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This election, support a National Dementia Strategy

This election, support a National Dementia Strategy

On October 19, 2015 the Canadian federal election will be held. And we want to reaffirm that every vote matters.
On May 6 of this year, our chance for a national dementia strategy becoming enshrined into Canadian law through MP Claude Gravelle’s private member’s bill C-356 was sadly defeated 140-139. Yes, by one vote.

When we hear about people who think votes don’t matter it’s disheartening, because regardless of context, every vote matters. Right now, each one of us gets to choose who we want to lead our country at a time when dementia is prevalent everywhere and answers are nowhere.

The Ontario Dementia Advisory Group (ODAG) is a group of people living with dementia who formed in Fall 2014 with the purpose of influencing policies, practices, and people to ensure that we, people living with dementia, are included in every decision that affects our lives.

When you have dementia, you worry about the time. How much time do you have before you: get worse; are moved into a long-term care facility; are unable to participate in committees; you die.

Yes, research is important. But so is our current living ability. We need an integrated national dementia strategy which will help support the provincial strategy here in Ontario and in the other provinces that have recognized dementia as a priority. Canadians had that within our reach. One vote stopped it.

ODAG worked very hard pushing for support of bill 356. Our effort included sending 80 individual emails to Ontario Conservative MP’s and helping the North West Dementia Working Group also send out 80 individual emails. The response was one aggressive email from a Conservative MP. This is beyond unprofessional and unacceptable. We are angered to hear that Liberal MP Yvonne Jones forgot to vote. Her vote would have passed the bill. And where were the NDP MP’s who decided not to go to work that day? Again, we needed just one vote.

This was not a straight split among parties. Nine Conservative MP’s did their homework and supported C-356. The Conservative government claimed the bill encroached on provincial health-care jurisdiction and instead put forth a motion that states dementia as a priority with no requirement for action from government.

MP votes matter. Citizen votes matter. It is paramount that people understand the importance of each vote and listen to what people who have firsthand experience of dementia want. People with dementia across Canada need the next federal government to take dementia seriously. The provinces are moving ahead on the development of local dementia strategies with a glaring absence of national leadership on the most pressing health and social challenge of our time. So we ask your candidates what they will do to support the people with dementia in your community and what their party will do for those affected across Canada.

Come October 19th, YOUR vote can send the message that as a Canadian citizen you demand a national dementia strategy. We need action and it’s in your hands.

Learn more about what you can do.

Sincerely,

From left to right, three members of the Dementia Advisory Group. Bea Kraayenhof, Bill Heibein and Maisie Jackson alongside MPP Indira Naidoo-Harris. The other two members are Mary Beth Wighton and Phyllis Fehr

Ontario Dementia Advisory Group (ODAG)

From left to right, three members of the Dementia Advisory Group. Bea Kraayenhof, Bill Heibein and Maisie Jackson alongside MPP Indira Naidoo-Harris. The other two members (not pictured) are Mary Beth Wighton and Phyllis Fehr

Al Burridge was a true Dementia Champion

Al Burridge was a true Dementia Champion

Al-burridge-2When the Alzheimer Society of Ontario began the Champions for Dementia initiative in 2010, we were seeking to engage people with lived experience of dementia in advocacy activities with their Members of Provincial Parliament (MPP) and the Ontario government.

I remember receiving notice from the Alzheimer Society of Oxford that they had identified a perfect candidate to be their Dementia Champion – Al Burridge.

From day one, Al was a model Dementia Champion. Soon after joining, Ontario had an election. While Al was volunteering at a local fundraising and awareness event known as Coffee Break®, staff member Beth Haas remembers he had a natural ability to identify electoral candidates and talk to them about dementia. “The weather was good that day so Al and I set-up outside for a few hours during Coffee Break. Al not only recognized the candidates, even the lesser-known ones, but nabbed them to tell them about dementia and how the Alzheimer Society is advocating for improved care. He was charming, well-spoken and literate; no one could dismiss him or sidle off! ” remembers Beth.

Locally, Al was involved as a spokesperson. He met with his MPP several times, was guest speaker at the Alzheimer Society of Oxford Golf tournament, and was MC at the intergenerational Choir performance. He also spoke with media, including Heart FM, Rogers TV, and local newspapers.  Whatever the task, Al assumed his role with great gravity and earnestness. He always reviewed what the present focus was, ensuring he understood the message so he could convey that to his listeners. He was 100% convincing because he truly believed the message.

He recognized that to effect change he needed to be heard at both the provincial and national level. He worked with our National office to develop an ethical framework for engaging people with dementia in Alzheimer Society work, and he had recently expressed interest in joining an advocacy group led by people living with dementia called the Ontario Dementia Advisory Group. This group is focused on the development of an Ontario Dementia Strategy and actively advocates for the engagement of people with dementia in public policy decision-making that will affect their lives.

al-burridgeOn April 10th of this year, Al and staff member Robyn Fox met with their MPP to personally invite him to the Alzheimer Society Queen’s Park Day. The week after he was scheduled to meet with the Ontario Dementia Advisory group for the first time, but I received a call from his wife Maureen (Mo) advising that Al would be having surgery and wouldn’t be able to participate as anticipated but that he would like to be kept informed of the work underway. On April 27th Al went in for surgery, and sadly he did not recover. He passed away on May 14th.

