On Thursday, April 27th, 2017, Ontario Finance Minister, Charles Sousa, introduced the 2017 Ontario Budget, A Stronger, Healthier Ontario, which included $100 million over three years for the implementation of an Ontario dementia strategy. This is in addition to the $20 million investment for improving respite care for unpaid care partners that was announced earlier in the week.
This is a major win for the over 220,000 Ontarians and their families who have been impacted by dementia!
The Alzheimer Society of Ontario commends Premier Wynne, Minister Sousa and Minister Hoskins for making dementia a priority in Ontario and investing to enhance care and support for people living with dementia and those who care for them.
The Alzheimer Society strongly believes that a fully-funded and comprehensive strategy is the best solution to ensuring that Ontarians with dementia have the resources they need to live well in their homes and in their communities for as long as possible, and to ensure that their care partners and families are wholly supported.
Thank you to all of our dedicated supporters and allies without whom yesterday’s announcement for a fully-funded provincial dementia strategy may not have been realized.
Stay tuned for more, great dementia strategy news and updates!
Read the Alzheimer Society of Ontario’s press release to respond to the 2017 Budget announcement.
With over 200,000 people in Ontario living with dementia today, we need an Ontario dementia strategy to make sure that our communities receive the support they need. The Alzheimer Society of Ontario has led the movement to have a fully-funded dementia strategy included in the Ontario government’s 2017 budget, and we are now awaiting the upcoming announcement of the budget.
In support of our initiative, CarePartners has generously donated not only financially, but their time as well, to help build awareness and promote the importance of an Ontario Dementia Strategy. With their exceptional support, we have been able to increase awareness amongst policy makers and influencers and the need for a strategy to be included in this year’s budget.
The partnership between CarePartners and the Alzheimer Society of Ontario began with the shared value of great care for people living with dementia. CarePartners explains,
“CarePartners is committed to providing quality care for patients with a dementia diagnosis living in the community and to providing support for their families. Our partnership with the ASO (Alzheimer Society of Ontario) provides our health professionals with education and access to resources; both of these contribute greatly to ensuring that the care our staff provides is always skilled, compassionate and built on proven best practices.”
-Brittany Robins, CarePartners
To have an Ontario Dementia Strategy will be integral to help support partnerships like this, which help to make sure that people with dementia receive the best care possible.
Thanks to supporters like CarePartners, we have been able to raise awareness about the need for a dementia strategy to many members of parliament, but we need to make sure that a fully-funded strategy is incorporated in the government’s budget. Be sure to write to your MPP today and tell them that we need a fully-funded dementia strategy!
For more information about CarePartners and the services they offer, visit their website at www.carepartners.ca
The Alzheimer’s Association International Conference (AAIC) 2016 was a huge success with over 5,000 attendees representing more than 70 countries! A forum to discuss the latest in dementia related research, the annual (and largest worldwide) conference dedicated to Alzheimer’s disease and other dementia’s took place in our very own, Toronto, Ontario from July 22nd to 28th, 2016.
The Alzheimer Society of Ontario, with our partners at the Ontario Brain Institute, hosted a tour of the Canadian pavilion during AAIC 2016. The tour was an opportunity for us to showcase Canadian and, particularly, Ontario research and to build momentum for the Ontario Dementia Strategy with key decision makers and political influencers in attendance, such as Dipika Damerla, the minister responsible for Seniors Affairs, as well as representatives from the Ontario Ministry of Health and Long-Term Care. With the presence of Senator Art Eggleton, Deputy Chair of the Senate Committee of Social Affairs, Science and Technology, the tour also served to increase awareness for the need for a National Dementia Strategy. The Ontario Dementia Strategy will serve to help communities across Ontario affected by dementia, and the presence of so many influencers is a great benefit to raising awareness for this important initiative.
Overall, both the conference and the Canadian pavilion tour had a great turnout and were very well received by all attendees. It was wonderful to see so many interested in learning more about the issue of dementia and some of the substantial work and progress in the field being made right here in Ontario and across Canada. This is a big stride towards greater knowledge, understanding, and initiatives in support of people living with, and affected by, dementia. We are so proud of the Canadian and Ontario research presence at this conference, as well as the strong public interest in dementia.
