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The Lived Experience Cafe chat

March 2017

Provincial News - How the Lived Experience Began and Where We are Today?

Over the course of 2010, somewhere between a peaceful, month-long visit in August and early November, my mom completely unravelled.

An undiagnosed delirium and vascular dementia coupled with some significant life changes like the sale of her house, the loss of her family doctor and moving several hours away to live with us left mom completely confused, frightened and in crisis. The next few months included trips to the emergency department, a failed attempt at living in a local retirement home and several months of her being restrained in hospital. Finally, with the help of a geriatric psychiatrist and team members from Providence Care, Mom‟s delirium was addressed, medications refined and we began to see parts our “real” mom come back to life. She entered a local Long Term Care home where she resides to this day.

At the time, I could not believe how hard it was to navigate the system. I was also taken aback at how far and how quickly a person can fall between the cracks when they can‟t find the right care. I started writing and speaking about our experiences. Shortly thereafter, I was introduced to Dr. Ken LeClair and began taking part in advisory discussions with both Providence Care Seniors Mental Health and Behavioural Support Services. In September 2013, I was selected by these organizations to work in partnership with the Alzheimer Societies of South Eastern Ontario to develop and coordinate a network of older adults and family/care partners. The network initiated meaningful “lived experience” advisory conversations by means of in-person and teleconference meetings. In March 2014, with the assistance of Dr. Dallas Seitz and Kathy Baker, The Lived Experience Café was launched on www.dementiacrossroads.ca providing opportunities for online chat conversations and discussion forums.

Our network began to grow outside of the South East and in April 2016, I was hired to work one day per week to coordinate the Provincial BSO Lived Experience Network Advisory. This included hosting bi-monthly live chats and bi-monthly video/teleconference advisory conversations.

It still amazes me how this initiative has grown and continues to grow. This past year, we‟ve been able to advise the Ontario Best Practice Exchange Collaboratives, provide recommendations for BSO projects, and have been consulted on other provincial projects such as: Health Quality Ontario‟s Quality Standards for Behavioural Symptoms of Dementia, the Canadian Dementia Setting Questionnaire (Alzheimer Society of Canada) and the Ontario Dementia Strategy (Ministry of Health and Long- Term Care).Future projects are just as exciting as we act upon recommendations from our BSO Provincial Lived Experience Advisory which include making recommendations for the use of personhood tools, improving navigation and enhancing care partner training opportunities across the province. I’m very pleased to share that my role has recently been expanded to two days a week and includes a position title change to that of BSO Lived Experience Facilitator.

If you would like to join this network (either as a person with lived experience or health care professional) visit the Ontario page on www.dementiacrossroads.ca. For more information, you can also email me at sosvald@alzking.com or reach me by phone me at 613-475-9943.

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