Al was an impressive and active advocate for people with dementia for many years. He gave of his time so liberally and always gave thanks to his wife Mo, without whom he could not have organized himself as effectively.

Beth says it best – “Al was rarely without a smile or an anecdote. He was hospitable and reflected frequently on life’s little quirks finding all around him something of interest and curiosity.”

He was a wonderful example of someone living well with dementia.

Thank you Al. We miss you already.

Delia Sinclair Frigault – Public Policy and Stakeholder Relations Coordinator
Alzheimer Society of Ontario

Shelley Green – Executive Director
Robyn Fox – Volunteer Companion Coordinator
Beth Haas – Behavioural Support Worker
Alzheimer Society of Oxford

Susan Parish: Champion for Dementia

Susan Parish: Champion for Dementia

As a graduate from nursing at Western, Susan understood the devastating impact of dementia.  Prior to retirement, she worked for ten years in a long-term care home in Lindsay, where many residents had Alzheimer’s disease.

It was after retirement that Susan noticed unsettling cognitive changes. During the summer and fall of 2009, Susan began to feel very nervous when driving. Her husband Brian also noticed subtle changes in spelling, numeracy, comprehension, memory and coordination.  After a prompt referral to a Gerontologist in Peterborough and a specialist at Toronto Western, she was definitively diagnosed at age 60 with Post Cortical Atrophy (PCA), an atypical variant of Alzheimer’s.

The next year was dark for Susan, Brian and their family. But one day, she had a change of heart. Perhaps because of the “nursing” in her blood, she knew that wallowing in self-pity would change nothing. To help herself, she decided to reach out and help others.  As a first step, she invited a journalist friend in Lindsay to help her “out” herself to the community. The article also focused on the importance of early diagnosis and how denying it only perpetuates stigma.

With the encouragement from the local Alzheimer Society, she became a ‘Champion of Change’ for the Kawartha Lakes area, advocating on behalf of people with Alzheimer’s at the local, provincial and federal level.  On a visit to her local MPP with local Alzheimer Society staff, she posed questions about funding for research, capacity of long-term care and the need for better home care that were met with  sincere interest and concern.  She has communicated with politicians at all levels about these issues and also the importance of a National Dementia Strategy.  She believes these concerns must be on the political agenda.

Susan has continued as a prominent spokesperson for those with the disease. In 2012, she presented the keynote speech at the annual Alzheimer Society General Meeting in Peterborough. Last January, she was interviewed by CTV health reporter Avis Favaro.  Her performance on The National was also inspiring.  In that interview Susan said, “we choose to live with Alzheimer’s.” And she has lived by those words.  Since her diagnosis, she and Brian have travelled to Peru, Kenya, Western Canada, Turkey, Eastern Canada, Arizona and will be visiting Patagonia this February.

Susan is also now involved with the development of a “Dementia Friendly Downtown” program, where local shop keepers are encouraged to address the needs of customers with dementia. Susan and her local Alzheimer staff partner recently presented their ideas to the Bobcaygeon Chamber of Commerce members.  They were receptive.  After an initial trial in Bobcaygeon and some “tweaking,” she hopes to present the idea to the Chamber of Commerce in the much larger town of Lindsay, with the hope of full implementation.

With her experience in long-term care as a nurse, Susan knows that those with dementia require special accommodations.  Currently in Canada, these special accommodations are rare.  Susan would like to see that change. She is particularly interested in the promotion of specialized small group, residential homes similar to some that are functioning well in Great Britain, Europe and the United States.

Susan became a Dementia Champion because it allowed her the opportunity to do something that could help others. “I knew I had to do something. I couldn’t just sit here doing nothing.” Susan heartily recommends anyone interested in advocating for dementia to get involved as a “Champion for Dementia.”

Visit our website for how to become a Champion for Dementia.

susan-parishSusan Parish

Champion for Dementia

Congratulations to Jim Mann, recipient of the 2013 NHCC Changemaker Award!

Congratulations to Jim Mann, recipient of the 2013 NHCC Changemaker Award!

We’re so pleased to congratulate Jim Mann of British Columbia on being honoured with the prestigious Neurological Health Charities of Canada 2013 Change-Maker Award!

Jim is a passionate advocate for people living with dementia and this award recognizes his work as an advocate and spokesperson both locally and nationally, as well as his service as a board member for the Alzheimer Society of B.C. (ASBC), the Alzheimer Society of Canada and on the Canadian Dementia Knowledge Translation Network Advisory Board.

In 2007, Jim was diagnosed with early onset Alzheimer’s disease but that never stopped this former government relations consultant from living life to the fullest.

We sat down with Jim to discuss his work as a change-maker and to talk about what others can do to be change-makers in their community!