CIHR awards CERAH Research Affiliates with 2 year grant to Develop a Self-Management Program for Dementia

Self-management of chronic disease is becoming more common as an approach to chronic disease prevention and management. However, self-management has typically been focused on chronic diseases such as cancer, arthritis, and diabetes. Self-management of dementia is only starting to emerge as a focus of discussion, particularly in Europe. Given the predictions of incidences of dementia by the Rising Tide study (Alzheimer Society of Canada, 2010), self-management of dementia is necessary to ensure quality of life for persons with dementia and their partners-in-care and critical to meeting the needs of this rapidly growing population.

The goal of this study is to accelerate the translation of knowledge into action by developing a self-management program for people living with dementia, and examining the process whereby people with dementia and other knowledge users are involved in the program development process. Using an integrated knowledge translation approach through participatory action research (PAR), the intent of this research is to reflect on and evaluate the collaborative process whereby a self-management program for people with early stage dementia (hereafter referred to as self-management of dementia program or SMODP) is developed, tailoring knowledge to their unique needs. Specifically, the research questions guiding this study are:

1) How do researchers and knowledge users, particularly people living with dementia, work together in the PAR process to develop a SMODP?

2) How are the needs and voices of people living with dementia heard, respected, and incorporated into a collaborative planning process with researchers and other knowledge users?

3) How do barriers and facilitators shape the collaborative program development process? What supports and resources facilitate the process?

4) What structures and processes for the delivery of a SMODP do knowledge user groups think to be the most effective?

5) What are the experiences of various knowledge user groups and researchers in participating in the PAR process through developing a SMODP?

Funded by:  The Canadian Institute of Health Research (CIHR), Knowledge Translation Branch, Knowledge-to-Action Grant

CERAH Research Affiliates and staff involved in the project:

Principal Investigator: Dr. Elaine Wiersma

Co-Investigators: Dr. Mary Lou Kelley and Dr. Michel Bedard

Project Coordinator:  Ruth Wilford

For more information about the project, and those involved, click here.