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Development of a caregiver reported and weighted dementia outcome

Principal Investigator:
  • Ayse Kuspinar, McMaster University
  • Alzheimer’s Association

Project Overview

Caregivers of people living with dementia know the person the best and have direct experience of how their partner’s dementia is progressing. Their experiences are pivotal in judging the real-world benefits of treatment and making decisions to keep the person at home or consider different levels of care. To our knowledge, there are no outcome measures that incorporate the preferences of caregivers when evaluating dementia impact. This project will co-produce with caregivers a new CAregiver REported and weighted Dementia outcome measure (CARED). CARED will be developed using the most up-to-date and rigorous guidelines for developing and testing measures, and will be available in English, French and Spanish.