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Research Video Series: Introducing Laura Hamilton

Research Video Series: Introducing Laura Hamilton


Dr. Laura Hamilton is testing the efficacy of a new therapeutic target (stearoyl CoA desaturase (SCD)-1) to improve learning and memory deficits in Alzheimer’s disease using a mouse model. Laura is a postdoctoral fellow at the University of Montréal and is this year’s Alzheimer Society Research Program Spark Award Recipient.

The potential to contribute to a better quality of life for millions of people motivates me every day.
-Dr. Laura Hamilton

Dr. Laura Hamilton

Spark Postdoctoral Fellowship in Alzheimer’s Disease (Biomedical) – $100,000
Project: Triggers and behavioural consequences of elevated oleic acid in the Alzheimer’s disease brain

Read about more of our grants and awards recipients here.

Research Video Series: Introducing Dr. Rahel Rabi

Research Video Series: Introducing Dr. Rahel Rabi


At the University of Toronto, Rahel Rabi’s research focuses on diagnosis and detection, where she is working hard to identify the cognitive biomarkers of mild cognitive impairment (MCI). In this video, Rahel describes her research funded by the Alzheimer Society Research Program in her own words.

Scientists have made remarkable strides in understanding Alzheimer’s disease, and with recent advances in research involving novel techniques, we can work towards finding a cure.
-Rahel Rabi

Rahel Rabi

Rawlinson Post-Doctoral Fellowship in Alzheimer’s Disease (Quality of Life) – $100,000
Project: Stroop event-related potentials as neurocognitive markers for amnestic mild cognitive impairment
This project is funded by the Rawlinson Family.

Read about more of our grants and awards recipients here.

What this week’s Nobel Prize in Medicine announcement means for dementia research

What this week’s Nobel Prize in Medicine announcement means for dementia research

Brain cells

This year’s Nobel Prize in Medicine was awarded to Japanese biologist Yoshinori Ohsumi for his discoveries on how cells eat themselves.

That’s right – Ohsumi conducted experiments in the 1990s on how cells break down and recycle their components, literally eating themselves to remove damaged content and provide building blocks for cell regeneration.

This process is called “autophagy”, a term that was actually coined in 1963 by Belgian scientist Christian de Duve, who also received a Nobel Prize for his work in this area.

So what’s so noteworthy about Ohsumi’s research? His discoveries are significant because he was able to show why this process exists, where it happens, and its different uses in the human body.

For example, we now know that autophagy removes proteins that clump together abnormally in brain cells, like in some forms of dementia. The process also plays a key role in the immune system, where defects can be a common thread across many diseases of aging, from neurodegeneration to cancer. In fact, autophagy defects have been linked to many health conditions, including Alzheimer’s, Parkinson’s, Type 2 diabetes and cancer.

Researchers are now trying to figure out whether these diseases can be treated with new drugs that boost or suppress the autophagy process. As research in this area progresses, it could completely change the way we treat conditions like dementia, whose cause is still unclear and for which there is currently no cure.


Did you know? The Alzheimer Society supports biomedical and quality of life research through the Alzheimer Society Research Program (ASRP). Since its inception in 1989, the ASRP has funded over $50 million in grants and awards. Discover the exciting new avenues in dementia research being explored by Alzheimer Society Research Program (ASRP) recipients >

Let’s make a difference on World Alzheimer’s Day

Let’s make a difference on World Alzheimer’s Day

Alzheimer's research

Today we celebrate World Alzheimer’s Day, a perfect time to focus on the amazing work being done worldwide to conquer dementia. It is also a fantastic opportunity to raise awareness and show our support for those affected by the disease.

Dementia affects everyone, whether we know someone living with the disease, volunteer, provide care or conduct research to uncover the cure – in one way or another, we are in this together.

Ekaterina Rogaeva
Pictured above: Alzheimer’s researcher Ekaterina Rogaeva

When the Alzheimer Society of Ontario was first formed in 1983, our mission was to help people affected by dementia through expert care and support, funding research, education and increasing awareness of dementia. And we continue to do so today.

It’s pretty remarkable to think 110 years ago was when the first signs of Alzheimer’s disease were discovered. Flash forward to today – our technology and research methods are so advanced that we can use techniques such as brain imaging and biomarkers to investigate the potential causes and cures for the disease. But there is still so much more to be discovered.

