This book is open access under a CC BY 4.0 license. This is the first book-length exploration of the thoughts and experiences expressed by dementia patients in published narratives over the last thirty years. It contrasts third-person caregiver and first-person patient accounts from different languages and a range of media, focusing on the poetical and political questions these narratives raise: what images do narrators appropriate; what narrative plot do they adapt; and how do they draw on established strategies of life-writing. It also analyses how these accounts engage with the culturally dominant Alzheimer’s narrative that centres on dependence and vulnerability, and addresses how they relate to discourses of gender and aging. Linking literary scholarship to the medico-scientific understanding of dementia as a neurodegenerative condition, this book argues that, first, patients’ articulations must be made central to dementia discourse; and second, committed alleviation of caregiver burden through social support systems and altered healthcare policies requires significantly altered views about aging, dementia, and Alzheimer’s patients.

This book is open access under a CC BY 4.0 license. This is the first book-length exploration of the thoughts and experiences expressed by dementia patients in published narratives over the last thirty years. It contrasts third-person caregiver and first-person patient accounts from different languages and a range of media, focusing on the poetical and political questions these narratives raise: what images do narrators appropriate; what narrative plot do they adapt; and how do they draw on established strategies of life-writing. It also analyses how these accounts engage with the culturally dominant Alzheimer’s narrative that centres on dependence and vulnerability, and addresses how they relate to discourses of gender and aging. Linking literary scholarship to the medico-scientific understanding of dementia as a neurodegenerative condition, this book argues that, first, patients’ articulations must be made central to dementia discourse; and second, committed alleviation of caregiver burden through social support systems and altered healthcare policies requires significantly altered views about aging, dementia, and Alzheimer’s patients.

This is the first book-length exploration of the thoughts and experiences expressed by dementia patients in published narratives over the last thirty years. It contrasts third-person caregiver and first-person patient accounts from different languages and a range of media, focusing on the poetical and political questions these narratives raise: what images do narrators appropriate; what narrative plot do they adapt; and how do they draw on established strategies of life-writing. It also analyses how these accounts engage with the culturally dominant Alzheimer's narrative that centres on dependence and vulnerability, and addresses how they relate to discourses of gender and aging. Linking literary scholarship to the medico-scientific understanding of dementia as a neurodegenerative condition, this book argues that, first, patients' articulations must be made central to dementia discourse; and second, committed alleviation of caregiver burden through social support systems and altered healthcare policies requires significantly altered views about aging, dementia, and Alzheimer's patients. This work was published by Saint Philip Street Press pursuant to a Creative Commons license permitting commercial use. All rights not granted by the work's license are retained by the author or authors.

This is the first book-length exploration of the thoughts and experiences expressed by dementia patients in published narratives over the last thirty years. It contrasts third-person caregiver and first-person patient accounts from different languages and a range of media, focusing on the poetical and political questions these narratives raise: what images do narrators appropriate; what narrative plot do they adapt; and how do they draw on established strategies of life-writing. It also analyses how these accounts engage with the culturally dominant Alzheimer's narrative that centres on dependence and vulnerability, and addresses how they relate to discourses of gender and aging. Linking literary scholarship to the medico-scientific understanding of dementia as a neurodegenerative condition, this book argues that, first, patients' articulations must be made central to dementia discourse; and second, committed alleviation of caregiver burden through social support systems and altered healthcare policies requires significantly altered views about aging, dementia, and Alzheimer's patients.

This book examines writings by people living with Alzheimer's Disease and their caregivers. Its focus areas include the construction of the self in the face of diminishing linguistic and cognitive abilities, the stigmatization of ageing, the various narrative strategies that these texts (often collaborative) employ, the health activism and advocacy generated via a 'biosociality,' and the ethics of care. It examines the 'disease writing' genre about a condition that ravages the ability to use language. It serves as a "literary" examination of the work done in this area through a critical reading of the memoirs of those with AD and caregivers and a healthy dose of literary theory. The book is a valuable resource for those interested in literary and critical theory and researchers in the field of ageing/dementia studies.

