There are many ways to get involved and show your support of Alzheimer’s disease and dementia this month. One small act can make a remarkable difference to the men and women who are impacted by dementia.
Top 5 ways you can make a difference this month:
Learn more about Alzheimer’s disease. Understanding Alzheimer’s disease and dementia is the best way to help those that are impacted. Do you know the risks, prevention, and how to best support those with the disease?
Spread the word. Talk to family and friends about dementia and build awareness in your community. You can also get involved in our advocacy efforts by becoming a Champion for Dementia. By becoming a Champion, you can help to bring positive change to the lives of Ontarians who have been impacted by dementia.
Host or Attend a Coffee Break. Coffee Break® is our major nationwide annual fundraiser where friends, co-workers and customers gather in communities across Canada to raise funds for their local Alzheimer Society. Host your own event or visit a Coffee Break near you to make a donation in exchange for a cup of coffee.
Make a donation. Your donation will support vital programs that men and women with dementia depend on.
Leave a gift in your will. Consider making a lasting impact through our Legacy Giving program. A bequest is one of the easiest ways to make a legacy gift. Your current income won’t be affected, and you can receive significant tax benefits. Take the first step, request our free estate planner and guide today.
Canada to become 30th country with national dementia strategy
“For the more than half a million Canadians living with dementia and their families, this is an important milestone,” says Pauline Tardif, CEO of the Alzheimer Society of Canada. “A national strategy enables a coordinated approach to tackling dementia in Canada that will impact the lives of those affected in tangible ways.”
Bill C-233’s co-sponsors, the Honourable Rob Nicholson, MP Niagara Falls, and Rob Oliphant, MP Don Valley West, are to be commended for their leadership and support, as is the Standing Senate Committee on Social Affairs, Science, and Technology. They have been dedicated champions of the Bill on behalf of Canadians living with dementia, their families, and caregivers.
The Alzheimer Society has long called for a national dementia strategy to enhance research efforts and ensure access to quality care and support so that Canadians with dementia can have the best quality of life. Now that Canada has committed to such a strategy, work begins on implementation.
The Society and its federation partners look forward to continuing to work collaboratively with government, stakeholders and, above all, people living with dementia, to create and implement Canada’s first national dementia strategy.
« Pour les plus de cinq cent mille Canadiens atteints de la maladie d’Alzheimer ou d’une maladie apparentée et leurs familles, il s’agit là d’un jalon important, a déclaré Pauline Tardif, chef de la direction de la Société Alzheimer du Canada. Une stratégie nationale nous permet d’avoir une approche coordonnée pour aborder les maladies cognitives au Canada, ce qui aura des impacts concrets sur la vie des personnes touchées. »
Il convient de féliciter les co-parrains du Projet de loi C-233, l’honorable Rob Nicholson, député de Niagara Falls, et Rob Oliphant, député de Don Valley West, pour leur leadership et leur soutien, tout comme les membres du Comité sénatorial permanent des affaires sociales, des sciences et de la technologie. Ils ont été des champions dévoués au projet de loi au nom des Canadiens touchés par la maladie, des familles et des aidants.
La Société Alzheimer réclame depuis longtemps une stratégie nationale sur les maladies cognitives afin de renforcer les efforts de recherche et assurer l’accès à des aides et des soins de qualité pour que les Canadiens touchés par la maladie puissent jouir d’une qualité de vie optimale. Maintenant que le Canada s’est engagé dans la voie d’une telle stratégie, le travail commence pour la mettre en place.
La Société et les partenaires de la Fédération se réjouissent à l’idée de continuer à collaborer avec le gouvernement, les intervenants, et, par-dessus tout, les personnes touchées par la maladie d’Alzheimer et les maladies apparentées afin de mettre au point et d’instaurer la première stratégie nationale qui y est consacrée au Canada.
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!
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 atwww.carepartners.ca
Bringing the Ontario Dementia Strategy to the Forefront at AAIC 2016
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 firstname.lastname@example.org.
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.
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.”
People with dementia speak to Senate Standing Committee
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.
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.
The rising tide of dementia in Canada: Facing the critical challenge by 2025
On September 17, 2015, Drs. Carole Estabrooks and Howard Feldman convened the 10th Annual Forum of the Canadian Academy of Health Sciences (CAHS) on the topic of dementia in Canada. The Academy is a unique Canadian organization that brings together a breadth of expertise and scholarship across a broad view of health, including social scientists, biomedical researchers, health care practitioners, and technology experts. Fora and their follow-up activities often produce important outputs including publications that can serve to inform public policy.
