I suppose it is fine to read about things in email, as many of us do all the time these days!
But, some of us prefer to hold a book, and to that end, I thought it might be good to tell you about some books I have liked or that look relevant which deal with real stories about people with Alzheimer’s or dementia, or even stories about life and death. Yes, they are probably also on Kindle!
I have read some of these, not all.
Mom, Are You There? Finding a Path to Peace Through Alzheimer’s by Kathleen A. Negri Insights and lessons that can aid any caregiver in embracing the person with dementia in positive, healthy ways and in developing self-understanding.
Dementia: Living in the Memories of God, by Professor John Swinton. Professor Swinton uses his background in nursing, ministry, and healthcare chaplaincy to conduct research on the relationship between spirituality and disease. In Dementia: Living in the Memories of God, Swinton explores two main questions for people living with the disease: Who am I when I’ve forgotten who I am? and What does it mean to love God and be loved by Him when I have forgotten who God is? The book puts forth Swinton’s practical theology of dementia for caregivers, dementia patients, and others who offer them love, support, and guidance.
Still Alice by Lisa Genova Still Alice is a fictional story about the descent of a 50-year-old university professor diagnosed with younger-onset Alzheimer’s disease. The Association assisted author Lisa Genova with her research, which included interviews with several members of past Early Stage Advisory Groups. The Association is also featured prominently in the book’s plot. In addition, the Association worked with Genova to create the Still Alice discussion guide, specifically for people living with Alzheimer’s. The guide, the first of its kind, is intended to help people with the disease use Alice’s story to connect with their experience and explain it to others.
Learning to Speak Alzheimer’s by Joanne Koenig Coste and Robert Butler Joanne Koenig Coste offers a practical approach to the emotional well-being of both patients and caregivers that emphasizes relating to patients in their own reality. Her accessible and comprehensive method, which she calls habilitation, works to enhance communication between care partners and patients and has proven successful with thousands of people living with dementia. Learning to Speak Alzheimer’s also offers hundreds of practical tips, including how to · cope with the diagnosis and adjust to the disease’s progression · help the patient talk about the illness · face the issue of driving · make meals and bath times as pleasant as possible · adjust room design for the patient’s comfort · deal with wandering, paranoia, and aggression.
Chicken Soup for the Soul Living with Alzheimer’s & Other Dementias by Amy Newmark With 101 encouraging and inspiring stories by others like you, this book is a source of support and encouragement throughout your caregiving journey.
The Forgetting By David Shenk. David Shenk’s prize-winning book is a scientific and literary description of Alzheimer’s and the research that is being done to find a cure. The Forgetting, Alzheimer’s: Portrait of an Epidemic is never boring, one feels in the hands of a caring expert. The British psychoanalyst and author Adam Phillips writes in his foreword: “This remarkable book will radically change our notions of looking after people and our assumptions about independence. Out of fear of mortality we have idealized health and youth and competence. The Forgetting reminds us, among many other things, that there is more to life than that.”
When It Gets Dark By Thomas DeBaggio. When it Gets Dark is essentially DeBaggio’s swan song. Although he lived eight years after the publication of this book, one can only imagine how painful the last years must have been for DeBaggio and his family as even in 2003 he was describing the terror, frustration, sadness and sometimes anger at his rapidly deteriorating mind. Although When it Gets Dark was written after DeBaggio’s Losing my Mind, it is more structured, and in chronological order, which is not the case with first book. DeBaggio expands on Losing my Mind, but also turns back to his past, recounting the early 1960s and 70s and his beginnings as an herb grower. DeBaggio was also a fisherman, and often used the language of fishing and horticulture to describe his daily battle: “My long-term memory is left battered; trying to find moments of the past is like fishing with a dull, rusting hook without bait.”
The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss. Written by Nancy L. Mace and Peter V. Rabbins, The 36-Hour Day now is in its sixth edition. Completely revised and updated, this book has sold more than 3 million copies around the world and continues to be a top resource for those caring for people with Alzheimer’s disease and other forms of dementia. The 36-Hour Day guides family members and caregivers through coping with the challenges of dementia while addressing their personal needs and emotions.
The Alzheimer’s Action Plan: What You Need to Know – and What You Can Do – About Memory Problems, from Prevention to Early Intervention and Care by Dr. P. Murali Doraiswamy. Dr. Doraiswamy is a psychiatrist in the Duke Health system who serves as a brain health adviser for Men’s Health magazine and a health care expert panelist for The Wall Street Journal. He also co-authored The Alzheimer’s Action Plan with Lisa P. Gwyther and Tina Adler. This dementia book combines Dr. Doraiswamy’s medical insights with social worker Lisa P. Gwyther’s experience in working with families impacted by Alzheimer’s disease. Readers will understand how to determine whether their loved one’s memory loss is a symptom of Alzheimer’s and how to help her receive effective medical treatments as the disease progresses.
