SAPCReN

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

Investigators: Dr. David Barber¹, Dr. Annie Robitaille ², Dr. Neil Drummond³,⁴ , Stephanie Garies⁴

Affiliations:

1. Queens
2. UOttawa
3. UofA
4. UofC

Status: Recruiting primary care clinicians to help identify patient-caregiver dyads.

Background: The relationship between people living with dementia (PLWD) and their caregivers is important and can impact their health journey. Very few studies have examined longitudinal data on the experiences of PLWD and caregiver dyads in Canada. CPCSSN has been conducting health surveillance of PLWD in the community using primary care electronic medical records (EMRs) since the validation of the CPCSSN case definition for dementia, but the current CPCSSN database does not identify caregivers.

Objective: This project proposes to build on the existing CPCSSN EMR data to better understand the longitudinal health and outcomes for dyads of PLWD and their caregivers.

Methods: This study will identify dyads from primary care EMRs and link these data to administrative, home care and PROMs and PREMs data to conduct longitudinal analyses about dementia pathways of caregivers and persons living with dementia. This will allow us to generate comprehensive reports for clinicians and health system leaders about the epidemiology and management of dementia from integrated patient and caregiver perspectives. These methods will also inform the scaling up of dyad surveillance across the country.