Complementary and alternative medicine in an online support group for people with Alzheimer’s disease

Abstract

Background: People with Alzheimer's disease (AD) and related dementias (ADRD) often use complementary and alternative medicine (CAM) without oversight from attending clinicians--leading to possible negative health consequences, such as polypharmacy. While there is evidence these individuals seek online health advice from others with ADRD, little is known about how online discussion boards support health-seeking behavior among this population. Objective: The aim of the current study was to investigate how an online discussion board is utilized by people with ADRD ("Contributors"), to discuss CAM health treatments. Methods: This descriptive study adopted a thematic analysis approach that was applied to data sourced from online discussion boards for people with ADRD. Results: Contributors often referred to "best practices" and emphasized exercise and a special diet to complement the treatments they were prescribed by their treating clinician. CAM was also discussed addressing both physical and emotional concerns along with side effects of prescribed medications. Contributors referred to a variety of sources regarding evidence for treatments including referring to authorities (i.e., published research, websites or news, clinicians' recommendations) and asking their cohort for a second opinion based on the cohort's own experiences. Conclusions: Understanding how people with ADRD talk about CAM is important for guiding treatment decision making, particularly when health decisions are made without clinical oversight. This study highlights the variety of methods people with ADRD discuss CAM in an online support group.