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

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Francesco Pagnini, Zachary Simmons
Oxford University Press, Feb 22, 2018 - Amyotrophic lateral sclerosis - 279 pages
Amyotrophic Lateral Sclerosis (ALS) is a devastating neurodegenerative disorder with a progressive and fatal course, with no known medical therapies that can reverse the disease or halt its progression. Palliative care is the mainstay of disease management, aimed at maximizing Quality Of Life (QOL) for the patient and caregiver. Clinicians caring for patients with ALS need to understand complex psychological issues in the patient and caregiver, including depression, anxiety, hopelessness, and wish for hastened death (physician-assisted suicide). They also need to confront the psychological implications of rapidly advancing genetic research, the impact of cognitive and behavioural dysfunction in a sizable minority of ALS patients, and caregiver burnout. Healthcare providers can optimize care by better understanding not only these factors, but by learning how to facilitate their management with problem-solving, coping techniques, and with psychologically-based approaches such as mindfulness and other non-pharmacological approaches aimed at maximizing QOL.

Amyotrophic Lateral Sclerosis: Understanding and Optimizing Quality of Life and Psychological Well-Being provides a detailed review and evaluation of ALS, presented in a comprehensive and integrated fashion. The book achieves this through detailed and up-to-date information about the current state of knowledge in this field. It also offers new insights regarding future directions for research. This book will provide clinicians with a comprehensive description of the psychological aspects of ALS and their management, and incorporates chapters written by recognized scholars in their respective fields.

 

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Contents

Past present and future
1
What is it and how do we measure it?
17
Depression anxiety hopelessness
33
4 Mindfulness and mindlessness and ALS
49
5 Complementary and alternative medicines and ALS
61
Psychological impact and concerns
89
7 Resilience and coping strategies in ALS patients and caregivers
101
8 Cognitive and behavioural dysfunction in ALS and its assessment
123
The internet as a tool for social support for people with ALS
185
Suggestions for improving adherence and engagement
199
Wishes values and symptoms and their impact on quality of life and wellbeing
213
Physicianassisted suicide and euthanasia in ALS
225
Psychological implications
245
16 ALS caregiver quality of life and psychological implications
259
Research gaps and future directions
273
Index
277

9 The impact of cognitive and behavioural change on quality of life of caregivers and patients with ALS and other neurological conditions
151
Sexuality intimacy anger
173

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About the author (2018)


Francesco Pagnini, Assistant Professor, Department of Psychology, Catholic University of the Sacred Heart, Milan, Italy; Department of Psychology, Harvard University, Cambridge, MA, USA, Zachary Simmons, Professor, Departments of Neurology and Humanities, Penn State Hershey Medical Center, Hershey, PA, USA

Francesco Pagnini is an Assistant Professor in the Department of Psychology at the Catholic University of the Sacred Heart in Milan, Italy. He is also an Associate in the Department of Psychology, Harvard University, Cambridge, MA, USA.

Zachary Simmons is a Professor in the Departments of Neurology and Humanities at Penn State Hershey Medical Center, Hershey, PA, USA.

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