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What's happening to me?' Successful translator and linguist Helga Rohra was understandably good with words - that is, until she found herself getting in a muddle when she spoke. She started to forget the way home, even though she could remember her address. Her confusing symptoms increased and Helga was diagnosed with dementia at age 50 - but she hasn't let herself be labelled with the usual stereotypes. With entertaining vim Helga shows that her life is still as abundant and self-determined as ever, dismantling the negative stereotypes that often surround a dementia diagnosis. She speaks frankly and with humour about her diagnosis and life with young onset Lewy Body Dementia. She explains the changes in her everyday life and the challenges she faces, and shares practical tips that prove it is possible to live well with dementia. Helga also talks about her activism work, which has made hers one of the key voices internationally in dementia advocacy.
A New York Times Book Review Editors’ Choice An essential book for those coping with Alzheimer’s and other cognitive disorders that “reframe[s] our understanding of dementia with sensitivity and accuracy . . . to grant better futures to our loved ones and ourselves” (The New York Times). An estimated fifty million people in the world suffer from dementia. Diseases such as Alzheimer's erase parts of one's memory but are also often said to erase the self. People don't simply die from such diseases; they are imagined, in the clichés of our era, as vanishing in plain sight, fading away, or enduring a long goodbye. In On Vanishing, Lynn Casteel Harper, a Baptist minister and nursing home chaplain, investigates the myths and metaphors surrounding dementia and aging, addressing not only the indignities caused by the condition but also by the rhetoric surrounding it. Harper asks essential questions about the nature of our outsized fear of dementia, the stigma this fear may create, and what it might mean for us all to try to “vanish well.” Weaving together personal stories with theology, history, philosophy, literature, and science, Harper confronts our elemental fears of disappearance and death, drawing on her own experiences with people with dementia both in the American healthcare system and within her own family. In the course of unpacking her own stories and encounters—of leading a prayer group on a dementia unit; of meeting individuals dismissed as “already gone” and finding them still possessed of complex, vital inner lives; of witnessing her grandfather’s final years with Alzheimer’s and discovering her own heightened genetic risk of succumbing to the disease—Harper engages in an exploration of dementia that is unlike anything written before on the subject. A rich and startling work of nonfiction, On Vanishing reveals cognitive change as it truly is, an essential aspect of what it means to be mortal.
An edited volume discussing the underpinning concepts of citizenship, agency, and participation in the context of the everyday lives of people living with a dementia. The editors explain the theoretical underpinning of citizenship before the contributors show the way it can broaden the everyday lives of people with dementia.
How to live a full and rewarding life after a dementia diagnosis. Keith Oliver was diagnosed with young onset dementia at the age of 55. Unaware at the time that dementia could affect people of this age, Keith set out to increase public awareness of the condition and dispel the myths about the illness. Using a unique diary format, this intimate and empowering memoir captures what everyday life with dementia is like, offering both a candid look at its struggles, and a profoundly moving account of Keith's journey to live a full life afterwards.
“The voice of lived experience is ever growing and without doubt we should never miss an opportunity like this to listen, capture and learn from it.” Paola Barbarino, CEO, Alzheimer’s Disease International “This latest book will help so many people - those with dementia and their loved ones.” Victoria Derbyshire, British Journalist, Newsreader and Broadcaster “Talking with Dementia Reconsidered is a landmark, which will inspire professionals, researchers and the upcoming cohort of people whose lives are affected by dementia.” Tom Dening, Professor of Dementia Research, School of Medicine, University of Nottingham, UK “I would strongly advise all health and social care professionals to read this and rethink what they “know” about dementia.” Dr Hilda Hayo Chief Admiral Nurse and CEO, Dementia UK This book places people living with a diagnosis of dementia at its core, providing each person with the opportunity to express themselves whilst viewing their lives in relation to the Kitwood flower model. Authored by a person living with dementia, an experienced consultant clinical psychologist and a respected academic, the three combine to amplify and showcase the words of the Fifteen people living with dementia, in an original, authentic and unique way. This book: Gives readers transparent insight into the lives, hopes and fears of a diverse range of people living with various forms of dementia Shows how each petal of the Kitwood flower with love at its centre is a helpful framework for each person to describe their life Links the interviews with issues, frameworks, policy and practice Examines what stakeholders can take from this book to advance dementia care. Talking with Dementia Reconsidered truthfully adds to the growing knowledge base of what life with dementia is really like in an engaging and informative way. It is essential reading for anyone and everyone directly or indirectly affected by dementia through lived experience, studying dementia or working professionally to support those affected. The Reconsidering Dementia Series is an interdisciplinary series published by Open University Press that covers contemporary issues to challenge and engage readers in thinking deeply about the topic. The dementia field has developed rapidly in its scope and practice over the past ten years and books in this series will unpack not only what this means for the student, academic and practitioner, but also for all those affected by dementia. Series Editors: Dr Keith Oliver and Professor Dawn Brooker MBE. Dr Keith Oliver is an Alzheimer's Society Ambassador and Dementia Service User Envoy for Kent and Medway Partnership NHS Trust in the UK. He retired from being a head teacher when diagnosed with Alzheimer’s at age 55. Keith is Series editor for the Reconsidering Dementia Series. Reinhard Guss is Associate Fellow of the British Psychological Society and former Dementia Work Stream Lead for the Faculty of the Psychology of Older People (FPOP). Reinhard is a Consultant Clinical Psychologist and Neuropsychologist working within the National Health Service. Dr Ruth Bartlett is Associate Professor at the University of Southampton, UK, co-director of the University’s Doctoral Training Centre in Dementia Care and Principal Investigator of an interdisciplinary, cross-faculty research project funded by the Alzheimer’s Society.
