Anyone living with dementia or caring for someone with dementia has probably, at some point, wished for a useful manual or a hands-on guide to help navigate the course of an often unpredictable and exasperating illness.
That’s what the McGill Faculty of Medicine and Health Sciences Dementia Education Program (DEP) team had in mind when they created Dementia, Your Companion Guide.
Launched just a few weeks ago, this free educational guide provides answers to many of the pressing questions and concerns which patients and care partners have about dementia. At 184 pages, the booklet is comprehensive but written in a conversational and accessible style for both patients and care partners, and includes information on the science and progression of dementia, as well as practical advice on safety and self-care. With engaging illustrations and clear, simple language, the guide succeeds in covering a wide array of topics to assist both the person living with dementia and their care partners.
“As a former care partner who was provided with this diagnosis [for my mother] many years ago and not provided with any type of information or education, I always dreamt of having a prescription of care, something to provide to family members and the person receiving the diagnosis,” said Claire Webster, DEP founder and former care partner, at the virtual launch of the booklet.
Webster is one of three main contributors to the booklet along with geriatrician Dr. José A. Morais and neurologist Dr. Serge Gauthier. The project was developed in partnership with the McGill University Research Centre for Studies in Aging, the Division of Geriatric Medicine, the School of Physical and Occupational Therapy, and the School of Social Work. The DEP worked closely with the Office of Education Technology and E-learning Collaboration for Health, based at the Steinberg Centre for Simulation and Interactive Learning, to bring the project to life by applying principles of instructional design and leveraging educational technology.
Support for the project was provided by a $250,000 donation from the Grace Dart Foundation.
“It's quite clear that one of the greatest needs of care partners and people living with dementia is information,” said Morais, Director of the Division of Geriatric Medicine at McGill University, the McGill University Health Centre and the Jewish General Hospital. “This is what motivated me to support the creation of this booklet.”
“The first part [of the booklet] is really written for the person living with dementia and the second part is about more specific advice for the care partner,” added Gauthier, Professor Emeritus in the McGill Faculty of Medicine and Health Sciences and former Director of the McGill Centre for Studies in Aging.
Part one of the booklet describes an extensive range of dementia conditions, including some that people may be less aware of, like frontotemporal dementia, which typically affects women in their 50s.
As patients and care partners know only too well, as the disease progresses, more issues emerge and more challenges arise. The booklet walks readers through the stages of the disease as, for example, patient self-care activities become more difficult – whether it’s taking a bath, getting dressed, grooming, or going to the bathroom. The guide even takes readers on a room-by-room tour of a house highlighting, through text and illustrations, how to safeguard the home for patients.
Part two of the booklet focuses on care partners, defining the role of a care partner, recognizing and dealing with emotions, adopting communication strategies and offering dozens of helpful coping tips.
“This is something that unfortunately is so overlooked,” said Webster. “We have a tendency, as care partners, to put ourselves last so an entire part of the guide is really devoted to care partners and how to take care of ourselves.”
Dementia, Your Companion Guide is now available as a free download in English and in French. The printed versions, in French and English, will be available in December. Over the coming year, the guide will also be made available in additional languages to reach a wide and diverse audience.
Click here to view the digital version of Dementia, Your Companion Guide or download the PDF from this web page.
La version numérique française de « Démence, votre guide d'accompagnement » est disponible ici. Vous pouvez aussi télécharger la version PDF à partir de cette page web.
Watch the October 20 webcast, “Launch of a New Educational Guide for People Living with Dementia and their Care Partners.”