Nonfluent Primary Progressive Aphasia

Implications of Palliative Care Principles for Informing Service Delivery

Abstract

Purpose: 

Nonfluent primary progressive aphasia (nfvPPA) is an established language-led dementia and a known variant of frontotemporal degeneration. The purpose of this article is to report the trajectory of a single case, AC, diagnosed with nfvPPA. We describe a range of interventions offered to AC over 3 years that aimed to support her communicative function, social participation, sense of identity, and emotional well-being. We offer reflections on how these interventions align with palliative care principles, highlighting their value for guiding communication and life participation interventions for persons with nfvPPA.

Method: 

This study used a longitudinal analysis of impairment progression, traditional outcome measures, patient-reported outcome measures, and narrative description to report on patient and family response to interventions.

Results: 

Individual and group interventions are critical for addressing the progressive communication impairments and life participation restrictions for persons affected by nfvPPA. Palliative care principles have intuitive appeal for informing the selection of intervention approaches while focusing on managing symptoms, upholding patient autonomy and dignity, and enhancing quality of life throughout the course of rapidly progressive conditions like primary progressive aphasia.

Discussion/Conclusion: 

Speech–language pathologist-led interventions, grounded in palliative care principles, can optimize communicative function and quality of life for persons with nfvPPA.