Description
- Abstract:
- Background & Aims In 2022, the FDA approved anti-amyloid therapies (AATs) for Alzheimer’s disease. AATs require biweekly or monthly infusions and routine MRI monitoring due to the risk of potentially fatal brain bleeds. While AATs reduce amyloid plaques, a hallmark of Alzheimer’s disease, it is unclear whether this translates to meaningful changes in cognition. As AATs are newly implemented, limited research has examined patients’ and care partners’ experiences of receiving them. Therefore, this study aimed to explore the lived experiences of patients who have received AATs for Alzheimer’s disease, and their care partners. Methods We conducted semi-structured interviews with patients diagnosed with mild cognitive impairment or Alzheimer’s disease who received AATs and their care partners, recruited from Butler Hospital’s Memory and Aging Program. Interviews explored perceived risks and benefits of treatment, financial and logistical considerations, physician-patient communication, and overall treatment experience. Interviews were audio recorded, transcribed, de-identified, and analyzed following Braun & Clarke’s method for thematic analysis. We applied both inductive and deductive codes to the data in Microsoft Excel and NVivo, then grouped related codes to develop themes. Results We interviewed ten participants: five patients and five caregivers, including four dyads. Two patients discontinued treatment early, one because the clinic stopped offering the drug and one due to side effects. Three themes emerged: (1) Motivations for Pursuing AATs, (2) Importance of Trust, Transparency, and Safety Monitoring During Treatment, and (3) Impact of Treatment on Daily Routines. When describing their motivations for pursuing AATs, participants acknowledged that treatment was unlikely to dramatically alter disease progression, yet they still described AATs as providing a sense of hope, control, or action in the face of limited alternatives. Second, participants described cautious and proactive safety monitoring as essential to feeling safe given treatment-related risks. They emphasized frequent contact, honest communication, and close MRI monitoring from their clinical team as reasons they felt comfortable throughout treatment. Finally, participants described using treatment to create routine and structure, often scheduling pleasant activities around infusion visits or attending alone to maintain independence amid a life-altering diagnosis. Conclusion Although participants recognized that AATs carried risks and offered limited clinical benefit, they described treatment as providing hope, a sense of control, and structure. Proactive safety monitoring helped them feel safe while navigating treatment, and many used infusion visits to maintain routine and independence. These findings may inform the development of patient decision aids and treatment education materials to support shared decision-making as AATs become more widespread.
- Notes:
- Thesis (M. P. H.)--Brown University, 2026
Citation
Thomas, Lauren Sydney,
"Patient and Caregiver Experiences of Novel Anti-Amyloid Therapies for Alzheimer’s disease in Rhode Island"
(2026).
Public Health Theses and Dissertations.
Brown Digital Repository. Brown University Library.
https://repository.library.brown.edu/studio/item/bdr:z8kvvaf8/
Relations
Collection:
-
Public Health Theses and Dissertations
Theses and Dissertations for the Public Health department....