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Research Video Series: Introducing Danielle Alcock

Research Video Series: Introducing Danielle Alcock


Danielle’s personal experience inspired her to pursue research in the field of continuity of care. She will assess existing services through the use of oral narratives by female, Indigenous caregivers for a loved one diagnosed with alcohol-related dementia and will make recommendations based on their experience.

Coming from a First Nations family, it was difficult to navigate the healthcare system dealing with jurisdictional barriers, stigma and a lack of resources. As a caregiver, there are no existing supports for alcohol-related dementia that are culturally safe.
-Danielle Alcock

Danielle Alcock

Alzheimer Society Research Program Quality of Life Grant Recipient in Alzheimer’s disease and dementia – $66,000
Project: Oral narratives of female Indigenous caregivers for loved ones diagnosed with alcohol-related dementia.

Read about more of our grant and award recipients here.

What’s love got to do with Alzheimer’s? A lot

What’s love got to do with Alzheimer’s? A lot

By Alex Westman

Mr. and Mrs. Alex and Donna Westman

My wife Donna and I met when we were just teenagers—she was 18, I was 16. Despite our youth, we understood early on that we had a deep connection. It was an amazing thing, really, and still is. There was magic in her and she saw something in me. I had a reputation as a bit of a scrapper, but she soon took care of that.

These days, I’m almost respectable. I’m a three-term municipal councillor in the Township of Lucan Biddulph, Ontario, and a 30-year veteran of the fire department. She made me who I am, and all these years later, Donna is still the love of my life.

Why am I telling you this? Because I want you to know that the love we share is the armour we wear when things get tough. And in 2009, things got really tough.

Mr. and Mrs. Alex and Donna Westman

That was the year she was diagnosed with Alzheimer’s disease. She was 47. I remember sitting beside her in the chair in the doctor’s office. I looked at her, and she looked at me, and I said, “we’ll get through this together.” And we have.

We’ve had help, of course. Donna’s sister Gale and our daughter Sara-Beth have been nothing short of amazing; their love for Donna shines through in everything they do for her.

My point, as I’m sure you are beginning to see, is that you can’t do this without love. This disease is big. It has teeth, and horns and claws. If we didn’t have love, this disease would destroy us both.

Now I don’t want you to think I live in some fantasy land. We’ve had our ups and downs. We’ve gone to marriage counselling. There were times we didn’t particularly like each other. But we always loved each other and we always knew we wanted to make it work.

Mr. and Mrs. Alex and Donna Westman

I remember vividly the spring following Donna’s diagnosis when we planted forget-me-not flowers in her garden. The garden has always been a special place where she tended to each plant as if it were the only one. The year before, we had planted daffodils for my parents who died of cancer. This spring, we wanted forget-me-nots for Donna.

When we finished, we stood back to admire our work. She put her head on my shoulder and I said, “It’s OK, sweetie. I’ll remember our life together for both of us.”

Mr. and Mrs. Alex and Donna Westman

Canada to become 30th country with national dementia strategy

Canada to become 30th country with national dementia strategy

The Alzheimer Society of Canada celebrates the passage of Bill C-233, An Act respecting a national strategy for Alzheimer’s disease and other dementias. Canada will now become the latest country to develop a national dementia strategy to address the overwhelming scale, impact and cost of dementia.

“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.

To learn more, visit www.alzheimer.ca/advocacy.


LE CANADA VA DEVENIR LE TRENTIÈME PAYS DOTÉ D’UNE STRATÉGIE NATIONALE SUR LES MALADIES COGNITIVES

Parliament of Canada

La Société Alzheimer du Canada salue l’adoption du Projet de loi C-233, la Loi concernant une stratégie nationale sur la maladie d’Alzheimer et d’autres démences. Le Canada va maintenant devenir le dernier pays à mettre sur pied une stratégie nationale sur les maladies cognitives pour répondre à l’ampleur, l’impact et au coût de ces maladies.

« 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.

Pour en apprendre davantage, rendez-vous à www.alzheimer.ca/defensedesinterets.

