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‘We’re not running and hiding’: Couple confronts possibility of dementia head-on

‘We’re not running and hiding’: Couple confronts possibility of dementia head-on

When you’ve seen the effects of dementia before, noticing even minor changes in your cognitive abilities can be alarming. Both Yvon and Susanne lost their mothers to Alzheimer’s, so they’re no strangers to the disease.

When Susanne began to show small signs of forgetfulness a few months ago, they immediately went to their doctor. After a series of tests, Susanne was diagnosed with Mild Cognitive Impairment (MCI), which can be—although not always—a precursor to dementia. Susanne was given appropriate medication and is showing signs of improvement. MCI is “just barely on the scale” of neurological impairment, but because of their shared family histories of Alzheimer’s, the couple is not taking any chances.

Yvon has made changes in his life now that he’s supporting a partner with MCI. He’s learning different ways of saying and doing things, taking on new tasks, and researching as much as he can about cognitive impairments and dementias. He’s reading about the importance of nutrition, exercise and mental activities. He’s also grateful for the support of friends and neighbours.

And MCI is not their only health concern. Susanne also lives with lupus and Yvon has diabetes and glaucoma in his right eye. To help manage these multiple health concerns, Yvon and Susanne are looking for new supported living arrangements to relieve some of the stress of handling everything on their own.

They’re hopeful. Being proactive about the disease gives Yvon a sense of clarity and calmness. He encourages Susanne in the kinds of activities that keep her engaged and active – doing household finances and crosswords, knitting and reading. They’re learning everything they can about the disease and have joined a support group, one of many programs available at the Alzheimer Society of Cornwall.

“The more education people have, the better prepared they can be about what’s ahead,” says Yvon. That’s why supporting the Alzheimer Society’s work in raising awareness and funding research is so critical for couples like Yvon and Susanne. Making a donation helps. Because it’s not just their disease. It’s ours too. #InItforAlz

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« On ne peut pas se sauver de la réalité » : Un couple fait face à la possibilité de se voir confronter à la maladie d’Alzheimer

Yvon and Susanne Brazeau

Même des changements mineurs dans nos capacités cognitives peuvent nous inquiéter quand on connaît les conséquences de la maladie d’Alzheimer. Cette maladie a emporté la mère de Suzanne et celle d’Yvon. Tous deux savent très bien de quoi il en retourne.

Il y a quelques mois, Suzanne a commencé à montrer des signes de perte de mémoire. Tout de suite, elle a consulté son médecin. Après une série de tests, un diagnostic de déficit cognitif léger lui a été confirmé. Même si cela n’est pas toujours le cas, ce diagnostic pourrait être un signe avant-coureur de maladie cognitive. Suzanne prend les médicaments recommandés pas son médecin et montre maintenant des signes d’amélioration. Le déficit cognitif léger est un trouble neurologique mineur, mais, en raison de ses antécédents familiaux, Suzanne ne veut courir aucun risque.

Yvon a modifié un peu son style de vie depuis qu’il prête assistance à sa conjointe. Il apprend de nouvelles façons de dire et de faire les choses, prend en charge de nouvelles tâches, et s’informe du mieux qu’il le peut sur les questions entourant les déficiences et maladies cognitives. Ses lectures lui ont fait prendre conscience de l’importance de la nutrition, de l’exercice et des activités mentales. Ses amis et ses voisins le soutiennent et il en est très reconnaissant.

Mais ce n’est pas tout. Suzanne est également atteinte du lupus et Yvon a le diabète, en plus d’un glaucome à l’œil droit. Pour ne plus être livrés à eux-mêmes dans leur combat contre la maladie et pour évacuer un peu de stress, Yvon et Suzanne tentent actuellement de trouver des services d’aide à la vie autonome.

Par-dessus tout, ils gardent l’espoir. Grâce à son attitude proactive face à la maladie, Yvon éprouve un sentiment de clarté et de calme. Il encourage Suzanne à rester active en participant aux finances du ménage et en faisant des mots croisés, du tricot et de la lecture. Ils apprennent tout ce qu’ils peuvent sur la maladie et font maintenant partie d’un groupe de soutien, qui est l’un des nombreux services offerts par la Société Alzheimer de Cornwall.

« Plus on s’informe, mieux on se prépare pour l’avenir », déclare Yvon. C’est pourquoi il est si important de soutenir les initiatives de sensibilisation du public et de financement de la recherche de la Société Alzheimer. Votre contribution est importante parce que les maladies cognitives ne concernent pas seulement les personnes atteintes. Elles nous concernent tous. #TousContreAlzheimer.

