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2022 Advancing Research on Care and Outcome Measurements (ARCOM)

Development of a caregiver reported and weighted dementia outcome measure

Can methods of assessing people with dementia be improved by incorporating the opinions of dementia caregivers?
 

Ayse Kuspinar, Ph.D.
McMaster University
Hamilton, Canada



Background

Family caregivers of people with dementia often have an understanding of their care recipient’s needs and intimate knowledge of how the individual’s health is progressing. Traditionally, however, questionnaires and other tools for assessing disease progression and treatment have not been developed with input from caregivers themselves.

Research Plan

Dr. Ayse Kuspinar and colleagues will consult with family caregivers of people with dementia to develop a novel assessment tool called the “CAregiver REported and weighted Dementia outcome measure” (or CARED). After enrolling their caregiver participants, the investigators will have them appraise various commonly-used dementia assessment questionnaires. Participants will be asked to judge whether the questions are sufficiently relevant to their own experiences. Next, Dr. Kuspinar’s team will ask the caregivers to identify what behaviors and activities of their care recipients are the most concerning to them. The results will be used to develop a novel set of questions for the CARED tool. Lastly, participants will assess this draft version of CARED and rank the questions in order of relevance to their personal situation. 

Impact

Dr. Kuspinar’s project will offer valuable insights into how well dementia assessments reflect needs of the everyday caregivers. It could also identify a novel, more accurately targeted assessment.

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). The funding partners for this initiative are the Brain Canada Foundation through the Canada Brain Research Fund, an innovative partnership between the government of Canada (through Health Canada) and Brain Canada and the Alzheimer’s Association.

For more information on LINC-AD please visit: https://alz.org/linc-ad

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