Just Be Dementia Friendly

Before Mum became ill I had never even heard of Lewy body dementia or dementia with Lewy bodies. When Mum was diagnosed my first reaction was ‘what is Lewy body dementia?’ and I am now passionate about raising awareness. This section is dedicated to Lewy body dementia and includes all the key information I learnt throughout our journey with Mum.

What is Lewy body dementia?

There are 2 types of Lewy body dementias as follows:

• Dementia with Lewy bodies – in which cognitive (thinking) symptoms appear within a year of movement problems.
• Parkinson’s disease dementia – in which cognitive symptoms develop more than a year after the onset of movement problems.

Together dementia with Lewy bodies and Parkinson disease dementia are described as Lewy body dementia.

The main difference between the two Lewy body dementias, which essentially share the same array of symptoms, is how the disease starts i.e. whether the movement or cognitive problems occur first as detailed above. The other main differences are:

• In dementia with Lewy bodies, tremor does not occur early, and is less severe than in Parkinson’s.
• In dementia with Lewy bodies, problems with the autonomic nervous system are more prominent than in Parkinson’s disease dementia.
• In Parkinson’s disease dementia psychiatric symptoms (e.g., hallucinations, delusions) appear to be less frequent and/or less severe than in dementia with Lewy bodies.
• Dementia with Lewy bodies may progress more quickly than Parkinson’s disease dementia.

Articles about Lewy body dementia

• Lewy body diseases – Information about the 3 types of Lewy body diseases.
• Stages of Lewy body dementia – Our Journey – Information on how Mum’s symptoms progressed.
• Lewy body dementia vs Alzheimer’s disease – Information on why dementia with Lewy bodies is more challenging in the earlier stages than Alzheimer’s disease.
• The most challenging symptoms of dementia with Lewy bodies – Details of the symptoms we found most challenging and upsetting to manage.
• Why Lewy body dementia symptoms may deteriorate – Information on some of the key causes of worsening symptoms.
• Diagnosing dementia with Lewy bodies – Information on the criteria used to help determine a diagnosis for probable / possible dementia with Lewy bodies.

Raising awareness about Lewy body dementia

Following Mum’s death I wrote a book about our journey with Mum through her illness. The book includes all the information about dementia with Lewy bodies that you will need to know if you or someone you love is affected by this horrible disease.

In addition 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. 

There are 2 charities dedicated to raising awareness about Lewy body dementia. Their websites 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.