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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.

At 21, Alzheimer’s is the last thing on your mind – until your mom gets it

At 21, Alzheimer’s is the last thing on your mind – until your mom gets it

It’s common to think that dementia affects only particular demographics—like seniors—but Kathryn Fudurich’s story reminds us of how this disease can have a huge impact on anyone’s life.

When Kathryn was 21 and in her last year of university, her mom, Patricia, was diagnosed with young onset dementia. The signs had been there for a while. Patricia had become anxious about everyday tasks like driving, began buying household items in multiples and struggled professionally. At age 55, she could no longer keep her job or live alone. So Kathryn and other family members stepped in.

Kathryn moved back home after graduation and put her life on hold to be a part of her mother’s care. She felt very much alone in this situation at such a young age, so she reached out to the Alzheimer Society of Toronto. Later she discovered some of her own friends were also going through this experience. What Kathryn really needed was to talk to someone who had been there, who knew what it means to live with an irreversible diagnosis.

Kathryn continues to share the responsibility of care with her dad and siblings. But it doesn’t get easier. Caring for someone with dementia is incredibly time-consuming and emotional, because it’s a “living disease,” not something you just “get over.” Kathryn describes feeling the loss of her mom every day, and struggles with the need to be there—or close by—even eight years later.

Through mutual friends, Kathryn met Carolyn Poirier, whose mother also has Alzheimer’s. She joined Carolyn and her friends in founding Memory Ball as a way of raising funds for people living with dementia. “Stepping out of the caregiving role, even briefly, is really important for caregivers,” says Kathryn.

But what’s even more important? When friends step into your world. If you know someone living with Alzheimer’s disease or dementia, spend an afternoon or evening with them. Bring them a hot meal, and see first-hand what their life is like.

There are so many ways to support families like Kathryn’s, so many ways to get involved with the people in your community affected by this disease. You can also donate to the Alzheimer Society, so that we can continue to offer resources and fund research. Because it’s not just their disease. It’s ours too. #InItforAlz

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À 21 ANS, LA MALADIE D’ALZHEIMER EST LE DERNIER DE VOS SOUCIS, JUSQU’À CE QUE VOTRE MÈRE EN SOIT ATTEINTE

kathryn fudurich
On pense souvent que la maladie d’Alzheimer affecte seulement une certaine tranche de la population, à savoir les personnes âgées. Mais l’histoire de Kathryn Fudurich nous rappelle que cette maladie peut avoir de graves répercussions sur la vie de tous.

À l’âge de 21 ans, alors que Kathryn terminait sa dernière année à l’université, la maladie d’Alzheimer à début précoce a été diagnostiquée à sa mère, Patricia. Certains signes s’étaient déjà manifestés depuis quelque temps. Les tâches de la vie quotidienne, comme la conduite automobile, rendaient Patricia très nerveuse. Elle achetait les mêmes produits ménagers à répétition et éprouvait des difficultés dans sa vie professionnelle. À l’âge de 55 ans, elle n’a plus été en mesure de travailler ou de vivre seule. Kathryn et les autres membres de sa famille sont donc intervenus.

Après avoir obtenu son diplôme, Kathryn est rentrée au bercail et a mis sa vie de côté pour prendre soin de sa mère. Elle se sentait très seule dans cette situation à un si jeune âge, et elle a donc communiqué avec la Société Alzheimer de Toronto. Un peu plus tard, elle a découvert que certaines de ses propres amies vivaient la même situation. Ce dont Kathryn avait vraiment besoin, c’était de parler à quelqu’un qui avait vécu la même expérience et qui savait ce que cela voulait dire de vivre avec une maladie irréversible.

Kathryn continue aujourd’hui de partager la responsabilité des soins de sa mère avec son père et ses frères et sœurs. Mais la situation n’est pas facile. Prendre soin d’une personne atteinte d’une maladie cognitive demande beaucoup de temps et d’énergie psychique parce qu’il s’agit d’une maladie évolutive qu’on ne surmonte pas. Kathryn ressent tous les jours ce sentiment de vide devant la maladie de sa mère et essaie d’être là pour elle à ses côtés, ou le plus près possible, même huit ans plus tard.

