October 09, 2016

Lewy body dementia : what you need to know

Dementia Activist: Fighting for Our Rights

'What's happening to me?' Successful translator and linguist Helga Rohra was understandably good with words - that is, until she found herself getting in a muddle when she spoke.

She started to forget the way home, even though she could remember her address. Her confusing symptoms increased and Helga was diagnosed with dementia at age 50 - but she hasn't let herself be labelled with the usual stereotypes. With entertaining vim Helga shows that her life is still as abundant and self-determined as ever, dismantling the negative stereotypes that often surround a dementia diagnosis.

 She speaks frankly and with humour about her diagnosis and life with young onset Lewy Body Dementia. She explains the changes in her everyday life and the challenges she faces, and shares practical tips that prove it is possible to live well with dementia. Helga also talks about her activism work, which has made hers one of the key voices internationally in dementia advocacy.

Dignifying dementia: a caregiver's struggle

A powerful, beautifully-written account of the author's nine-year journey to care for her husband, who has Lewy Body Dementia. Elizabeth Tierney's book is moving, harrowing, fascinating and instructive. It is also the story of one woman's determination to honour her husband's humanity and how she succeeded against all odds – a triumphant love story.

Dad's Not All There Any More : A Comic About Dementia

Graphic novel / comic book : Alex Demetris explores with tenderness and humour his family's expereince of his father's LBD.
"Louie what?" John's dad, Pete, was already diagnosed with Parkinson's disease when he began to have some very strange experiences, not least of which was the little red-haired girl who followed him around the house. Eventually diagnosed with Lewy Body Dementia (LBD), his hallucinations and other symptoms became more frequent and intense, and Pete moved into a care home. Based on his family's experience of his father's LBD, Alex Demetris' comic explores with tenderness and humour one of the most common yet often unheard of types of dementia; what it is, its symptoms, living in a care home and the impact on people living with the condition and their families.

Lewy body dementia: information for patients, families, and professionals

Lewy body dementia (LBD) is a complex, challenging, and surprisingly common brain disease. Although lesser known than its “cousins” Alzheimer’s disease and Parkinson’s disease, LBD is not a rare disorder. More than 1 million Americans are affected by its disabling changes in the ability to think and move. This 40-page booklet helps people with LBD, their families, and professionals learn more about the disease and resources for coping.

Lewy Body disease : 2012 resource kit

  "The kit was developed in direct response to our consumer’s needs," Alzheimer’s Australia CEO Glenn Rees said.

"There is very little easily available information about Lewy body disease and we therefore saw a real need to develop a resource to provide vital support to those affected by the disease across the country," Mr Rees said.

"The memory can remain intact but there is a loss of other cognitive abilities such as attention and spatial skills,"

"This is an essential resource for those dealing with Lewy body disease. The information is clear, comprehensive and touching. Nowhere else will those with the illness, their families and friends, healthcare professionals and workers find such concentrated knowledge and shared experience," Assoc Prof said.

Robin Groves was diagnosed with Lewy body disease in 2006. He and his wife Lis agreed to feature in the DVD that forms an essential part of the Lewy Body Disease Resource Kit.

"The first thing that really gave me an indication that something was going wrong was when I was playing the piano and I realised that I couldn’t read the music,"

"I found this strange as I have played music since the age of five. I made an appointment with a neurologist and from there saw a number of specialists, all of whom were hesitant to give a definitive diagnosis. It became clear that this is a condition about which very little is known."

"If I had been able to inform myself about the disease by looking at a list of symptoms I would have perhaps recognised what was going on and sought a diagnosis earlier.

"People want to know how the illness will manifest itself and what the progression will be so they can plan their lives, but currently that kind of information is very difficult to find," .


A caregiver's guide to lewy body dementia

A Caregivers Guide to Lewy Body Dementia is written in everyday language, and is filled with personal examples that connect to the readers' own experiences. It includes quick fact and caregiving tips for easy reference, a comprehensive resource guide, and a glossary of terms and acronyms.

This is the ideal resource for caregivers, family members, and friends of individuals seeking to understand Lewy Body Dementia.


Gone mad : dementia, family treachery, and legal insanity

Carol Pendergrass's husband of eighteen years is swiftly sinking into the depths of dementia, experiencing hallucinations, delusions, and psychosis. As she becomes lost within his madness, his adult children take him from their home and wage a terrifying war against her. Taking possession of their assets, her husband's family files numerous lawsuits against her, including a civil suit, claiming that she not only caused her husband's illness but that she attempted to kill him.

Where did that man go?

This book is a true account of day to day living with someone suffering from Lewy Body Dementia. It is a degenerating brain disease, progressive and relentless, which changes many lives from what they were and were going to be. I hope that carers reading this book may relate and be able to be helped in some way along their long journey recognising and coping with the changes emerging to their loved ones, many who have spent so many years together.

No comments: