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People like Margaret are more than just a number.

People like Margaret are more than just a number.

Did you know that of the 564,000 Canadians with dementia, 60% will go missing or become lost at some point? These men and women are more than just a number.

And so are you. You have the power to be the one who makes an impact.

By making a donation today, you can help fund dementia research initiatives and support vital programs for people with dementia and their families. With your support, we can help people like Margaret and her son David.

Here is Margaret’s story:

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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.

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.

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

Living well…right to the end

Living well…right to the end

May 7 – 13, 2017 is National Hospice Palliative Care Week. Mary Schulz, Director of Education at the Alzheimer Society of Canada discusses some of the misconceptions about palliative care and why it’s important to have conversations about end-of-life.

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Is it time to move to long-term care?

Is it time to move to long-term care?

You survived the holidays and you’re now getting back into your regular routine. For many people, the holidays are a time to get together with friends and relatives that you haven’t seen in a while. As joyful as these gatherings can be, they can also bring new worries. You may have noticed that your father seems more forgetful.  Perhaps your aunt’s dementia seems to be getting worse.  Or, a dear friend may have seemed frailer than you remembered.

We try to care for relatives and friends in our own homes for as long as possible.  But when a person has dementia, this can be especially challenging. Even families who are well resourced and living close to each other often struggle to support someone who needs a lot of care at home until the end of life.

As difficult as it is, moving to a long-term care home is more the norm than the exception for families of someone with dementia. Research shows that 57% of seniors living in a residential care home have Alzheimer’s disease and/or another form of dementia. And, 70% of people with dementia will eventually die in a nursing home.

At the Alzheimer Society, people who have dementia often tell us they worry about someday moving into long-term care.  Their families tell us that it can be the hardest decision they’ll ever make:  “How will I know it is time?” “What about the promises we made to care for each other until the end?”  “How do I choose a home?” “How much will it cost?” “Will my partner get the care she needs?”

That’s why the Alzheimer Society has created a new series of checklists to help families know what to ask and look for when choosing a long-term care home, and how to adjust to the transition. These come in four easy-to-use brochures with lots of practical tips:

  • Considering the move to a long-term care home
  • Preparing for a move
  • Handling moving day, and
  • Adjusting after a move

You can download these free resources in English at www.alzheimer.ca/longtermcare and in French at www.alzheimer.ca/soinsdelongueduree from the Alzheimer Society of Canada’s website.

You can also get printed copies from your local Alzheimer Society. To find the Alzheimer Society closest to you, please visit: www.alzheimer.ca/en/provincial-office-directory or call toll free: 1-800-616-8816.

‘We have so much to learn from our grandparents’: A teen’s perspective on Alzheimer’s

‘We have so much to learn from our grandparents’: A teen’s perspective on Alzheimer’s

Marilyn Lemay loved the outdoors and would spend every waking moment there. Inherently creative, she crafted, embroidered, quilted and painted everything in sight. If you stand still for more than a moment, her 17-year-old granddaughter Deborah jokes, Marilyn just might paint you.

Some of that changed eight years ago, when Marilyn was diagnosed with Alzheimer’s disease. Deborah’s grandfather Ron moved from their beloved Elliot Lake home to be closer to Deborah’s mother and family. Managing Marilyn’s care himself wasn’t an option. He knew he would need to rely on a close family network.

Marilyn Lemay
Marilyn and Ron Lemay

Deborah loves being closer to her grandmother. She still goes to her with questions about nature and for advice about life. While Marilyn’s memory isn’t what it used to be, she still has a wealth of knowledge to share. And the two of them have joined an inter-generational choir started by the Alzheimer Society London and Middlesex.

“About 15 to 20 high school students get together with seniors living with Alzheimer’s disease and we sing old, war-time songs,” says Deborah. Marilyn loves this choir. It reminds her of her childhood when her mother and aunts would sing and dance in her home.

Deborah loves hanging out with her grandmother, whether they’re walking, having tea parties, or watching episodes of I Love Lucy. There’s so much hope, wisdom, and joy in her grandmother, and Deborah wishes more young people could see that. The chance to connect across generations, to learn from each other and spend valuable time together, is really important.

When Deborah describes her grandparents, her voice lights up: her grandfather is still so in love with her grandmother, even though they met at 13 (63 years ago!). Ron takes Marilyn out on dates, will dance with her whenever music comes on, and the two of them tease each other still. Marilyn is still Marilyn, in other words, and she still lives with deep joy.

