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I'm Still Here: A New Philosophy of Alzheimer's Care Paperback – December 29, 2009

4.5 out of 5 stars 62 customer reviews

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Editorial Reviews

Review

'We all think we know what Alzheimer's does to the person who has it, and to those close to them, but we are wrong. John Zeisel's book dispels myth after myth, the most important of which is that the person with Alzheimer's is lost to us. Gently, but with compelling persuasion and logic, he teaches us how to improve beyond recognition the quality of life of a loved one with Alzheimer's. Just as important, he teaches us, the carers, how better to care for ourselves. I lost count of the number of times I gasped with recognition at his description of Alzheimer's behaviour and the corresponding reaction of carers. I would say to anyone living with a loved one who has Alzheimer's, read this book, reread it, keep it for daily reference. It will change more lives than just yours' JOHN SUCHET, presenter and author 'My wife, the writer Iris Murdoch, died of Alzheimer's after a seven year illness, so I am familiar with the situation so masterfully set out in John Zeisel's book. It is certainly the best book yet written about the predicament of Alzheimer's patients and carers and about the compensations of both those states' PROFESSOR JOHN BAILEY CBE 'This book rages with an optimism and determination to champion the cause of sufferer and carer alike. Zeisel's insights into Alzheimer's are as startling as they are fresh, forcing the reader to revisit the comfortable certainties of what they thought they understood to reveal that Alzheimer's has the ability to amplify our understanding of the human condition itself ... The humbling lesson from this book is that Alzheimer's provides a metaphor for modern life itself and to ignore it will leave us all the poorer. This should be required reading for anyone with an ambition to create the future. It is both a clarion call and a cautionary tale from a gifted narrator blazing with humanity' TIM SMIT, CBE, Chief Executive and co-founder of The Eden Project 'A book that will give great hope and encouragement to anyone dealing with Alzheimer's sufferers either in a professional situation or at home' BOOKSELLER 'John Zeisel's book, I'm Still Here is superb. It is, indeed, a "breakthrough approach to understanding someone living with Alzheimer's." This approach, and this book, provides caregivers much deserved and very real hope for a future with their loved one filled with communication, connection, and meaning. We are at a very exciting time in the field of Alzheimer's disease research, with new treatments on the horizon which will truly alter the progression of this disease and not merely provide temporary symptomatic relief. These new treatments, along with improved diagnostic tools, will lead to a growing number of individuals living with Alzheimer's at earlier and earlier stages of the disease. Because of the increasing numbers of individuals in these early stages of Alzheimer's. the life experiences offered through the I'm Still Here approach will be even more necessary and important, in terms of providing meaning and quality of life to the patients and their caregivers' Robert A. Stern, PhD, Associate Professor of Neurology, Co-Director, Alzheimer's Disease Clinical and Research Program, Co-Director, Center for the Study of Traumatic Encephalopathy, Boston University School of Medicine 'A book that will give great hope and encouragement to anyone dealing with Alzheimer's sufferers either in a professional situation or at home... An optimistic book, it shows there is another way and that medication is not the only approach. One to watch.' THE BOOKSELLER 'In this passionate and thoughtful book John Zeisel brings valuable insights and a fresh, energising perspective to the field of dementia care.' SUE BENSON, Editor of Journal of Dementia Care 'This important new book makes the case for a positive mindset about dementia; providing us with new concepts such as 'hard-wired' abilities and new meanings of words like "treatment". It is a valuable addition to materials available for relatives and friends of people with dementia.' Mary Marshall Emeritus Professor, University of Stirling "In this passionate and thoughtful book John Zeisel brings