This is a literary collection that illuminates the darkness of Alzheimer's disease. It is a unique collection of poetry and short prose about the disease written by 100 contemporary writers - doctors, nurses, social workers, hospice workers, daughters, sons, wives, and husbands - whose lives have been touched by the disease.

"Ten Thousand Sorrows & Ten Thousand Joys offers a vision of lives well-led, and of love in the thick of crisis and loss. Beyond inspiring."-Daniel Goleman, author of Emotional Intelligence "This beautiful book is unlike any other personal account of living with Alzheimer's disease that I have ever read . . . it offers patients and families practical insights into how they can live their lives more fully amidst the heartbreak of a mind-robbing illness."- Paul Raia, Director of Patient Care and Family Support, Alzheimer's Association, Massachusetts Chapter "A story of courage, love, and growing wisdom in the face of Alzheimer's."-Joseph Goldstein, author of One Dharma, Founder / Director of Insight Meditation Society In this profound and courageous memoir, Olivia Ames Hoblitzelle describes how her husband's Alzheimer's diagnosis at the age of seventy-two challenged them to live the spiritual teachings they had embraced during the course of their life together. Following a midlife career shift, Harrison Hobliztelle, or Hob as he was called, a former professor of comparative literature at Barnard, Columbia, and Brandeis University, became a family therapist and was ordained a Dharmacharya (senior teacher) by Thich Nhat Hanh. Hob comes to life in these pages as an incredibly funny and brilliant man who never stopped enjoying a good philosophical conversation-even as his mind, quite literally, slipped away from him. And yet when they first heard the diagnosis, Olivia and Hob's initial reaction was to cling desperately to the life they had had. But everything had changed, and they knew that the only answer was to greet this last phase of Hob's life consciously and lovingly. Ten Thousand Joys & Ten Thousand Sorrows provides a wise and compassionate vision for maintaining hope and grace in the face of life's greatest challenges. (This memoir was originally self-published as The Majesty of Your Loving.)

A definitive and compelling book on one of today's most prevalent illnesses. In 2020, an estimated 5.8 million Americans had Alzheimer’s, and more than half a million died because of the disease and its devastating complications. 16 million caregivers are responsible for paying as much as half of the $226 billion annual costs of their care. As more people live beyond their seventies and eighties, the number of patients will rise to an estimated 13.8 million by 2050. Part case studies, part meditation on the past, present and future of the disease, The Problem of Alzheimer's traces Alzheimer’s from its beginnings to its recognition as a crisis. While it is an unambiguous account of decades of missed opportunities and our health care systems’ failures to take action, it tells the story of the biomedical breakthroughs that may allow Alzheimer’s to finally be prevented and treated by medicine and also presents an argument for how we can live with dementia: the ways patients can reclaim their autonomy and redefine their sense of self, how families can support their loved ones, and the innovative reforms we can make as a society that would give caregivers and patients better quality of life. Rich in science, history, and characters, The Problem of Alzheimer's takes us inside laboratories, patients' homes, caregivers’ support groups, progressive care communities, and Jason Karlawish's own practice at the Penn Memory Center.

"A new ethics guideline for caregivers of "deeply forgetful people" and a program on how to communicate and connect based on 30 years of community dialogues through Alzheimer's organizations across the globe"--

"I was living in a fairy story--the kind with sinister overtones and not always a happy ending--in which a young man loves a beautiful maiden who returns his love but is always disappearing into some unknown and mysterious world, about which she will reveal nothing." So John Bayley describes his life with his wife, Iris Murdoch, one of the greatest contemporary writers in the English-speaking world, revered for her works of philosophy and beloved for her incandescent novels. In Elegy for Iris, Bayley attempts to uncover the real Iris, whose mysterious world took on darker shades as she descended into Alzheimer's disease. Elegy for Iris is a luminous memoir about the beauty of youth and aging, and a celebration of a brilliant life and an undying love.