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.
Articles about Lewy body dementia
- Lewy body diseases – Information about the 3 types of Lewy body diseases.
- How dementia with Lewy bodies affects the brain – Details of the parts of the brain affected by dementia with Lewy bodies, the symptoms and the correlation between the two.
- Diagnosing dementia with Lewy bodies – Information on the criteria used to help determine a diagnosis for probable / possible dementia with Lewy bodies.
- Stages of Lewy body dementia – Our Journey – Information on how Mum’s symptoms progressed.
- 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.
Book about our families journey with Lewy body dementia
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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.
There are 2 charities dedicated to raising awareness about Lewy body dementia, which include lots of useful information about the disease.