The fragmentation of the healthcare system lede Isabelle Vedel, professor and public health physician at McGill University, to examine an important issue: how to better support people with Alzheimer’s disease or a major neurological disorder, as well as their caregivers. Too often left to fend for themselves after diagnosis, these individuals follow chaotic care pathways, marked by service disruptions and avoidable visits to the emergency room. The COVID-19 pandemic has exacerbated these flaws, highlighting the urgent need to adapt our care structures and public policies to this growing reality.
To understand and improve this continuum of care, the Research on Organization of Heathcare Services for Alzheimers (ROSA) team, led by Dr. Vedel, adopted a mixed methodology combining administrative data, interviews, and co-design of tools. Analysis of databases from several provinces revealed heavy use of hospital service by people living at home, while regular primary care follow-up with a family physician significantly reduces the number of hospitalizations and emergency room visits. Qualitative studies gave a voice to people with dementia, their caregivers, and healthcare professionals, revealing their specific needs in terms of support, home care, and clear information. This research led to the creation of the Forward With Dementia website, a practical and scientifically validated guide to living with dementia.
Beyond research, the work of Isabelle Vedel and her team directly inspired the development of Quebec’s new Alzheimer’s policy. Her approach, based on evidence and user participation, aims to establish a truly integrated, person-centered continuum of care. By promoting collaboration between researchers, decision-makers, and citizens, this work is helping to transform the care of Alzheimer’s disease, making it more responsive to individual needs.
References :
- Lemay-Compagnat, A., Couturier, Y., Rojas-Rozo, L., Roach, P., O’Connell, M. E., McAiney, C., Cetin-Sahin, D., Arsenault-Lapierre, G., Neiterman, E., Morgan, D., Lafleur, M.-C., Dumaresq, D., Trépanier, T., Lea, P., Eagleson, H., O’Connor, D., Peters, J., Fernandez Loughlin, R., Wighton, M. B., Vedel, I., for The COVID-ROSA Research Team (2025). Human rights of persons with dementia and their care partners: A multiple case study of their experiences with health care and services. Archives of Gerontology and Geriatrics Plus, 2(4), 100217.
- Cetin-Sahin, D., Godard-Sebillotte, C., Bronskill, S. E., Seitz, D., Morgan, D. G., Maclagan, L. C., Sourial, N., Quail, J., Gruneir, A., Wilchesky, M., Rochette, L., Massamba, V. K., Youngson, E., Diong, D., Smith, E. E., Arsenault-Lapierre, G., Le Berre, M., Maxwell, C. J., Kosteniuk, J., Bosson-Rieutort, D., Wang, T., Miskucza, K., et Vedel, I., for The COVID-ROSA Research Team (2025). The COVID-19 pandemic and dementia: A multijurisdictional meta-analysis of the impact of the first two pandemic waves on acute health-care utilization and mortality in Canada. Canadian Geriatrics Journal, 28(1), 16-30.
- Godard-Sebillotte, C., Strumpf, E., Sourial, N., Rochette, L., Pelletier, E., & Vedel, I. (2021). Primary care continuity and potentially avoidable hospitalization in persons with dementia. Journal of the American Geriatrics Society, 69(5), 1208-1220.