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Lewy Body Society - promoting research into Dementia with Lewy bodies (DLB)

With the very welcome spotlight being shone on dementia by the government and the media, it is important that the public and practitioners be aware that the term "dementia" is like "cancer" : it covers a range of distinctive illnesses which all have different characteristics and require different treatment. 

Dementia is a general and not a specific diagnosis. One size - or word - does not fit all. 

When most people think of dementia they think of Alzheimer's. But all dementia is not Alzheimer's. And it was not until Ronald Reagan's diagnosis was announced that the public even began to think that there was anything beyond the generic term "senile dementia. " 

Approximately 60 per cent of all dementia patients suffer from Alzheimer's and it is the most well known. But there are other distinct types of dementia such as dementia with Lewy bodies, vascular dementia and fronto-temporal dementia.

Accurate and early differential diagnosis can sometimes help people live a better life as long as possible. But it can be a life-threatening situation if people with DLB are given the wrong medications, such as certain anti-psychotics.

Dementia with Lewy bodies is also different from Alzheimer's in that the symptoms are not all mental. It's not just memory and it isn't always memory. DLB symptoms include difficulties with visual perception, planning and decision making, as well as physical symptoms including parkinsonism. There are also visual hallucinations and extreme fluctuations of consciousness in DLB, symptoms  which people with Alzheimer's don't usually experience.

Because of the multiple challenges, carer stress is higher with DLB and it costs more to treat.

The Lewy Body Society (registered charity 1114579) was founded in 2006 to support research into and raise awareness of dementia with Lewy bodies amongst the public, health care practitioners and decision-makers. It is information driven and its face is the website

The Society has already sponsored three research projects and has produced podcasts about DLB which can be found on YouTube or by request on a disk.

The Society is small and run entirely by volunteers who have all lost someone to DLB. It has not solicited for contributions;  they are entirely voluntary, often coming as "in lieu of flowers" from funerals. The ever increasing numbers are an indication that more people are being diagnosed. Recently people have been sending repeat donations on the anniversaries or birthdays of their loved ones, whose names are on the website's In Memoriam page.

For further information contact:

Download Resources: Lewy Body Dementia - Referral for a Diagnosis (pdf)

Lewy Body Dementia - Are you worried about dementia? (pdf)


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