valuable insights and a fresh, energising perspective to the field of dementia care.." SUE BENSON, Editor of the Journal of Dementia Care 'In this book John Zeisel dares to discuss the potential for growth in people with dementia. He offers practical suggestions for establishing a context in which this can be achieved and challenges us, as professionals, to share in the growth. His compassion shines through and helps the reader to believe that it can be so' RICHARD FLEMING, Director, Dementia Services Development Centre, HammondCare, Sydney, Australia and Clinical Associate Professor, Faculty of Health and Behavioural Sciences, University of Wollongong 'm Still Here is a startling, uncompromising, and deeply compassionate look at how we care for people living with Alzheimer's. It overflows with insight, practical advice, inspiration and hope' DAVID HYDE PIERCE, actor and Alzheimer's advocate 'I'm Still Here offers a revolutionary yet pragmatic map for the compassionate care of people with cognitive impariments like Alzheimer's disease. John Zeisel's brilliant, soft-spoken, and heartwarming manifesto is a must read for anyone whose life involves helping someone with these special needs, a guide to new ways to connect to the person, not the disease' DANIEL GOLEMAN, author of EMOTIONAL INTELLIGENCE 'Just as the Alzheimer's 'perfect storm' is about to strike, wth an anticipated tripling of the number of people with the disease, comes a culture-changing book, I'M STILL HERE, with practical ways that enable families and professionals to look beyond the disease and then to find ways to emotionally connect with the person who is still there. This approach is truly an active treatment for dementia far more effective than any pill yet available' PAUL RAIA, PhD, Vice President, Patient Care and Family Support, Alzheimer's Association, Massachusetts and New Hampshire Chapter 'John Zeisel understands the importance of living environments and their influence on the Alzheimer's patient. He displays compelling sesitivity to the patient as well as caregivers, and he explores in detail creative ways to enhance the patient's quality of life. I recommend this book to anyone seeking a better understanding of this disease and its compassionate treatment, as well as the nurturing properties of thoughtfully and sensitively designed architecture' ROBERT H. SCHULLER, founding pastor, Crystal Cathedral 'Dr. Zeisel has provided a fresh approach to an old disease. By focusing on the assests and capabilities of the person with Alzheimer's, rather than the deficits and losses, he offers not only hope, but a renewed sense of the possibilities for continued connection and communication throughout the course of the disease. As science battles to eradicate the disease, Dr. Zeisel combines knowledgefrom the neurosciences and environmental sciences to support his practical, sound, and creative advice and apporaches for caregivers' CORNELIA BECK, PhD, RN, FAAN, Louise Hearne Chair in Dementia and Long-Term Care, University of Arkansas for Medical Sciences 'John Zeisel proves a theory that many of us who love someone with Alzheimer's have suspected: that the person who is changed by the disease is still inside, waiting to be awakened and nurtured with love, with music, with paintings, and with poems, as well as one-on-one communication and physical and mental exercises. As the number of people with Alzheimer's continues to rise, this is a wonderful, much-needed book' MARY ELLEN GEIST, author of MEASURE OF THE HEART 'In this book John Zeisel illuminates the nature and needs of perons with Alzheimer's disease at all points in the course of their condition. Dr. Zeisel has developed important innovations that serve the emotional and intellectual needs of persons with Alzheimer's such as the museum tours program and other arts and design programs. The programs and related strategies for life enrichment described in this book can improve the lives of persons with Alzheimer's and those who love and care about them' BARRY REISBERG, MD, Professor of Psychiatry and Clinical Director, aging and Dementia Research Center, New York University School of Medicine 'A must read for all those who do - and all those who don't - live with the symptoms of dementia' RICHARD TAYLOR, author of Alzheimer's from the Inside Out --This text refers to an alternate Paperback edition.