 

I hope you will join us in recognizing World Alzheimer’s Day. A small act can help make a remarkable difference. Share this blog with a friend, sign up for our e-newsletter, or even make a donation today.

Thanks to a special match offer from the Decker Family, your donation in support of research will be doubled! For every dollar you donate, it will be matched to make twice the impact and help bring our researchers one step closer to conquering dementia.

Our vision is a world without Alzheimer’s disease and other dementias. A world where our family and friends are never affected by Alzheimer’s. A world where dementia is the distant memory we cannot recall.

Thank you for your generous support!

Changing the way dementia research is done in Canada

Changing the way dementia research is done in Canada

By Drs. Katherine McGilton and Jennifer Bethell

Research is usually researcher-driven. We want to help change that.

What do we mean? Researchers usually decide what work is important enough to be funded and then good enough to be published. But are researchers aware of the issues that matter most to those who can actually benefit from their work? Not always.

That’s why we’ve created the Canadian Dementia Priority Setting Partnership, a study that will bring the voices of Canadians affected by dementia into the conversation about research. By involving people with lived experience, we can improve the way that dementia research is done and communicated.

The results of the study will produce a list of the top 10 Canadian dementia research priorities, which we hope will help guide researchers and the organizations that fund them.

Whether you are living with the disease, a caregiver, a health-care provider, or even just interested in the issue – we want to hear from YOU.

Please take a few minutes to complete the study questionnaire, here: alzheimer.ca/researchpriorities.

Help spread the word by sharing the link through your personal and social networks.


Changer la manière de mener la recherche sur les maladies cognitives au Canada

Changing the way dementia research is done in Canada

Par les Dres Katherine McGilton et Jennifer Bethell

Les travaux de recherche sont habituellement engagés par les chercheurs. Nous voulons aider à changer cela.

Qu’est-ce que cela signifie? Les chercheurs déterminent généralement les travaux qui sont assez importants pour être financés et ceux qui sont assez bon pour être publiés. Les chercheurs sont-ils cependant conscients des enjeux les plus importants pour les personnes qui sont réellement concernées par leur travail? Pas toujours.

C’est pourquoi nous avons mis sur pied le Partenariat canadien pour l’établissement des priorités sur les maladies cognitives : une étude qui permettra aux Canadiens touchés par les maladies cognitives de faire entendre leur voix dans le débat sur la recherche. En impliquant des personnes ayant une expérience vécue, nous pouvons améliorer la manière de mener et de communiquer les travaux de recherche sur les maladies cognitives.

Les résultats de l’étude permettront d’établir une liste de 10 priorités de recherche sur les maladies cognitives au Canada, qui, nous l’espérons, pourront guider les chercheurs et les organisations qui les financent.

Que vous soyez atteint de la maladie, que vous soyez un aidant, un fournisseur de soins de santé, ou que la question vous intéresse tout simplement… nous voulons avoir VOTRE avis!

Veuillez prendre quelques minutes pour répondre au questionnaire : alzheimer.ca/prioritesderecherche.

Aidez-nous à faire passer le mot en diffusant ce lien dans vos réseaux personnels et sociaux.

People with dementia speak to Senate Standing Committee

People with dementia speak to Senate Standing Committee

2016_05-18_ODAGSenate-(35-of-44)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:

 

 

 

Good afternoon,

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.

7717055Mary 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.

Introducing the 2016 Alzheimer Society Research Program (ASRP) Community Representatives

Introducing the 2016 Alzheimer Society Research Program (ASRP) Community Representatives

This year the Alzheimer Society celebrates 28 years of funding research through the Alzheimer Society Research Program (ASRP). The peer review panel meetings were held in February 2016 in Toronto, Ontario, and included the role of Community Representatives. Community Representatives are members of the general public who are not currently involved with research who are given the opportunity to comment on the intent, purpose and on the clarity of the language used within the lay summaries of research applications that are received by the Society. Their involvement in peer review serves as a mechanism for public accountability by providing feedback on the ASRP peer review process.

It is with great pleasure that we introduce our 2016 Community Representatives:

Neville-Chenoy“I was amazed at the breadth and scope of research projects which were received from researchers across the country. I had no idea of the extent of this endeavor but, on a personal level, very grateful that so much work is being done to identify the cause of the Alzheimer problem which may one day lead to a cure.

