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Lewy Body Dementia: Information for Patients, Families, and Professionals
– This publication, by the National Institutes of Health, is an excellent, detailed pamphlet that can be ordered through the National Institute on Aging at 800-438-4380 (publication #13-7907) or it can be downloaded here: https://order.nia.nih.gov/
I Didn’t See it Coming: Scenes of Love, Loss and Lewy Body Dementia by Mary Lou Falcone – Mary Lou Falcone takes readers on a cathartic journey of caregiving that is filled with hope, laughter, and tears. her soulmate of forty-seven years, the celebrated artist Nicky Zann, is diagnosed with the little-known disease Lewy body dementia, which ultimately claims his life. As her beloved husband’s sole caregiver throughout this difficult period, Mary Lou discovers invaluable resources for dealing with LBD, all of which she shares with her readers. https://www.amazon.com/stores/Mary-Lou-Falcone/author/B0CCK29YGT?ref=ap_rdr&store_ref=ap_rdr&isDramIntegrated=true&shoppingPortalEnabled=true
A Caregiver’s Guide to Lewy Body Dementia by Helen Buell Whitworth “MS BSN” and James Whitworth https://www.amazon.com/Caregivers-Guide-Lewy-Body-Dementia– This guide offers very detailed, specific, and helpful information.
Responsive Dementia Care: Fewer Behaviors Fewer Drugs – Finalist: 2018 Wishing Shelf Book Awards and 2019 IAN Book of the Year – by Helen Buell Whitworth “MS BSN” and James Whitworth – Knowledge about why the old responses no longer work. Attitudes that support rather than ignite. Actions that promote compliance instead of resistance. Fewer behaviors: Decrease behaviors due to negative emotions. Increase positive feelings and thus, quality of life. Realistic expectations concerning a progressive disease. Fewer drugs: Behavior management drugs often do poorly with dementia. RDC decreases the need for these drugs, allows smaller doses.
Managing Cognitive Issues in Parkinson’s and Lewy Body Dementia – Gold Award Winner: 2015 E-lit Awards – Earliest symptoms: Can start in Parkinson’s and progress into LBD. Seldom appear as cognitive deficits. Hallucinations, delusions and related behaviors. Sensitivity to behavior management drugs. Drug alternatives and companion therapies: New communication skills. Managing own behavior. Alternative therapy options.
Riding a Roller Coaster with Lewy Body Dementia: A Manual for Staff – by Helen Buell Whitworth “MS BSN” and James Whitworth – published in November, 2019. An updated version of Riding a Roller Coaster with Lewy Body Dementi
The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss by Nancy L. Mace, Peter V. Rabins – This book has been around for a long time because of it’s important, insightful information on caregiving.
I am KEVIN! not Lewy by Kevin Quaid – Kevin himself has LBD and he’s written this book to let others know that there is a life after diagnosis (especially if like Kevin you have been diagnosed at an early age and have a lot of living still to do.) This book is designed to give hope to people, not only people who have Lewy body dementia but for those who have been diagnosed with any type of dementia. Available on Amazon.
