In the spring of 2008, the Murray Alzheimer Research and Education Program (MAREP) with input from persons with dementia, family members and health care professionals identified their individual information needs in order to live with their diagnosis of a dementia.
We summarized the significant data received and through input with the above groups prioritized the information needs. The one definitive need expressed was information targeting persons with dementia and their family members at the time of diagnosis. The outcome was a dementia “kit” to be given persons with dementia and their family members at time of diagnosis.
In the spring of 2009, MAREP received funding from the Canadian Dementia Knowledge Translation Network (CDKTN) and began working on what would be called the Living with Dementia-Resources for Living Well project. In the fall of 2010, additional funding was received from CIHR to continue our work.
Through our 17-person project team of persons with dementia, family members, health care professionals and educators we have developed the Living with Dementia: Resources for Living Well web-based tool.
It is our hope that this tool will enable those newly diagnosed with dementia and their families to have the necessary information to live well with an illness causing dementia and help them prepare for the road ahead. It is also our hope too that the resources provided will enable professionals working in dementia care to better support the families with whom they work.