Excellent Sources of Information On Lewy Body Dementia
The resources I list below are carefully selected, established online sources for vital Lewy Body Dementia Information. They cover its symptoms, progress, medications, complications, etc. More will be added as they are assessed and categorized. Hopefully this’ll help you find what you need fast. If you know of other great ones, please let me know of any other websites that warrant inclusion.
Associations and Organizations
Lewy Body Dementia Association: an exceptionally comprehensive American resource on everything Lewy.
The Lewy Body Society is the only charity in the UK – and the first in Europe – dedicated exclusively to Lewy body dementia, and has exceptional resources for everyone, with a special focus on those in Britain, Scotland and Northern Ireland, including their Podcast launched in late 2023.
The Lewy Body Dementia Resource Centre provides a wealth of resources in English and seven other languages, as well as their own video content, and the only live Helpline for LBD in the United States, available 365 days a year at 516-218-2026.
The US National Institute on Aging has a multi-page, comprehensive explanation of Lewy Body Dementia (LBD) which covers many aspects succinctly. This thoroughly researched information is also available as a downloadable booklet. Particularly well done is their explanation of the often misunderstood spectrum between Parkinson’s Disease Dementia and Lewy Body Dementia.
Alzheimer’s Association of Toronto: this is an incredible organization from which I have benefited greatly. Whatever your nearest association is will provide local guidance and support. You can likely find that though the international Alzheimer’s Association website or the Canadian Alzheimer’s Society website.
National Parkinson’s Foundation: Many symptoms of Dementia with Lewy Bodies are similar to those of Parkinson’s Disease, including tremor, rigidity, shuffling gait, etc. They can provide excellent information and tips and have been of great assistance.
Another excellent resource — with a slightly different twist. is the European Parkinson’s Disease Association’s Lewy Body Dementia section.
Check out a great page on Lewy Body Dementia from The Alzheimer’s Association of North Carolina. They have a very clear, simple breakdown of many aspects of the condition.
The US National Institute on Aging has a comprehensive, multi-page section on Lewy Body Dementia, which applies to professionals as well as lay people.
Insightful Personal Websites
Jim and Helen Whitworth, authors of a great book and active blog on living with LBD, also have an incredible Lewy Body Dementia Tools resource website. I think they exceed their own goal to have an online “tool box where you can find a harmonious blending of traditional treatment and alternative therapies designed to provide care and comfort to the physical, emotional, mental and spiritual needs of professional and at home caregivers and their patients.”
Lisa Cooke produced the fantastic LewyWarriors blog. Caregivers can find and offer advice to other caregivers, and the tips and experiences of the contributors are helpful for any care partner. Ms. Cooke had volumes of experience, keen insight, and was a skillful communicator, but died in 2024 after an extended battle with cancer. RIP Lisa.
Peaks and Valleys is a very compelling, poignant, personal, and unsettling blog by Susan McKnight Dougherty. It follows the progression in her husband, Patrick, who was diagnosed in 2010 at age 61 and died in January 2016. The blog had, for her, become a means of coping with the heartache and devastation that accompanies the condition. Caregiver Katie Owenby created a photo blog which presents his condition in a very raw, uncompromising light, Lost in Lewy: it is gritty and realistic, and may be difficult or upsetting to view. Tragically and unexpectedly, Ms. Dougherty died in 2018: RIP Susan.
Living Beyond Diagnosis: Dr. Robert Bowles Jr. was a pharmacist in the US, diagnosed in 2012. He was a steadfast advocate and unflinchingly positive with vast experience and a unique perspective. His motto, “Love Life Like Never Before and Live It To The Fullest” was genuine and inspirational. Mr. Bowles died in 2023. RIP Robert.
Diagnostic Tools
Get a proper diagnosis by qualified medical professionals. If you want instant guidance, or additional information to bring to an appointment with a specialist, the most revolutionary, recent diagnostic tool that I have found was released in October 2015 by Dr. James E. Galvin, Department of Integrated Medical Sciences, Charles E. Schmidt College of Medicine, Florida Atlantic University. I provide a simplified-language version of his 10-point Lewy Body diagnostic checklist tool, because the language used is quite complex, and the more people who can benefit from this, the better. This PDF file of the Three-Minute Test for Lewy Body Dementia has a complete description of how it works and the ten-point questionnaire itself, and is well worth reviewing first.
