Amyotrophic Lateral Sclerosis: Understanding and Optimizing Quality of Life and Psychological Well-Being

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Amyotrophic Lateral Sclerosis: Understanding and Optimizing Quality of Life and Psychological Well-Being

Edited by Francesco Pagnini and Zachary Simmons

Abstract

Amyotrophic lateral sclerosis: Understanding and optimizing quality of life and psychological well-being presents a comprehensive and up-to-date review of the enhancement of the lives of people with amyotrophic lateral sclerosis (ALS) and their caregivers. ALS is a progressive, fatal neurodegenerative disorder. No current medical therapy can reverse or stop its progression, and the promotion of quality of life and psychological well-being is a central component of ALS care. Health care professionals who work in this field should incorporate attention to psychological, emotional, and relational aspects of the disease into their approach to care. This book provides some of the knowledge and direction necessary for optimizing the quality of care for individuals with ALS and their caregivers. Topics discussed include an ALS-centred view of quality of life, depressive features, anxiety, resilience, cognitive impairment, complementary and alternative medicines, and psychological research. Specific elements of ALS, such as end-of-life concerns and bulbar dysfunction, are described through the lens of their psychological impact. There is extensive discussion of the development of new psychological treatments, as well as the impact and incorporation of new technologies, with the goal of fostering optimal quality of life and psychological well-being as key parts of a holistic approach to care for the patients and for those who are close to such individuals.

Bibliographic Information

Publisher:: Oxford University Press

Print Publication Date:: Feb 2018

Print ISBN-13:: 9780198757726

Published online:: Feb 2018

DOI:: 10.1093/med/9780198757726.001.0001

Authors

Francesco Pagnini, editor Department of Psychology, Catholic University of the Sacred Heart, Milan, Italy; Department of Psychology, Harvard University, Cambridge, MA, USA

Zachary Simmons, editor Professor, Departments of Neurology and Humanities, Penn State Hershey Medical Center, Hershey, PA, USA

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Front Matter
Chapter 1 Psychological research in amyotrophic lateral sclerosis: Past, present, and futureTamlyn J. Watermeyer and Laura H. Goldstein
Chapter 2 Quality of life in ALS: What is it and how do we measure it?Vincenzo Zaccheo and Zachary Simmons
Chapter 3 Psychological morbidity in amyotrophic lateral sclerosis: Depression, anxiety, hopelessnessDorothée Lulé, Albert C. Ludolph, and Andrea Kübler
Chapter 4 Mindfulness and mindlessness and ALSFrancesco Pagnini, Deborah Phillips, Eleonora Volpato, Paolo Banfi, and Ellen Langer
Chapter 5 Complementary and alternative medicines and ALSArianna Palmieri, Francesco Pagnini, and Chris Gibbons
Chapter 6 Genetic counselling: Psychological impact and concernsBryan J. Traynor and Adriano Chiò
Chapter 7 Resilience and coping strategies in ALS patients and caregiversStephanie H. Felgoise and Michelle L. Dube
Chapter 8 Cognitive and behavioural dysfunction in ALS and its assessmentSharon Abrahams and Christopher Crockford
Chapter 9 The impact of cognitive and behavioural change on quality of life of caregivers and patients with ALS and other neurological conditionsTom Burke, Miriam Galvin, Sinead Maguire, Niall Pender, and Orla Hardiman
Chapter 10 Neglected needs: Sexuality, intimacy, angerAnna Marconi
Chapter 11 ‘They embrace you virtually’: The internet as a tool for social support for people with ALSPaul Wicks
Chapter 12 Investigating the psychology of assistive device use in ALS: Suggestions for improving adherence and engagementChristopher D. Graham
Chapter 13 End of life: Wishes, values and symptoms, and their impact on quality of life and well-beingDavid Oliver
Chapter 14 Hastened death: Physician-assisted suicide and euthanasia in ALSJames A. Russell and Zachary Simmons
Chapter 15 Bulbar dysfunction in ALS: Psychological implicationsJashelle Caga and Matthew C. Kiernan
Chapter 16 ALS caregiver quality of life and psychological implicationsPeggy Z. Shipley
Chapter 17 Providing holistic care for the individual with ALS: Research gaps and future directionsFrancesco Pagnini and Zachary Simmons
End Matter
- Index

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date: 08 March 2021

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Edited by Francesco Pagnini and Zachary Simmons

Abstract

Bibliographic Information

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Contents