1.4 Get trustworthy, up-to-date information

When someone is diagnosed with dementia, some care partners prefer to have as much information as possible, while others prefer to focus on what they need right now. In addition, people like to receive information in different forms – online, written documents, videos or podcasts, learning from others, getting involved in a support group, or taking courses. Choose what information you need, and in what form.

Read online materials about dementia

• In addition to our website, the Alzheimer’s Society of Canada has trustworthy online material that you can explore at your own pace. Despite their name, the Alzheimer’s Society provides information on more than just Alzheimer’s disease. They have very good information about other types of dementia and Mild Cognitive Impairment (MCI) as well.
  
• ‘iGeriCare’ is a website developed through McMaster University in Ontario, Canada. It has a series of 20–30-minute video lessons on a range of topics about dementia.
• You can also print or read online booklets (click “Health Information Resources” and “Dementia”) by the Horizon Health Network in New Brunswick, Canada, on the topics of: Introduction to Dementia, The Dementia Compass, and Later in the Dementia Journey.
• The Steinberg Centre for Simulation and Interative Learning at McGill University was supported by the Grace Dart Foundation for the creation of a new McGill dementia educational booklet. With engaging illustrations and a friendly writing style, this approachable guide covers a wide array of topics to assist both the person living with dementia and their care partners. It includes information on the science and progression of dementia as well as practical advice on safety and self-care.
• The Appui in Quebec developed many different online resources to help care partners understand and manage their journey.
• McGill University developed an activity booklet for caregivers and their loved ones who are living with dementia.

Read books about dementia

Some people living with dementia have written books about their experiences. Here are some examples of books written by people living with dementia in Canada.  

• For This I am Grateful. Living with Dementia by Christine Thelker, Auston Macaulay publishers. ISBN: 9781645756996
• Dignity & Dementia: Carpe Diem. My Journals of Living with Dementia by Mary Beth Wighton, 2021, FriesenPress. ISBN: 9781525570896
• The Care of the Older Person brings together some of today’s most experienced professionals to provide concrete answers to care providers of all kinds. This book includes information for care partners (i.e. family and friends). The video linked here describes this book, and can help you decide if you would like to read it. 

To find more books about dementia, the Alzheimer’s Society of Canada has a national resource library. You may be able to borrow a physical copy of some of the books by contacting your local Alzheimer’s Society.  

Online videos and podcasts about dementia

• Dementia Alliance International (DAI) is a collaboration of like-minded people living with dementia who provide a voice of strength, advocacy, and support in the fight for individual autonomy for people with dementia. DAI provides education and awareness about dementia, to reduce stigma and discrimination and to improve the quality of the lives of people with dementia. DAI is for people with dementia by people with dementia. As a care partner, you may want to encourage the person you support to connect with DAI.
• Dementia Alliance International has many videos about dementia on their YouTube Channel 
• If you prefer to ask someone your questions rather than search online, Dementia Australia has a free, 24-hour telephone helpline 1800 100 500The helpline advisor can post or email you information if you ask.
• McGill Dementia Education Program has many podcasts to support caregivers. For example, linked here is a podcast on living well with dementia with Mary-Beth Wighton and Roger Marple
• The Dementia Dialogue podcast series features people with dementia and care partners talking about their experiences adapting to and living well with dementia. Check out Season 1: Mapping the Dementia Journey. 

Support groups

• Support groups are another way to learn about dementia. These groups can be especially good at providing you with the opportunity to learn more about dementia, meet other people who are going through the same situation, and ask questions. Some people find support groups helpful because they aren’t sure yet what they need to know. 
• You can attend some support groups by yourself while others are open to both you and the person you are supporting. 
• George and Joan became involved with the Alzheimer Society in their community shortly after Joan’s diagnosis. That is when George started attending a support group. He found the group very supportive, and he receive some good resources. Read more about George and Joan here.
• Visit or call the Alzheimer’s Society of Canada or your provincial (or local) chapter for information about support groups and educational activities in your area.  

Connecting with people who have dementia or care for someone with dementia

Dementia Alliance International 

• Dementia Alliance International (DAI)  runs online peer to peer support groups, as well as hosting virtual cafes and an educational webinars series for members around the world.  Membership and services are free for people with dementia. See if this might interest the person with dementia in your life. 

By Us For Us (BUFU) Guides 

• A number of years ago, a group of people living with dementia decided to develop a guide that included tips and strategies for managing the changes that can happen with dementia. The guide was developed BY people living with dementia FOR people living with dementia, and have become known as the By Us For Us© (or BUFU) guides. There are now a series of 15 guides for people living with dementia and for care partners, covering a range of topics. Visit the Schlegel-UW Research Institute for Aging to download or order copies of the BUGFU Guides. 

Dementia Connections Magazine 

• Dementia Connections magazine was founded in 2017 by Lisa Poole in response to the many challenges faced in accessing dementia-related health and social supports. The magazine was developed to reduce stigma and increase public awareness of supports and services for families impacted by dementia, to encourage participation in research, and to serve as a resource for the healthcare workforce. Originally, the magazine was launched for those in the Calgary area. In spring 2021, Dementia Connections is expanded to readers across Canada. Contact Dementia Connections to subscribe to the Dementia Connections magazine and sign-up for their newsletter. 

Online courses about dementia for the public

Some people want more information in more detail about dementia. A bonus benefit is that learning improves brain health.

• The Murray-Alzheimer Research and Education Program (MAREP), located at the Schlegel-University of Waterloo Research Institute for Aging offers a 6-module course called “LIVING the Dementia Journey (LDJ)”. This program is evidence-informed and provides training for people who support those living with dementia. The course emphasizes gaining awareness and understanding about dementia, and was developed in collaboration with people living with dementia and their family and friend care partners.
• The University of Tasmania offers free, online 7-week courses about dementia for people living anywhere in the world. Care partners, family members, friends and people with dementia have found these courses really useful and enjoy completing them. The courses, known as Massive Online Open Courses or ‘MOOCS’, offer lots of good quality information and you can interact online with your lecturers and others doing the course.
• The McGill Dementia Education Program to Support Caregivers provides public lectures on dementia.