Racing for memories

Racing for memories

Recently, my family has joined the unfortunate ranks of those who have been impacted by Alzheimer’s disease. My mom started showing early signs of the disease a few years ago, and it has slowly and stubbornly progressed ever since. The toll that Alzheimer’s is taking on my mom is obvious and devastating. Less obvious, but just as significant, is the impact it is having on my dad. As my mom’s primary caregiver, it’s been said that my dad must ride the world’s tallest, fastest and scariest emotional roller coaster each and every day. Sadly, in my observation, this is absolutely true.

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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:

  1. What is the impact of stigmas associated with dementia and mental health issues on persons with dementia and their families? What are effective ways of reducing the stigma experienced by persons with dementia and their friends, family and caregivers/care partners?
  2. What can be done to support emotional wellbeing, including maintaining a sense of dignity, for persons with dementia?
  3. Among persons with dementia, what is the impact of early treatment on quality of life, disease progression and cognitive symptoms?
  4. How can the health system build and sustain the capacity to meet the health and social care needs of persons with dementia and their friend or family caregivers/care partners?
  5. What services, supports and therapies for friend or family caregivers/care partners of persons with dementia would improve or maintain health, wellbeing and quality of life for persons with dementia and their friends or family caregivers/care partners?
  6. After dementia is diagnosed, what would help persons with dementia and their friends, family and caregivers/care partners get the information, treatment, care and services they may need?
  7. What dementia-related skills and knowledge should health and social care providers have? What are effective ways of providing them with these skills and this knowledge? How can the number of health and social care providers who have these skills and this knowledge be increased?
  8. What enables the creation of dementia-friendly communities? What impact do dementia-friendly initiatives have on persons with dementia and their friends, families and caregivers/care partners?
  9. What would ensure implementation and sustainability of best practices for dementia care within and across health care settings, including effective approaches to providing person-centred care?
  10. Among persons with dementia, what are the effects of non-pharmacological treatments compared to pharmacological treatments on behavioural and psychological symptoms of dementia? Can non-pharmacological treatments replace, reduce or be used in conjunction with pharmacological treatments for managing behavioural and psychological symptoms of dementia?

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 :

  1. Quelles sont les répercussions de la stigmatisation entourant les maladies cognitives et la santé mentale sur les personnes atteintes d’une maladie cognitive et leur famille? Quels sont les moyens efficaces de réduire la stigmatisation vécue par les personnes atteintes d’une maladie cognitive, leurs amis, famille et aidants/partenaires des soins?
  2. Que peut-on faire pour soutenir le bien-être émotionnel, notamment le sentiment de dignité, des personnes atteintes d’une maladie cognitive?
  3. Quelles sont les conséquences du traitement précoce sur la qualité de vie, la progression de la maladie et les symptômes des personnes atteintes d’une maladie cognitive?
  4. Comment le système de santé peut-il développer et maintenir ses capacités de manière à répondre aux besoins des personnes atteintes d’une maladie cognitive et de leurs amis ou aidants familiaux/partenaires de soins en matière de soins de santé et de services sociaux?
  5. Quels services, appuis et thérapies à l’intention des amis et aidants familiaux/partenaires de soins des personnes atteintes d’une maladie cognitive permettent d’améliorer ou de maintenir la santé, le bien-être et la qualité de vie des personnes atteintes d’une maladie cognitive et de leurs amis, ou famille et aidants naturels/partenaires de soins?
  6. Une fois la maladie cognitive diagnostiquée, qu’est-ce qui aiderait les personnes atteintes et leurs amis, famille et aidants/partenaires de soins à obtenir l’information, les traitements, les soins et les services dont ils pourraient avoir besoin?
  7. Quelles compétences et connaissances devraient posséder les fournisseurs de soins de santé et de services sociaux dans le domaine des maladies cognitives? Quels moyens efficaces pourrait-on utiliser pour leur transmettre ces compétences et connaissances? Comment augmenter le nombre de fournisseurs de soins de santé et de services sociaux qui possèdent ces compétences et connaissances?
  8. Qu’est-ce qui facilite la création de collectivités amies des personnes atteintes d’une maladie cognitive? Quelles sont les conséquences de ces collectivités sur les personnes atteintes d’une maladie cognitive et leurs amis, famille et aidants/partenaires de soins?
  9. Qu’est-ce qui assurerait la mise en application et la viabilité des meilleures pratiques en matière de soins dans les établissements qui accueillent des personnes atteintes d’une maladie cognitive, y compris en ce qui a trait aux soins centrés sur la personne?
  10. Quels sont les effets des traitements non pharmacologiques à comparer aux traitements pharmacologiques sur les symptômes comportementaux et psychologiques des personnes atteintes d’une maladie cognitive? Les traitements non pharmacologiques peuvent-ils remplacer, réduire ou être utilisés en association avec les traitements pharmacologiques pour la gestion des symptômes comportementaux et psychologiques des 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.