Even more impressive to me was the expertise and dedication of the panel members to review the various proposals. Each panel member must have spent countless hours doing so liaising with colleagues, analyzing what was being proposed and bringing to the table an informed judgment.

The process itself was unique in that it set out to be fair by applying a scoring system from the start and laying out ground rules for conflict of interest which were meticulously followed. Over the years I have participated in many organizations working to allocate their resources to new programs or research proposals but your Peer Review Process is truly tops.”

-Neville Chenoy, 2016 Community Representative, Biomedical Peer Review Panel
Neville is living with Mild Cognitive Impairment. He is a retired health care consultant living in Toronto and attends support groups hosted by the Alzheimer Society of Toronto.

 

Sherri-Russell“Funding research on Alzheimer’s disease and dementia is important to me because it is not a clearly defined or understood disease and more information is needed.

It was a pleasure being a part of the Peer Review Panel. Thanks to those who made us feel welcomed – a memory I shall never forget …I hope!”

-Sherri Russell, 2016 Community Representative, Quality of Life Peer Review Panel
Sherri is living with Mild Cognitive Impairment. She formerly worked in Real Estate. Sherri enjoys playing bridge, writing, exercising and staying social.

 

 

 

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Des représentants de la collectivité participent au Programme de recherche de la Société Alzheimer 2016 (PRSA)

Le Programme de recherche de la Société Alzheimer finance la recherche depuis maintenant 28 ans. Des représentants de la collectivité ont participé aux réunions des comités d’évaluation par des pairs, qui ont eu lieu en février 2016 à Toronto (Ontario). Les représentants de la collectivité sont des membres du grand public qui ne participent pas actuellement à la recherche. Ils donnent leurs commentaires sur les intentions et les objectifs des projets de recherche soumis et sur la clarté du langage utilisé dans les résumés simplifiés. Leur contribution au processus d’évaluation par des pairs fournit un mécanisme de reddition de comptes auprès du public.

Nous sommes très heureux de vous présenter nos représentants de la collectivité pour 2016:

Neville-Chenoy« J’ai été frappé par l’ampleur et la portée des projets de recherche soumis par les chercheurs de tout le pays. Je ne m’attendais pas à une telle activité. Je dois dire que je suis personnellement très heureux de l’importance des efforts déployés pour mieux comprendre la maladie d’Alzheimer. Un jour, il sera possible de la guérir.

J’ai été encore plus impressionné par l’expertise et le dévouement des membres du comité chargé d’évaluer les divers projets soumis. Chacun des participants doit sans doute consacrer de nombreuses heures à cet exercice, pour assurer la liaison avec les autres membres du comité, faire l’évaluation des projets et apporter un jugement éclairé au cours des discussions.

Le processus d’évaluation est unique en ce qu’il applique un système de pointage pour assurer des conditions équitables, et des règles strictes pour éviter les conflits d’intérêts. Au fil des ans, j’ai participé à de nombreux groupes de travail chargés de l’allocation des ressources destinées à de nouveaux programmes ou à des projets de recherche, mais votre processus d’évaluation par les pairs n’a vraiment pas son pareil. »

-Neville Chenoy, représentant du public 2016, comité d’évaluation par les pairs, volet biomédical
Chenoy est atteint d’un trouble cognitif léger. Consultant en soins de santé, il est maintenant à la retraite et participe à des groupes de soutien offerts par la Société Alzheimer de Toronto.

 

Sherri-Russell« Le financement de la recherche sur la maladie d’Alzheimer et les autres maladies cognitives est important pour moi, parce que ces maladies ne sont pas clairement cernées ni comprises et qu’il est nécessaire de pousser plus avant.

J’ai été ravie de faire partie du comité d’évaluation par des pairs. Je vous remercie de nous avoir chaleureusement accueillis. Je n’oublierai jamais cette expérience… enfin je l’espère. »

-Sherri Russell, représentante du public 2016, comité d’évaluation par les pairs, volet qualité de vie

Mme Russell, qui est atteinte d’un trouble cognitif léger, travaillait auparavant dans l’immobilier. Elle aime le bridge, l’écriture, l’exercice et les activités sociales.

 

Introducing the 2015 Alzheimer Society Research Program (ASRP) Community Representatives / Des représentants de la collectivité participent au Programme de recherche de la Société Alzheimer (PRSA)

Introducing the 2015 Alzheimer Society Research Program (ASRP) Community Representatives / Des représentants de la collectivité participent au Programme de recherche de la Société Alzheimer (PRSA)

This year the Alzheimer Society celebrates 27 years of funding research through the Alzheimer Society Research Program (ASRP). The peer review panel meetings were held in February 2015 in Toronto, Ontario, and included the role of Community Representatives.

