Alzheimer`s Disease/Lewy Body Dementia


My brother was diagnosed with Lewy Body Dementia when he was 57.  At that time he was able to ambulate himself, do ADLs, good cognitive ability.  He now is 6 years into this horrible and debilitating disease and is losing his ability to do much of anything on his own, with increased confusion and delusions. I realize that this is a progressive debilitating disease...I was really wondering is this LBD with marked Parkinsonian symptoms a genetic disease. Our father was never diagnosed (back in 1965) but he had most of the same symptoms and eventually succumbed with pneumonia. (or could it just be a coincidence) What is next and any new research being done?  Thanks..


Hello Elizabeth:  I'm so sorry to hear of your brother's long struggle with LBD.  My father had LBD as well so I know much of what you are experiencing.  Lewy Body is one of the frontotemporal dementias meaning it starts in the frontal and temporal areas of the brain instead of in the hippocampus like Alzheimer's.  It affects many of the same areas that Parkinson's disease does, so it was often misdiagnosed as Parkinson's dementia, but it is not Parkinson's.  From what researchers now know, it's not an inherited dementia, so you would be wise to be more concerned about getting dementia from strokes if you have any of the predisposing factors for that. It has only been in the last 6-8 years that many primary care doctors have become familiar with LBD and are looking for it, so it wasn't on the radar when your father began showing symptoms. There are many, many different types of research going on for all the dementias and they are getting closer every day to finding out some predisposing factors, so don't lose hope that we will have some answers sooner rather than later.  They have discovered that people with LBD are very sensitive to the psychotropic medications that are often used for behavior control in other types of dementia.  Use of those drugs in a person with LBD can worsen the symptoms or even lead to earlier death, so it's very important that doctors either confirm or rule out LBD when symptoms present. Keep digging for answers Elizabeth, but please don't stress about inheriting this dementia.  Cindy  

Alzheimer`s Disease

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Cindy Keith, RN, BS, Certified Dementia Practitioner


As a nurse and dementia consultant, I can answer most questions on all types of dementia. If I cannot answer your question, I will attempt to find someone who can. My passion is to help caregivers of people with dementia, which in turn helps all those wonderful elders with dementia live better lives. When caregivers are better educated, they are able to better care for themselves and their loved ones, so education is key to decreased stress levels and healthier, happier families.


I have worked as a nurse in various disciplines of nursing for over 20 years, most of which was with the elderly. I was a health care coordinator in a dementia dedicated assisted living facility for 4 years before I started my own business (M.I.N.D. in Memory Care) as a dementia consultant six years ago. As a dementia consultant, I help families nationwide through phone conference calls as they struggle to care for their loved ones with dementia.

Alzheimer's Foundation of America Geriatric Interest Network Sigma Theta Tau International

Published "Love, Laughter, & Mayhem - Caregiver Survival Manual For Living With A Person With Dementia" which is a collection of stories about people with dementia I have known, loved and worked with. Every story has a lesson to teach and this book gently teaches family caregivers lessons about how to better care for their loved one, as well as themselves during their caregiving journey. Published "Love, Laughter, & Mayhem In Eldercare Facilities: The Master Key For Dementia Training" Created "Bringing Nurturing To Memory Care" staff dementia training video Created Ebook: "Hair Stylist's Helpful Tips For Working With People With Alzheimer's & Other Dementias"

Registered Nurse with Bachelor's degree in Nursing; Certified Dementia Practitioner; Author of 2 books and an ebook

Awards and Honors
Sigma Theta Tau National Honor Society of Nursing

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