In Fall 2011, I became an active volunteer with Alzheimer Groupe Inc. (AGI), a not-for-profit organization that offers support services to families and individuals whose lives have been touched by dementia-related illnesses. I mentored other families who were in the midst of the same journey that I was with my mother. I also became a spokesperson, talking about the toll that the disease was taking not only on the individual but on family caregivers as well.
During my first few months there, one of the social workers received a phone call from a professor at McGill’s School of Physical and Occupational Therapy. Dr. Dana Anaby asked if there was a caregiver who would be willing to share their story with students during a class. I accepted the invitation and put together a little PowerPoint presentation of photos of my mother with our family as well as some important messages that I wanted to share about what we, as caregivers, expect from the medical community: compassion, listening, empathy and quality of care.
This would be my very first public speech in front of so many people (close to 60 students) and I had a difficult time getting through it as I was filled with emotion and couldn’t control my tears. The students applauded my speech and then the most remarkable thing happened: some lined up, waiting to speak to me and told me that they too were living the same journey in their families. Some of them hugged me, others cried and I cried with them. Thanks to Dr. Isabelle Gélinas, Associate Professor and Graduate Program Director, I have become the annual guest lecturer on the topic of caregiving at the School of Physical and Occupational Therapy ever since.
My speech to students would evolve according to where I was on my journey caring for my mother (who died in 2016), and the emotional impact it was having on me and my family. I also began to use my time with students to share important lessons that I had learned along the way about how to properly care for and communicate with someone who has dementia.
In 2017, I was invited by McGill’s Steinberg Centre for Simulation and Interactive Learning (SIM Centre) to develop a community outreach program to educate family caregivers looking after a person living with dementia, a pilot project which is now known as McGill’s Dementia Education Program. This initiative is a collaboration between the Division of Geriatric Medicine, McGill’s Research Centre for Studies in Aging as well as the SIM Centre. I work with a team of dedicated multidisciplinary health care professionals to develop programs that educate and support family caregivers, along with health care professionals and medical students of the future, with a focus on patient-centred care.
I am extremely grateful to the Faculty of Medicine and Health Sciences, in particular to Dr. David Eidelman, Vice-Principal (Health Affairs) and Dean of the Faculty, for providing me with the opportunity to develop this program. I did not attend the school and did not have any prior affiliation to the university other than being an ordinary citizen who wanted to “change the health care system”.
One of my absolute greatest honours is to be able to lead this program with Dr. José Morais and Dr. Serge Gauthier whom Dean Eidelman assigned as the co-Academic/Medical Directors of the program in Fall 2018. These two great men have not only become my mentors and colleagues, but I have the privilege to call them my friends.
Over the years I have met numerous caregivers who have lived a similar journey to mine and the common thread among all of us is that we wish there would have been someone within the medical community giving us a “prescription of care” in terms of how the disease will progress, how to better navigate the journey and where to find the support we need.
In January 2021, McGill was commissioned by Alzheimer’s Disease International (ADI) to deliver the next two editions of the World Alzheimer Report on the crucial and inter-related topics of Diagnosis (2021) and Post-Diagnostic Support (2022). I had the great privilege of being invited to be one of four senior editors to develop these two reports, joining Dr. Gauthier, Dr. Morais and Dr. Pedro Rosa-Neto. Not only will we be able to highlight the expertise of McGill in the field of dementia to the world, but we will also be able to share our “prescription of care” that will educate so many people.