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2023 Advancing Research on Care and Outcome Measurements (ARCOM)

Validating and Culturally Tailoring Caregiver Measures of Dementia Care

How can researchers reliably assess the perspectives of caregivers for individuals living with dementia?

Hillary Lum, M.D., Ph.D.
University of Colorado
Aurora, CO - United States


Caregivers are a key part of support systems for individuals living with Alzheimer’s or other dementia. Caregivers work with health care providers to monitor disease progression and they also help individuals living with dementia navigate available services and make informed treatment decisions. Despite this important role, there are a limited number of validated tools designed to capture caregiver ratings of dementia care quality and satisfaction. This limits the ability of researchers to fully understand caregiver perspectives and to compare their experiences in different care settings.

Research Plan

Dr. Hillary Lum plans to validate and tailor two existing caregiver surveys and determine if these surveys can reliably assess caregiver perspectives under different circumstances. The research team will enroll 200 caregivers of individuals living with dementia in their study, including some caregivers who provide care for the same individual. The caregivers will complete both surveys at the beginning of the study and four weeks later. This approach will allow Dr. Lum to assess survey consistency. Dr. Lum will also assess survey validity by comparing caregiver ratings of dementia care to dementia care quality indicators from individuals' provided medical records.

Dr. Lum will then determine whether survey completion rates differ depending upon whether the survey is administered in-person during clinic visits or via an online portal. Finally, Dr. Lum will enroll 15-20 additional caregivers who self-identify as Hispanic or Latino to determine the acceptability of Spanish language versions of the two surveys.


This work could provide culturally relevant surveys that could be used by healthcare providers to understand the perspectives of caregivers for individuals living with dementia. These survey instruments could also be used by other researchers interested in identifying ways to improve the experience of caregivers for individuals living with dementia.

The ARCOM Grant Program was developed jointly with Leveraging an Interdisciplinary Consortium to Improve Care and Outcomes for Persons Living With Alzheimer’s and Dementia (LINC-AD). 

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