Canadians call in with their dementia stories
In May when we opened our phones to hear from Canadians as part of our special series,"Diagnosis Dementia", the response was enormous and often very moving, so this week we've aired the series again.
We spoke with people who have received the diagnosis; we visited a long term care facility that's on the cutting edge of care; we heard the latest science behind the disease; and we've heard from families consumed with caring for a loved one. It all culminated with a phone -in, when we heard from people across the country.
Anna Maria Tremonti was joined by Mary Schulz, the Director of Information, Support and Education at the Alzheimer Society of Canada and Dr. Carmela Tartaglia, a cognitive neurologist at Toronto Western Hospital.
Today's segment aired a few of the compelling phone calls from Canadians across the country. But you can listen to full segments from your time zone or any other time zone below. (Note: the players do not play for mobile users. Sorry)
First, we heard from the east coast:
How do I as a partner, or a spouse, someone who cares deeply for my husband.... How do I care for my him while I maintain some form of life for myself? It's a very intricate dance, it's a very painful dance.Pat from St. John, New Brunswick
Next up, we moved to Eastern Standard Time:
The clearer you are about your wishes...the more likely that is to happen. And actually it makes it easier for your caregivers because they know what you want. And therefore can act for you.Peter from Ottawa, Ontario
And then, Central Time:
I've heard the word 'resilience' used and it's an extraordinarily important word, but resourcefulness is also as important...if not more so. Getting all the information that you need.Janet from Winnipeg, Manitoba
Moving west, we answered calls from the Mountain Time zone:
You have to accept the fact that they have the disease. Do not deny it. Tell your friends. Tell your family. Make your support group aware that there is a problem, because they will notice it anyway...One of the difficulties is, that as your loved one gets dementia, that a lot of your friends forget who you are.Allen from Calgary, Alberta
And finally, our call-in ended on the west coast:
It's a lonely life. I find it very lonely because [my husband] had his 90th birthday and we had celebrations...he didn't remember a thing. He enjoys the day, but he doesn't remember anything.Fran from Duncan, B.C.
We also invited the Minister of Health, Rona Ambrose, to join us for an interview. She was unavailable, but her office sent a statement:
"Our Government recognizes the very real impact that Alzheimer's and other forms of dementia have on Canadian families. We are focusing our efforts on national dementia research and prevention plan which is key to improving standards of care and reducing the burden on families. The provinces and territories are doing great work in their jurisdiction to compliment this national research. Our Government is taking important action to support Canadians living with this disease, including investing over $860 million in neuroscience research since 2006. These investments support the development of effective strategies for the prevention, early diagnosis and treatment of Alzheimer's. Economic Action Plan 2014 is also delivering a further $15 million a year to expand patient oriented research and create the Canadian Consortium on Neuro-degeneration in Aging to tackle the growing onset of dementia and related illnesses. Earlier this month, Prime Minister Stephen Harper, was in Montreal where he joined the Chagnon Family and Brain Canada to announce additional funding for innovative research that will help prevent the onslaught of Alzheimer disease on the Canadian population. Canada is a world leader in the area of dementia research. This fall, as a follow-up to the G8 Dementia Summit, Canada and France will be co-hosting a global legacy event. The Canada-France event will explore how to increase international partnerships between industry and academia as Partnerships are critical to success. With all of these initiatives, Canada is joining forces with its G-8 counterparts to support additional research working on finding a cure for dementia by 2025. We applaud the work and efforts of groups like the Alzheimer's Society of Canada. I recently consulted with the provinces and territories informally on the creation of a national dementia strategy. However, at this time there is no consensus to move forward. Several provinces are proceeding with their own provincial dementia plans and the federal government will proceed with our national dementia research and prevention plan. We will continue to cooperate and collaborate with the provinces and territories in every aspect possible."Minister of Health, Rona Ambrose
Do you have your own story to share?
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This segment was produced by The Current's Elizabeth Hoath.