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Project 1: Innovations for a Better Future

Enhancing the Quality of Life for People living with Dementia and their caregivers in Canada

This research project focuses on improving the quality of life for people living with dementia and their caregivers in Canada. Alzheimer’s disease and related dementias pose significant challenges for society, with limited access to assessments, treatments, and management, leading to long waiting lists, delayed diagnoses, inadequate care coordination and poor service quality. These gaps result in inappropriate use of healthcare services, increased costs, and subpar experiences for patients and their caregivers.

Our previous research has identified some promising practices but also revealed shortcomings in interdisciplinary care, disclosure of diagnosis, management of behavioral and psychological symptoms of dementia and integration of Family Medicine Group (FMG) teams with home services and Alzheimer's Societies.

This project therefore aims to apply the knowledge gained to create positive changes with these three main objectives in mind:

1) Develop a repertoire of concrete strategies and innovative practices to enhance the lives of persons with dementia and their caregivers in Canada.

2) Understand the key determinants of negative outcomes.

3) Improve the quality of care and quality of life and prevent adverse effects for people living with dementia by using well-known change management strategies, such as quality improvement initiatives.

To achieve Objective 1, we will develop a repertoire of innovative practices by conducting an analysis of the environment of certain practices in Canada and a systematic review of innovative strategies/plans internationally. To achieve Objective 2, we will conduct a time-series study using data from the last 15 years from Quebec's administrative databases. To achieve Objective 3, we will support the implementation of quality improvement initiatives in FMGs who will develop action plans with their partners using the repertoire of innovative practices and guidelines (developed in Objective 1) and information on determinants of negative outcomes (identified in Objective 2).

The research team will implement an integrated knowledge exchange strategy, involving active collaboration among researchers, policymakers, managers, patient representatives and caregivers to produce concrete improvements in care for people living with dementia and their caregivers, while strengthening Canada's healthcare delivery system.

Project 2: Trajectories

Older adults’ trajectories of health and social care in Quebec

Navigating the healthcare and social services system can be complex, especially for older adults and their caregivers who interact with different care providers over time. This study aims to support the improvement of care integration in the healthcare and social services system through four key objectives.

Firstly, we are establishing a priority order for patient-centered relevant outcomes, based on previous international research and in collaboration with our stakeholders. Next, we are exploring trajectories, identifying factors influencing these trajectories and how they relate to the prioritized outcomes. We are also studying various trajectories, classifying them as preferable or less preferable in consultation with our stakeholders. Lastly, we are identifying innovative programs or policies in Quebec to determine their potential in enhancing trajectories of care.

To achieve these objectives, we are using qualitative and quantitative methods. We are engaging in deliberate prioritization and validation of outcome measures with our stakeholders. Using a dataset that links responses from the Canadian Community Health Survey to respondents' health administrative data, we are exploring and grouping trajectories, associating them with relevant outcomes.

Additionally, we are using an existing registry of innovative programs, developed with previous funding from the Canadian Institutes of health Research (CIHR), to identify programs beneficial for preferred trajectories. Lastly, we are consulting patients and practitioners to gather their suggestions on how to improve trajectories for everyone.

This work will support efforts to better integrate healthcare and social services, aiming to improve care trajectories and ultimately enhance the healthcare and social services system experience and outcomes.

Project 3: The Covid-19 Pandemic

Improving the care of older adults living with dementia across Canada during the COVID-19 pandemic

The COVID-19 pandemic has disproportionately affected people living with dementia because, not only are they more likely to develop severe complications, but their mortality rate is also significantly higher. These individuals are particularly vulnerable to the pandemic's consequences due to various factors: difficulty in remembering public health guidelines, disruptions of formal care and support networks (closure of day centres, virtual consultations with doctors, lack of workers and volunteers in home care and community services), and increased isolation, anxiety and depression due to social distancing measures. Caregivers have also been hit hard, facing increased stress, anxiety, and heavier workloads.