Par l’entremise d’amis communs, Kathryn a rencontré Carolyn Poirier, dont la mère est également atteinte de l’Alzheimer. En compagnie de Carolyn et de ses amis, elle a participé à la fondation de « Memory Ball » afin de recueillir des fonds pour les personnes atteintes d’une maladie cognitive. « Le fait de sortir de son rôle d’aidant, même brièvement, est vraiment important », déclare Kathryn.

Mais ce qu’il y a de plus important encore, c’est lorsque des amis vous rendent visite. Si vous connaissez une personne atteinte de la maladie d’Alzheimer ou d’une autre maladie cognitive, allez passer un après-midi ou une soirée avec elle. Apportez-lui un repas chaud, et constatez sur place ce à quoi sa vie ressemble.

Il existe de nombreux moyens de soutenir les familles comme celle de Kathryn, et de prendre une part active à la vie des personnes touchées. Vous pouvez également faire un don à la Société Alzheimer pour lui permettre de continuer à offrir des services de soutien et du financement pour la recherche. Parce que ces maladies ne concernent pas seulement les personnes atteintes, elles nous concernent tous. #TousContreAlz.

Puzzles for Good supports the Alzheimer Society

Puzzles for Good supports the Alzheimer Society

By: Kirsten Wreggitt, Chief Puzzle Constructor at Puzzles for Good

My Grandma made me pancakes in the shape of anything I could imagine – giraffes, Mickey Mouse, unicorns, and of course full moons. Those childhood breakfasts are cherished memories of family gathered together with Grandma at the center in her frilly apron. I remember that she laughed easily, always had a lap for you to sit in, and that she loved frogs. Of course, Kermit the Frog was her favourite, but I remember he was among many friends in the room I slept in at her house. That bedroom was filled with frog figurines on shelves covering each wall. There was no doubt that she was a fun loving person; a pretty perfect Grandma and a wonderful wife and mother too.

That is how I want to remember her, spatula in hand laughing with us at breakfast. Unfortunately, we also had to witness a slow and painful decline until we lost her to Alzheimer’s. At first she simply misplaced things or forgot a meeting, but over time it progressed to forgetting people, forgetting how to care for herself, and finally forgetting who she was. Such a terrible loss.

Many of us joke about forgetfulness and old age. I wish Alzheimer’s stopped with a little forgetfulness. The final stages of Alzheimer’s are no joke and it would be a wonderful thing if no other families had to witness or experience this loss of a loved one.

I am the owner of Puzzles for Good. It’s a social enterprise that creates word puzzles and shares the proceeds with organizations doing great work in the world.

I hold the memory of my Grandma dear to my heart and so I picked the Alzheimer Society of Canada as the recipient for this month’s puzzle pack.

Puzzles are great for brain health and are also so much fun! Get your Memory Puzzle Pack here.

Their memories fade, but love remains

Their memories fade, but love remains

Donate today to help find a cure.

When the doctor first told my Mom, “You have Alzheimer’s disease,” I was numb. There I was, only 30 years old, with a newborn son and a mother whose memory was starting to fade.  I tried to Google as much as I could about the disease, but panic came the second I saw the words: There is no cure.

As hard as this is to talk about, I agreed to share my story with you because I want to see a world without Alzheimer’s disease and other dementias.

Caron & Marlene

Please make a donation today. Your holiday gift to Alzheimer Society of Ontario will help fund life-saving research focused on prevention, better treatments and, ultimately, a cure. Your contribution will also help women and men across the province that face this devastating disease by providing support programs and services.

This time of year is especially hard. I have such fond memories of our family’s special Christmas traditions but that has all changed since Alzheimer’s took hold of Mom 15 years ago.

My Mom is now in the late stages of the disease. She has forgotten how to walk and is confined to a wheelchair. She can’t remember how to chew so even eating is difficult.

Alzheimer’s disease impacts so many people. And chances are you or someone you know will be affected.

I hope you will join me in donating now to help bring hope and improve the lives of people like my mother.

Thank you,

Caron Leid
Caregiver to my mom, Marlene, since 2000

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.

We are Thankful for You!

We are Thankful for You!

Thanksgiving Fall Couple

Fall is a spectacular time of year in Ontario! The leaves begin to change and despite the air getting a bit cooler, time spent with family and friends makes it clear that this time of year is full of warmth.

Thank you!

This season of Thanksgiving we are reminded of how grateful we are for our family of supporters at Alzheimer Society of Ontario. Whether you have supported us through an event, are a monthly donor, subscribe to our blog, volunteer, have remembered us in your Will or have #RaisedAMug for Alzheimer’s – WE THANK YOU!

