Perspectives of Patients and Care Partners on Benefits or Burdens of Delaying Dementia Progression

Study Overview

In the context of emerging Alzheimer’s disease (AD) therapies that slow disease progression, this study sought to understand whether such treatments align with the goals of patients and their families. Dr. Carolyn Chow and colleagues conducted semi-structured interviews with patients with mild cognitive impairment (MCI) or early-stage dementia, as well as care partners of patients at all stages. Their aim was to explore whether delaying cognitive decline was viewed as beneficial or burdensome, with the goal of informing shared decision-making in the era of disease-modifying therapies.

Key Findings

• Many participants expressed hope for curative treatments, although they recognized these were currently unrealistic.
• Slowing or halting disease progression was viewed as a meaningful goal, particularly among patients and care partners in the early stages of dementia.
• Some care partners—especially those of patients with moderate or severe disease—felt that slowing progression could prolong suffering and increase caregiver burden.
• Preferences varied based on lived experience and personal values, rather than solely on clinical dementia staging.

Clinical Significance

These findings underscore the complexity of treatment decisions in dementia care. While clinicians may assume that delaying decline is universally desired, this study reveals that some families may instead prioritize quality of life or relief from caregiving demands. The work emphasizes the importance of individualized conversations about treatment goals—particularly in the early stages of Alzheimer’s disease—and cautions against relying solely on clinical scales to assess treatment appropriateness. It also highlights the need for deeper understanding of the lived experience of dementia to inform ethical and patient-centered application of new disease-modifying therapies.