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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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You can be that one to make a difference

You can be that one to make a difference

Did you know that over 210,000 people in Ontario are living with dementia? That over 564,000 Canadians are affected by Alzheimer’s disease or dementia today? We all know, or know of, someone affected by this disease. They are our neighbours, our friends, our grandparents and our uncles. They are someone in our life, and they are more than just a number.

You can be that one to make a difference in the lives of those affected by dementia. By donating today, you can help fund research to find treatments, and even a cure, for this disease. You can help fund programs that support people with dementia and their caregivers, and help improve quality of life.

For people like Amir, your support means the world.

Here is his story:

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CarePartners has taken action for dementia!

CarePartners has taken action for dementia!

With over 200,000 people in Ontario living with dementia today, we need an Ontario dementia strategy to make sure that our communities receive the support they need. The Alzheimer Society of Ontario has led the movement to have a fully-funded dementia strategy included in the Ontario government’s 2017 budget, and we are now awaiting the upcoming announcement of the budget.

In support of our initiative, CarePartners has generously donated not only financially, but their time as well, to help build awareness and promote the importance of an Ontario Dementia Strategy. With their exceptional support, we have been able to increase awareness amongst policy makers and influencers and the need for a strategy to be included in this year’s budget.

The partnership between CarePartners and the Alzheimer Society of Ontario began with the shared value of great care for people living with dementia. CarePartners explains,

“CarePartners is committed to providing quality care for patients with a dementia diagnosis living in the community and to providing support for their families. Our partnership with the ASO (Alzheimer Society of Ontario) provides our health professionals with education and access to resources; both of these contribute greatly to ensuring that the care our staff provides is always skilled, compassionate and built on proven best practices.”
-Brittany Robins, CarePartners

To have an Ontario Dementia Strategy will be integral to help support partnerships like this, which help to make sure that people with dementia receive the best care possible.

Thanks to supporters like CarePartners, we have been able to raise awareness about the need for a dementia strategy to many members of parliament, but we need to make sure that a fully-funded strategy is incorporated in the government’s budget. Be sure to write to your MPP today and tell them that we need a fully-funded dementia strategy!

For more information about CarePartners and the services they offer, visit their website at www.carepartners.ca

‘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.

1 million Dementia Friends wanted. Are you in?

1 million Dementia Friends wanted. Are you in?

Living with dementia comes with good days and bad but the most challenging part is the stigma behind it. Canadians with dementia often tell us they feel labelled, dismissed and cut off from friends – even their families.

By reducing stigma and misinformation, we can help them stay connected to their communities and live as well as possible.

Dementia Friends Canada is an Alzheimer Society and Government of Canada initiative to help Canadians better understand what it’s like to live with dementia and how they can help those with the disease remain active and carry on with their daily lives.

Becoming a Dementia Friend is easy and means joining other individuals and workplaces who want to create awareness and positive change.

Help shine a light on dementia. Support people in your community.
Visit www.dementiafriends.ca to get started.

Al Burridge was a true Dementia Champion

Al Burridge was a true Dementia Champion

Al-burridge-2When the Alzheimer Society of Ontario began the Champions for Dementia initiative in 2010, we were seeking to engage people with lived experience of dementia in advocacy activities with their Members of Provincial Parliament (MPP) and the Ontario government.

I remember receiving notice from the Alzheimer Society of Oxford that they had identified a perfect candidate to be their Dementia Champion – Al Burridge.

From day one, Al was a model Dementia Champion. Soon after joining, Ontario had an election. While Al was volunteering at a local fundraising and awareness event known as Coffee Break®, staff member Beth Haas remembers he had a natural ability to identify electoral candidates and talk to them about dementia. “The weather was good that day so Al and I set-up outside for a few hours during Coffee Break. Al not only recognized the candidates, even the lesser-known ones, but nabbed them to tell them about dementia and how the Alzheimer Society is advocating for improved care. He was charming, well-spoken and literate; no one could dismiss him or sidle off! ” remembers Beth.

Locally, Al was involved as a spokesperson. He met with his MPP several times, was guest speaker at the Alzheimer Society of Oxford Golf tournament, and was MC at the intergenerational Choir performance. He also spoke with media, including Heart FM, Rogers TV, and local newspapers.  Whatever the task, Al assumed his role with great gravity and earnestness. He always reviewed what the present focus was, ensuring he understood the message so he could convey that to his listeners. He was 100% convincing because he truly believed the message.

