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.

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.

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.

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.

The rubric "Quality of Life" first came to the explicit attention of the medical profession a little over thirty years ago. Despite the undoubted fact that each one of us has his or her own Quality of Life, be it good or bad, there is still no general agreement about its definition, or the manner in which it should be evaluated. Although much has been written about quality of life, this work has been largely concerned with population-based studies, especially in health policy & health economics. The importance of individual quality of life has been neglected, in part because of a failure to define quality of life itself with sufficient care, in part perhaps because of a belief that it is impossible to develop a meaningful method of measuring individual variables. It is a fundamental belief of the editors of this book that the primary focus of quality of life is & must continue to be the individual, who alone can define it & assess its changing personal significances. The individual perspective is of vital importance not only to patients but to their doctors too, & is more & more frequently proposed as the most meaningful measure of outcome in clinical research, especially in non-remitting or chronic conditions. Workers who wish to consider wider aspects of influences on the illnesses suffered by individuals & the health care that they receive will find much to stimulate them in the methods of documentation proposed in this book. Those mainly concerned with population samples rather than individuals may also find the sensitive methods of investigation proposed here not only to be applicable to their own areas of interest, but also rewarding in perhaps unexpected ways.