A Caregiver's Guide to Lewy Body Dementia

by Helen Buell Whitworth, Jim Whitworth

"Received a 2012 Caregiver Friendly Award from Today's Caregiver Magazine 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. The Caregiver's Guide to Lewy Body Dementia is the first book ot present a thorough picture of what Lewy Body Dementia really is. A Caregiver's Guide to Lewy Body Dementia is written in everyday language and 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."

Genres: Nonfiction, Health

312 pages, Paperback

First published October 1, 2010

Reviews

[Renata · Rating 5 out of 5]

A highly informative book, well organized with summary sections in bold print. This was a helpful feature because when presented with a lot of new information it takes me a while to process it.By summarizing the key points at the end of each section it works to clarify and reinforce the critical ideas. This is a must read for anyone who has a loved one dealing with that monstrous brain disease.

The author is a nurse who provided care for Lewy Body patients. She worked together with the husband of one of those patients to provide a resource for others that had been sorely lacking. Lewy Body dementia is now becoming better known but even when my husband was diagnosed with it several years ago doctors and hospitals made some alarming errors in medications they gave and were unable to give or helpful information to family members and caregivers.

This is an invaluable resource which I have returned to again and again. It is clearly written and gave me a sigh of relief to have such an accessible tool. It also provides great language to use when talking with other health care providers. The authors were most successful in giving those of us dealing with the disease an empowering tool.

[Diane Holcomb · Rating 4 out of 5]

What is this thing called Lewy Body Dementia? I'd never heard of it until my stepfather was diagnosed with the disease. Robin Williams also suffered from it. I now know that LBD is a combination of Alzheimer's, Parkinson's and hallucinations, caused by abnormal proteins that form in the brain.

As a book buyer, I have access to book distributor's databases, so I scoured them looking for anything on Lewy Body Dementia. There wasn't much, but I found this title and sent it to my mother, who was my stepfather's sole caretaker for the final year of his life.

The book was a godsend.

My stepfather started off with the tremors, poor balance, and shuffling steps of Parkinson's. His symptoms proceeded into periods of forgetfulness that became markedly worse. He then began seeing little men climbing into the light fixtures, worried about a nonexistent baby he heard crying, became agitated about the jet plane he thought had landed on the front lawn, and suffered from other disturbing hallucinations. What was my mother to do?

This book answered those questions and more. From an explanation of the disease in layman's terms, to the progression of symptoms, what to expect, how to react, and how to manage behavioral changes, this guide offered more information than the so-called "experts" knew. She found comfort in reading the personal and sometimes amusing experiences of others who had gone through what she was dealing with, and read the book many times for that reason. Of particular value to her was learning which medications cause adverse reactions in someone with LBD, and she made sure to educate her doctors as well. Also of value: how to build a medical team, dealing with end of life issues, and taking care of oneself.

At my mother's request, I ordered additional copies of the book, which she gave to close family members and my stepfather's medical team.

An excellent, excellent resource for anyone who knows someone dealing with this often misdiagnosed, mistreated, and rarely understood illness.

[Tom Scott · Rating 5 out of 5]

It's not a book I would ever want to read but my dad was diagnosed with Lewy Body Dementia and this has been an invaluable source of information, guidance, reassurance, and perspective. I had my mom and my sister buy copies and it's our "bible" as we journey through this horrible disease.

[Dehila Kisuki · Rating 5 out of 5]

Parkinson’s disease is often viewed as a lifelong, degenerative condition with no possibility of reversal. For many, receiving this diagnosis feels like a life sentence. But is it truly incurable? Recently, I witnessed something that challenged this common belief. A close friend’s mother—who had been living with Parkinson’s for years—began to show remarkable improvement. This wasn’t the result of conventional treatment alone, but rather a natural program she started through Earth Cure Herbal Clinic, a resource we stumbled upon during an online search. Her symptoms didn’t just stabilize—they noticeably improved. Her mobility, energy levels, and overall well-being changed for the better. While every individual’s experience with Parkinson’s is unique, her progress gave us hope and sparked a deeper interest in alternative approaches to managing this condition. If you or someone you care about is navigating the challenges of Parkinson’s and seeking complementary or alternative treatments, I highly recommend exploring Earth Cure Herbal Clinic. They offer natural remission programs that may provide a different path forward—one that embraces healing from the inside out. You can learn more by visiting their website: www.earthcureherbalclinic.com

