Jalayne Arias, JD, MA; Shahrzad Bazargan, PhD
Caregivers’ Perceptions of Neuroimaging Biomarkers in Early Age-Of-Onset Alzheimer's Disease
Background: The diagnosis of Early Age-of-Onset Alzheimer’s Disease (EOAD) occurs prior to age 65 and triggers significant legal, financial, and social decision-making burden for patients and families. Individuals with AD (Alzheimer’s Disease) and caregivers often have minimal understanding of neuroimaging and its role in dementia diagnosis. Neuroimaging biomarkers are advancing a new definition of AD from a clinical to a biomarker construct.
Objective: The current study explores how neuroimaging biomarkers impact perception of diagnosis and disease among caregivers.
Methods: Patients and their caregivers completed an interdisciplinary diagnostic consensus conference where neuropsychological testing and neuroimaging findings, MRI and/or PET, were reviewed. Patients and caregivers were interviewed within 30 days of the conference and again after 6-9 months. We analyzed interview transcripts using qualitative analysis that involved data immersion, theme identification, and interpretation. Thematic analysis was conducted using an adjusted grounded theory approach in NVivo, focusing on diagnostic path and disclosure process of MRI/PET results.
Results: Caregivers were 6 men and 7 women, averaged 60.9 years old, with college education (mean=16.2 years). Most caregivers were spouses (85%). Patient-participants were similar in age (mean=59.8), education (mean=16.7), gender (7 men and 6 women), and race. The frequency of missed or misdiagnosis highlights the importance and value of neuroimaging biomarkers. Participants reported that imaging was important and valuable to understanding their loved one’s illness, mitigating patients’ denial, or solidifying the diagnosis, e.g. putting an end to the search for a diagnosis.
Conclusions: Families were recruited as a part of their enrollment in research and therefore representations may differ in those who do not have or been engaged in established clinical care. However, these narrative descriptions capture distinct insight into caregivers’ perception of neuroimaging biomarkers and diagnosis for early age of onset dementia and suggest future direction for patient and caregiver education at time of diagnosis.