Navigating Without a Roadmap: Challenges of Early Alzheimer’s Caregivers With Their Health Care Team

Abstract

Caregivers of individuals with Alzheimer’s disease are willing to make large sacrifices to attend to the everyday demands of their loved one’s health. Many still lack the necessary skills, information, and resources from medical professionals needed to fully execute this role. The aim of this study is to explore the challenges that first-time Alzheimer’s caregivers encountered with members of their health care team around a loved one’s diagnosis. Four focus groups (N = 13) were conducted in a primary care clinic and academic setting, using a semi-structured interview format facilitated by a mental health professional. The authors used thematic analysis to generate three overarching themes regarding lack of information given about the diagnosis, complications with medication management, and level of confidence in their medical team. Medical professionals should consider educating Alzheimer’s disease caregivers during the initial stage of this role, providing greater continuity of care with the family throughout treatment.