The impact of the COVID-19 pandemic on healthcare use, mortality, and human rights of persons living with dementia in Canada

Context: Studies investigating the impact of the COVID-19 pandemic on persons living with dementia (PLWD) were conducted in a single jurisdiction or on a limited number of outcomes.

Objective: Describe the immediate impacts of the pandemic on PLWD and care partners (CPs) and develop recommendations.

Study Design: Multiphase mixed-methods design using participatory approach.

Setting: Alberta, Ontario, Saskatchewan, Quebec.

Population: PLWD aged 65+, CPs, other stakeholders.

Methods: Retrospective cohort study using population-level administrative health data. 2019/pre-pandemic and 2020/pandemic cohorts included 167,095 vs. 173,240 PLWD living in the community and 93,374 vs. 92,434 PLWD residing in nursing homes (NHs), respectively. Qualitative multiple case study involved 66 semi-structured interviews with PLWD and CPs. Deliberative dialogues were held with 20 CPs, clinicians, managers, and decision-makers.

Outcomes: Rates of all-cause emergency department visits, hospitalizations, and mortality. Experiences in terms of respect for human rights.

Analysis: We compared 2020 to 2019 in 3 periods (1st wave; interim period; 2nd wave) and conducted meta-analyses on the provincial estimates. Qualitative analysis was guided by the World Health Organization Framework ensuring the human-rights-based approach (participation, accountability, non-discrimination and equality, empowerment, and accessibility). Dialogues were analyzed with a multi-level framework (structural, organizational, provider, and patient).

Results: In the first wave, community and NH populations experienced significant declines in the rates of emergency department visits (36% vs. 40%) and hospitalizations (25% vs. 22%). Mortality was higher (up to 13%) in the community and in NHs (up to 36%). Human rights of PLWD and CPs were not fully respected during the pandemic. The problems existed before were exacerbated by the burden of the pandemic. The main recommendations included fighting ageism, equitable access to services, interdisciplinary collaboration, regular communication and flexibility during health crises, more training, and support for CPs.

Conclusions: It is key to prepare for future health crises, ensuring that PLWD receive necessary care and services, do not have such a high mortality rate, and their rights are fully respected. Attention should be equally given to persons living in their homes and NHs. Findings inform practices and policies to improve the health and social care system.