Human rights of persons with dementia and their care partners: An exploratory study

• Respect for human rights represents an adversity for persons living with dementia. • This study highlighted the existing challenges intensified by the pandemic. • The experiences in Quebec, Ontario, Saskatchewan, and Alberta provinces were similar. • It is key to maintain access to care and empower PLWD and care partners. • Healthcare systems should be prepared to guarantee non-discriminatory practices. Background: Human rights concerns are well documented in the care for persons living with dementia (PLWDs), who often face isolation, exclusion, abuse, injustice, and marginalization. Aim: This study explored the experiences of PLWDs and their care partners (CPs) with health and social services in Canada during the COVID-19 pandemic, through a human rights lens. Methodology: A qualitative multiple case study using a participatory approach was conducted between April 2022 and April 2023. Semi-structured interviews were held with 11 PLWDs and 55 CPs across Quebec, Ontario, Saskatchewan, and Alberta. Guided by the World Health Organization Framework on human-rights for PLWD, a hybrid thematic analysis was conducted within each province, followed by cross-provincial synthesis. Results: Four major themes were identified: 1) Health and social care professionals’ practices and behaviors; 2) Care partners’ role and burden; 3) Unpreparedness of the healthcare system; 4) Public health measures. Conclusion: PLWDs experienced widespread rights violations, largely due to the cognitive nature of the illness. Despite regional differences, a shared experience of rights infringement was evident. Findings underscore the need for meaningful involvement of PLWDs and CPs in care decisions, accessible rights education, and sustained access to services. Tailored policies must address the needs of PLWDs and CPs, and decision-makers should carefully weigh the risks and benefits of allowing CPs into care facilities.