Sharing and evaluating a series of relationship-centred approaches to dementia care, this book enables practitioners to have hands-on involvement in improving the quality of this care. Fostering a critical approach to our understanding of how we do relationship-centred dementia care, Reid shows how experiences of living with dementia, family awareness of dementia, professional knowledge of providing dementia care, and the health, social care and housing system are linked, and how good dementia care arises from the relationships between these groups. The book encourages thinking about the stigma attached to dementia, and how a focus on living well with dementia helps shape policies about people with dementia, with their voices included. Practical steps for carrying out relationship-centred dementia care are also explained, with examples of common obstacles and how to overcome them.
Creating dementia-friendly communities can give people with dementia the chance to continue meaningful lives with reciprocal personal relationships. Underpinning successful dementia-friendly communities is an awareness of people with dementia as active citizens and the importance of supporting engagement in community life. This book offers an overview of the dementia-friendly communities movement, showing the many benefits of this approach. It describes community initiatives from across the globe, such as Dementia Friends, memory cafes, and creative engagement with the arts through organizations like TimeSlips. This compassionate book tells another story about dementia, away from negative stereotypes. This alternative approach claims people can retain a sense of dignity, hold onto hope, sustain meaningful relationships, and live with a sense of purpose with support from their communities.
GP surgeries, outpatient clinics, and hospitals can be difficult for people with dementia, as physical and emotional discomfort can build up and become overwhelming. This book invites healthcare workers to examine the root causes of distress for people with dementia in clinical settings, and offers ways to resolve incidents without the need for restraint or sedation. It also suggests strategies for reflection after incidents and forward planning, to support patients and staff and reduce the frequency of difficult interactions. Each chapter includes illustrative case studies to bring key concepts and dilemmas to life, and is supported by analysis and practical advice rooted in the authors' extensive experience in dementia care. This guide helps healthcare professionals to understand why people with dementia may become distressed in a clinical setting, and gives them the tools to not only resolve incidents, but create a person-centred, supportive environment to reduce future distress.
Dementia not only affects the person presented with the diagnosis, but their family and friends too. This book provides practitioners with strategies to support the whole family and understand their dementia journey both pre- and post-diagnosis. This is facilitated through a series of activities and reflective prompts. There is also a dedicated chapter offering structured exercises for health and social care practitioners and students. The book introduces the Lawrence family, where Peter has been diagnosed with dementia, and provides perspectives from each family member, allowing practitioners to become acquainted with the lived experience of everyone involved. The reflective questions allow readers to become actively engaged to maximise their knowledge and understanding, and to better contextualize what the dementia experience feels like for family and friends. With its focus on the all-important lived experience of the whole family during the diagnostic process and beyond, this is essential reading for any practitioner working with people with dementia.
Dementia is the most significant health issue facing our aging population. With no cure to date, there is an urgent need for the development of interventions that can alleviate symptoms of dementia and ensure optimal well-being for people with dementia and their caregivers. There is accumulating evidence that music is a highly effective, non-pharmacological treatment for various symptoms of dementia at all stages of disease progression. In its various forms, music (as a medium for formal therapy or an informal activity) engages widespread brain regions, and in doing so, can promote numerous benefits, including triggering memories, enhancing relationships, affirming a sense of self, facilitating communication, reducing agitation, and alleviating depression and anxiety. This book outlines the current research and understanding of the use of music for people with dementia, from internationally renowned experts in music therapy, music psychology, and clinical neuropsychology.