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Announcing the top 10 Canadian dementia research priorities

Announcing the top 10 Canadian dementia research priorities

[Le texte en français suit l’anglais ci-bas.]

By Drs. Katherine McGilton and Jennifer Bethell

Over the course of the past year, we asked Canadians affected by dementia—either personally or through their work—for their unanswered questions about living with dementia, dementia prevention, treatment and diagnosis. This study, also known as the Canadian Dementia Priority Setting Partnership, set out to identify the top 10 dementia research priorities, and to share them with Canadian researchers and research funding organizations.

We thank the over 1200 participants who shared their insights. Thousands of questions were submitted and the shortlist was debated at an in-person workshop, held in Toronto on June 8-9, 2017.

Canadian Dementia Priority Setting Partnership workshop,
June 8-9, 2017, in Toronto

The workshop brought together 28 participants from across Canada—persons with dementia, family members, health and social care providers and members of organizations that represent persons with dementia. Participants worked in small teams and as a group to discuss each question and decide what matters most to them.

Here are the top 10 dementia research priorities, according to Canadians affected by dementia:

Top 10 dementia research priorities

The Alzheimer Society Research Program will use these results to help bring the voices of Canadians affected by dementia into the research agenda. These priorities will also be shared with researchers and other research-funding organizations in hopes of stimulating more research in these areas.

The Canadian Dementia Priority Setting Partnership was funded by the Alzheimer Society Research Program as part of the Alzheimer Society’s commitment to the Canadian Consortium on Neurodegeneration in Aging (CCNA). Special thanks to our Steering Group and partner organizations for their involvement and assistance in the study.


ANNONCE DES DIX PRIORITÉS DE RECHERCHE SUR LES MALADIES COGNITIVES AU CANADA

researcher
Par les Dres Katherine McGilton et Jennifer Bethell

Au cours de la dernière année, nous avons demandé aux Canadiens touchés par une maladie cognitive, soit personnellement ou dans le cadre de leur travail, de faire part de leurs questions sans réponses sur la vie avec une maladie cognitive, la prévention, le traitement et le diagnostic. Cette étude, aussi connu sous le nom du Partenariat canadien pour l’établissement des priorités sur les maladies cognitives, visait à identifier les priorités de recherche à l’intention des chercheurs et des organismes de financement.

Nous remercions les plus de 1 200 participants qui ont partagé leurs points de vue. Des milliers de questions ont été soumises et la liste présélectionnée a été débattu lors d’un atelier en personne qui a eu lieu à Toronto les 8 et 9 juin 2017.

Atelier du Partenariat canadien pour l’établissement des priorités sur les maladies cognitives, le 8 et 9 jun 2017 à Toronto

L’atelier a mis à contribution 28 participants de tout le Canada, dont des personnes atteintes d’une maladie cognitive, des aidants familiaux, des fournisseurs de soins de santé et de services sociaux, et des membres d’organisations qui représentent des personnes atteintes d’une maladie cognitive. Les participants ont discuté au sein de petites équipes et en commun de chacune des questions afin de décider ce qui est important pour eux.

Voici les 10 priorités de recherche les plus importantes selon les Canadiens touchés par une maladie cognitive :

Priorités de recherche sur les maladies cognitives

Le Programme de recherche de la Société Alzheimer utilisera ces résultats pour faire entendre la voix des Canadiens touchés par les maladies cognitives dans les futures décisions en ce qui a trait à la recherche. Ces priorités seront également transmises aux chercheurs et aux autres organismes de financement dans l’espoir de stimuler la recherche dans ces domaines de prédilection.

Le Partenariat canadien pour l’établissement des priorités sur les maladies cognitives a été financé par le Programme de recherche de la Société Alzheimer dans le cadre de son engagement envers le Consortium canadien en neurodégénérescence associée au vieillissement (CCNV). Nous remercions tout particulièrement notre groupe d’orientation et les organisations partenaires pour leur participation et contribution à cette etude.

Ontario Achieves a Fully-Funded Dementia Strategy in the 2017 Budget!

Ontario Achieves a Fully-Funded Dementia Strategy in the 2017 Budget!

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.

Ontario Dementia Strategy at Parliament Hill

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.

It’s not always Alzheimer’s: One couple’s story of getting the ‘right’ diagnosis

It’s not always Alzheimer’s: One couple’s story of getting the ‘right’ diagnosis

David, a kind, quiet and intelligent man, connected to his family, with lots of friends, and very active in his community, started to become withdrawn and apathetic. His wife Wendy knew something wasn’t quite right.

The Hughes sought help early, but much time passed before they found out that David has Lewy body dementia.

Wendy became an advocate for her life partner. David was initially diagnosed with Parkinson’s and Alzheimer’s disease. As she did more research, she wondered about the symptoms. David’s memory loss fluctuated, rather than declined. And what Wendy noticed most was not so much memory loss, but that his personality had changed significantly.

After several years of persistence, David was finally diagnosed with Lewy body dementia.

Their story is a reminder that getting a diagnosis can be a long and uncertain process. Know the symptoms of dementia. Get help as soon as possible. And play an active role in seeking out the best health care options for you and your family.

David’s new status came as somewhat of a relief for the couple and Wendy continues to learn as much as she can about Lewy body. Now they have access to the right treatments and support, and she and David can get on with their lives.

“You can’t do this on your own, and I’ve realized it’s perfectly okay to ask for help,” says Wendy. She has reached out to her local Alzheimer Society (Hamilton Halton) and made a point to seek out new friends. Socializing gives her a much-needed break and allows her to better care for David.

