Lewy Body Dementia – Raising Awareness

Our Mum died from dementia with Lewy bodies (one of the two types of Lewy body dementias). Before Mum got ill I knew very little about dementia in general and I had never even heard of Lewy body dementia.

Although I don’t claim to be an expert in dementia and have very little experience of Alzheimer’s disease or any other type of dementia, from what I have observed from other residents in the care home where Mum lived, and from what I have read and researched, I truly believe that dementia with Lewy bodies is the most challenging type of dementia to manage.

Why is dementia with Lewy bodies so challenging?

The earlier symptoms of dementia with Lewy bodies are unique and have a significant impact on patients and caregivers. This is because not only is cognition affected, as with other types of dementia, but includes motor (movement), behavioural, and autonomic (bodily functions) features. In addition, dementia with Lewy bodies presents a number of very challenging symptoms from early on in the disease. So the loss of independence occurs early, whereas with Alzheimer’s, for example, the same symptoms do not appear until later in the progression.

Also, treatment of dementia with Lewy bodies with drugs is often problematic. Everyone responds differently, there is only limited evidence about what works, and there are few approved treatments. In addition, medication given to improve mental abilities or hallucinations can make movement problems worse. Similarly, drugs for movement problems may have a negative effect on mental abilities or make hallucinations worse. There are also serious issues with use of antipsychotic drugs for a person with dementia with Lewy bodies.

I now truly believe that to be able to provide adequate care and support for someone with Lewy body dementia, you have to understand the disease. So this section of the website is dedicated to Lewy body dementia, to pass on everything I have learnt, often the hard way! It is also why I have written a book which includes, in more detail, our journey with Mum through her illness. The book includes all the key information I think you need to know if you are caring for someone with this dreadful disease.

Lewy body dementia

Articles about Lewy body dementia

Book about our families journey with Lewy body dementia


Raising awareness about Lewy body dementia

To help raise awareness about Lewy body dementia I have created a range of t-shirts, sweatshirts and other products with the following design. Click here to visit the ‘Just Be Dementia Friendly’ products page. 

Lewy body dementia

There are 2 charities dedicated to raising awareness about Lewy body dementia, which include lots of useful information about the disease.

The Lewy Body Society based in the UK and the Lewy Body Dementia Association based in the USA.