Many caregivers for those living with dementia are family members and friends who sacrifice their time—and even compromise their own health—to care for their loved ones. However, family and friends often lack training and support, which can put them at risk of suffering from stress and burnout.
A new program at McGill seeks to change that. Ten Online Modules over Ten Weeks for Adult Learners (TOTAL) eLearning is an online-based education program still in development that aims to educate caregivers about dementia.
Today, more than 55 million people worldwide are living with dementia, with the most common form being Alzheimer’s disease. As a progressive disease, dementia starts with memory loss and eventually progresses to losing the ability to eat, walk, and communicate. Compared to those caring for healthy seniors, caregivers for seniors with dementia feel more distress from the extended hours they put in, as well as navigating the cognitive, mood, and behavioural symptoms associated with dementia.
This new program will be based on the in-person workshops from the McGill Dementia Education Program founded by Claire Webster, a certified Alzheimer’s care consultant. Webster, whose mother was diagnosed with Alzheimer’s disease in 2006, felt wholly unprepared for taking on the role of a caregiver.
“I got absolutely no information or education at all about the illness and as a result, it definitely had an impact on the quality of care that my mother received,” Webster said in an interview with The McGill Tribune. “It had a ripple effect on my health and a ripple effect on my family.”
Webster started volunteering at various Alzheimer’s disease groups, teaching medical students about post-diagnostic care and eventually collaborating with McGill clinician-scientists Dr. Serge Gauthier and Dr. José Morais to develop caregiver workshops in 2017. The workshops covered topics such as safety and caregiver burnout, and consisted of simulated scenarios portrayed by actors.
“[The workshops] had a very powerful effect, because a lot of these caregivers had never been educated [about dementia] before,” Webster said.
However, these in-person workshops were limited to Montreal and could only accommodate a certain number of participants. Caregivers also needed to leave their patient partners to attend these workshops. Yet, even before the pandemic, Webster envisioned an online program that centres accessibility, flexibility, and support.
That is how the collaboration with McGill professor Tamara Carver began. Carver, the Director of the Office of Education Technology and E-learning Collaboration for Health (Ed-TECH) at the Steinberg Centre for Simulation and Interactive Learning is tasked with leading the transition of the program to an online format. Recently, the Public Health Agency of Canada granted the project over $750,000 in funding to develop the online program, which is set to launch in October 2022. Accessibility is key: The program will be delivered in both English and French, and tablets will be available on loan to participants in remote areas with minimal internet access.
The program will also undergo feedback from the caregiver participants to ensure that it can be reworked to accommodate changing concerns and demands.
“We want to know: Does it meet the needs of the participants? Do they feel more supported? Are they more confident in their ability as caregivers?” Carver said in an interview with the Tribune. “This is the exciting aspect about creating community education. Our goal is to help them and also learn from them in a community-based participatory approach.”
Both Webster and Carver emphasized the importance of the various departments and institutions that came together to develop the Dementia Education program, upon which the TOTAL eLearning program will be based.
“What the Office of Ed-TECH is doing […] is one important project,” Carver said. “What the acronym stands for, to me, is really important [….] The ‘collaboration’ is really key to the success of the projects we take on.”
