Today’s discussion centered around positive Alzheimer’s disease biomarker status disclosure and the preclinical caregiver, a concept described by Emily Largent in her recent opinion paper as the anticipatory caregiving role family members assume upon realization that their presently unimpaired loved one is at risk of developing clinical dementia symptoms. Jalayne Arias led our conversation, offering insights from her legal and bioethics background as well as her research investigating discrimination and biomarker status.
Largent posits that the passage of laws encouraging early care planning coupled with the transition toward a pathological, biomarker-centric conceptualization of AD will drive diagnosis prior to the onset of cognitive decline and increase early involvement from family members, who will likely experience emotional and psychological stress. Within our group, we clarified the current state of the science by emphasizing the limited predictive power of biomarkers, especially among asymptomatic populations. In light of the unclear connection between AD biomarkers and disease progression, we expressed concerns that diagnosis on the basis of biomarker positivity might stoke unnecessary fears, ignite family conflict, trigger investment in long-term care insurance that may never be of use, and reduce access to affordable life insurance coverage. With the knowledge that individuals often experience suicidal ideation after receiving a positive AD biomarker status, we considered the mental impact on preclinical caregivers, from feelings of isolation to anxiety regarding prognosis uncertainty. We also acknowledged the potential benefit of biomarker disclosure on early engagement in advanced care planning, a process that becomes particularly challenging if performed post-diagnosis, as patients often exhibit cognitive deficits that jeopardize their capacity to make decisions. Legally, we questioned whether individuals with AD biomarker positivity fall within the ADA’s definition of a person with a disability, and if they and their caregivers qualify for benefits, including employment leave and caregiver support.