Acknowledgement for the Development of My Tools 4 Care

The idea for My Tools 4 Care (MT4C) began with a study of 80 caregivers of persons with dementia that intended to gain a better understanding of their hope, quality of life, and transitions.  The results highlighted the need for the creation of programs to help family caregivers of persons with dementia through the complex transitions they experience. With assistance from the Alzheimer’s Society of Alberta/NWT and the Alzheimer’s Society of Calgary, a Transition Toolkit was developed for caregivers of persons with Alzheimer’s disease and Related Dementias, in paper format. This Transition Toolkit was evaluated by 20 caregivers who found it to be easy to use and helpful in dealing with significant transitions. Feedback from these caregivers and findings from a study on family caregivers of older persons with dementia and multiple chronic conditions, have contributed to the present online version of the MT4C toolkit. My Tools 4 Care has been used by 198 caregivers of persons with dementia and multiple chronic conditions in Ontario and Alberta. These caregivers reported that the toolkit encourages self-reflection, validation, and confirmation as a caregiver. Moreover, the information in the MT4C toolkit helps caregivers anticipate and plan for the future, and can provide a new perspective on hope.

My Tools 4 Care would not have been possible without the support from the pan-Canadian research team, partners, and funders. We would like to acknowledge Dr. Wendy Duggleby from the University of Alberta, and Dr. Jenny Ploeg and Dr. Carrie McAiney from McMaster University, for their knowledge, hard work, and dedication in leading the study team through the development and evaluation of My Tools 4 Care.  As well, we would like to thank the co-investigators Dr. Maureen Markle-Reid, Dr. Allison Williams, Dr. Dorothy Forbes, Dr. Sunita Ghosh, and Dr. Jean Triscott; for their time and insight. Our deepest gratitude are also due to our partners at the Alzheimer Society of Alberta/NWT, Alzheimer Society of Calgary, Alberta Caregivers Association, Alzheimer Society of Brant, Haldimand Northfork, Hamilton, and Halton, Ontario, and the Alzheimer Society of Ontario; for actively assisting the research team during the evaluation of the toolkit. Finally, we would like to convey our gratitude to all those caregivers who helped to develop and evaluate My Tools 4 Care; and the University of Alberta Faculty of Nursing, the Canadian Institute of Health Research, the Aging Community and Health Research Unit, and Alberta Health Services for their funding support.

Acknowledgement for the Development of My Tools 4 Care – In Care

Family caregivers of persons living with dementia and multiple chronic conditions approached the research team and expressed a desire to have a resource to support them through the transitions they experience when their family member moves into a 24-hour care home. With input from these caregivers, a previously developed and tested online intervention for family caregivers of persons with dementia in the community, My Tools 4 Care, was revised to address the needs of caregivers of persons in a 24-hour care home. This new toolkit, called My Tools 4 Care-In Care (MT4C-In Care), was pilot tested by 37 caregivers in Alberta who found it easy to use, feasible, acceptable, and useful in helping caregivers through transitions. Following this pilot study, additional funding was received for a large national study of family caregivers of older adults living with dementia in long-term care. This study involved caregivers in Alberta, Saskatchewan, Manitoba, and Ontario who participated in focus groups (45 caregivers) and a large pragmatic trial (234 caregivers). The current version of MT4C-In Care was revised based on what we learned from these caregivers. It is important to note that the majority of the participants were white, and were the spouse or the child of the older adult living with dementia. Therefore, the toolkit may not reflect the needs of caregivers with other characteristics or backgrounds. The toolkit was translated from English to French in 2021. Twelve caregivers in Quebec provided feedback on the toolkit during 3 virtual focus groups. Suggested revisions have been made, and we have invited 20 additional francophone caregivers to use MT4C-In Care over a 2-month time period. Feedback obtained during telephone interviews will be incorporated into the final French version of MT4C-In Care. 

MT4C-In Care would not have been possible without support from the pan-Canadian research team, partners, and funders. We would like to acknowledge the primary investigator Dr. Wendy Duggleby from the University of Alberta, for her knowledge, hard work, and guidance of the study team through the initial development and evaluation of MT4C-In Care. As well, we would like to thank the co-investigators of the pilot study Dr. Jenny Ploeg, Dr. Carrie McAiney and Dr. Sharon Kassalainen from MacMaster University, Dr. Sunita Ghosh, Dr. Dorothy Forbes and Dr. Cheryl Nekolaichuk from the University of Alberta, Dr. Jayna Holroyd-Leduc from the University of Calgary, Dr. Shelley Peacock from the University of Saskatchewan, Dr. Kevin Brazil from Queen’s University in Belfast, and Dr. Jasneet Parmar from Covenant Health for their time and expertise. We would also like to acknowledge and thank Drs. Wendy Duggleby and Hannah O’Rourke, University of Alberta, for co-leading the national study. We appreciate the support of the provincial leads: Drs. Wendy Duggleby and Hannah O’Rourke from the University of Alberta, Dr. Pamela Baxter from McMaster University, Dr. Shelley Peacock from the University of Saskatchewan, Dr. Genevieve Thompson from the University of Manitoba, and Dr. Veronique Dube from the Université de Montréal. We thank the contributions of our research team members Drs. Sunita Ghosh and Cheryl Nekolaichuk from the University of Alberta, Jayna Holroyd-Leduc from the University of Calgary, and Carrie McAiney from the University of Waterloo. Our deepest gratitude are also for those caregivers who shared their insight and helped the research team during the creation and evaluation of MT4C-In Care and to the advisory committee members and partners at the Alzheimer Society of Alberta/NWT, Institute for Continuing Care Education and Research (ICCER), Canadian Hospice Palliative Care Association (CHPCA), and ATMIST. Finally, we would like to convey our gratitude to our funders at the Canadian Frailty Network, Covenant Health Network of Excellence in Senior’s Health and Wellness, the Public Health Agency of Canada Dementia Community Investment, the University of Alberta Faculty of Nursing, and the Alzheimer Society of Alberta/NWT.