Your generosity helps to change the lives of 564,000 people across Ontario affected by dementia. Our province is home to world-leading researchers working to halt or treat this disease. Others are finding ways, both practical and inventive, to improve quality of life for caregivers.

Here are some of the ways you have impacted Alzheimer’s research.

Unlocking the mysteries of the brain

Since 1989, we’ve awarded more than $50 million in grants to researchers across Canada through the Alzheimer Society Research Program.

Over the duration of the program, these researchers have helped to:

  • Identify potential new drugs to slow the progress of Alzheimer’s disease
  • Develop techniques to distinguish different forms of dementia using neuroimaging, enabling more targeted treatments for people with dementia
  • Show how diet and other lifestyle choices may delay the disease
  • Develop technologies to enhance the quality of life, care and safety for people affected by the disease
  • Improve care delivery in the community and in long-term care settings

 

Meet a Researcher

Thanks to support from our donors and the Alzheimer Society Research Program, Dr. Frank Rudzicz, is currently developing artificial intelligence software to help people with dementia that experience difficulty communicating with others.

Frank Rudzicz
Pictured above: Dr. Frank Rudzicz

Dr. Rudzicz has designed voice-based software to “converse” with a person and assess their speech for this language disability and for language problems associated with memory loss. Pilot tests show it gives accurate and early diagnoses.

Changes in the brain resulting in dementia begin up to 25 years before most symptoms appear. Rudzicz thinks his software could help catch those changes early so people can get treatment at this stage.

You can learn more about his project by visiting his researcher profile or by watching his research video.

This incredible research and others like that being done by Dr. Rudzicz would not be possible without you. Thank you again for your wonderful support!

 

Sharing a cup of support

Sharing a cup of support

beans

Holly Kotowich and Penny Leclair, employees at Pullan Kammerloch Frohlinger Lawyers, have hosted Coffee Break® events at their workplace since 2007. “We host a Coffee Break event every year because we have staff and employers who deal with Alzheimer’s disease. Every year, it seems we learn somebody close to us has dealt with Alzheimer’s,” says Holly.

Coffee Break events can be hosted at your workplace, home, school or anywhere you can serve coffee. Holly says hosting a Coffee Break increases awareness about Alzheimer’s disease and other dementias in her workplace. And better yet, it’s so easy to do!

Holly and Penny take over the office’s lunch room table on their event day, and set up coffee, dainties and donation boxes. “We ask a couple people for assistance and a lot of them help with baking. We have everything set up all day, and the event just runs itself,” says Holly.

The Alzheimer Society sets you up with a Coffee Break® kit that includes posters, coasters, a donation box, event tips, coffee cup cut-outs and more. “People here love the coffee cup cut-outs that recognize their donation,” says Holly. “We stick them up on the wall, and they love to write their names on them. Kids aren’t the only ones who like that stuff!”

This fall, make your coffee count by hosting an Alzheimer Coffee Break! Visit alzheimercoffeebreak.ca

Coffee Break® brings the community together

Coffee Break® brings the community together

Verna Mowat

For the past few years, Verna Mowat has been hosting a Coffee Break® event on her family farm in the Westman region of Manitoba. Despite wind and rain, people in the community venture down the gravel road to Verna’s farm, where a smile and a warm cup of coffee are waiting for each Coffee Break guest.

“Lots of people from the community all come out – from Cypress, Glenboro, even neighbours down the road. I think we had 35 people last year,” says Verna.

Running with the mantra that a Coffee Break event can be as big or as small as you like, Verna goes all out in getting everyone involved. She makes the most out of the Coffee Break event kit (supplied by the Alzheimer Society) by encouraging people to autograph her Coffee Break poster. Many of her guests love this gesture as it gives them an opportunity to write a personal message about who they’re supporting.

Verna’s dedication is born out of her desire to help make a difference in the fight against dementia. Her mother lived with it for 19 years and her sister is currently going through the mid-stage of Alzheimer’s disease. Verna has seen the effects first hand and is concerned about the toll it takes on families.

In addition to raising money through hosting a Coffee Break event, Verna sells home-made pottery pins at craft markets in her community. Contributors like her are integral to ensuring the Alzheimer Society is able to support those affected by dementia. We thank her sincerely for everything she has done.

This fall, make your coffee count by hosting an Alzheimer Coffee Break! Visit alzheimercoffeebreak.ca