My experience of person-centered and personalized care in early-stage primary progressive aphasia

Abstract

Primary progressive aphasia (PPA) is a neurodegenerative brain disorder characterized by declining language ability. It is a rare, often young-onset dementia with a devastating impact on the work and personal activities of those affected. At present there is no cure or disease-modifying therapy for PPA nor any way to arrest or slow the underlying progressive brain degeneration. Throughout the course of the condition any treatment must therefore be palliative—designed to manage symptoms and improve the quality of life of the affected person. The majority of those affected receive little or no follow-up care after diagnosis, particularly in the early stage of the disease. There is very little information in the medical literature about person-centered care designed to improve the quality of life of people with PPA written from the perspective of those living with this condition. I received an early and accurate clinical diagnosis of the nonfluent/agrammatic variant of PPA, supported by imaging. I am fortunate to have benefited from exemplary individualized care from a multidisciplinary medical team from the onset of my difficulties with language. In this paper, I discuss my lived experience of all aspects of this personalized and person-centered care, describing how it was founded on shared decision-making and a holistic, dementia-inclusive approach encompassing the physical, mental, emotional, psychosocial and spiritual dimensions of living with an incurable neurodegenerative disease.