Dementia diagnosis is key to making most of millions

Friday 26 October 2012 For immediate release

The Lewy Body Society, the only European charity focused exclusively on Lewy body dementias, the second most common type of dementia, warmly welcomes the Health Minister’s pledge to invest £50M on dementia care and urges him to ensure understanding of the different types of dementia is central to the training of health and social care staff.

“Not all dementias are the same,” explains Professor Ian McKeith, President of the Lewy Body Society who led the international work in the 1990s to classify the Lewy body dementias, which account for one in six cases of dementia. “Getting the diagnosis right can make a huge difference to people with dementia and their families and can potentially save the NHS lots of money.”

“My husband went undiagnosed for eight years,” recalls Sue Berkeley, whose husband, Tony, a former art lecturer, has dementia with Lewy bodies. “It was just like being in a wilderness in a thick mist. We wasted so much energy going down useless avenues and Tony must have cost the services a fortune going round and round – GP, mental health services, adult social care, sleep clinic, geriatrician, neurologist, Relate, to name but a few. He was tested many, many times for Alzheimer’s using a Mini Mental State Examination but this was totally inadequate for diagnosing his Lewy Body condition.”

Like other dementias, the core problem with the Lewy body dementias is a progressive mental decline serious enough to interfere with normal daily activities, but their distinctive features include fluctuating cognition, visual hallucinations and spontaneous parkinsonism (slow movement, stiffness and falls), as well as problems with the body’s self-regulation of breathing, sweating, swallowing, digestion and blood pressure.

“It’s vital people understand the fluctuating nature of Lewy body dementias,” stresses Mrs Berkeley. “In the early days, one morning Tony could have delivered a lecture; the next day, he couldn’t brush his teeth. The fluctuation means he can no longer make a reliable decision about his future wishes for care and legal matters. If people had recognised his dementia at the start, Tony and I would have had a chance to plan ahead.”

“Loss of memory may be much less evident in the earlier stages than in Alzheimer’s,” explains Professor McKeith, “which is why staff doing assessments for diagnosis, should use tests that detect other sorts of problems.”

Sue Berkeley agrees, “Tony knew what day of the week it was and could remember the name of the Prime Minister. He needed people to put two and two together about all the other changes in his thinking and behaviour.”

Cecilia Yardley, Senior Partnerships Officer for the Lewy Body Society concludes, “Having an accurate diagnosis opens the door to the right treatment and support and gives people with dementia and their families more control of their lives. Improving dementia care home environments is very important, but to maximise this investment, staff must have a fuller understanding of dementia. Our message to Jeremy Hunt and his colleagues is, ‘When you’re planning how to invest use this money, remember the Lewy body dementias’”.

ENDS

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Notes to Editors

1. The Lewy Body Society is the only UK charity focused exclusively on Lewy Body Dementias. It funds research, raises awareness of this type of dementia, has an online community and, in partnership with Parkinson’s UK, offers information and helpline support to the public and works with healthcare professionals and service providers to improve the support and care for people with Parkinson’s Dementia and Dementia with Lewy Bodies.
2. ‘Lewy Body Dementias’ is a term which covers two conditions that have a similar array of symptoms: Parkinson’s Disease with Dementia (PDD) and Dementia with Lewy Bodies (DLB). Clickhere for more details.
3. Dementia with Lewy Bodies was classified in 1996. Click here to read more.