Informing the design of embedded pragmatic trials of dementia care interventions: perspectives from a Lived Experience Panel
Yaideliz M Romero‐Ramos, Carolyn Malone, Monica Moreno, Katherine Brandt, Gary Epstein‐Lubow · 2025
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Description
Yaideliz M Romero-Ramos and co-authors report on a lived experience panel that advises dementia trial design in a 2025 piece. The panel was convened by a national trial network with the Alzheimer's Association. Its nine to twelve members include people with memory symptoms, care partners, and proxies for those who have died.
Recent panel rounds took up health equity and care that matches a patient's own goals. Members stressed that diagnoses under the dementia umbrella differ widely. They also weighed the chances and limits of judging goal-matched care in trials. One summary report on equity is out, and one on goal-matched care is in progress. The authors present the panel as a model for giving patients a real voice in research.
Catalog record
| CREATOR | Yaideliz M Romero‐Ramos, Carolyn Malone, Monica Moreno, Katherine Brandt, Gary Epstein‐Lubow |
|---|---|
| YEAR | 2025 |
| COLLECTION | PAPERS |
| FORMAT | TXT |
| FILE SIZE | 3 KB |
| VERSION | 1.0 |
| LICENSE | CC BY 4.0 |
| RIGHTS | CC BY |
| SOURCE | Europe PMC |