Community Representatives are members of the general public who are not currently involved with research who are given the opportunity to comment on the intent, purpose and on the clarity of the language used within the lay summaries of research applications that are received by the Society. Their involvement in peer review serves as a mechanism for public accountability by providing feedback on the ASRP peer review process.

It is with great pleasure that we introduce our 2015 Community Representatives:

“I was given the chance to understand the peer review process and the Alzheimer society’s involvement in research when I reviewed as a community representative. Being a part of the process meant a lot to me. The different abstracts read were very helpful to me because it gave me hope about my husband who has MCI, some of which may help him someday.  Also, the doctors we met were all very professional and ethical, open and friendly. As a caregiver I found the peer review process to be a learning experience; I got to learn about interesting abstracts and research about MCI/Alzheimer’s disease/Dementia.

Funding research on Alzheimer’s disease and dementia is important to me because there is a need for early diagnosis, understanding the cause of Alzheimer’s and treatment for the different types of dementias. Hopefully my husband and children and others will benefit from this research.”

-Lydia Watts, 2015 Community Representative, Biomedical Peer Review Panel

Lydia is the primary caregiver to her husband, Bruce, who has Mild Cognitive Impairment. She is a retired medical technologist and now enjoys volunteering and her hobbies include beading and taking online courses.

Bruce-and-Lydia-Watts
“This has been a rewarding and interesting experience. It is encouraging to hear how much research and development there is to control the advancement and perhaps eventually cure this devastating disease. Everyone we met at this conference are very friendly, open and encouraging people all working together with a similar goal – to beat this disease and improve our quality of life. Having an opportunity to comment on the research left me feeling heard and understood for the input I was given the chance to offer.

As a person living with dementia I found the peer review process to be an important and worthwhile endeavour and time well spent.

Funding research on Alzheimer’s disease and dementia is important to me because research is finding a way to control and eventually cure Alzheimer’s and MCI is important now and for future generations.”

-Bruce Watts, 2015 Community Representative, Biomedical Peer Review Panel

Bruce is living with Mild Cognitive Impairment and is supported by his wife Lydia and family. He is a retired medical technologist. His hobbies include photography.

 

Gail“This has been a positive and encouraging experience. I am impressed with the variety of proposals and the thorough and detailed process used to make decisions. The discussions were clear and lively and people were patient yet challenging.

As a person living with dementia I found the peer review process to be encouraging and thorough.

Funding research on Alzheimer’s disease and dementia is important to me because I hope they will find a cure. As well it will provide different and new ways to deal with the disease. I am particularly interested in long term care.”

-Gail Reid, 2015 Community Representative, Quality of Life Peer Review Panel

Gail is living with Alzheimer’s disease. She formerly worked as a social worker, magazine editor and writer.

 

Sandi“I am honoured and pleased to play a small part on this panel.As a person living with dementia I found the peer review process to be very formative and interesting.

Funding research on Alzheimer’s disease and dementia is important to me because with the aging population there is a great need.”

-Sandi Matchett, 2015 Community Representative, Quality of Life Peer Review Panel

Sandi is living with dementia. She is a former graphic designer who enjoys water colour painting and playing tennis.

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Le Programme de recherche de la Société Alzheimer finance la recherche depuis maintenant 27 ans. Des représentants de la collectivité ont participé aux réunions des comités d’évaluation par des pairs, qui ont eu lieu en février 2015 à Toronto (Ontario).

Les représentants de la collectivité sont des membres du grand public qui ne participent pas actuellement à la recherche. Ils donnent leurs commentaires sur les intentions et les objectifs des projets de recherche soumis et sur la clarté du langage utilisé dans les résumés simplifiés. Leur contribution au processus d’évaluation par des pairs fournit un mécanisme de reddition de comptes auprès du public.

Nous sommes très heureux de vous présenter nos représentants de la collectivité pour 2015.