[Abssa Jam · Rating 4 out of 5]

Living with Pulmonary Fibrosis (PF) was one of the hardest experiences of my life. The breathlessness, the fatigue, and the fear of the future weighed on me every single day. I had tried so many treatments and medications, but nothing seemed to stop the disease from progressing.Out of both hope and desperation, I came across NaturePath Herbal Clinic. At first, I was skeptical but something about their natural approach and the stories I read gave me the courage to try one more time. I began their herbal treatment program, and within a few weeks, I noticed small changes easier breathing, more energy, and a clearer mind. Over the months, those improvements became more and more obvious. Today, I can truly say my life has changed. My lungs feel stronger, and my quality of life has returned in ways I didn’t think were possible.This isn’t just a testimony it’s a heartfelt recommendation to anyone struggling with PF or other chronic conditions. Don’t give up hope. I’m so grateful I gave NaturePath Herbal Clinic a chance. Visit their website to learn more: www.naturepathherbalclinic.com info@naturepathherbalclinic.com

[Jannrivelis]

Well written and a good resource for those of us with family members diagnosed with LBD. I appreciate the importance of a caregivers role because as unique as each individual is, so is the way the disease may affect them. LBD doesn’t seem linear and yet the take away from this book is the importance of a care team.

[Sherry Smith · Rating 5 out of 5]

Truly a Godsend for loved ones dealing with this awful condition. It was like reading my Mother-in-laws story. So much helpful information, and relatable. They literally cover everything you would like to know (except how long your loved one will suffer, only the Lord knows that). We’ve highlighted and will be using it many times throughout our journey.

[Kathy Anderson · Rating 5 out of 5]

This was a great help during the time I was my mother's caregiver. I referred to it many times.

[Pixismiler · Rating 5 out of 5]

Very well written, easy to read in plain English.
Must read for everyone who is a caregiver for someone with LBD.

[PJ · Rating 5 out of 5]

I learned a lot

My mom has LBD. I am not the primary caregiver. This helped me to understand more of what I can do to help her. Highly recommend this book

[Amy Morton · Rating 5 out of 5]

Excellent read! It gave me sound advice and resources to aid in being the sole caregiver for my newly diagnosed mother with LBD and PD.

[Kate B. · Rating 5 out of 5]

Not a fun read, but highly informative for those who have loved ones with LBD.

[C.L. Gibson · Rating 4 out of 5]

Very informative

[Debbie McAllister · Rating 5 out of 5]

My husband has recently been diagnosed. This book told me a lot about what will happen in the future. It also gives me, as a caregiver, an idea of what to expect.

[Wanda Dienst · Rating 5 out of 5]

Very helpful with information to understand my husband’s LBD. Knowing more about this disease gives me the patience I need to help him as we move forward. It’s a scary thing to live with for both of us, but hopefully we will muddle through it. We do have good doctors which helps a lot.

[Voracious_reader · Rating 3 out of 5]

My father-in-law was been diagnosed with Lewy Bodies Dementia (LBD) so we were rather lucky that this particular book was offered as an ER book. I found it to be informative and pretty-well edited. It was sort of like a mix between self-help and medical explanation for the lay person. I would recommend it for anyone who is interested in finding out more about different varieties of dementia, particularly LBD. The one thing that it lacked is a sort of check list format that would permit someone at a glance to see what the different phases of LBD are and to see what symptoms their loved one has and what phase their loved one is in. I know that’s information that you can also get from treatment specialists, but I would have liked a quick at-a-glance list in the book too.

[Michael · Rating 5 out of 5]

If you have a friend of loved one who is diagnosed with Lewy Body Dementia, you should read this book. I loved the format, which guides you through real-life problems and explains them in terms of the disease.

[Linda K. Pollari · Rating 5 out of 5]

Excellent help for care providers and family and friends providing support.

[Kate Heidinger · Rating 5 out of 5]

A critical read for anyone who is, or has a family member going through, Lewy Body Dementia. Truly an essential guide.

[Anita Mott · Rating 5 out of 5]

This is a wonderful book. Everyone facing the loss of a LO must have this book. Although it is hard, it helps me to understand what is happening to my LO.

[Joanne Kelly · Rating 5 out of 5]

Lots of good insights and helpful advice. This is the book I have been looking for...

[Margo Anos Andrews · Rating 4 out of 5]

Helpful read for those caring for family members with LBD.