He recognized that to effect change he needed to be heard at both the provincial and national level. He worked with our National office to develop an ethical framework for engaging people with dementia in Alzheimer Society work, and he had recently expressed interest in joining an advocacy group led by people living with dementia called the Ontario Dementia Advisory Group. This group is focused on the development of an Ontario Dementia Strategy and actively advocates for the engagement of people with dementia in public policy decision-making that will affect their lives.

al-burridgeOn April 10th of this year, Al and staff member Robyn Fox met with their MPP to personally invite him to the Alzheimer Society Queen’s Park Day. The week after he was scheduled to meet with the Ontario Dementia Advisory group for the first time, but I received a call from his wife Maureen (Mo) advising that Al would be having surgery and wouldn’t be able to participate as anticipated but that he would like to be kept informed of the work underway. On April 27th Al went in for surgery, and sadly he did not recover. He passed away on May 14th.

Al was an impressive and active advocate for people with dementia for many years. He gave of his time so liberally and always gave thanks to his wife Mo, without whom he could not have organized himself as effectively.

Beth says it best – “Al was rarely without a smile or an anecdote. He was hospitable and reflected frequently on life’s little quirks finding all around him something of interest and curiosity.”

He was a wonderful example of someone living well with dementia.

Thank you Al. We miss you already.

Delia Sinclair Frigault – Public Policy and Stakeholder Relations Coordinator
Alzheimer Society of Ontario

Shelley Green – Executive Director
Robyn Fox – Volunteer Companion Coordinator
Beth Haas – Behavioural Support Worker
Alzheimer Society of Oxford

My mother is living with Alzheimer’s disease. Here’s how getting a diagnosis has empowered us

My mother is living with Alzheimer’s disease. Here’s how getting a diagnosis has empowered us

My mother, Bruna was officially diagnosed with Alzheimer’s disease in January of 2011. The disease was not unknown to her family. Three of her sisters died of complications resulting from this creeping and subtle sickness, as well as her paternal grandmother.

Not long after the second time she had become disoriented while driving and her ever increasing lapses in recall, I decided to take her to visit her doctor. What if she ended up hurting herself, or worse, someone else? I could never forgive myself.

“Well Bruna, I think we’ll have to send you for more tests to figure out why your memory is failing you. Until then I don’t want you driving. It’s too dangerous for you and the people around you,” the doctor explained.

The ride home was awful. “Now I can’t drive anymore. You’d better be prepared to take me wherever I need to go because now I can’t take myself!” The decibel level of her voice rose with every word.

I pulled into her driveway, relieved to be there. My mother exited my van and slammed the door, uttering one last declaration of disappointment at how I had betrayed her. I was drained, yet I could only imagine how she felt – to know that her independence would be taken from her. To think that it would render her less able to look after herself with every passing year. This was the beginning of my mother’s journey with Alzheimer’s.

I cannot stress enough how I agonized about taking her to her doctor, but I knew that the longer we waited, like any serious disease, the less likely we would be able to treat it effectively. In retrospect, we were lucky, because I knew the signs. Even though she presented different symptoms, my aunt had Alzheimer’s years earlier and I saw the horrible process first hand.

The most crucial piece of information I can pass on is that the signs of Alzheimer’s can be different for everyone and that everyone – spouses, sons, daughters, sisters and brothers, need to be informed and aware of the possible risk. Knowing the signs and taking charge of the situation by helping your loved one to visit a health care professional if you suspect issues with memory is the best thing you can do for them.

My mother has been fortunate enough to receive care from many people and organizations in the community – healthcare professionals, community care services and the Alzheimer Society. Our local Alzheimer Society helped us understand the disease and assist my mother in living with it and managing her life. She is still living independently with some assistance and she takes medication which has slowed the progression considerably.

Many have helped to lighten the load. We have spoken to compassionate, supportive and patient individuals from the Alzheimer Society who are willing to give of themselves to assist us and educate us about where we can turn for help. And for this we thank them.

My mother is living independently with Alzheimer’s Disease and she refuses to be its victim. Know the signs and get checked out as soon as possible.

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edy_grazianiEdy Graziani with her mother, Bruna