We encourage you to continue the conversation about dementia and advocate for a Dementia Strategy to help support your fellow Ontarians living with and affected by Alzheimer’s disease and other dementias. You can become a Champion for Dementia by contacting me at email@example.com.
Want to learn more about the Ontario Dementia Strategy? Check out our website here.
We have all had a bad day at work. Work-load, timelines, and frustration have driven us “crazy” and/or “mad”. Sometimes these frustrations or situations lead us to become “agitated” or “aggressive”.
Sometimes the mere act of running into someone can be defined as “crazy”: “It’s crazy running into you here!”
But sometimes (more often than not) these words and others are used to describe behaviours associated with dementia. Stigmatizing language and negative communication tends to be used in response to behaviours associated with dementia, which increases focus on the illness while reducing the person with dementia to a series of labels and symptoms.
On Tuesday July 26th, Alzheimer Society of Ontario partnered with brainXchange to host a think tank to discuss the use of stigmatizing language to describe behaviours associated with dementia and start the conversation about how we can better communicate using non-stigmatizing language. This was an excellent opportunity to bring together researchers, clinicians, and persons from the community to consider this very important issue. Many who joined the discussion were in Toronto that week attending the 2016 Alzheimer’s Association International Conference, including Dr. Dallas Seitz (Providence Care), Judith Wahl (Executive director of ACE) and David Kent (ORAC Board Member), amongst others.
Bringing together 20 people with a shared interest in this topic was all it took to get some excellent and constructive conversation started.
The think tank involved three parts:
- Facilitated discussion and creation of case scenarios to consider the current and future state of this issue.
- The creation of guiding principles and features for non-stigmatizing and patient-centered terminology.
- A brainstorm of next steps and how we can work together to respond to this issue going forward.
All in all, the think tank was a great success because it represents one of many steps we can take towards changing the current state of communication and dementia. At the Alzheimer Society of Ontario, we want to continue the course of change and will be organizing more opportunities to discuss and consider this important topic in dementia going forward.
Visit us at www.alzheimerontario.ca to learn more about Alzheimer’s disease and dementia.
In February 2016, the Standing Senate Committee on Social Affairs, Science and Technology started investigating the issue of dementia in Canada , with the aim of producing a final report by November 30, 2016. They’ve met with myriad witnesses representing many aspects of the complex network of health agencies, experts and researchers who can lend insights into the state of dementia. Executive directors, doctors, and other professionals helped to guide and inform the course of the study as Witnesses. But on May 18, 2016, the Committee heard testimonies that may be the most valuable yet.
A shift in the study of dementia in Canada
Members of the Ontario Dementia Advisory Group (ODAG)—each one of them living with a dementia diagnosis—stood as Witnesses. For the first time since the study began, the Senate Committee heard from people who are living—and living well—with the disease.
People like Phyllis Fehr, Bill Heibein, Bea Kraayenhof and Mary Beth Wighton are learning to navigate life with a diagnosis with few resources at their disposal.
“We go through these things almost every day. We get frustrated when dementia strategies are started and we’re not even asked to contribute. We should be front and centre at the table doing it with you. That’s what we feel is best.”
– Bea Kraayenhof, Board Member, Ontario Dementia Advisory Group (ODAG)
The impact of an early diagnosis
The most important contribution that ODAG members offer to this conversation is their ability to break through the stigma of dementia. The significance of ODAG’s presence at the Senate is huge: their passionate advocacy, strong community spirit, and lived understanding of the impacts of the disease set a new precedent.
“My story is like most other people living with dementia. It is our desire to live life fully and utilize our remaining skills that help us remain strong. We reject the notion of going home to die. The time between diagnosis and end-stage dementia can be many years. In the meantime, we have the ability to live life well.”
-Mary Beth Wighton, Board Member, Ontario Dementia Advisory Group (ODAG)
Earlier diagnoses and the availability of ways to slow disease progression challenge many of the established stereotypes of a dementia diagnosis. Meanwhile, the systems in place—from medical to social services to public support—are geared toward those at the late stages of the disease’s progression.
While ODAG members Phyllis, Bill, Bea and Mary Beth come from different parts of Ontario, have unique personal histories, and even different diagnoses, they have one thing in common: They each received a diagnosis in the early stages of the disease. An early diagnosis is still one of the best ways to mitigate the impact of the disease.
