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

ISBN : 9780198757726

Francesco Pagnini; Zachary Simmons
300 ページ
156 x 234 mm

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 mindfuln


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


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.