This section of the book addresses five common neurodegenerative diseases: Alzheimer’s disease (AD) and related dementias, Parkinson’s disease, multiple sclerosis, amyotrophic lateral sclerosis, and myasthenia gravis. All are chronic conditions with varying patterns of progression over time. In a recent report, the Institute of Medicine¹ notes that the epidemic of chronic illness is steadily moving toward crisis proportions, yet maintaining or enhancing quality of life for individuals living with chronic illnesses have not been given the attention it deserves. In addition, the aging of the US population will only increase the coming challenges. The epidemic of chronic illness creates strains, stresses, and challenges for the patient and family as well as for the health care system. Chronic disease is a public health as well as a clinical problem.¹ This chapter begins with a brief discussion of chronic illness and chronic illness management and how these general principles apply to neurodegenerative conditions.

A chronic illness is any physical or mental condition that requires long-term (over 6 months) monitoring and/or management to control symptoms and to shape the course of the disease.² It has also been defined as the irreversible presence, accumulation, or latency of disease states or impairments, which involve the total human environment to provide supportive care and self-care, to maintain function, and to prevent further disability.³ Chronic illness is the epidemic of the 21st century with 145 million people (almost half) afflicted presently limiting activity and restricting ability to work and live independently. By 2030, it is expected that 171 million Americans will have one or more chronic conditions. Advances in medical science, especially in molecular and genetic research, have greatly increased our understanding of many of the neurodegenerative diseases. Although cures remain elusive, breakthroughs have been made in treatments directed at symptom management.

Several characteristics of chronic illness are important when considering neurodegenerative disorders. A chronic illness tends to include multiple body systems as a result of the impact of the primary disease on other body systems. As chronic illnesses follow uncertain and changing courses, they greatly intrude on the life of the patient and family over a long period (i.e., years). The level of disability waxes and wanes during the course of an illness thus creating a sense of uncertainty and unpredictability. Because of its changing nature, effective management of a chronic illness requires a variety of primary and ancillary services. Chronic illness is expensive to treat and manage, and often third-party reimbursement is lacking or very limited for needed services. The quality of chronic illness management varies significantly, especially when compared to the high-tech, protocol-driven, hospital-based care, the hallmark of acute care.

Chronic illness management usually involves home-based care with little use of technology. Day-to-day care is provided through self-care or by family members in the home setting. Hospitalization, if necessary, is usually short term and limited to serious relapses or complications related to the disease. Ongoing patient and family education, counseling, and empowerment for self-management are cornerstones of a patient-focused approach. Care focuses on symptom management and interventions to stabilize the disease process and prevent complications. The ultimate goal with chronic disease is adapting to the illness and promoting an acceptable quality of life. This means that care is directed at keeping the patient as independent and functional as possible for as long as possible within the context of his or her daily life.