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Robin Williams and Lewy body dementia

Consultant Admiral Nurse Rachel Thompson talks about how a recent film on Robin Williams raises awareness of Lewy body dementia.

The recent launch of the film ‘Robin’s Wish’ tells the moving story of the actor Robin Williams, who sadly died in 2014 and was later revealed to have had a diagnosis of Lewy body dementia.

As a fan of his work for many years I was personally shocked and saddened to hear of his death at such a young age (he was 63). Although his diagnosis was initially kept secret, it is good to see this film finally provides an honest and vivid account of how Lewy body dementia affected this brilliant, funny and talented actor. It also raises much needed awareness of this complex and challenging condition, thought to account for 10-15% of dementias. The film includes detailed accounts by Robin’s wife and friends who saw him struggle with changes caused by Lewy body dementia, which tragically remained undiagnosed until after his untimely death.

What is Lewy body dementia?

In the UK, we use ‘Lewy body dementia’ as an umbrella term for two different types of dementia: dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD). Both are caused by abnormal clumps of protein (called Lewy bodies) gathering inside brain cells. These Lewy bodies can build up in many parts of the brain but particularly in the areas responsible for thought, movement, visual perception and those regulating sleep and alertness.

In the early stages, DLB is often mistaken for Alzheimer’s disease but can also be misdiagnosed as other mental health conditions and/or movement disorders. However, it can particularly affect the person’s movement (Parkinsonism) as well as memory and carrying out every tasks. Other distressing symptoms can include hallucinations, delusions, changes in alertness and sleep. It is a progressive, long term condition which will eventually lead to increased dependence on others.

Some of the symptoms experienced by Robin Williams, especially towards the end of his career, are clearly described by his wife and friends throughout the film. Highlighted were the impact of REM (Rapid Eye Movement) sleep disorder and early tremor as well as changes in memory and thinking abilities (cognition). Although his remarkably sharp wit and acting abilities may have helped him compensate for increasing difficulties initially, this clearly became more challenging as time went on.

What is so important about this film?

Robin’s widow, Susan Schneider-Williams, has been speaking for some time about Lewy body dementia, which is often referred to as ‘the most common disease you have never heard of.’ It is to her credit and determination that this film has come to fruition.

The film highlights the importance of getting an accurate diagnosis which Robin and his family were not given. This is a sadly familiar experience for too many people in the UK, who also find it difficult to access the support and knowledge they need to manage and understand this difficult condition.

Families deserve responsive and knowledgeable support right from the start and we are pleased that this film has highlighted this need.

Getting a Lewy body dementia diagnosis

We recommend families seek advice from healthcare professionals such as their GP if they are concerned about a possible diagnosis. A referral should then be made to a specialist service such as dementia/memory service for cognitive or psychological symptoms. If motor symptoms (physical symptoms) are a significant concern, advice from a neurologist may be sought.

Due to the complex and distressing nature of symptoms, treatment requires close monitoring along with specialist advice and family support, such as that provided by Admiral Nurses. Admiral Nurses as dementia specialist nurses, can offer crucial support for families affected by Lewy body dementia.

Dementia UK works in partnership with the Lewy Body Society and has recently developed a dedicated Consultant Admiral Nurse post for Lewy body dementia. The Lewy Body Society, whose mission is to fund research into Lewy body dementia and to raise awareness of the disease, is funding the post and makes referrals to the Admiral Nurse Dementia Helpline.

The film clearly shows the love and admiration Robin’s family and friends had for him and the challenges they faced in coming to terms with the reality of Lewy body dementia. We hope that others with the same experiences will receive the support they need and deserve.

We still have a lot more work to do but we hope the film will help to highlight the need for increased investment in research and better services for all those affected.