Caring for patients with neurodegenerative diseases (NDs) at end-of-life can present significant challenges, particularly in home hospice settings where familial caregivers must manage complex symptoms. While prior research has identified symptoms that are commonly experienced by patients with NDs, less is known about how caregivers manage these symptoms in home settings during patients' final days. This study utilized an exploratory convergent parallel mixed-methods design to examine symptom presentation and care experiences of patients with NDs who died in a residential care home (RCH). A query of a database of 535 hospice identified 10 patients with NDs, including Alzheimer's Disease (AD, n = 3), Parkinson's Disease (PD, n = 3), Huntington's Disease (HD, n = 2), Amyotrophic Lateral Sclerosis (ALS, n = 1), and comorbid AD and PD (n = 1). Case study analyses were conducted to examine patterns in symptom progression and caregiving challenges, as well as length of stay (LOS) at the RCH and on hospice. ALS and HD patients tended to be younger at death than those with AD or PD. ALS patients had longer RCH stays and PD patients had longer hospice stays. Agitation and swallowing difficulties were common across all NDs but manifested differently based on diagnosis. Hallucinations were more frequently reported in PD and HD, and falls were documented only in HD patients. Exemplary quotes from caregiver narratives highlight both distinct and overlapping symptom profiles across NDs and suggest that enhanced caregiver support may be needed for patients with NDs receiving home hospice care. Keywords: Neurodegenerative disease, end-of-life care, symptom management, caregiver impact, home-based hospice.
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