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?
Dementia with Lewy bodies is unique because not only is cognition affected, which happens with other types of dementia, but movement and autonomic processes (key involuntary functions such as breathing, heart rate, digestive processes and body temperature) are also affected.
In addition cognitive symptoms, such as hallucinations and problems with visual perception, appear early in the progression of the disease whereas with Alzheimer’s, for example, the same symptoms do not appear until later.
Because these very challenging symptoms occur in the earlier stages of the disease, the loss of independence happens much sooner, which has a significant impact on both the person living with dementia and their caregivers.
Also there are few approved drugs available for the treatment of dementia with Lewy bodies, there is only limited evidence about what treatments work and everyone responds differently. Another problem is that medication prescribed to improve cognition or hallucinations can make movement problems worse and vice/versa. Also people with dementia with Lewy bodies may have a severe reaction to antipsychotic drugs which are often used to treat hallucinations, a common feature of the disease.
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.
- 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.