Findings show how treatment priorities shift as the disease progresses and underscore the need for more patient-centered measures of meaningful benefit

Washington, D.C. (August 27, 2026) — UsAgainstAlzheimer’s today released new research showing how priorities for treatment benefits can vary depending on a person’s experience with Alzheimer’s and the stage of the disease. Published in Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, the new study is part of the nonprofit’s Alzheimer’s Disease Patient and Caregiver Engagement (AD PACE) initiative.  

“As Alzheimer's treatments continue to advance, it’s critical to evaluate and measure the outcomes that matter most to people living with the disease and those who care for them,” said Catherine Patterson, Acting Chief Operating Officer, UsAgainstAlzheimer's. “The AD PACE What Matters Most research program is collecting the evidence needed to bring patients' and care partners' perspectives into every stage of treatment development. This study represents another important step toward ensuring future therapies are evaluated based on benefits that are truly meaningful to the people they are intended to help.”


The study, entitled “Priorities of people living with Alzheimer’s and care partners: What Matters Most?”, included qualitative interviews with 64 people living with Alzheimer’s or care partners and a quantitative survey of 640 participants representing the full spectrum of disease severity. Researchers identified 50 important concepts across six domains: General Independence, Thought Processing, Communication, Daily Activities, Emotions, and Social Life and Activities.  

The findings show that priorities can vary depending on who assesses treatment benefit and where a person is in the disease journey. People living with Alzheimer’s placed greater emphasis on maintaining independence, while care partners prioritized communication and safety. As disease severity increased, communication and emotional well-being tended to become more important.  

The researchers conclude that these insights into the lived experience of Alzheimer’s disease could inform the selection and development of patient-centered clinical outcome assessments and study endpoints. This could help ensure that future Alzheimer’s therapies are measured against outcomes that matter in people’s everyday lives.


The full article is available HERE.  

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About UsAgainstAlzheimer’s


UsAgainstAlzheimer’s is engaged in a relentless pursuit to end Alzheimer’s, the sixth leading killer in America. Our work centers on prevention, early detection and diagnosis, and equal access to treatments regardless of gender, race, or ethnicity. To achieve our mission, we give voice to patients and caregivers while partnering with government, scientists, the private sector, and allied organizations—the people who put the “Us” in UsAgainstAlzheimer’s.


About AD PACE

AD PACE is a ground-breaking collaboration of those living with Alzheimer's along with caregivers, industry, academic researchers, clinicians, government agencies, and advocates building a platform to deliver new insights on the lived experience view of health outcomes. The results are intended to inform clinicians, researchers, and regulatory and payer authorities and aid with patient and caregiver communication about dementia. AD PACE has delivered new knowledge to the field on what matters most to people living with Alzheimer’s disease and their care partners across the disease trajectory through the What Matters Most™ (WMM) Research Program.

Contact: Chantez Bailey, [email protected]