« À titre de représentante de la collectivité, j’ai eu la chance de comprendre le fonctionnement du processus d’évaluation par des pairs et les modalités de participation de la Société Alzheimer à la recherche. Cela a été très important pour moi de participer à ce processus. Les divers résumés que j’ai lus m’ont donné beaucoup d’espoir pour mon mari qui est atteint d’un trouble cognitif léger. Certains des projets soumis pourraient un jour ou l’autre lui venir en aide. Tous les médecins que j’ai rencontrés ont fait preuve d’éthique et de professionnalisme, en plus d’être très ouverts et sympathiques. Le processus d’évaluation par des pairs m’a permis d’enrichir mes connaissances à titre d’aidante. J’ai appris beaucoup à la lecture des résumés de recherche sur les troubles cognitifs légers, la maladie d’Alzheimer et les maladies apparentées.

Le financement de la recherche sur l’Alzheimer et les maladies apparentées me tient à cœur. Il est important d’établir rapidement le diagnostic et de trouver les causes de ces maladies afin de mettre au point un traitement. J’espère que mon mari, mes enfants et d’autres personnes pourront en profiter »

– Lydia Watts, représentante de la collectivité, comité d’évaluation par les pairs, volet biomédical

Mme Watts est l’aidante principale de son mari, Bruce, atteint d’un trouble cognitif léger. Technologiste médicale à la retraite, elle aime faire du bénévolat, broder et suivre des cours en ligne.

Bruce-and-Lydia-Watts
“« Cette expérience a été très intéressante et très enrichissante. L’ampleur des recherches menées actuellement pour combattre et guérir cette terrible maladie m’a beaucoup encouragé. Au cours de cette conférence, nous avons rencontré des gens sympathiques, ouverts et encourageants, qui travaillent tous ensemble à la réalisation d’un même objectif , à savoir améliorer notre qualité de vie et vaincre cette maladie. Cette chance que j’ai eue d’émettre mes commentaires sur la recherche m’a donné le sentiment d’être entendu et compris. À titre de personne atteinte d’une maladie cognitive, ma participation au processus d’évaluation par des pairs a été pour moi une activité très gratifiante.

Si nous voulons combattre l’Alzheimer et les maladies apparentées et en arriver un jour à les vaincre, il est important de poursuivre le financement de la recherche pour les personnes atteintes aujourd’hui et pour les générations futures. »

-Bruce Watts, comité d’évaluation par les pairs 2015, volet biomédical

M. Watt, technologiste médical à la retraite, est atteint d’un trouble cognitif léger. Il bénéficie du soutien de sa femme Lydia et de sa famille.

 

Gail« Cette expérience a été positive et encourageante. Je suis impressionnée par la variété des projets soumis et le processus minutieux mis en place pour prendre les décisions. Les discussions étaient animées et intéressantes, exigeantes et stimulantes.

La recherche sur l’Alzheimer et les maladies apparentées est importante pour moi parce qu’elle nous permettra de trouver de nouveaux moyens de combattre ces maladies et de découvrir un remède. Je m’intéresse particulièrement aux soins de longue durée. »

-Gail Reid, représentante du public 2015, comité d’évaluation par des pairs, volet qualité de vie

Mme Reid, qui est atteinte de la maladie d’Alzheimer, a été travailleuse sociale, rédactrice en chef d’une revue et écrivaine.

 

Sandi
« Je suis atteinte d’une maladie cognitive et je suis heureuse du petit rôle que je remplis au sein de ce comité.

Le processus d’évaluation par des pairs a pour moi été très formateur et très intéressant.

Le financement de la recherche sur l’Alzheimer et les maladies apparentées est important en raison des nouveaux besoins créés par le vieillissement de la population. »

-Sandi Matchett, comité d’évaluation par les pairs 2015, volet qualité de vie

Mme Matchett, représentante de la collectivité, est atteinte d’une maladie cognitive. Graphiste à la retraite, elle aime l’aquarelle et le tennis.

My run for Alzheimer research

My run for Alzheimer research

Chris Dennis is the CEO of the Alzheimer Society of Ontario.

Even though I ran half a dozen marathons in my youth, 20 years on preparing for number seven wasn’t as easy as I thought. Since I received my son’s ‘Christmas gift,’ which entailed signing us both up for the Ottawa Marathon six months down the road, I have trained through rain and snow. And then, just to add a little pressure, I decided to turn my run into a fundraiser for Alzheimer’s disease research.

Why have one challenge when you can have two?

There have been bumps along the way. In addition to the coldest February on record, my doctor diagnosed me with bronchitis a week before the race. But with a puffer and some meds, he sent me on my way. I was ready..err sort of.

