Neurodegenerative Diseases Palliative Care

Original Editor - Lucinda hampton

Top Contributors - Lucinda hampton and Kapil Narale  

Introduction

Palliative care is an important area of intervention in neurodegenerative diseases. Neurodegenerative diseases progress slowly and cause increasing physical disability with an uncertain disease course. The disease's life-threatening characteristics cause patients to often be in need of palliative care. Both the patients and caregivers often have inadequate knowledge regarding disease progression and available help and support programmes. These patients with neurodegenerative diseases, however, often have urgent need of palliative care. Both staff and caregivers need better preparation to deal with these diseases correctly .

Palliative care is frequently associated with neurological diseases such as motor neurone disease (MND) or glioblastoma, however providing primary psychosocial and spiritual support, and good effective communication skills are relevant for all neurologic diseases, including those that are not imminently life-limiting. Core palliative care skills should be a part of a neurologist’s repertoire.

Challenges

Despite the research into neurodegenerative disorders, they remain a group of diseases with limited chances of recovery. Both the illness and its disability are not temporary or time limited, but progress unabated, with crises intermittently. This creates a challenge for both the individual patient and family as they attempt to live and cope with the ramifications of the illness. Caregivers become steadily of greater importance as the disease progresses, to a point where caring for the patient may become the caregiver's main, or almost only, responsibility.

Healthcare workers need to better understand the needs of patients suffering from life-threatening neurological disorders and their families. The concept of palliative care should be incorporated in the care they provide.

Currently a need exists for training in the psychosocial and palliative care of individuals with neurodegenerative disorders and their families.

Physiotherapy

Patients with progressive neurologic disease could benefit from a multidisciplinary palliative care team approach which includes physiotherapists. Physiotherapy can help to reduce symptom burden while improving functional capacity and self-sufficiency. See Physiotherapy in Palliative Care.