Main description:

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.

Contents:

1: Tamlyn J. Watermeyer and Laura H. Goldstein: Psychological research in ALS: Past, present and future
2: Vincenzo Zaccheo and Zachary Simmons: Quality of life in ALS: What is it, and how do we measure it?
3: Dorothee Lule, Albert C. Ludolph, and Andrea Kubler: Psychological morbidity in ALS: Depression, anxiety, hopelessness
4: Francesco Pagnini, Deborah Phillips, Eleonora Volpato, Paolo Banfi, and Ellen Langer: Mindfulness and mindlessness and ALS
5: Arianna Palmieri, Francesco Pagnini, and Chris Gibbons: Complementary and alternative medicines and ALS
6: Bryan J. Traynor and Adriano Chio: Genetic counselling: Psychological impact and concerns
7: Stephanie H. Felgoise and Michelle L. Dube: Resilience and coping strategies in ALS patients and caregivers
8: Sharon Abrahams and Christopher Crockford: Cognitive and behavioural dysfunction in ALS and its assessment
9: Tom Burke, Miriam Galvin, Sinead Maguire, Niall Pender, and Orla Hardiman: The impact of cognitive and behavioural change on quality of life of caregivers and patients with ALS and other neurological conditions
10: Anna Marconi: Neglected needs: Sexuality, intimacy, anger
11: Paul Wicks: "They embrace you virtually": The internet as a tool for social support for people with ALS
12: Christopher D. Graham: Investigating the psychology of assistive device use in ALS: Suggestions for improving adherence and engagement
13: David Oliver: End of life: Wishes, values, and symptoms and their impact on quality of life and well-being
14: James A. Russell and Zachary Simmons: Hastened-death: Physician-assisted suicide and euthanasia in ALS
15: Jashelle Caga and Matthew C. Kiernan: Bulbar dysfunction in ALS: Psychological implications
16: Peggy Z. Shipley: ALS caregiver quality of life and psychological implications
17: Francesco Pagnini and Zachary Simmons: Providing holistic care for the individual with ALS: Research gaps and future directions