Formulating recommendations to improve care for persons living with dementia: deliberative dialogues with multiple stakeholders in the province of Quebec, Canada

Abstract

Background: Persons living with dementia and their care partners encounter many challenges within the health and social care system, including lack of information, support, counselling, and access to community services, as well as significant staff turnover in home care services. The objective of this study was to work with multiple stakeholders to formulate relevant and feasible recommendations to improve care for persons living with dementia and their care partners in Quebec, Canada.

Methods: We conducted deliberative dialogues in the context of a large mixed methods study on the care of persons living with dementia and care partners. First, we organized two deliberative dialogues with care partners to formulate recommendations informed by the quantitative and qualitative results of the large study. These recommendations were further discussed in a third deliberative dialogue focused on the prioritization of relevant and feasible recommendations by clinicians, health project managers, and decision-makers. We performed a thematic analysis of the data using a multi-level framework: structural, organizational, provider, and patient perspectives.

Results: Participants formulated 14 recommendations. Two structural-level recommendations included fighting ageism and ensuring the same access to services in the whole province. Three organizational-level recommendations involved improving interdisciplinarity collaboration, improving access and follow-up in primary care, and adapting emergency departments. Additionally, two organizational-level recommendations were specific to healthcare crisis management (such as the COVID-19 pandemic): ensuring both the regular communication and the flexibility of implemented rules. Four provider-level recommendations encompassed providing more training on dementia, offering more training on levels of care, reviewing the relationship-based approach in training programs, and revising and optimizing medications. There were three patient-level recommendations including strengthening partnerships with persons living with dementia and care partners, guaranteeing personalized services and care, and reinforcing support for care partners.

Conclusion: The deliberative dialogues enabled us to formulate relevant recommendations based on research evidence, the lived experience of care partners, and the expertise of clinicians, health project managers and decision-makers. The results revealed several recommendations that will help mitigate the challenges faced by persons living with dementia and care partners in the health and social care system by informing policies and practices.

Plain Language Summary

Background and objective: Persons living with dementia and their care partners encounter challenges within health and social care systems. The objective of this study was to formulate relevant and feasible recommendations with multiple stakeholders to improve care for persons living with dementia and their care partners in Quebec.

Methods: We organized two conversations where we presented the results of the study to care partners. Together, we wrote recommendations for improving care and services for persons living with dementia and their care partners. These recommendations were discussed in a third conversation focused on the prioritization of relevant and feasible recommendations by clinicians, health project managers, and decision-makers.

Results: Participants formulated recommendations. Two socio-cultural and community level recommendations included fighting ageism and ensuring the same access to services in the whole province. Three recommendations for organizations are (1) improving collaboration between difference clinicians (for example, nurses, doctors…), (2) improving access and follow-up with family doctors, and (3) adapting emergency departments to the needs of persons living with dementia. Four health provider-level recommendations are: (1) providing more training on dementia, (2) providing more training on goals of care respecting patient’s wishes and values, (3) reviewing the relationship-based approach in training programs, and (4) revising and optimizing medications. There were three patient-level recommendations to (1) strengthen partnerships with persons living with dementia and care partners, (2) to guarantee personalized services and care, and (3) to reinforce support for care partners.

Conclusion: The results revealed several recommendations that will help mitigate the challenges faced by persons living with dementia and care partners in the health and social care system and inform policies and practices.