Research program

The number of people living with a major neurocognitive disorder (NCD) is increasing worldwide, and will affect 1.7 million Canadians by 2050. In Canada, the profile of people afflicted is rapidly evolving to include more and more older people from diverse ethnic or cultural backgrounds. According to the Dementia Alliance International, an organization made up exclusively of people living with an NCD from around the world, their wish is to maximize their well-being until the end of their lives. In Canada, however, most of them will end their life in a long-term care home (LTCH) as their health deteriorates. Therefore, their quality of life depends on the quality of care they receive. 

However, their communication difficulties make it difficult to determine the best care for them, which raises critical clinical and ethical issues. Three situations in particular raise such issues for these older people: the manifestation of responsive behaviours (e.g., vocal or aggressive behaviours), an NCD in addition to a severe mental health problem, and their end-of-life situation. These complex issues have a direct impact on their well-being, as well as on their family and formal caregivers, who are often at a loss as to the best interventions to implement. These issues are influenced by the meanings ascribed to NCDs, i.e., the significations underlying our actions, which are influenced by the social context, including culture and ageism. 

This research program will help to improve the quality of care related to these complex and crucial clinical and ethical issues for older people living with an NCD. The results of this program will provide a better understanding of these issues and enable us to propose actions to improve practices that consider the broader socio-cultural elements that directly influence all those affected by these issues. It will promote respectful and dignified care for an often neglected population, through local and international interdisciplinary projects that can open horizons and support innovation.