’s because I have experience as an academic study skills tutor. Most people wouldn’t be in the position to do this.
Use the toolkit
I’d like to see a resource called the DIAMOND Lewy Toolkit embedded in healthcare.
It was funded by the National Institute for Health and Care Research and developed by researchers from Newcastle University and the University of Cambridge. It aims to improve the diagnosis and management of dementia with Lewy bodies.
Awareness doesn’t only need to improve among GPs. When Charles was in hospital, a consultant refused to listen when I said that research shows gastro-intestinal blockages are very common in people with DLB.
I asked him to check the toolkit, which I’d printed and put in Charles’s file. But he ignored me.
The best specialist support we received was from Rachel, a Consultant Admiral Nurse – she’s the only one in the whole of the UK, which is unacceptable.
Things must change
All the way through Charles’s condition, I was just pushing, pushing, pushing. I was made to feel like a nuisance.
My advice to anyone in our position is educate yourself. Keep a log of every symptom. Don’t take no for an answer and be prepared for a long battle.
Charles was such an intelligent, smart, witty, decent man. As an accomplished musician, conductor and higher education manager, people looked up to him.
It’s disgraceful that he had to suffer unnecessary pain and indignity.
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