As many of you know this month is Alzheimer’s Awareness Month. So, somewhat counter intuitively, I have decided to have a look at other form of dementia.    In this case I’d like to focus on a condition called Dementia with Lewy Bodies.

Dementia (and this form of dementia in particular) has been on my mind for the last few weeks.  There are a couple of reasons for this.  Firstly as I get older my family members age as well.  Secondly because the man after whom this medical condition is named (albeit some decades apart) went to the same medical school as my cousin.

So I wanted to look at Dementia with Lewy bodies a bit more closely.

As you know Alzheimer’s disease is not the only type of dementia.  In fact Dementia with Lewy bodies may be responsible for around 10% of dementia cases.  Though it should be noted that typically in only 4% of cases are actually diagnosed as Dementia with Lewy bodies (DLB) by healthcare professionals.  So there is more than a bit of uncertainty about a diagnosis.

Okay so let’s start from the beginning.  What exactly are Lewy bodies?

Lewy bodies are “tiny deposits of protein in nerve cells” – currently scientists are not clear as to why they appear.  Though, in fact, they are present in both DLB and Parkinson’s disease.  In fact DLB shares symptoms with both Alzheimer’s disease and Parkinson’s disease.  And also with some other progressive neurological conditions as well.  As of today scientists are still unclear as to how Lewy bodies operate.  Thought it does seems that the Lewy bodies interfere with chemical signals between nerve cells.

So what are the symptoms of Dementia with Lewy bodies?

As with Alzheimer’s disease people with DLB suffer from memory and judgement issues but they also have issues with concentration and visual perception.  By visual perception we mean how a person sees objects in space and general recognition of those objects.

As with Parkinson’s they may suffer from tremors, slowed-down movements and stiff limbs.

In some cases the patient may suffer from hallucinations.  Fatigue and disrupted sleep is also very common for person with Dementia with Lewy Bodies.  And in a few cases falling and fainting will occur.

Many patients suffer from swings in concentration.  This might mean a swift change from general alertness to simply just starring into space.

While Dementia with Lewy Bodies’ symptoms can be treated current there is no cure for the condition.  Therapies are generally used for particular symptoms so treatment regimens will vary for patient to patient.  For example Acetylcholinesterase inhibitors can be used for cognitive dysfunction, hallucinations and drowsiness.

As with other neurological conditions physiotherapy can be used alongside occupational therapy. And in many cases speech and language therapy as well.

Patients may also be exposed to other therapies. Cognitive stimulation which involves taking part in activities and exercises designed to improve memory, problem-solving skills and language ability. Reality orientation therapy reduces feelings of mental disorientation, memory loss and confusion, while improving self-esteem.

It should be mentioned that if you or a loved one has been diagnosed with any kind of dementia it is vital to get legal advice to make sure your or their affairs are in order.

If you have seen one of our discussion blog post at Patient Talk before you will know that the most important part is to start a discussion among our readers and those in the Dementia with Lewy bodies’ community.  So we were hoping some of you may be able to help with the following questions which will help to educate others about the condition.   We are keen to hear from friends, family and caregivers as well as people with Dementia with Lewy bodies.

So here goes:-

What were the earliest signs and symptoms of Dementia with Lewy bodies?

How did Dementia with Lewy bodies’ progress?

What treatments were offered to you or a loved one? How effective were those treatments for Dementia with Lewy bodies?

What advice would you give to a person

And their families who has just been diagnosed with Dementia with Lewy bodies?

Thanks very much in advance.  Please note that these are just guide lines.  Anything you have to say will be of massive interest to our readers.

Finally if you want or need more information why not have a look the web site of the Dementia with Lewy bodies Society in the UK and its fraternal organisation in America, Canada and Australia.