New website assists those with dementia and their families

Living with dementia website screenshot.

A diagnosis of Alzheimer’s disease or a related dementia leaves both the person with the illness and their family members with many unanswered questions.  Researchers at the University of Waterloo and McMaster University are leading a project that has resulted in the creation of a new web-based resource that provides valuable information that will help navigate the journey of living with dementia.

The Living with Dementia website was designed to provide persons newly diagnosed with dementia and those who care for them with the information and resources needed to live well with an illness causing dementia. This new research-based website, available in both English and French, was created in collaboration with persons living with dementia and their family members and care providers.

“I would have been ecstatic to have walked away from my doctor’s office with this information; something that would allow me to be proactive and give me a sense of direction, instead of sitting in my car crying and feeling hopeless,” said Brenda Hounam, who was diagnosed with dementia 10 years ago. “This website is a lifeline. It is a place to get safe, hopeful information.”

The website covers a wide range of information with topics identified by those living with dementia, including answers to questions surrounding health care, how to continue living well with dementia, how to ensure they are receiving the right care and support to meet their needs, and how to begin the process of planning for the future. 

“Persons with dementia and their families can continue to live well and have meaningful lives when they have the information and resources available to support them in doing that,” said Sherry Dupuis, co-investigator and Director of the Murray Alzheimer Research and Education Program (MAREP) at the University of Waterloo, and a professor of recreation and leisure studies. “What makes this resource unique is that it was developed specifically by persons with dementia and their care partners working actively with our extensive team of researchers, educators, health professionals, pharmacists, and family health team representatives. This ensures it is relevant and easily accessible to persons and families diagnosed with Alzheimer’s disease or another related dementia.”

Carrie McAiney, co-investigator, and associate professor in the Department of Psychiatry & Behavioural Neurosciences at McMaster University adds that this resource will be a valuable tool for professional health care providers and community organizations supporting those whose lives are touched by dementia. "This project will help physicians, pharmacists, Alzheimer Societies and others find ways to integrate the Living With Dementia resource into their everyday practice so it can be shared with those living with dementia and their family members,” she said.