The Impact of Neuropalliative Care on Caregivers of Individuals with Motor Neuron Disorders or Atypical Parkinsonism.

Abstract

Neurodegenerative disorders, including motor neuron disease (MND) and atypical parkinsonism (AP), progress rapidly and place substantial physical, emotional, and financial strain on family caregivers who often provide complex care with limited support. Neuropalliative care (NPC) offers interdisciplinary, noncurative services aimed at improving quality of life (QoL), yet it is underutilized and often misunderstood. Employing Ferrans and Powers QoL Model, this study used an exploratory descriptive qualitative design to examine the experiences of 10 family caregivers of individuals with MND and AP receiving NPC at a specialized clinic. Thematically analyzed semi-structured interviews produced 4 themes that were identified: (1) caregiver QoL, (2) caregiver burden, (3) support, and (4) system barriers. Caregivers described significant emotional and physical strain, loss of personal time, and financial pressures. Clinic services such as anticipatory guidance, interdisciplinary support, and resource navigation were valued; however, many caregivers were unaware they were receiving NPC. Caregivers of individuals with MND reported broader access to resources than those supporting individuals with AP, who experienced more systemic barriers. Findings emphasize the need for earlier NPC integration; increasing awareness of services provided, improving caregiver education, and ensuring equitable access. These steps are necessary for enhancing caregiver well-being and optimizing care outcomes in this population.