Health Surveillance of Community-Dwelling, Persons-with-Dementia and Caregiver Dyads

Health Surveillance of Community-Dwelling, Persons-with-Dementia and Caregiver Dyads

Investigators

Dr. David Barber (Queen's University) Dr. Annie Robitaille (uOttawa), Dr. Neil Drummond (UofA, UofC)

Contact

Rebecca Theal (rmt9@queensu.ca)

Progress

In recruitment

Abstract

The relationship between individuals living with dementia and their care partners is important and can impact their dementia journey. Often, there is limited awareness of the close relationship between people living with dementia and their care partners and, consequently, a lack of support provided to both persons within the dyad as dementia progresses. Availability and access to health information about people living with dementia linked to the health information of their care partner is a valuable resource that could be used to develop resources needed for people living with dementia and care partners. It could also help to spread awareness about the impact the health of one person in the dyad has on the other. To address this gap, we developed a dementia primary care data program that linked a national longitudinal database of persons living with dementia and their care partners. The Canadian Primary Care Sentinel Surveillance Network, which extracts clinical data from electronic medical records from approximately 2 million patients across Canada, was used to identify persons living with dementia and care partners. The growing database contains de-identified (i.e., we removed all personal information) information about persons living with dementia and their care partners that will become a rich data source for researchers, clinicians, and policymakers. In this proposal, we plan to expand the scope and scale of our dementia primary care dyad data program and further evaluate its effectiveness. This study will engage with clinicians to promote the identification and integration of care partners when caring for persons living with dementia.