"Now at least we have something to call it": Patient and care partner experiences receiving an amyloid PET scan

The primary objective of this paper was to examine perspectives and experiences of individuals with cognitive impairment who received an amyloid PET scan and their care partners, with regard to the process, logistics, and decision-making associated with receiving an amyloid PET scan and its results.

Structured telephone interviews were conducted with 200 randomly sampled scan recipient/care partner dyads from the CARE IDEAS study. The audio-recorded, transcribed responses were analyzed using an inductive qualitative content analytic approach.

Participating individuals and care partners described their experiences in seeking a diagnosis for memory issues, including decision-making and logistics involved with receiving an amyloid PET scan. Participants discussed the factors contributing to their decision to seek a diagnosis for their memory issues and their hopes and expectations in completing the scan. Participants also described the trajectory of this process, and although some described relatively straightforward trajectories, others described problems associated with identifying appropriate providers and coordinating care across numerous providers to obtain a diagnosis for their memory issues. Participants described an additional challenge of physicians attributing cognitive decline to normal aging, rather than signs of a neurodegenerative disorder.

Findings shed light on the barriers and delays that individuals and care partners experience in connecting with physicians and obtaining a comprehensive evaluation for cognitive problems. Results from this study have implications for physicians who provide care to older adults, and specifically highlight the need for greater care coordination and clearer communication with and systems of referral for patients.