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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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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

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.

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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‘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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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.

Erica’s story

Erica’s story

I was ten years old when I first noticed the problem. My whole family was attending my brother’s hockey game on a typical Thursday night. My Papa came to every game since I could remember. As we prepared to leave, there was only one person missing, my Papa Joe.

With no sign of him in the arena, we went out into the parking lot to check if he was taking a minute and having a smoke. But to our surprise his car was gone. Confusion ensued because he never left without congratulating my brother on his performance. Luckily, not long after, he came back. He had thought he was meeting us at the house but when he got there remembered the hockey game.

Alzheimer’s is hard on a family. It’s not something you want to admit is happening and is even harder to see someone you love have to go through. In 2009 it struck my family. My Papa Joe was diagnosed with Alzheimer’s as well as lung cancer. Then, in 2013, he moved into a long-term facility.

This was especially hard on my Nana. She didn’t want to admit she couldn’t take care of him full-time and the stress that it brought, with her worrying through the days and nights, was too much. The truth is my Papa couldn’t be left alone. At the long-term care facility he is able to get 24/7 assistance. But still, my Nana takes him his coffee and muffin for breakfast every day and makes sure she’s there when he’s going to sleep.

Over the years, he has had good days where he’s more coherent and then bad days where he shuts himself away. This year, however, his memory has begun to deteriorate rapidly to the point that he is unsure who I am when I walk into the room and he has trouble speaking. But the one thing that never changes is his sense of humour and that’s something I will always cherish. No matter what has happened he can always laugh about it.

That being said, there are still tough times. My Papa loves going for drives and he’s chatty throughout the whole ride. The toughest part is bringing him home, and having the same conversation about where we are taking him. Even though I know it’s coming, it doesn’t make it easier.

Alzheimer’s disease doesn’t have a cure, but there are ways to help reduce the risk. Go out and be socially and physically active. Live a healthy lifestyle and don’t wait until you are older. You can try and prevent it now.

Erica StevensonErica Stevenson

Why I work for the Alzheimer Society

Why I work for the Alzheimer Society

Elizabeth Barrie is a First Link® outreach worker for the Alzheimer Society of Oxford. She shares her personal connection to the disease.

What is your connection to Alzheimer’s disease?

My mom was diagnosed with Alzheimer’s disease when I was parenting three young daughters. I had to juggle the expectations of motherhood with the demands of supporting my parents as they navigated the uncharted waters of dementia.

Never one to complain or dwell on the negative, Mom continued to participate actively in her community, writing for the newspaper, playing the piano at church and helping to lead choirs.  Remaining active, socially and physically, was essential to Mom’s health and well-being throughout her journey.  In spite of the changes in her brain, Mom did all she could to care for her family – and what she couldn’t do, Dad did for her. Their 15-year journey with Alzheimer’s disease was a labour of love for both of them.

What were the initial warning signs that led you to believe your mother’s health was changing?

She began taking notes when she and I would have conversations over the phone.   When I asked her questions she would read from her notebook about the conversations she’d had with other family members rather than respond from memory.

Mom also began repeating stories and had difficulty finding words, which progressed over time.

Soon after her diagnosis, I remember finding Mom trying to open a can of soup using a hammer and nail. She didn’t recognize the manual can-opener in her kitchen drawer.  This was a stark reminder that Mom’s changing brain was going to make even smallest tasks harder to complete, especially in the kitchen.

What support, if any, did you access?

I remember the day I drove to the Alzheimer Society office without an appointment and entered feeling completely overwhelmed and scared. A woman on staff made time for me right away, answering my questions, validating my feelings, and sharing my tears.

I had held it together as long as I could, but when I reached my breaking point, I needed somewhere to turn with someone who would understand and could help.

The Alzheimer Society provided all that I needed and more.  I was sent home with resources to read and share with my family, tips to engage Mom and above all reassurance that we were not alone.

Follow-up calls and opportunities for myself and all the members of my family to access education and support came as needed.  This help proved invaluable over the course of Mom’s journey.

As a family, we learned to live “in the moment” with Mom.  We understood the importance of music, family, laughter and conversation, and we engaged Mom in as many ways as we could, for as long as we could.

When we were lacking information, the Alzheimer Society provided it for us. They shared helpful coping strategies and tips, lending a listening ear at the times when we felt depleted of strength. This was a gift.

Read more stories like Elizabeth’s.

elizabeth-barrieElizabeth Barrie

First Link® outreach worker

Alzheimer Society of Oxford

What I learned caring for Grandma

What I learned caring for Grandma

It is difficult to understand Alzheimer’s disease until you are living with someone who has it. For me it was when my Grandma got it. She had lived with us for my entire life, and played a huge role in my upbringing.

First it was the little things, simple tasks that we take for granted, such as preparing a meal. While I could deal with changes like that, the hardest part was accepting that someone who had always protected and cared for me had suddenly become someone I had to take care of.

For a long time, I wanted to ignore her struggles, hoping that if I closed my eyes to the changes happening right in front of me, I could prevent them from happening altogether. But I soon realized that with a progressive disease like Alzheimer’s, change was inevitable. Knowing that her condition would deteriorate gave me the strength to overcome my own fears and help her.

And helping care for her only brought us even closer. Although her behaviour changed, her identity remained and she was still a person like everyone else. While many of her memories were no longer accessible, I could still remember for her. And sometimes, she would remember too.

For many people, a serious disease like Alzheimer’s becomes an emotional fork in the road. You can choose to turn your back on someone or you can choose to embrace them.

It can be far too easy to turn our backs on those who are suffering, particularly for young people, who may consider themselves too far removed from the suffering of the elderly. However, it is important for young people to face the challenge and look on dealing with the disease as part of their own personal road to growth.

Caring for my grandma has helped give me amazing insight into the struggles of those diagnosed with Alzheimer’s disease, and I truly hope I can use this knowledge to help others, both the patients themselves, and those who have yet to have any first-hand experience with the disease.

Want to share your story? Contact Ryan MacKellar (rmackellar@alzheimeront.org).

Andrea Shanmugarajah

Volunteer blogger