This Forum addressed the many dimensions of how the unprecedented growth of dementia in Canada will reshape our landscape, socially, economically, medically and politically. The particular focus of this event, was to capture the broad view of how we will need to advance systems of care delivery, re-shape our living and built environment, mobilize technology, and develop an end-to-end national program so that all Canadians with Alzheimer’s disease or other forms of dementia can receive quality care and be supported in their communities, irrespective of where they live, or who they are.
The magnitude of the dementia challenge was underscored both from Canadian data where it is projected that there will be close to 800,000 individuals affected by 2031, and from global estimates where the prevalence is projected to more than double to 81 million affected individuals by 2040.
A critical part of the solution, was noted to reside in the potential for disease prevention, where in the same time frame a delay in diagnosis of 1 year could reduce prevalence by 10% while a 5 year delay could half the prevalence. Clinical trials data were presented underscoring that a combination approach of exercise training, cognitive training, control of vascular risk factors, and dietary counselling created significant benefits in cognition and well-being, setting the stage for pursuit of such benefits in larger and longer studies and programs.
There were presentations on some superbly innovative programs of care, and technologies being developed in Canada that hold the potential to transform care, as well as, presentations highlighting the significant challenges we face in providing quality care, quality of late life, and quality end-of-life care to affected persons in the middle and advanced stages of dementia. Within the rural setting, researchers in Saskatchewan and Quebec have come up with systems of care to better deliver and reach individuals irrespective of where they live. Research investments in technology will allow the mobilization of state of the art engineering solutions to help provide safer home environments for those at risk and allow them to get around their communities.
Additionally efforts to support better understanding of the biology of these disorders were noted to have received significant funding and attention. However, it was also recognized that as a country we need to move from being prolific in pilot projects to being able to scale up and implement programs of proven research benefit to benefit the lives of Canadians across the country.
There was a consensus viewpoint of the Forum attendees at the end of the day that the Academy consider an assessment that would develop evidence-informed recommendations to improve scalability and implementation of programs and interventions for individuals at risk or affected by Alzheimer’s disease and other forms of dementia across the country.
Dr Carole A Estabrooks, PhD, RN, FCAHS, FAAN Professor & Tier 1 Canada Research Chair (Knowledge Translation, University of Alberta)
Dr Carole A Estabrooks is Professor, Faculty of Nursing, at the University of Alberta, and Tier 1 Canada Research Chair in Knowledge Translation. She is a fellow in the Canadian Academy of Health Sciences (FCAHS) and in the American Academy of Nursing (FAAN). She is Scientific Director of the Knowledge Utilization Studies Program (KUSP) and the pan-Canadian Translating Research in Elder Care (TREC) research program hosted at the University of Alberta.
Dr Estabrooks’ applied health services research program focuses on knowledge translation in the health sciences. She studies the influence of organizations on the use of knowledge and its effects on quality of care, quality of life/quality of end of life and quality of work life outcomes. Her work is primarily situated in the residential long term care sector and focuses increasingly on quality improvement and the spread and scale-up of innovation.
Dr. Estabrooks is a past member and vice-chair of CIHR’s Institute of Aging Advisory Board. She is appointed in the University of Alberta’s School of Public Health and is affiliated with the University of Toronto’s Nursing Health Services Research Unit. She is a co-investigator on numerous national and international research projects. She is the 2014 recipient of the CIHR Institute of Aging’s Betty Havens prize in Knowledge Translation. She teaches in the doctoral program and supervises graduate students and postdoctoral fellows. She has developed and continues to evaluate the Alberta Context Tool (ACT) currently in use in nine countries and six languages.
Dr. Howard Feldman, MD, FRCP (C)
Professor of Neurology and Director UBC Hospital Clinic for Alzheimer’s Disease and Related Disorders, University of British Columbia, Vancouver.
In his research, Dr. Feldman has made seminal contributions to his field with scientific discoveries and clinical research focussed on aging, mild cognitive impairment/ Alzheimer’s disease, frontotemporal dementia (FTD) and diagnostic/therapeutic trials. His research has contributed to the discoveries of the progranulin (Nature 2006) and C9ORF72 (Neuron 2011) genetic mutations which cause FTD and FTD with motor neuron disease. He has also contributed to the development of important novel criteria for Alzheimer’s disease that conceptualize and operationalize the earliest stages of disease (Lancet Neurology 2007, 2011,2014). He has lead a number of international clinical trials in Alzheimer’s disease contributing important new original data, informing care across the continuum of the disease.