With the aim of promptly informing policymakers, healthcare system managers, clinicians, and community organizations, we are conducting a study in four Canadian provinces namely in Quebec, Ontario, Alberta, and Saskatchewan. This study aims to measure, describe and identify strategies to address the pandemic and its consequences among people living with dementia.

Using data from health administrative databases, we are assessing the impact of the pandemic and its consequences on the use of healthcare and social services, infection rates and mortality among people living with dementia. We are also gathering the experiences of people living with dementia and their caregivers through qualitative interviews. Lastly, we are organizing several deliberate dialogues online with key stakeholders (caregivers, clinicians, managers, and policymakers) to discuss the findings of our research, share promising approaches and formulate evidence-based recommendations to mitigate the negative effects of the pandemic and its consequences on people living with dementia and their caregivers.

Project 4: Transilab Laval-ROSA

Living Laboratory on Care Transitions

The Transilab Laval-ROSA project aims to consolidate the achievements of the Quebec Alzheimer Plan, prioritizing smoother care transitions between different key settings (e.g., between Family Medicine Groups, home care, and community services) to improve care for people living with dementia and their caregivers.

Transilab Laval-ROSA has six main objectives:

1) Establish a dashboard to monitor transitions.

2) Co-develop targeted transition interventions.

3) Continuously evaluate the results and implementation conditions of these projects.

4) Assess the effects and overall implementation of Transilab Laval-ROSA

5) Ensure its continuity.

6) Share this knowledge with other Integrated (University) Health and Social Services Centers.

This project is based on a participatory approach where professionals and researchers work together. Using the approach of a learning health system, we are employing a Living Laboratory design comprising of two stages (translating data into knowledge and then translating knowledge into practices), as well as combining quantitative and qualitative methods.

By improving diagnosis disclosure, early referral to appropriate services, and implementing a designated navigator, the care trajectories, management, support, and quality of life for people living with dementia and their caregivers will be improved. Transilab Laval-ROSA will therefore benefit patients and their caregivers, as well as frontline healthcare professionals who will be better equipped to manage often complex care, benefiting from a facilitated communication structure. Through this project, Transilab Laval-ROSA will enable CISSS de Laval to become self-sufficient in monitoring innovations and will support a learning healthcare system.

Project 5: Moving Forward

A guide to living with a major neurocognitive disorder

Despite numerous national guidelines for the diagnosis and management of Alzheimer’s disease and related dementias, people living with dementia and their caregivers are often dissatisfied with the diagnostic process and post-diagnostic support.

Working alongside people living with dementia, caregivers, and healthcare professionals, our objective is to design and implement tools and campaigns to improve the diagnostic and post-diagnostic processes in Canada, the Netherlands, the United Kingdom and Poland. We are also aiming to evaluate these campaigns.

First, from the perspective of people living with dementia, their caregivers, and healthcare professionals, we are exploring current experiences, barriers and facilitators to dementia diagnosis and post-diagnostic support through surveys and discussion groups. We are then creating international tools to help at-risk individuals and healthcare professionals follow the guidelines. We are also launching campaigns to change behaviors, based on the tools developed in these countries. We are assessing these campaigns to measure their impact on diagnoses and post-diagnostic experiences, as well as on healthcare professionals' attitudes. Finally, we are creating a guide explaining how to organize similar campaigns in other countries.

This project, called COGNISANCE, will provide internationally adaptable recommendations and tools for people living with dementia, their caregivers and healthcare professionals to make the diagnostic and post-diagnostic process as positive as possible. We will also share a guide to assist other countries in implementing their own change campaigns.

Project 6: Health Inequalities

Studies on health inequalities for people living with dementia

The ROSA team is interested in conducting research on health inequalities across sex/gender, socio-economic status, ethnic groups and urban/rural areas. One of our projects examines the sex differences and the use of health services. We have acquired the clinic-administrative data from four provinces, namely in Quebec, Ontario, Saskatchewan, Alberta and we will soon be analyzing the results.