And with so many people rallying behind my fundraising effort, I more than doubled my goal and raised $13,000. Expectations were high and I didn’t want to let everyone down.

On May 24, I ran my marathon. It was gruelling and a lot slower since the last time I completed one. Having never cramped up in my entire life, I got my first at the 13 km mark. Such fun! Four hours on the pavement is a lot more difficult than the three I used to clock in days past. And my son beat my time by 40 minutes, leaving no doubt that the torch has been passed.

I ran my race but will stick to 10 kilometre races for the future. But it’s an experience I won’t soon forget.

ASO Marathon Chris DennisChris Dennis

CEO, the Alzheimer Society of Ontario

Cracked: New Light on Dementia combines research, dementia and the arts

Cracked: New Light on Dementia combines research, dementia and the arts

In the spring and fall of 2013, I worked with a team of artists and researchers on the play Cracked: New Light on Dementia. I was brought onto the project because of my theatre background and because of my personal and professional experience working with people who have dementia.

The play is intended to inspire alternative ways of seeing people living with dementia, instill the importance of maintaining strong relationships with them, and reinforce the imperative for good ethical care. The play will enhance person-centred care with the help of funding from the Alzheimer Society Research Program (ASRP). The ASRP is funding performances in long term care settings to research how health care workers shift their understanding of dementia after seeing the play.

With the support of an Ontario Arts Council Theatre Creator’s Reserve grant (administered through Theatre Gargantua), I spent a month with the team – two weeks in the spring and then two weeks in the fall – acting as Dramaturge and Assistant Director. This means that I worked closely with the director/playwright, providing insight and support on the development of the script and the performance. I also attended the rehearsals with the performers and researchers, and gave feedback and suggestions as needed.

When I arrived at my first rehearsal, the team had already been working on the piece intermittently for about a year, discussing themes, improvising scenes, and exploring characters, storylines, music and movement, and drawing on the research and professional experience of the research team.

It is difficult to fully express how beautiful it was to watch the actors work, and to see how bravely, spontaneously and creatively they approached the material. In a word, it was breathtaking.

A highlight for me was that, before I came onboard, members of the team had held focus groups and informal conversations with people living with dementia, and these provided valuable inspiration for the creation of the piece. Then while I was there, we had the opportunity to visit a long term care facility, and were able to spend time with some of the residents and there, in both one-on-one and group settings.

The experiences, thoughts, words and insights that were so openly and generously shared with us were brought up and discussed time and time again during our rehearsals. These individuals had made a tremendous impact on all of us, and you can see some of these experiences and insights in the final piece. There is incredible truth in this play.

It was magical to spend so much time with a group of people determined to change negative dementia discourses through the theatre. Art can be a powerful tool for creating social change, as it tends to reach us on a deep and personal level, stirring something in us that perhaps cannot be reached through other means. The magnitude of our responses can sometimes even catch us off guard, and many times in the rehearsal process I found myself brought to tears.

Cracked is a truthful and nuanced story of dementia, where joy and grief, strength and vulnerability, and struggle and peace all come together in an intricate dance. It demonstrates the power of relationships, and, perhaps most importantly, it shows us that who we are – the very core of ourselves – remains intact throughout the dementia journey.

aynsley_moorhouse
Photo credit: Karl Ang

Aynsley Moorhouse, MFA, MSW, RSW

Alzheimer Society of Toronto    

 

 

 

 

The Cracked Ensemble

Director: Julia Gray

Performers: Susan Applewhaite, Lori Nancy Kalamanski, Sarah Machin Gale, Claire Frances Muir, Jason Chesworth, Tim Machin, David Talbot

Research Team: Drs. Sherry Dupuis, Pia Kontos, Gail Mitchell, Christine Jonas-Simpson

Co-Creators: Mark Prince, Mary Ellen MacLean

Set and Costume Design: Lindsay Anne Black

Music Director: Tim Machin

Stage Manager: Elizabeth McDermott

Assistant Director/Dramaturge: Aynsley Moorhouse

Scenic Artist: Ksenia Ivanova

Wardrobe Assistant: Alyksandra Ackerman

 

For performance dates and a full list of acknowledgements and sponsors, please visit: https://uwaterloo.ca/partnerships-in-dementia-care/re-imagining-dementia-through-arts/cracked-new-light-dementia