His career contributions have been profiled in Lancet Neurology in 2007, and in 2014 was named by Thomson Reuters as a highly cited neuroscientist and amongst the world’s most influential scientific minds. He has been appointed as Fellow of the Canadian Academy of Health Sciences and the American Academy of Neurology in 2008. He has served as inaugural Fisher Family and Alzheimer Society of British Columbia Endowed Professorship for Research in Alzheimer’s Disease. He currently serves as the Director UBC Hospital Clinic for Alzheimer’s Disease and Related Disorders and works both as an active clinician, educator and research scientist. LA VAGUE CROISSANTE DE LA DÉMENCE AU CANADA : AFFRONTER CE DÉFI CRITIQUE D’ICI 2025
Le 17 septembre 2015, les Drs Carole Estabrooks et Howard Feldman ont convoqué le 10e Forum annuel de l’Académie canadienne des sciences de la santé (ACSS) sur le thème des maladies cognitives au Canada. L’Académie est une organisation canadienne unique qui permet de mettre en commun l’expertise et les connaissances de nombreuses sommités dans le domaine de la santé, y compris des spécialistes des sciences sociales, des chercheurs en sciences biomédicales, des professionnels des soins de santé et des experts de la technologie. Les forums et activités de suivi produisent souvent des résultats importants, y compris des publications qui peuvent servir à orienter les politiques d’intérêt public.
Le 10e forum s’est intéressé aux transformations qu’entraînera la croissance sans précédent des maladies cognitives sur le paysage social, économique, médical et politique canadien. Les participants ont tout particulièrement mis l’accent sur la nécessité de fournir des services améliorés de prestation des soins, de repenser notre milieu de vie et notre environnement bâti, de mobiliser la technologie et d’élaborer un programme national de soutien pour s’assurer que tous les Canadiens atteints de l’Alzheimer ou d’une maladie apparentée puissent recevoir des soins de qualité et être soutenus dans leur collectivité, peu importe où ils vivent ou qui ils sont.
La magnitude du défi à relever dans le domaine des maladies cognitives a été soulignée aussi bien par les données nationales, qui estiment que près de 800 000 personnes seront atteintes d’ici 2031, que par les données mondiales qui prévoient que la prévalence des ces maladies augmentera de plus du double par rapport à aujourd’hui pour atteindre 81 millions de personnes d’ici 2040.
La prévention constitue un élément critique de la solution. En effet, la prévalence de la maladie serait réduite de 10% en retardant le diagnostic d’un an, et elle serait réduite de moitié si on pouvait retarder de cinq ans l’apparition des symptômes. Les données cliniques présentées soulignent qu’une stratégie multiple favorisant l’entraînement physique et cognitif, la maîtrise des facteurs de risque vasculaire et l’adoption d’un régime alimentaire sain pourrait procurer des bienfaits considérables dans le domaine de la cognition et du bien-être. Cette stratégie ouvrirait également la voie à d’autres avantages similaires qui pourraient être déterminés dans le cadre d’études et de programmes de plus grande envergure.
Plusieurs présentations ont fait état de certains programmes de soins et équipements technologiques révolutionnaires mis au point au Canada et qui ont le potentiel de transformer la prestation des soins. D’autres présentations ont mis en lumière les difficultés importantes à surmonter dans le domaine de la prestation de soins de qualité à un âge avancé et en fin de vie pour les personnes atteintes d’une maladie cognitive au stade modéré et avancé. Par ailleurs, des chercheurs de la Saskatchewan et du Québec ont élaboré des manières de procéder pour aider les personnes en milieu rural à obtenir la même qualité de soins, peu importe où ils vivent. L’investissement dans la technologie permettra de trouver des solutions de pointe en matière d’ingénierie pour créer des milieux de vie sans danger à la maison pour les personnes à risque et leur permettre de bien fonctionner dans leur collectivité.
Selon les participants, beaucoup d’attention et de financement ont été accordés à la biologie de ces maladies. Cependant, on a également reconnu qu’il était nécessaire pour notre pays de franchir l’étape des projets pilotes afin de mettre en place des programmes viables et efficaces pouvant accroître la qualité de vie des Canadiens de tout le pays.