Hope in the face of Alzheimer’s

Hope in the face of Alzheimer’s

One might think that having a disease with no cure wouldn’t leave a person with much hope to draw on. The truth is, if you’d asked me how I felt about the future after I was first diagnosed with Alzheimer’s disease, my answer would have been far from ‘hopeful.’ Then, one day, that changed.

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Getting a dementia diagnosis – where do you start?

Getting a dementia diagnosis – where do you start?

It can start with something simple, like having trouble following your favourite recipe, or putting your car keys in the fridge. Maybe you’ve noticed small changes in your memory that are affecting how you do things day-to-day.

If you can’t quite remember things that should be straightforward for you, or if you notice changes in your mood or ability to communicate, make an appointment to see your family doctor right away.

Diagnosing dementia is a complex and difficult process. The first thing your doctor will do is try to rule out if it’s a treatable condition, like depression or even an infection.

By finding out what is causing your symptoms, you can get the right kind of care, support and access to treatments as early as possible.

Be prepared to start the conversation with your doctor:

  • Take the time to review the 10 warning signs of dementia. This is important because dementia is not a normal part of aging, nor is memory loss the only symptom.
  • Jot down the signs you’ve been noticing in yourself. When did these start? Have they changed over time? This information will keep your conversation focused.
  • Don’t be afraid to ask questions! Ask your doctor if your symptoms could be caused by another health condition.
  • Be sure to let him or her know about your medical history, including any medications you’re currently taking.
  • Ask your doctor to explain what tests you’ll need and how long these will take.
  • Will you need to see a specialist or a series of specialists? How will you need to prepare for these visits?

For more tips on getting ready for your doctor’s visit, download our Getting a diagnosis toolkit. It offers a whole list of questions to ask as well as detailed information about the warning signs and what you can expect during the diagnosis process.

And, if you’re concerned about someone else, we encourage you to pass our toolkit along.


Getting an early diagnosis helps you and your family take control of the situation, plan for future and live as well as possible with dementia. Learn more about the benefits of an early diagnosis

Research Video Series: Introducing Sharon Koehn

Research Video Series: Introducing Sharon Koehn

Too often, immigrants in Canada don’t receive the help and support they need because of barriers like language and culture.

That’s why Dr. Sharon Koehn from Simon Fraser University, British Columbia, is on a mission to identify ways to foster relationships of trust among immigrants affected by dementia and encourage them to reach out to multicultural agencies.

Living with Alzheimer’s disease and other dementias is hard enough; it’s essential that we ensure that we don’t make it even harder by not paying attention to how and if people access appropriate information and care.
-Dr. Sharon Koehn

Dr. Sharon Koehn

Quality of Life Grant Recipient in Alzheimer’s disease and dementia – $119,623
Project: Building trust to facilitate access to dementia care for immigrant older adults: the role of the multicultural services sector.

Read about more of our grant and award recipients here.

How do you want to leave your financial legacy?

How do you want to leave your financial legacy?

Planning for the future is important for everyone, but it’s especially important if you or someone you care about has dementia. That’s why we’ve partnered with RBC Wealth Management Estate & Trust Services to bring you a series of informative blogs about estate planning.

In this blog, Leanne Kaufman, Head of RBC Estate & Trust Services, asks ‘What kind of financial legacy do you want to leave behind?’

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