1.4 Get trustworthy, up-to-date information

Some people prefer to have as much information as possible, and others prefer to focus on what they need to know right now. In addition, people like to receive information in different forms – online, written documents, videos or podcasts, learning from others, being involved in a support group, or taking courses. Choose what information you need, and in what form.

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’ a website developed by McMaster University in Ontario, Canada has a series of 20-30 minute video lessons on a range of topics about dementia.
• You can also print or read online booklets on the topics of Introduction to Dementia, The Dementia Compass, and Later in the Dementia Journey by the Horizon Health Network in New Brunswick, Canada.

Books about dementia

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

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 books by contacting your local Alzheimer’s Society. 

Online videos or podcasts about dementia

• Dementia Alliance International (DAI) has many videos about dementia on their YouTube Channel. You might like to start with “I’ve been Diagnosed with Dementia – What’s Next. Later on this page we talk about DAI in more detail.
• The Dementia Dialogue podcast series features people with dementia and carers 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 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.  
• At some support groups, you can attend by yourself, or bring a family or friend care partner with you. Visit or call your local Alzheimer’s Society for information about support groups and educational activities in your area.  

Learn from others with dementia

• Dementia Alliance International (DAI) is a collaboration of like-minded people living with dementia who provide a unified 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.
• DAI runs online peer to peer support groups, and hosts virtual cafes and an educational webinar series for members around the world. Membership and services are free for people with dementia.
• The By Us For Us© Guides were created 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.  
• Dementia Connections Magazine was founded in 2017 by Lisa Poole in response to challenges 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 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

Some people want more detailed information 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, 7-week online courses about dementia for people who live anywhere in the world. People with dementia have found these courses really useful and enjoyed completing them. The courses are known as Massive Online Open Courses or ‘MOOCS’. MOOCS offer lots of good quality information and you can interact online with your lecturers and others doing the course.