About the Author

John Zeisel is the president of Hearthstone Alzheimer Care, and is the founder of the Hearthstone Way, an innovative and practical approach to the care of people living with dementia. He developed ARTZ, the Artists for Alzheimer’s program, which develops guided museum tours and other cultural experiences for those living with the disease. He holds a Ph.D. in sociology from Columbia, and has taught at Harvard, Yale, and McGill. His work has been covered in The New York Times, The Boston Globe, and O: The Oprah Magazine, and on ABC, CNN, and the BBC. Zeisel divides his time among Montreal, New York City, and Woburn, Massachusetts.
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Product Details

  • Paperback: 272 pages
  • Publisher: Avery; 1 edition (December 29, 2009)
  • Language: English
  • ISBN-10: 1583333762
  • ISBN-13: 978-1583333761
  • Product Dimensions: 5.5 x 0.7 x 8.2 inches
  • Shipping Weight: 8.8 ounces (View shipping rates and policies)
  • Average Customer Review: 4.5 out of 5 stars  See all reviews (62 customer reviews)
  • Amazon Best Sellers Rank: #72,109 in Books (See Top 100 in Books)

Customer Reviews

Top Customer Reviews

Format: Hardcover
I am an RN, and have a mother with Alzheimer's. I have read at least 5 books on this subject, but when I found "I'm Still Here", I was very so surprised. This book is the best I have read so far, it is the most beautiful, compassionate and helpful book for everyone being in contact with a person suffering from Alzheimer's disease. You will be so glad you read it! I sent it to my dad who is the caregiver for my mom. He was somewhat skeptical; I had suggested other books before. But when he started reading this one, he emailed me "I wish I had had this book a year ago".... Please, give yourself the gift of this book.
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Format: Paperback Verified Purchase
I run a Caregivers' Support Group and I took this book to help the Caregivers. I had to check it out at each meeting as someone was always wanting it - those who read it said it helped them get a new perspective on their care partner.
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Format: Kindle Edition Verified Purchase
I'm still working through this book, and may change the rating to five stars when I finish. As one just beginning to experience the early symptoms of this condition, I have found much to encourage me here. By describing exactly what goes on in our brains and explaining that nothing once stored there is ever totally lost, Mr. Zeisel shows us what we can expect and why. Much more importantly, this is aimed at those who will care for Alzheimer patients, explaining clearly just what is happening at each stage, giving guidance on how to lead their patients to remember and enjoy past events and happy memories. I may or may not put my wife of 53+ years through this torment, but if I do, she will handle it much better now that she has this book to guide her.
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Format: Hardcover
This book may be helpful and appreciated by readers who don't understand the behavioral changes that the Alzheimer's victim manifests and need to be told that there is- indeed still a person in there. I use the word "victim" even though Zeisel prefers to call them "people living with Alzheimers" because Alzheimer's disease not only predictably produces a downward spiral toward death but changes the very essence of who the victim is- including social roles and self- care abilities such as dressing or bathing and ultimately the ability to swallow food. They are indeed victims of what might be considered one of the most terrifying diseases.

Zeisel also uses another euphemism- the word "partner" instead of "caregiver"- almost as though to minimize the devastation experienced by spouses, friends and children as they lose previous social relationships (especially of spouses), take on the burden of making financial and health care decisions and endure the physical demands of dressing, toileting and feeding another person. This is not a partnership. It is the caregiver who is responsible for finding financial assistance for home care or a facility that provides adequate care and stimulation.

I'm Still Here offers some good tips on behavioral interventions and setting up the environment to promote quality of life and decrease agitation. The Arts program as described provides the much needed social and sensory stimulation many memory impaired individuals lack. But all of this stimulation can be provided with meaningful photographs, music, familiar movie clips and other personalized sensory stimulation modalities such as smelling the familiar aroma of apple pie.
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Format: Kindle Edition Verified Purchase
While "The 36-Hour Day" remains the most comprehensive self-help for dementia/Altzheimer's caregivers, this book takes a different approach. It explains that some things are hard-wired in the brain and tells how to access that for the benefit of the patient. It explains a concept and tells you how to use the information to help the one being cared for. One example is the use of templates. It says that there are around 50 steps in the process of getting dressed and while the patient may be able to do each step, putting it all together becomes overwhelming. Setting the table is another such problem and the use of a template such as a place mat showing the location of the plate, knife, fork, etc. allows the person to match the utensils to the drawing. It is a very compassionate approach and has helped me sort out some personal feelings by giving me insight into the way the brain of the patient works. I haven't absorbed all that is contained in the book yet and I hope to learn more about the process and apply it to the care of my husband.
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Format: Paperback Verified Purchase
One of the most compassionate and progressive books on Alzheimers I have ever read! My husband was recently diagnosed with early stage dementia, and this book was and continues to be enormously helpful to me in my role of caretaker. In fact my paperback is dog-eared and water splattered with use (as I've read it at the airport, in the rain, on my way to work, etc and keep referring to it). I've recommended this book to a number of friends as well and they've been grateful.
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Format: Hardcover Verified Purchase
The book helps to find some positive aspects in having Alzheimer's or at least to look at it from a different perspective, the one you could live with instead of deciding that your life is over. Maybe it's over in the way you lived it before, but it's still life.
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