En conclusion, les participants ont convenu de la nécessité pour l’académie de soumettre des recommandations fondées sur des données probantes de manière à accélérer la mise en place des programmes de soutien et d’intervention pour les personnes à risque et celles atteintes de la maladie d’Alzheimer ou d’une autre maladie cognitive dans tout le pays.
Dre Carole A Estabrooks, PhD, RN, FCAHS, FAAN
Professeure et titulaire de la chaire de recherche du Canada de niveau 1 (transfert des connaissances, Université de l’Alberta)
La Dre Carole A Estabrooks est professeure à la Faculté des sciences infirmières de l’Université de l’Alberta et titulaire de la chaire de recherche du Canada de niveau 1. Elle est membre associée de l’Académie canadienne des sciences de la santé (ACSS) et de l’American Academy of Nursing (FAAN). Elle est directrice scientifique du Knowledge Utilization Studies Program (KUSP) et du programme scientifique pancanadien Translating Research in Elder Care (TREC) de l’Université de l’Alberta.
Le programme de recherche appliquée en services de santé de la Dre Estabrooks met l’accent sur l’application des connaissances dans le domaine des sciences de la santé. Dre Estabrooks étudie l’influence des organisations sur l’utilisation des connaissances et ses effets sur la qualité des soins, la qualité de la vie, la qualité des soins de fin de vie et la qualité des résultats de la vie professionnelle. Son travail porte principalement sur les établissements de soins de santé de longue durée et met de plus en plus l’accent sur l’amélioration de la qualité des soins et sur la diffusion à grande échelle de l’innovation.
La Dre Estabrooks est une ancienne membre et vice-présidente du conseil consultatif de l’Institut du vieillissement des IRSC. Elle occupe un poste à l’école de santé publique de l’Université de l’Alberta et elle est affiliée à l’unité de recherche en services de soins infirmiers de l’Université de Toronto. De plus, la Dre Estabrooks est co-chercheure dans plusieurs projets de recherche nationaux et internationaux. En 2014, elle a obtenu le prix Betty Havens en application des connaissances de l’Institut du vieillissement des IRSC. Elle enseigne au doctorat et supervise des étudiants des cycles supérieurs et des stagiaires postdoctoraux. Elle a mis au point et continue d’évaluer l’Alberta Context Tool (ACT) qui est actuellement utilisée dans neuf pays et six langues.
Dr Howard Feldman, MD, FRCP (C)
Professeur de neurologie et directeur du centre hospitalier sur l’Alzheimer et les maladies apparentées de l’Université de la Colombie-Britannique, Vancouver.
Le Dr Feldman a apporté une contribution exceptionnelle à son domaine d’expertise grâce à ses découvertes scientifiques et à ses recherches cliniques sur le vieillissement, la déficience cognitive légère, la maladie d’Alzheimer, la dégénérescence frontotemporale (FTD) et les essais diagnostiques et thérapeutiques. Ses recherches ont contribué à la découverte de la progranuline (Nature 2006) et des mutations du gène C9ORF72 (neurone 2011) qui causent la FTD et la FTD avec sclérose latérale amyotropique. Il a également contribué au développement de nouveaux critères importants pour la maladie d’Alzheimer qui conceptualisent et opérationnalisent les stades précoces de la maladie (Lancet Neurology 2007, 2011,2014). Il a mené un certain nombre d’essais cliniques internationaux sur la maladie d’Alzheimer qui ont contribué à l’acquisition de nouvelles données originales permettant d’orienter la prestation des soins tout au long du continuum de la maladie.
Les contributions qu’il a réalisées au cours de sa carrière ont été présentées dans Lancet Neurology en 2007. En 2014, il a été nommé par Thomson Reuters parmi les neuroscientifiques les plus fréquemment cités et parmi les scientifiques les meilleurs et les plus influents au monde. En 2008, il est devenu membre associé de l’Académie canadienne des sciences de la santé (ACSS) et de l’American Academy of Neurology. Il a été le premier directeur de la Fondation Fisher Family et dirige une chaire de recherche sur la maladie d’Alzheimer à la Société Alzheimer de la Colombie-Britannique. Clinicien, éducateur et chercheur très actif, il exerce actuellement les fonctions de directeur du centre hospitalier sur la maladie d’Alzheimer et les maladies apparentées de l’Université de la Colombie-Britannique.