Abstract
Background: This is a collaborative project between the Canadian Institute for Health Information (CIHI) and the Public Health Agency of Canada (PHAC) that supports the implementation of the national dementia strategy through the Enhanced Dementia Surveillance Initiative.
Approach: We used hospital, primary care and pharmaceuticals data holdings to create a cohort of individuals with a first record of dementia in 207 in 4 provinces (Alberta, British Columbia, Ontario and Newfoundland and Labrador - where there is nearly complete health administrative data). We then followed the cohort for 5 fiscal years (FY207 - 2022) after linking their records with home care and long-term care data to identify care trajectories and respective clinical and socio-demographic profiles. We interviewed 4 individuals, unpaid caregivers and health care professionals (from family practice and home care fields), to get insights on data findings related to healthcare provision across various settings, identify further research questions and bring context to our preliminary findings. We examined: ) factors associated with transitions to long-term care using logistic regression and 2) how hospitalizations prior to long-term care transition were different by trajectory and the presence of concurrent mental health disorders.
Results: The results from the longitudinal analysis showed that in addition to clinical characteristics such as severe cognitive impairment, transitions from home care to long-term care were associated with equity factors (e.g., living in a rural or remote area) and caregiver mental wellbeing. Among people living with dementia who received long-term care during our study period: those who had not received publicly funded long-stay home care were more likely to be hospitalized at least once in the 3 months prior to their transition into long-term care (8% vs 5%).those with concurrent mental health disorders were more likely to be designated alternate level of care (ALC) patients (8 vs 74%) and have more ALC days (40 vs 27 days) prior to transitioning to long-term care compared to those without concurrent mental health disorders.Conclusion: Our study reveals how factors beyond clinical characteristics are associated with admissions to long-term care. In addition, it shows how hospitalizations prior to long-term care admissions are proportionally higher for people living with dementia without home care support or with a concurrent mental health disorder. This suggests that policies aimed at improving access to long-term care could benefit from considering equity factors, availability of formal and informal support, and the needs of people living with dementia with concurrent mental health disorders.