Waiting For Tom by Sally A. Devereux – A personal memoir of love, family, adventures, and marriage. Also, the challenges of caregiving, Parkinson’s Disease and Lewy Body Dementia. https://pagemasterpublishing.ca/shop/waiting-for-tom/
Love and Forgetting: A Husband and Wife’s Journey Through Dementia by Julie Macfie Sobol and Ken Sobol – This is the story of two courageous people who were writing partners as well as life partners, so it was natural that when Ken became caught up in the frightening and fatal fog of Lewy Body Disease, they decided to write about their experience with the disease together. It is—at heart—a love story. https://secondstorypress.ca/adult/love-and-forgetting
In Lewy’s Body by Vera Kewes Salter – Vera’s husband recently passed away from LBD in 2024. The poet Jennifer Franklin writes of the collection: “Salter grapples with the complexities that come with becoming a caregiver to a spouse, and watching helplessly as your life partner slowly loses autonomy…. This fine debut collection will be a comfort and a companion to anyone experiencing life-changing loss.” It can be ordered on Finishing Line Press on this link and also on Amazon: https://www.finishinglinepress.com/product/in-lewys-body-by-vera-kewes-salter/
Changing My Daddy’s Mind: Caring for a Loved One with Lewy Body Dementia by Jan Stiers – Through the trials and tribulations of the disease, Jan comes to embrace the realization that caring for her Daddy has caused her to love, appreciate and respect him even more. She shares beneficial and realistic caretaking tips for others who are dealing with the same ordeal. The book sheds light on the hope that as stories like Jan’s are told, the Lewy body community moves one step closer to understanding and conquering this misunderstood disease. Changing My Daddy’s Mind: Caring for a Loved One with Lewy Body Dementia: Stiers, Jan: 9798577428242: Amazon.com: Books
Lost To Lewy by Rick Albertson – This book follows his wife’s nine year struggle with Lewy Body Dementia month by month, sometimes day by day, through the ordeal that took her life at the age of 67. The book records Nancy’s growing list of symptoms, test results, anecdotes, and his daily observations as it documents the progressive impact of the disease on her and her family and caregivers. The book is also a love story, albeit a sad one. It is a retelling of the difficult times in which he as her primary caregiver struggled, too, a husband with no experience caregiving and little understanding of what was to come. https://www.amazon.com/Lost-Lewy-Rick-Albertson/dp/B0D1F6KWGP/ref=mp_s_a_1_1?dib=eyJ2IjoiMSJ9.mOXX7O6Ib95y0wIn5Zo-hA.ZxnGMo0DID97wXIQJ2JmOcgAZgB9s35KvXjZozKhAYE&dib_tag=se&keywords=lost+to+Lewy&qid=1731973063&sr=8-1
Treasures in the Darkness: Extending the Early Stage of Lewy Body Dementia by Pat Snyder – Former caregiver Pat Snyder offers the only book written that addresses the topic of enhancing and extending the early stage of LBD. If you are an early stage caregiver, this story may help you. It has tips on how to make a difference. https://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228
Living with Lewy Body Dementia by Judy Towne Jennings, PT, MA – Geriatric physical therapist and former LBD caregiver, Judy Towne Jennings, gives indepth, personal insight on how best to handle all facets of Lewy body dementia.
When Family Calls: Finding Hope in the Chaos of Long Distance Caregiving by by Caroline H. Sheppard – https://www.carolinehsheppard.com/ Long distance caregiving can be challenging–and one of the most rewarding experiences of your life. “Filled with insight, heart and tons of practical information.”
How to Have Fun with your Aging Parents by Christina Britton Conroy
A step-by-step manual for adults who love and care for older adults. Wonderful, helpful ideas. –
Same Destination . . . Different Journey: Lewy Body Dementia: Our Journey by Emma Haslegrave – easily purchased through Amazon.com – From the authors: This book includes all the key information that you will need if you or a loved one is affected by dementia with Lewy bodies. Information, sadly, we often learnt far too late.
Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders – This is about the non-motor symptoms like hallucinations that warn of LBD in the future, and how to deal with them with fewer drugs. This book is available on our website and on Amazon.
Lewy, Mom, and Me: A Caregiver’s Story by Peggy Bushy – When her mother developed Lewy body dementia, Peggy found a distinct lack of knowledge and support from the medical community. Hoping to provide this support for others, she was inspired to write Lewy, Mom, and Me.
Parkinson’s: A Love Story with Dementia for Dessert by Ava S. Butler – Ava’s husband Richard was diagnosed with Parkinson’s and then with Lewy body dementia. For the next seven years, Ava wages war against these bad boys, writing her reflections and journaling her experiences as she tries everything she can find to help Richard.
The Unexpected Journey: A Memoir by Hennie Friedman – For nearly thirty years, Moish and Henie lived the perfect life until in 2008 he was diagnosed with LBD at the young age of 57. Everything changed for Moish, for Hennie, and their entire family.
Sunsets and Silver Linings: Caring for Parents with Parkinson’s and Lewy Body Dementia by Brooklyn Anne White – A detailed, helpful book as the author takes us on her personal journey of caring for her father. Her goal is to help others who must travel this road by providing tips and encouragement to fellow caregivers.
You Are Not Alone: Dealing with Lewy Body Dementia by Kathy Teyler Jarrett – Part memoir and part help book, You Are Not Alone details all a caregiver for a person with Lewy Body Dementia needs to know, from symptoms to diagnosis to care for their loved one and themselves, from beginning to end of their caregiving journey.