Each year 25,000 Canadians are diagnosed with dementia. Wendy believes everyone needs to learn more about Alzheimer’s and other dementias-“awareness can only lead to better understanding and acceptance of this disease.”

This January, you too can make a difference. It’s not just their disease. It’s ours too. #InItForAlz

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Il NE S’AGIT PAS TOUJOURS DE L’ALZHEIMER : L’HISTOIRE D’UN COUPLE EN QUÊTE DU « BON » DIAGNOSTIC

Wendy & David Hughes
David est un homme sympathique, calme et intelligent. Il a toujours été attaché à sa famille et fidèle à ses amis. Lui qui était si actif socialement, il a commencé à devenir renfermé et apathique. Sa femme, Wendy, a su que quelque chose n’allait pas.

Les Hughes ont rapidement été cherchés de l’aide, mais beaucoup de temps s’est écoulé avant de découvrir que David était atteint de la maladie à corps de Lewy.

Wendy a pris fait et cause pour son compagnon de vie. David a tout d’abord reçu un diagnostic de Parkinson et de maladie d’Alzheimer. Au fil de ses recherches, Wendy a commencé à douter. La mémoire de David subissait des fluctuations plutôt qu’un déclin. Mais, par-dessus tout, ce n’était pas tant sa mémoire qui était en cause, mais sa personnalité qui avait énormément changé.

Après plusieurs années d’attente, la maladie à corps de Lewy a finalement été diagnostiquée à David.

Leur histoire nous rappelle que le diagnostic est parfois établi à la suite d’un processus long et incertain. Informez-vous sur les symptômes des maladies cognitives. Obtenez de l’aide aussitôt que possible. Et jouez un rôle actif dans la recherche des meilleures options de soins de santé pour vous et votre famille.

Le couple a accueilli avec un certain soulagement le nouveau statut de David. Pour sa part, Wendy continue de se renseigner le plus possible sur la maladie à corps de Lewy. Ils ont maintenant accès à des traitements adéquats et à du soutien, et ils peuvent poursuivre leur vie.

« Vous ne pouvez pas tout faire par vous-même et j’ai réalisé qu’il est parfaitement acceptable de demander de l’aide », déclare Wendy. Elle a communiqué avec sa Société Alzheimer locale (Hamilton Halton) et s’est promis de se faire de nouveaux amis. Le fait de socialiser lui donne le répit dont elle a tant besoin et lui permet de mieux prendre soin de David.

Chaque année 25 000 Canadiens reçoivent un diagnostic de maladie cognitive. Wendy croit que tout le monde devrait s’informer sur la maladie d’Alzheimer et les maladies apparentées. « Être bien renseigné nous aide à mieux comprendre et à accepter ces maladies. »

En janvier, vous pouvez vous aussi apporter votre contribution. Parce que ces maladies ne concernent pas seulement les personnes atteintes, elles nous concernent tous. #TousContreAlz.

Research Video Series: Introducing Stephanie Chamberlain

Research Video Series: Introducing Stephanie Chamberlain


Trained as a personal support worker in long-term care, Stephanie Chamberlain is currently pursuing her PhD at the University of Alberta. There, she is assessing the impact of court-appointed public guardianship on the health and care needs of long-term care residents. Stephanie is the Alzheimer Society Research Program’s first Revera Scholar.

It is essential that we improve quality of life and quality of care to those with Alzheimer’s disease and dementia because how we treat a life that has been lived is reflective of our essential humanity.
-Stephanie Chamberlain

Stephanie Chamberlain

Revera Scholar Doctoral Award in Alzheimer’s disease (Quality of Life) – $66,000
Project: Unrepresented older adults: The impact of public guardianship on resident health and care needs in long-term care

Read about more of our grants and awards recipients here.

Navigating the health-care system

Navigating the health-care system

I’ve been around Alzheimer’s all of my adult life. When I was 18, my grandmother was diagnosed with the disease. She died when I was 25. My grandfather was diagnosed when I was 28. He was gone by the time I was 40. My mother had already been diagnosed by then, and was gone by the time I was 53. It was then that I began my mission to create Alzlive, a media platform specifically designed for the unpaid family caregivers of people living with dementia.

Two years ago I found myself at a breakfast meeting with the head of gerontology at one of the larger hospitals in Toronto.

I was telling him about the idea behind the Alzlive initiative. At some point during the discussion, the issue of navigating the health-care system came up. He even mentioned how one of his associates had struggled with our health-care system as she was dealing with two aging parents.

If a health-care insider is having a tough time, imagine how the rest of us might feel!

As wonderful as our universal system is, it’s not perfect. Needs are growing as budgets are shrinking. More and more, the average citizen is becoming their own advocate in order to ensure that they, or their friends and family members, receive adequate care. It’s up to each of us to gain control because this is, in many cases, a matter of life and death.

When I told them about my breakfast meeting, the team at Alzlive decided to develop an eight-part series covering issues related to dealing with Alzheimer’s and other dementias. Here’s our message: figure out what questions to ask, ask them, and get answers as quickly as possible.

The series is also accompanied by videos. Watch two journalists tell their story of how they unearthed answers to many health-care questions. Available on our YouTube channel, the videos are divided into smaller so that you can find answers to specific questions, in fact 40 questions regarding the health-care system in Canada!

The series doesn’t have all the answers, but it will give you a good start on your journey.

We sincerely hope this helps.

All the best,

KelsoDave Kelso

Founder and publisher of Alzlive