Robin Williams and Lewy Body Dementia

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Celebrity. Celebrity seems to have some pretty desirable aspects: money, freedom of choice, acclaim. Yet, celebrity has never conferred invulnerability.  The performers we love struggle and fall the way the rest of us struggle and fall, to heart disease or heartbreak (as in the case of Carrie Fisher and Debbie Reynolds), to Parkinson’s (as with Michael J. Fox).

Until an autopsy uncovered signs of Diffuse Lewy Body dementia, it was thought that Parkinson’s undermined one of our best beloved of stars, Robin Williams, who ended his life in the late summer of 2014. DLB is hard to diagnose, hard to distinguish at times from Parkinson’s and Alzheimer’s.  This article we found recently provides a moving, informative explanation.

http://www.huffingtonpost.com/entry/robin-williams-dementia-with-lewy-bodies_us_5638f32ee4b027f9b96a418f

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ctsy. Creative Commons

Speaking in Dublin in June

The Alzheimer Society of Ireland has invited me to speak during Carers Week 2013 on Wednesday 12th June 2013 in Dublin.

The event provides an opportunity for carers to listen to me speak about my own journey as a carer. It will also provide a space to engage in a focused discussion on some of the issues that I will raise and for people to voice their own opinions on the financial, emotional and social costs of caring
for a family member with dementia.

The discussion will inform future policy work for the Alzheimer Society of Ireland ensuring that the voice of carers continues to be recognized and included as well as empowering carers themselves.

I am very much looking forward to the event and to visiting Dublin again.

Kelsey Grammer supports Lewy Body Dementia Association

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The Lewy Body Dementia Association contacted us to let us know they are excited to announce that Golden Globe® and Emmy® award winning actor Kelsey Grammer, star of the critically acclaimed STARZ Original series “Boss,” recently completed two public service announcements for LBDA. Grammer portrays fictional Chicago Mayor Tom Kane, who last season was diagnosed with Lewy body dementia (LBD), the second most common form of progressive dementia. The two PSAs – 35 and 95 seconds – will help raise awareness and support for LBD.

Click here to view the video

A new review from NursingTimes.net

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“Because there has been a sudden increase in accounts of dementia in the arts, I was prepared to skim this book, thinking there might not be new things for me, but it was gripping. … You need to be strong to read this. … A great strength is that there is a web address where you can go and give direct comments about what you think of it.  The book is therefore a dialogue with others.”

NursingTimes.net

We are grateful to Professor June Mathews, Director of Dementia Services at the University of Stirling, for her generous and honest review of Dignifying Dementia which appears in NursingTimes.net in their book club section. The full review follows:

What was it like?

This book is an account of the author’s nine-year battle to care for her husband who had Lewy Body Dementia.  Dr Jim Tierney was an educated, handsome, well-loved man, who was struck down by this disease, but stayed at home with the support of his wife until he died.  By the end of his life he was totally dependent on groups of home care staff, some of whom were wonderful and some were dreadful.  Because there has been a sudden increase in accounts of dementia in the arts, I was prepared to skim this book, thinking there might not be new things for me, but it was gripping.  It is accessible to any reader, and a carer might learn from Elizabeth Tierney’s experience, even though it was in the United States. The contrast between the attitudes of poor care staff and the attitudes of the best is phenomenal.  It shows what a difference you can make as a care worker or nurse.

What were the highlights?

Elizabeth Tierney is a gifted communicator.  Her pen pictures of staff bring them to life.  It seemed that they had often not been trained in dementia care, but to complete time sheets.  “It’s Jim’s fault he’s not wearing any underwear”…”I tied his shoelaces together because he was playing with them…”   His wife asks was it him surfing rappers’ websites on the house computer, or turning on the TV soap operas?  When Elizabeth pleaded with one member of staff to talk to him rather than about him the staff member was startled and said “Oh! You want me to treat him like a REAL person.”  Her description of marvellous sensitive skilled carers paradoxically raises issues about “ownership” of the patient, where her role as wife was being sidelined by their technical skill and intimate involvement with the man who was once her lover, and her rock.

Strengths & weaknesses:

You need to be strong to read this. In my case, I was more interested in Dr Tierney’s early life after I had read about the end of it, and I went back to read this at the end.  A great strength is that there is a web address where you can go and give direct comments about what you think of it.  The book is therefore a dialogue with others.

Who should read it?

Any nurse working in dementia care, or supervising health care assistants or home care workers would benefit from reading this book.  But it is strong stuff, so be prepared to weep. Think of the awesome resilience of the author the next time you start to say that a complaining relative is “just feeling guilty”.  It’s always much more complex.