Developing an International Public and Patient Involvement Group for Dementia Research

Developing an International Public and Patient Involvement Group for Dementia Research

Authors: Danielle Just, McMaster University and Emily Di Sante, McMaster University
Date of publication: June 2021
Keywords: Patient and Public Involvement, family carers, end-of-life care, good death


Canada is one of six research partners involved in mySupport study. The goal of this study is to implement the evidence-based Family Carer Decision Support educational intervention in nursing homes in six countries in Europe and Canada. The main aim of this educational intervention is to assist family carers of people with dementia in decision making processes about end-of-life care for their relatives. You can learn more about this study by visiting or watching this short research video: Link

Why facilitate international public and patient involvement?
In early 2020, Canadian research team members began planning for an international public and patient involvement advisory group. The purpose of this public and patient involvement group is to:
(a) involve family carers in the design and implementation of mySupport study,
(b) advise researchers working within the study,
(c) share the viewpoint of family carers for individuals living in long-term care homes with advanced dementia.

The recruitment process
The virtual recruitment of family carers for individuals living in long-term care homes with advanced dementia began during the spring and summer of 2020. As the world navigated the COVID-19 pandemic, recruitment went quickly as there was an overwhelming response. The panel was established in October of 2020 and was formally named the “Strategic Guiding Council” following an online voting process by mySupport researchers. It is made up of 15 English-speaking family carers, from Canada, the United Kingdom, the Netherlands, Ireland, and the Czech Republic. Members participated in an individual virtual orientation session with the Patient and Public Involvement Coordinator where they completed an intake interview about meeting, communication and activity preferences.

Understanding volunteers’ motivations for involvement the research
The Strategic Guiding Council had its first virtual meeting in November 2020 via Zoom at which members were asked to share their motivations for joining. Council members reflected that joining the international patient and public involvement panel allowed them to continue to give back to long-term care, at a time when so many of them were no longer able to volunteer in-person due to COVID19 restrictions. They also felt more comfortable communicating virtually than ever before as so much of their social interactions had already moved online. Nearly every member stated that their main motivation for joining the Council was to make a difference for people who are caring for their loved ones in long-term care. Members stated that they want to empower families who may not be thinking about end-of-life care to recognize when their loved ones are at the end stages of their disease. As one member stated, “We owe it to future families to have this process right”. As the conversation continued more members shared their motivations for joining.

“As the family carer, the death of your loved one is the most significant event in your life. The experience of a good death or a bad death has a significant impact on the family carer and their life after the passing of their loved one.”

                                                                                                                Bereaved Family Carer, Contribution

Members went on to say that future family carers deserve to experience a “good death” of their loved one. The term “good death” or “successful dying” is defined differently by patients/ residents, family members and health care providers.1 The term is used to describe the death of an individual that experience some or all of the following concepts: preferences for dying process, pain-free status, emotional well-being, life completion, quality of life, dignity, and presence of family, religiosity/ spirituality.1 While the clinical definition of a “good death” or “successful dying” is still under debate by international researchers. Members from the Strategic Guiding Council were in agreement that a “good death” included the presence of family.

Management of international patient and public involvement
The Strategic Guiding Council meets monthly to advise on the design and implementation of mySupport study. Members are dedicated to the research process and to improving the experience of future family carers. To date the Council has contributed to this study by providing their perspective and feedback on mySupport study research outs including research videos, a flyer and a research participation poster and the recruitment strategies, baseline questionnaires for family carers, and initial coding of environmental scan data.



1Meier, E. A., Gallegos, J. V., Thomas, L. P. M., Depp, C. A., Irwin, S. A., & Jeste, D. V. (2016). Defining a good death (successful dying): literature review and a call for research and public dialogue. The American Journal of Geriatric Psychiatry, 24(4), 261-271.


Meet the authors: 

Emily Di Sante, Research Co-ordinator, McMaster University Canada

Emily is a Research Coordinator in the School of Nursing at McMaster University in Canada. She has a Master’s in Political Science, a Certificate in Project Management and a BAH in European Studies. Her research interests include advance care planning and palliative care in long-term care, knowledge translation, evaluation, tobacco control and public health.


Danielle Just, Research Assistant, McMaster University, Canada

Danielle is a PhD Candidate at the University of Toronto and a Research Assistant in the School of Nursing at McMaster University in Canada. Danielle has a Master’s in Health Leadership and Policy from the University of British Columbia and a BSc in Kinesiology. Her research interest include end-of-life care, long-term care homes and personal support workers.