Family support systems are an integral part of living with Alzheimer’s and other dementias. And those systems themselves need support with resources, groups, and hope for a cure. Please donate to the Alzheimer Society, so that families like Deborah’s have more time to walk, and sing and laugh. Because it’s not just their disease. It’s ours too. #InItforAlz

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NOUS AVONS TELLEMENT DE CHOSES À APPRENDRE DE NOS GRANDS-PARENTS : PERSPECTIVE D’UNE ADO SUR L’ALZHEIMER

deborah-dravis
Marilyn Lemay adorait la vie en plein air et passait le plus clair de son temps à l’extérieur. D’une nature créative, elle faisait de l’artisanat, de la broderie, des courtepointes et peignait tout ce qu’elle voyait. Si vous restiez juste un moment sans bouger, elle vous prenait comme modèle pour peindre, raconte en riant sa petite-fille Deborah, 17 ans.

Il y a huit ans, la maladie d’Alzheimer a été diagnostiquée à Marilyn et les choses ont changé. Les grands-parents de Deborah ont quitté leur domicile du lac Elliot, qu’ils aimaient tant, pour être plus près de la mère de Deborah et de la famille. Le grand-père ne pouvait prendre soin de Marylin par lui-même et il savait qu’il pouvait compter sur le réseau tissé serré de ses proches.

Deborah adore être à proximité de sa grand-mère. Elle lui pose plein de questions sur la nature et lui demande des conseils de vie. Même si la mémoire de Marilyn n’est plus ce qu’elle était, elle possède toujours de précieuses connaissances à transmettre. Deborah et sa grand-mère font maintenant partie d’une chorale intergénérationnelle mise sur pied par la Société Alzheimer de London et Middlesex.

« Environ 15 à 20 élèves du secondaire se réunissent avec les personnes âgées atteintes de la maladie d’Alzheimer et nous chantons de vieilles chansons du temps de la guerre », poursuit Deborah. Marilyn adore faire partie de ce chœur. Cela lui rappelle son enfance lorsque sa mère et ses tantes chantaient et dansaient à la maison.

Deborah aime beaucoup passer du temps avec sa grand-mère, que ce soit pour faire une promenade, prendre le thé ou regarder des épisodes de « I Love Lucy ». Sa grand-mère est tellement pleine d’espoir, de sagesse et de joie, et Deborah souhaiterait que plus de jeunes puissent profiter de son expérience de vie. La possibilité d’établir des liens entre les générations, d’apprendre les uns des autres et de passer de précieux moments ensemble est vraiment importante.

Lorsque Deborah décrit ses grands-parents, sa voix s’illumine : son grand-père est toujours amoureux de sa grand-mère, même s’ils se sont rencontrés à l’âge de 13 ans (il y a 63 ans de cela!). Il invite Marilyn à sortir, danse avec elle au son de la musique, et les deux adorent toujours se taquiner. En d’autres mots, Marilyn est toujours Marilyn, et elle continue de vivre le cœur rempli de joie.

Le réseau de soutien familial fait partie intégrante de la vie avec la maladie d’Alzheimer ou avec une autre maladie cognitive. Mais il faut appuyer ce réseau avec des ressources, des groupes d’entraide et l’espoir de guérison. Pour aider les familles comme celle de Deborah à disposer de plus de temps pour faire des promenades, chanter et rire, nous vous invitons à faire un don à la Société Alzheimer. Parce que ces maladies ne concernent pas seulement les personnes atteintes, elles nous concernent tous. #TousContreAlz.

Dementia under 65: Where do they fit in?

Dementia under 65: Where do they fit in?

It was love at first sight when Sandy met Doug. They had both ended long marriages. They shared a passion for work, a love of travel, and had compatible plans for retirement. They clicked instantly.

The McLean’s married two years later and were in the midst of living the lives they’d dreamed of when Doug, a top executive, lost his job because of increased anxiety and diminishing cognitive abilities.

Things didn’t get better. Doug became depressed and delusional. He could no longer tell time or do math, and he struggled with his memory.

sandy-mclean2So they began looking for answers. Over the next three years, Doug and Sandy went to doctor after doctor without a definitive diagnosis. It wasn’t until a second neurological test that Doug was diagnosed with Lewy body dementia and immediately put on the right medications. Finally, his symptoms were manageable and the McLean’s were able to fulfill some of their travel dreams.

At 60, Doug is fit and physically active, and is keen to continue life to the fullest. Being active is good for him, but it’s a challenge for Sandy. Doug needs safe, non-judgmental environments, and many activity programs for people with dementia are for seniors 65 and older. Doug doesn’t feel like he fits in.

Sandy is his 24/7 caregiver and advocate. She makes sure Doug keeps busy and plans all of his activities. But that doesn’t leave much time for herself. And, that dream of moving into a house they built outside of their city has been gently let go.

The Alzheimer Society of Manitoba has been a lifeline for Sandy and Doug, offering activities, resources and support services. But we can do so much more.

Donate today so that we can better support caregivers like Sandy and fund vital research to eliminate this disease and its impact on Canadians like Doug. Because it’s not just their disease. It’s ours too. #InItforAlz

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