You may already know that dementia describes a collection of symptoms that are caused by disorders affecting the brain. It is not one specific disease. Lewy body disease is one of the diseases that causes dementia.
This post provides a set of resources specifically about Lewy body disease.
This webpage gives a succinct, plain-English overview of Lewy body disease. It is useful as an introductory document and as a resource to share with family and friends who wish to learn more.
YouTube: Let’s Talk About Lewy Body Disease, Alzheimer’s Australia Vic, 2012
This series of online videos feature Robin Groves, who was diagnosed with Lewy body disease in 2006 and his wife Lis. They discuss how Lewy body disease has affected their lives, including some of the challenges they have faced. The resource is divided into three chapters.
Chapter 1: Robin and Lis
Robin and Lis talk frankly about the condition, and about the changing behaviours Robin experiences.
Chapter 2: A typical case?
Discusses signs and symptoms of the illness.
Chapter 3: Visiting the doctor
Identifies strategies to ensure the doctor or medical professional gets the information they need to provide appropriate ongoing care.
Book: Emerging from the shadows by Helga Rohra (2016)
‘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.
DVD: Lewy body dementia : what everyone needs to know by Teepa Snow (2013)
– about common LBD symptoms
– how to get a good and complete diagnosis
– about commonly prescribed anti-psychotic medications that can have potentially harmful or even deadly side effects if given to a person suffering from LBD. Know which medications are safer alternatives
– how to adapt your caregiving skills to the needs of a person with LBD
– how to utilize visual and verbal cues to increase understanding and cooperation
– about hands-on skills for LBD
Includes practical information on mid to late stage dementia, sleep problems, hallucinations, practical tips on daily care, activities of daily living, medication issues , and how to talk to doctors about medications – it is a very hands on approach . It also describes how Lewy bodies are more prevalent than previously thought.
Book: A caregiver’s guide to lewy body dementia by Helen Buell Whitworth, James Whitworth (2010)
Although Lewy Body Dementia is the second leading cause of degenerative dementia in the elderly, it is not well known or understood and is often confused with Alzheimer’ Disease or Parkinson’s. A Caregivers Guide to Lewy Body Dementia is the first book to present a thorough picture of what Lewy Body Dementia really is.
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.
Book: Dignifying dementia: a caregiver’s struggle by Elizabeth Tierney (2011)
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 honor her husband’s humanity and how she succeeded against all odds – a triumphant love story.
Helpsheets: Lewy body disease helpsheets, Alzheimer’s Australia
Alzheimer’s Australia has produced a collection of helpsheets about Lewy body disease, covering different aspects of this disease and targeted to different audiences.
This American association is specifically devoted to Lewy Body Dementia and may include useful information for people with Lewy body dementia, their families and carers.
Book: Living with Lewy Body Dementia : one caregiver’s personal, in-depth experience by Judy Towne Jennings (2014)
If you’re struggling to care for someone with Lewy Body Dementia, or any Parkinson related disease, and you are looking for some professional help in dealing with the many difficult or awkward situations that arise, then this book is for you. Here you will find not only hundreds of workable ideas on how to maintain and improve the quality of life but also a vast resource of information on what to expect of this unusual disease as it takes its course.
The book is informative: Certainly it provides “meat and potatoes” suggestions for any caregiver, but it is much more than that. Anyone choosing to read this book will have a better understanding of the role of a caregiver, and how we have many positive moments sandwiched among the more challenging. It is a faith-based self help book. I expected God to show up every day and thankfully He always did. (the author)
Graphic Novel: Dad’s Not All There Any More : A Comic About Dementia by Alex Demetris (2015)
“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.
Book: Activities for the Family Caregiver : Lewy Body Dementia: How to Engage, How to Live by Scott Silknitter,Robert Brennan, and Linda Redhead (2015)
From the groundbreaking series written specifically for family caregivers, “Activities for the Family Caregiver – Lewy Body Dementia: How to Engage / How to Live” offers information and insight to enhance quality of life through improved social interactions as well as activities of daily living tips, safety and general caregiver information. Learn new communications and activities strategies to improve time spent with your loved one. Gain new insight as you learn the “how to’s,” “why’s,” and techniques of activities – daily living and leisure.
Book: Dementia with Lewy bodies and Parkinson’s disease dementia / edited by John O’Brien, Ian McKeith, David Ames, Edmond Chiu (2006)
Filling a noticeable gap in the market for a new text solely focused on Dementia with Lewy Bodies, this book discusses cutting-edge topics covering the condition from diagnosis to management, as well as what is known about the neurobiological changes involved. With huge progress having been made over the last decade in terms of the disorder’s recognition as a common cause of cognitive impairment, its clinical features, its underlying neurobiology, investigative changes, and management, this is undoubtedly a much-needed work in what is an important and rapidly progressing field. Written by leading figures in dementia research, this clearly presented, modern text is equally accessible to clinicians such as old-age psychiatrists, geriatricians and neurologists, as well as allied health professionals with a particular interest in the area.