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

Poster for Persons-with-Dementia and Caregiver Dyads project

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


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


Rebecca Theal (


In recruitment



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 since the validation of the CPCSSN case definition for dementia but the current CPCSSN database does not identify caregivers. This project proposes to build on the existing CPCSSN EMR data to fill the gap in longitudinal data on dyads of PLWD and their caregivers.


  • Identify and link PLWD & their caregivers who each have existing CPCSSN EMR data;
  • Gather additional information about patient and caregiving experience using questionnaires, including 'hard to reach' data on gender, ethnicity, educational attainment, household income, housing status and occupation etc., which are rarely recorded in medical records but are vital for health surveillance;
  • Link CPCSSN data with hospital-based administrative data and home care data to fill the gap in data across these care settings;
  • Use these linked datasets to study the epidemiology and management of dementia from integrated patient and caregiver perspectives;
  • Report insights to knowledge users in a timely and relevant manner;
  • Facilitate the scaling up of dyad surveillance across the country


This study will identify dyads and link their electronic medical record, administrative (ICES), home care and PROMs and PREMs data to conduct longitudinal analyses about dementia pathways of caregivers and persons living with dementia.