Patient and caregiver reactions to clinical amyloid imaging

Abstract

INTRODUCTION Amyloid imaging is a tool that has recently become available to dementia specialists evaluating patients with possible Alzheimer’s disease. Studies have assessed the impact of amyloid imaging on diagnostic and treatment decisions, but patient and family perspectives have received less attention. METHODS To examine how amyloid imaging affects the diagnostic experience for patients and families, we interviewed members of 26 patient-caregiver dyads with whom a neurologist discussed the option of amyloid PET. RESULTS Most participants who chose to undergo amyloid imaging would choose to do so again. Regardless of the scan outcome, patients and caregivers commonly expressed relief upon learning the scan results. Some participants expressed expectations that were beyond scan capabilities. DISCUSSION Amyloid imaging may provide information that patients and their families find useful. Clinicians must set correct expectations and ensure that families understand the limitations of amyloid imaging.

The Effects and Meanings of Receiving a Diagnosis of Mild Cognitive Impairment or Alzheimer’s Disease When One Lives Alone

“…In particular, the participants’ ability to voice their concerns and have a medical justification to their forgetfulness was comforting. One recent study also suggested that receiving diagnostic information about AD can be associated with feeling of relief [44]. Indeed, a traditional role of diagnosis is to relieve patients from the weight of carrying the burden of symptoms on their own [45].…”

Amnestic MCI patients’ experiences after disclosure of their amyloid PET result in a research context

“…A key perspective that has been relatively underrepresented until now is the perspective of the patients themselves [ 13 – 15 ]. One study explored the views of patients and caregivers on amyloid PET imaging [ 16 ]. In that study, the views of the 23 caregivers outnumbered the views of the 9 included patients (7 patients with an amyloid-positive PET scan, 2 with an amyloid-negative PET scan) [ 16 ].…”

“…One study explored the views of patients and caregivers on amyloid PET imaging [ 16 ]. In that study, the views of the 23 caregivers outnumbered the views of the 9 included patients (7 patients with an amyloid-positive PET scan, 2 with an amyloid-negative PET scan) [ 16 ]. In addition, the diagnosis in the patient population ( n = 26) was heterogeneous (e.g., mild cognitive impairment [MCI], atypical presentation of AD dementia, young-onset cognitive impairment) [ 16 ].…”

“…In that study, the views of the 23 caregivers outnumbered the views of the 9 included patients (7 patients with an amyloid-positive PET scan, 2 with an amyloid-negative PET scan) [ 16 ]. In addition, the diagnosis in the patient population ( n = 26) was heterogeneous (e.g., mild cognitive impairment [MCI], atypical presentation of AD dementia, young-onset cognitive impairment) [ 16 ]. A number of previous studies have examined the degree to which study participants wish to be informed about the outcomes of tests, but these have been performed mainly in cognitively intact individuals.…”

Letter

“…These include the inadequacy of current treatments to alleviate the symptoms of the disease. Also, the difficulty in developing novel interventions to detect [1–57], delay [58–69], or halt disease progression continues to be an important hurdle. The well‐recognized public health and economic imperative [70–83] posed by the disease continues to be an important motivator to communicate new knowledge across multiple disciplines that will help increase the likelihood of unlocking the complexity of neurodegeneration [84–90] associated with many dementing illnesses.…”