Mindfulness Practice — You Can’t Fix Everything: Instead, Adapt Your Reactions.
Mindfulness works, based on my own first-hand, personal experience.
To unfairly simplify my own use of Mindfulness, it basically entails living in the moment, accepting what actually is, and being mentally present — as an observer — at all times. This is not as easy as it sounds, and it is neither as flakey nor as unscientific as it might initially sound. It is backed by extensive clinical research and has been incredibly helpful to countless people in very difficult situations.
The practice of Mindfulness can help you to reduce stress, remain calm, and reduce health risks. It can be as simple or as complex as you wish. A great starting point is with Dr. Jon Kabat-Zinn, from the University of Massachusetts Medical School. If you’d like to get an introduction to his approach you might prefer to watch a few video primers on Mindfulness, although each clip has advertising, unfortunately.
Tips & Tricks for Dealing with Difficult Behaviours
Creative Techniques for Talking to a Loved One With Dementia is about “validating” and “redirecting” and how to cope with difficult behaviours. This is a commercial website, but a simple, clear and worthwhile read, nevertheless.
How to Recognize Pain
It is exceptionally difficult to recognize when a person is in pain if you cannot understand them, or if they have difficulty communicating. This is very common in Lewy, and a great resource is Parkinson’s Australia’s Abbey Pain Scale, a simple printable checklist for symptoms and cues to help diagnose pain in persons with dementia.
They also had a great guide on the subject of pain, using visual cues including: grimacing or pained facial expressions; reluctance to move a body part; moaning; increased heart rate and blood pressure; unusual or extensive sweating; disrupted sleep patterns; lethargy; decreased appetite; behaviours like irritation, anger or confusion.
Exercise
Dancing With Parkinson’s is an exceptional program that was started in Toronto, and which is likely to expand. Whether you are able to stand or not, it is a great dance group that celebrates movement in whatever way you can move. There are participants who are profoundly disabled and still participate. It’s a fantastic, structured hour which provides exceptional benefit! And if you can’t get to one of the classes, but you can get to a dance or exercise class of any type, do it! It gets the oxygenated blood flowing to your brain and that brings myriad benefits.
Commercial or Non-LBD-Specific Websites
The Caregiver Network in Canada deals in areas that cover a very broad spectrum, and many elements of caregiving are the same, regardless of the specific nature. For example, burnout can be the same whether you’re caring for someone with cancer or dementia. You might find some good information here, including a great audio-podcast piece on The Importance of Legal Documents to Preserve Your Peace of Mind.
AlzLive has good information about navigating the health care system, with specifics for Canada, US and UK.
Books
The most straightforward, easy-to-read book I have read, so far, has been A Caregiver’s Guide to Lewy Body Dementia. Another excellent book is The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss. Both books are full of tips.
Pat Snyder is a well known and respected educator, and wrote a very positively reviewed book that gives personal perspectives (husband had LBD), resources and tips, entitled Treasures in the Darkness: Extending the Early Stage of Lewy Body Dementia, Alzheimer’s, and Parkinson’s Disease.
I’m always on the lookout for new ones, and will add them when I find ones I consider worthy.
Downloadable Booklets
Newly released in December 2015, two fabulous long-form booklets are are well described by their titles: Care Partners’ Role In Medications for Loved Ones With Lewy Body Dementia, and Being an Engaged Care Partner: Guide for Spouses of People With Lewy Body Dementia.
A very comprehensive publication from the US National Institute on Aging has one of the most comprehensive PDF format booklets I’ve seen. It’s meant to help people with LBD, their families, and professionals learn more about the disease, providing practical advice that’s instantly applicable.
Video Tutorials
I have an evolving video section on this site, and will be adding and editing the video resources page regularly.
Strength and courage to all!
Timothy Hudson
Updated April 21, 2024.