Cause of death for patients who present with primary progressive apraxia of speech

Apraxia of speech (AOS) can be the initial and sole manifestation of neurodegenerative diseases, termed primary progressive apraxia of speech (PPAOS). These patients frequently evolve to atypical parkinsonism. There is little information to inform end of life planning and expectations.

This study explored causes of death in patients who presented with PPAOS.

Data for 29 deceased PPAOS patients and for whom cause of death data were available were reviewed.

Median age at death was 76.25 years following a median disease duration of 9.78 years. Fifteen patients (52 %) succumbed to deterioration from the disease, ten (34 %) died from complications associated with dysphagia, and the remainder from a brain bleed associated with a fall (10 %) or medical aid in dying (3 %).

The findings inform counseling and underscore the need for comprehensive, interdisciplinary care addressing swallowing impairments and systemic disease to prevent or delay causes of death.