What If It’s Not Alzheimer’s, A Guide to Dementia by John Trojanowski This book is the first comprehensive guide dealing with frontotemporal dementia (FTD), one of the largest groups of non-Alzheimer’s dementias. The contributors are either specialists in their fields or have exceptional hands-on experience with FTD.
Alzheimer’s Disease and Other Dementias by Nataly Rubinstein Written by a licensed clinical social worker with twenty-five years of experience, this easy-to-read book will give you the resources to make informed decisions regarding the best possible care for you and your loved one.
A Caregiver’s Guide to Lewy Body Dementia by Helen Buell Whitworth MS BSN This is the ideal resource for caregivers, family members, and friends of individuals seeking to understand Lewy Body Dementia.
Activities to do with Your Parent who has Alzheimer’s Dementia by Judith A. Levy. She is an occupational therapist who became the daughter of an Alzheimer’s patient. In Activities to Do with Your Parent Who Has Alzheimer’s Dementia, Levy uses her personal and professional experiences to support readers who are in a similar situation. She shares activities that promote patients’ abilities to care for themselves, remain mobile, and continue to socialize. She also describes how to create an environment that supports parents with dementia. The book contains more than 50 activities, activity assessment forms, ideas for preventing caregiver burnout, and much more.
Ahead of Dementia: A Real-World, Upfront, Straightforward, Step-by-Step Guide for Family Caregivers by Luciana Mitzkun’s. This guide for families caring for dementia patients provides an authentic look into managing symptoms, securing future care, and avoiding common mistakes as the disease progresses. Caregivers also will learn how to care for themselves while caring for their loved one, thanks to the concise information and meaningful anecdote included in the book. Busy caregivers appreciate the straightforward nature of Mitzkun’s writing.
Alzheimer’s Care: The Caregiver’s Guide to Understanding Alzheimer’s Disease & Best Practices to Care for People with Alzheimer’s & Dementia by Nancy J. Wiles. Alzheimer’s Care is a dementia book by Nancy J. Wiles that provides a look into Alzheimer’s for caregivers who want to know more about the signs and symptoms of the disease, how to help patients keep their memories for as long as possible, and much more. The book provides a comprehensive overview into dementia and Alzheimer’s and answers the questions caregivers have but aren’t sure how to ask when faced with caring for a loved one with the disease.
In Pursuit of Memory by Joseph Jebelli. It has become the salient fact of 21st-century life that, with an aging world population, Alzheimer’s will overtake cancer as the second leading cause of death after heart disease. We’re at a point, writes Joseph Jebelli, at which “almost everyone knows someone – a family member or friend – who has been affected.” Jebelli, a young British neuroscientist, has greater cause than many to make this claim. As a boy, he watched his grandfather acting strangely, before descending into the abyss of dementia in which he could no longer recognize his family. Jebelli’s testament, In Pursuit of Memory, is a moving, sober and forensic study of the past, present and future of Alzheimer’s from the point of view of a neurologist who has lived with the disease, at home and in the lab, from a very young age.
Curse of the High IQ by Aaron Clarey. Society, by statistical necessity, needs to focus on the majority. It needs to be built and designed for “the average.” Society, by moral necessity, also needs to focus on the disadvantaged and disabled. Helping those who cannot help themselves. But while the majority of society’s resources, attention, and infrastructure is dedicated to average or below-average intelligent people, little-to-none of it is paid to the abnormally intelligent. And while having a high IQ is an overall net benefit in life, being a statistical intellectual freak is not without its drawbacks. Welcome to the “Curse of the High IQ.”
Being Mortal: Medicine and What Matters in the End by Atul Gawande. Like poet William Carlos Williams or The Man Who Mistook His Wife for a Hat author Oliver Sacks, Gawande is that rare soul who is as talented a writer as he is a doctor. In this call for a reevaluation of end-of-life care, he meditates on how to navigate age-related frailty and mortal illness so that not just the living, but the dying, can be comfortable.
On Death & Dying by Elisabeth Kübler-Ross. Ten years after her 2004 death, this new edition of Dr. Kübler-Ross’s definitive work was released, and it’s filled with her original insights about the psychological processes of dying as well as new resources for the ailing and their loved ones.