# Make carer outcomes a primary trial endpoint

Source: https://onco.cc/ideas/da-idea-carer-outcome-primary/  
OnCo record `da-idea-carer-outcome-primary` (Idea). Data CC BY-NC 4.0, attribute "Data from OnCo (onco.cc)"; commercial use needs a licence.

## TL;DR

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.

## Fields

- Kind: Idea
- Last checked: 2026-09-21
- Tags: dementia-atlas
- 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.
- Proposed 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

## Sources

- CDC caregiving: https://www.cdc.gov/caregiving/index.html

## Connected records

- bottlenecks: [Unpaid care as the hidden delivery system](https://onco.cc/bottlenecks/da-bn-caregiver-load/)
- diagnoses: [Alzheimer’s disease](https://onco.cc/diagnoses/alzheimers-disease/)

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