{"entity":{"id":"da-idea-carer-outcome-primary","kind":"idea","name":"Make carer outcomes a primary trial endpoint","aka":[],"tldr":"Judge dementia treatments by whether households cope better, not only by a clinic memory score.","summary":"Would require regulators and funders to accept carer measures as more than exploratory.","asOf":"2026-09-21","links":[{"label":"CDC caregiving","url":"https://www.cdc.gov/caregiving/index.html"}],"tags":["dementia-atlas"],"related":[],"cancers":[],"sections":[],"technologies":[],"targets":[],"drugs":[],"companies":[],"institutions":[],"pathways":[],"terms":[],"trials":[],"people":[],"bottlenecks":["da-bn-caregiver-load"],"keyPapers":[],"journals":[],"dependsOn":[],"notes":[],"hypothesis":"Trials that treat carer time, sleep, and distress as primary endpoints will select treatments that work in households, not only on a cognitive scale.","rationale":"Unpaid care is the delivery system. A medicine that slightly moves a scale but increases infusion burden can still fail families.","test":"Add a pre-specified carer time-and-distress primary or co-primary to a phase 3 or post-licence study, with a published analysis plan.","maturity":"speculative","actor":"policy","cost":"medium","horizonYears":6},"route":"/ideas/da-idea-carer-outcome-primary/","neighbours":{"bottleneck":[{"id":"da-bn-caregiver-load","kind":"bottleneck","name":"Unpaid care as the hidden delivery system","route":"/bottlenecks/da-bn-caregiver-load/"}],"cancer":[{"id":"alzheimers-disease","kind":"cancer","name":"Alzheimer’s disease","route":"/diagnoses/alzheimers-disease/"}]}}