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Hello brainXchange members,
We are excited to share with you some updates and knowledge exchange opportunities:

Ontario Dementia Strategy

Over the past few months, the Ministry of Health and Long-Term Care wrapped up their preliminary public consultations with community members, including people living with dementia and family caregivers, service and health care providers. From these consultations, the ministry has been working diligently to compile what was heard into a draft discussion paper, which is anticipated to be released late this spring for public review. The discussion paper will highlight key challenges as well as potential approaches to better address the needs of Ontarians living with Alzheimer’s disease or related dementias and their caregivers.

Almost everyone will be touched by dementia in their lifetime. It seems that every day, topics relating to dementia are featured in the news. As such, feedback from as many community members and groups as possible is vital to the development of a strong Dementia Strategy for Ontario. The Ministry will be collecting feedback throughout the summer months and early into the fall of 2016. We would like to encourage as many people as are willing to give input during this process. For further information and updates on the Dementia Strategy work, including when and how to contribute, you can visit the Alzheimer Society of Ontario Dementia Strategy page

Symposium on Research Involving Persons with Dementia

brainXchange is pleased to be participating in the July 22nd symposium on Research Involving Persons with Dementia, hosted by the Alzheimer Society of Canada.

This symposium is being offered in recognition of the need to engage persons with dementia and their care partners in research; it will bring together individuals with expertise and lived experience for the purpose of:
  • Exploring ways to engage people diagnosed with dementia and care partners in dementia research
  • Networking with Researchers, Practitioners, Policy-Makers and people with Lived Experience
  • Discussions and exchange of ideas on how people with Lived Experience can be more central to decision-making about research that is important to them.


Ontario Best Practice Exchange Collaboratives

Launched at the Ontario Best Practice Catalyst Event on September 25, 2015, the goal of the following collaboratives is to develop person-centered best practices for supporting both older adults living with dementia, mental health, substance use and/or neurological conditions and their families and care partners. To achieve this objective, we need to understand and hear the experiences of those on the front line, community care partners, clinicians, researchers, administrators, policy-makers and people who are living with or caring for people with these conditions – those with lived experience.

We invite you to join us to share your experiences and ideas for how the best practices that are being developed can best support your needs or needs of the person you are caring for by becoming part of one or more of the collaboratives listed below. 

Collaboratives currently underway / just started: Collaboratives that will be underway shortly: Please contact Jillian McConnell if you are interested or have further questions.

Survey on Needs of People with Young Onset Dementia

The Alzheimer Society is asking for your help in order to identify existing and new resources that are needed to provide information and support at the time of young onset diagnosis and throughout the course of the disease. (An individual with young onset dementia is someone who has received a diagnosis of Alzheimer’s disease or other dementia before the age of 65 years).They are asking for advice and feedback from three different groups: those with lived experience of young onset dementia, their caregivers and health care professionals. 

Pain Matters Guide

Pain is the body’s warning sign that something is wrong. Many chronic illnesses and painful conditions cause pain—such as diabetes, arthritis and toothaches. But because people living with dementia struggle to express pain in typical ways, they often have untreated pain. This is especially an issue for people in the later stages of dementia who may struggle to communicate. 

A new guide called Pain Matters is now available to help family members, friends and caregivers of people with dementia recognize the relationship between responsive behaviour and pain. Behaviour has meaning and it may be an expression of pain. The guide was created in partnership with the brainXchange and Alzheimer Society of Ontario. Learn more

Upcoming Events

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*In the news section is brought to you in partnership with the Murray Alzheimer Research and Education Program