Amytrophic Lateral Sclerosis (ALS or motor neurone disease) is a progressive neurodegenerative disease that can cause profound suffering for both the patient and their family. Whilst new treatments for ALS are being developed, these are not curative and offer only the potential to slow its progression. Palliative care must therefore be integral to the clinical approach to the disease. Palliative Care in Amyotrophic Lateral Sclerosis: From diagnosis to bereavement reflects the wide scope of this care; it must cover not just the terminal phase, but support the patient and their family from the onset of the disease. Both the multidisciplinary palliative care team and the neurology team are essential in providing a high standard of care and allowing quality of life (both patient and carer) to be maintained. Clear guidelines are provided to address care throughout the disease process. Control of symptoms is covered alongside the psychosocial care of patients and their families. Case studies are used to emphasise the complexity of the care needs and involvement of the patient and family, culminating in discussion of bereavement. Different models of care are explored, and this new edition utilizes the increase in both the evidence-base and available literature on the subject. New topics discussed include complementary therapies, personal and family experiences of ALS, new genetics research, and updated guidelines for patient care, to ensure this new edition remains the essential guide to palliative care in ALS.

This volume provides an evidence-based guide to the care of people with ALS/MND, including the control of symptoms, the psychosocial care of patients and their families, and care in bereavement.

Although new treatments for amyotrophic lateral sclerosis/motor neurone disease are being developed, these at present offer only the potential to slow the disease process. Therefore a palliative care approach to the care of the patient and their family is at the center of good clinical practice in ALS/MND. This book aims to provide and evidence based guide to the care of people with ALS/MND, including the control of symptoms, the psychosocial care of patients and their families and care in bereavement. The palliative care approach to the care of ALS/MND is outlined and the role of the multidisciplinary team emphasized. The international authorship are from many different disciplines and are all closely involved in the care of ALS patients; giving a depth of practical knowledge and experience and allowing a comparison of the differences across cultures, social circumstances, health care systmes and nations. All contributors are clinicians involved in the care of people with ALS/MND and they are able to provide clear guidelines of the care throughout the disease process, from telling of the diagnosis to death. The experience of patients and families are considered and case studies are provided to show the practical applications of the theoretical knowledge. An evidence based approach, grounded in day to day care of patients, is used. Different models of care are explored and the interaction of palliative care with other treatment regimes is addressed, as the experience from the treatment of cancer has shown that there may easily be areas of conflict and confusion if there is a lack of clarity in the care provided for patients. The book aims to provide a reference for all involved in the care of patients with ALS/MND, including neurologists, general physicians, rehabilitationists, paramedical staff, general/family practitioners and specialist palliative care teams. The care of a patient with ALS/MND, and their family, is often a challenge, but one all should take up so that patients can live life as fully as possible.

This comprehensive guide thoroughly covers all aspects of neuropalliative care, from symptom-specific considerations, to improving communication between clinicians, patients and families. Neuropalliative Care: A Guide to Improving the Lives of Patients and Families Affected by Neurologic Disease addresses clinical considerations for diseases such as dementia, multiple sclerosis, and severe acute brain injury, as well discussing the other challenges facing palliative care patients that are not currently sufficiently met under current models of care. This includes methods of effective communication, supporting the caregiver, how to make difficult treatment decisions in the face of uncertainty, managing grief, guilt and anger, and treating the pain itself. Written by leaders in the field of neuropalliative care, this book is an exceptional, well-rounded resource of neuropalliative care, serving as a reference for all clinicians caring for patients with neurological disease and their families: neurologists and palliative care specialists, physicians, nurses, chaplains, social workers, as well as trainees in these areas.

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.

Amyotrophic Lateral Sclerosis: A Patient Care Guide for Clinicians is intended as a practical reference for clinicians caring for ALS patients, and will bring together the collective wisdom of those at the forefront of patient-oriented research and practice. This will be an official project of the ALS Research Group (founded by Dr. Mitsumoto and currently headed by Dr. Bedlack), and provides both an evidence-based and experience-based guide to multidisciplinary ALS care. The book will begin with a brief review of current concepts of ALS including diagnostic criteria, genetic and sporadic subty.

This volume provides comprehensive background for understanding amyotrophic lateral sclerosis (ALS) and a critical review of research. It points out the distinguishing characteristics of the disease and testing procedures for reliable diagnosis.

Molecular and Cellular Therapies for Motor Neuron Diseases discusses the basics of the diseases, also covering advances in research and clinical trials. The book provides a resource for students that will help them learn the basics in a detailed manner that is required for scientists and clinicians. Users will find a comprehensive overview of the background of Amyotrophic Lateral Sclerosis (ALS/Lou Gehrig's Disease) and Spinal Muscular Atrophy (SMA), along with the current understanding of their genetics and mechanisms. In addition, the book details gene and cell therapies that have been developed and their translation to clinical trials. - Provides an overview of gene and cell therapies for amyotrophic lateral sclerosis (ALS) and other motor neuron diseases - Edited by a leading Neurosurgeon and two research scientists to promote synthesis between basic neuroscience and clinical relevance - Presents a great resource for researchers and practitioners in neuroscience, neurology, and gene and cell therapy

Palliative care has not been focused on noncancer yet. Amyotrophic lateral sclerosis (ALS) is a fatal, rapid progressive, and intractable neurodegenerative disease. Individuals with advanced ALS cannot perform activities of daily living by themselves, but their mental awareness remains clear. Individuals with ALS experience various pain soon after diagnosis, and a multidisciplinary team approach is needed because their pain can become complicated Caring for individuals with ALS needs to both start and end with palliative care in the physical, psychological, social, and spiritual aspects. The Japanese Ministry of Health, Labour and Welfare enacted the Principles of Policy for Rare and Intractable Diseases (nanbyo), which were the first set of such principles to be established in the world. This chapter describes the palliative care in Japan, from the perspectives of nursing and nanbyo measures. Also, three unique characteristics of ALS care in Japan are mentioned: the high level of disagreement between patients and family; the high rate of ventilator use compared with Western countries; and the low consumption of morphine. Healthcare practitioners need to apply the notion of the total pain to provide palliative care to individuals with ALS and acknowledge the challenges of providing timely symptomatic management.

Navigating Life with Amyotrophic Lateral Sclerosis provides accessible, comprehensive, and up-to-date information about the challenges patients, family members, and caregivers face when confronted by ALS. This guide covers all aspects of managing ALS, from the onset of symptoms, diagnosis, treatments, and coping strategies, to the use of home health care or hospice, and new research in the field. The book also sheds lights on difficult topics, such as end-of-life care and managing legal affairs. Formatted in a question-and-answer style, peppered throughout with patient stories, and with sections devoted to family members and caregivers, this compassionate resource provides guidance to those seeking to understand how to live with this disease.