“We are a group that were checked early, and that’s the key. That’s where you’re going to find change will happen. The earlier we can catch the disease process and put them on meds, even though the meds aren’t a cure, it slows the progress down. That then allots us time to prepare so that we can stay in our homes and do things for ourselves longer than having to go into care homes.”
– Phyllis Fehr, Board Member, Ontario Dementia Advisory Group (ODAG)
What we learn by listening to those living with a diagnosis
Each ODAG member also spoke to elements that the health-care system is currently missing.
For Phyllis, education for practitioners that will empower them to deliver a diagnosis is critical. Mary Beth spoke of dementia care in Canada as a series of health-related silos that lack the ability to provide social support to better manage the total havoc that a diagnosis can wreak in one’s life. Bea spoke about the importance of meaningful occupation for people living with a diagnosis, while Bill—now a full-time farmer—showcases the fact that one can continue to contribute in meaningful ways even with a diagnosis.
“I’d like to say that one of the things I think we can really do is … be seen and heard in public. When I was first diagnosed, the first thing [I wanted to do] was just withdraw and hide. The more we can be seen, the more people who have just been diagnosed and start to pay attention to what’s happening, hopefully they’re going to get the self-confidence back to be able to go out and participate.”
– Bill Heibein, Board Member, Ontario Dementia Advisory Group (ODAG)
The Chair of the Committee, Senator Kelvin Kenneth Ogilvie, adjourned this remarkable meeting with powerful words that reveal the deep impact of this meeting, saying, “The thing that has struck me … is that because we have examined so many aspects, perhaps from a clinical point of view with experts and so on up to this point [….] We have an enormous amount of background information to which you have added the complete experience. You bring it all together — the context, the application and the things that are missing.
“We have heard you loud and clear today. […] I can’t say enough as to how you have clarified it for us. Your examples have illustrated many of the facets that are critical.”
In February 2016, the Canadian Senate asked that the Standing Senate Committee on Social Affairs, Science and Technology study the issue of dementia in our society and to provide a final report in January 2017. On May 18, Mary Beth Wighton and the other members of the Ontario Dementia Advisory Group (ODAG) presented to the committee.
View the presentation on SenVu or read her remarks:
Thank you for inviting us to appear before you this afternoon. It’s an honour to represent the 747,000 Canadians living with dementia. It is important that people with dementia are able to participate as equals in all dialogue about us. According to the UN Convention on the Rights of Persons with Disabilities (CRPD) this is our human right.
The Ontario Dementia Advisory Group (ODAG) is a group of people with dementia living in Ontario. We are involved in policy-making strategies, research projects and education initiatives at the local, provincial and national level. We have close ties to Dementia Alliance International, the international self-advocacy group of people with dementia.
We are here today as a united voice of four people. When one falters, the others will step in. This is what makes us strong.
We are parents, grand-parents, spouses, and friends. We have all had long and successful careers. When we were diagnosed with dementia, these experiences did not disappear; they are and will always be a part of us. We rely on these roles and experiences to help us with our advocacy work.
We all have many important issues to bring to this committee, but three topics of significant importance to people with dementia are:
- The human right to a more ethical pathway of care
- The right to be treated with the same human rights as everyone else, under the UN Convention on the Rights of Persons with Disabilities
- The need for more research emphasis on a social rather than a medical model. Research does not only focus on a cure. It is important to take a more holistic approach to well-being.
Lack of involvement of people with lived experience, stigma and insufficient education regarding dementia is deep rooted in Canadian society. This impacts us greatly.
When I was diagnosed with probable frontotemporal dementia at the age of 45, I was told to get my affairs in order, that I had about 5 to 8 years to live and would eventually live in long-term care. My partner was told she would be responsible for my welfare and that it would eventually become totally time-consuming. The doctor then revoked my license on the spot. She told me I did not have the capacity to drive any longer. Interesting, as I drove to the hospital without any issues. My loss of license was done without any kind of due process.
My story is like most other people living with dementia. It is our desire to live life fully and utilize our remaining skills that help us remain strong. We reject the notion of going home to die. The time between diagnosis and end-stage dementia can be many years. In the meantime, we have the ability to live life well.
If I had been diagnosed with a different illness, like a stroke, I would have received an interprofessional team approach to my care. However, dementia is different. There is not a single government body dedicated to dementia. The current health-related silos don’t work well either. This results in difficulties in achieving our optimal physical, cognitive, emotional, communicative, and social well-being.
If I had been diagnosed with a different illness, like cancer, the oncologist would spend time with me, educating me about this disease and options I have available. However, dementia is different. I received a pamphlet from the doctor; she said she would notify my local Alzheimer Society as they are the experts in dementia. Beyond that, she did not offer any hope, services or suggestions to live life well with dementia, or to fully participate in society.
Finding a cure for dementia is extremely important, but our lived experience is as important as finding a cure. We hope there is a more balanced focus in research – not only about a cure but better services, treatment and care.
In August 2016, Canada will be the first country to report on its progress in supporting people with disabilities to the CRPD. It has agreed to be a pilot for others to learn from. We believe this can be used to advocate for improvements in dementia care and services.
The CRPD is important as it helps to identify practical steps to ensure people with dementia have the same human rights as anyone else. In particular, we recommend Canada takes action on:
- Equality and non-discrimination, including the provision of ‘Reasonable accommodation” and accessibility: This may include unlawful discrimination by health care, driving license authorities, insurance companies and employers. In a nut-shell, this means to make changes so we can continue to participate and have access to anything and anywhere – the same as anyone else.
- Introduction of the Dementia Friendly Communities (DFC) model. It has goals of reducing stigma; ensuring an early diagnosis; having consistent and reliable travel options; practical support; community based solutions, including helping us to live independently and safely in our own homes. There are many benefits of this model, including empowerment for people with dementia and the financial benefit to less time needed in costly residential or hospital care.
- Reduction of the disproportionate use of antipsychotic drugs, physical restraints and being detained in psychiatric institutions.
The time is now to make lasting changes affecting people living with dementia and their carepartners. This must be done with us and not for us.
Mary Beth is a retired vice-president and owner of a recruiting firm. She spent 10 years in dot com as a senior business analyst. Mary Beth was diagnosed with probable frontotemporal dementia in 2012 at age 45. She, along with her partner Dawn and daughter Brianna, work to challenge the stigma of dementia. She is an advocate locally, provincially, and internationally, and was named a Champion for Dementia by the Waterloo-Wellington Alzheimer Society. She has had her writings about living with dementia internationally distributed through blogs and websites. She was a keynote speaker at the 2014 A Changing Melody forum, MAREP’s 2013 Alzheimer Awareness event, and was a key figure in MAREP’s 2014 video series “A New Voice: Living Well with Dementia”. She has been a panel member at various events.
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.
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
When 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.
On 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
Premiers from across the country will be meeting in Charlottetown August 26th to 30th for their annual summer meeting. This group, known as the Council of the Federation, meet regularly to discuss pressing issues that are important to all Canadians. At the 2013 summer meeting, the premiers directed the Health Care Innovation Working Group (HCIWG) to examine issues related to dementia, including a commitment to look at best practices related to raising awareness of dementia’s early warning signs, identifying best practices for early diagnosis, and identifying methods of intervention.
Earlier this winter, the G8 Dementia Summit shone an international spotlight on the impact that the dementia crisis will have on society. All participating countries declared that they were committed identifying a cure or disease-modifying therapy by 2025 and agreed that it is imperative for each country to develop and implement a national dementia plan.
While both the Council of the Federation and the federal government have spoken about the importance of dementia, Canada still does not have a unified national dementia plan.
As Alzheimer Society of Canada CEO, Mimi Lowi-Young puts it, “It comes down to a question of economics. We have excellent resources provincially. We need to bring these together into one comprehensive, coordinated national dementia plan so Canadians wherever they live receive standardized care that is affordable and cost-effective.”
A national dementia plan will:
- Ensure a coordinated approach to awareness, diagnosis and treatment of dementia by governments
- Build comprehensive supports across the country
- Accelerate investment in research
It’s not too late though to make your voice heard and show your support for a plan. You can still use our online letter-writing tool to personalize your letter and let your premier that action is needed now to create a national dementia plan that will address the needs of the millions of Canadians who have a friend or family member with this disease.
Visit www.alzheimer.ca/tellyourpremier2014 to send your letter.