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 atwww.carepartners.ca
Phyllis is a person living with early-onset Alzheimer’s disease and Lewy body dementia. She is a strong advocate for the rights and abilities of people with dementia at the local, national and international level. Read her full bio here: http://www.odag.ca/our-people.html
DementiaHack 2017: Making a difference with technology
On March 4th, the doors opened bright and early at MaRs Discovery District for DementiaHack 2017. Throughout the morning, registrants trickled in, setting up their computers and discussing their plans for the upcoming 36 hour-long event. An annual event hosted by Hackernest, Dementia Hack is a competition to create innovative technology to help people with dementia, Alzheimer’s disease and other neuro-degenerative diseases. With over 300 developers gathered together to compete, the room was buzzing with eager participants, discussing and preparing their projects.
Opening remarks were led by Jordan Banks (Facebook Canada) followed by Mayor John Tory, Gerry Gallagher (Public Health Agency of Canada) and Kevin McGurgin (Dementia Hack). Each speaker noted how inspiring it was to see so many young and bright individuals working together to help people with dementia and their caregivers. The winners of the competition would receive a cash prize of $100,000 to develop their technology, but it wouldn’t just be them who won. Today, 564,000 Canadians are living with dementia, and even more people worldwide. With the help of the hard work of the developers at this event, many more resources and tools would be developed that could make a huge impact on the lives of people with dementia.
At 10:30 am, the competition began, and each team started working on their projects. Around the room, were mentors from various backgrounds of expertise in the fields of dementia, health services and research. Team members approached mentors throughout the day to ask for their expert opinions on the design of their projects. Amongst the group of mentors, were Phyllis Fehr and Agnes Houston, who brought vital perspectives to each group. Phyllis and Agnes are both diagnosed with dementia and are prominent advocates for people with dementia and their caregivers.
The next day, the judges evaluated each project to determine who would take home the grand prize for the competition. One of the judges, Lisa Salapatek (Chief Program and Public Policy Officer at the Alzheimer Society of Ontario), spoke about the event and projects submitted:
“I had the honour of being a mentor and judge for the Family Caregiver Challenge set. It turned out to be the most popular category with 20 teams competing, and their solutions and presentations were nothing short of amazing, ranging from in-home artificial intelligence and sensor systems to reduce safety concerns, to virtual scrapbooks and storytelling tools, to uber-inspired apps to help families access the support they need on demand. There were long debates as the judges for each challenge set came together to come to come to a consensus on which teams would move on to the finals.”
After the judges had all met, the grand-prize winner of the competition was announced: Team Momentum, for their application, MemoApp. The application works by passively collecting and analyzing data about the person with dementia through natural voice recording, to help them and their caregiver better track the progression of their dementia, and to gather data for researchers to better understand the progression of dementia. The runner-ups in the competition were the applications: Bright Guide, Rescue and ConnectDem.
We look forward to seeing how these incredible applications will develop and what new and innovative ideas will be brought to next year’s Dementia Hack!
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:
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
« 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
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.
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
À 21 ANS, LA MALADIE D’ALZHEIMER EST LE DERNIER DE VOS SOUCIS, JUSQU’À CE QUE VOTRE MÈRE EN SOIT ATTEINTE
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.
Dementia and air pollution: should we flee to the country?
Could living in a major city increase your risk of dementia? A new study suggests that may be the case.
After studying over two million Ontarians over an 11-year period, researchers found that the closer they lived to a major roadway, the more likely they were to develop dementia. Those who had lived in urban areas for a long time were even more likely to develop the condition than those who had moved more recently.
These findings suggest one culprit in particular: air pollution. Of course, the study didn’t prove that air pollution causes dementia – only that there is some sort of relationship. But this isn’t the first major study to find an association between air pollution and a decline in brain function in middle-aged and older adults.
So does this mean that we should all flock to the country? Not so fast.
The increased risk shown in the study is only slightly higher, and while these results might help us understand a bit more about what causes dementia in certain circumstances, more research needs to be done.
The “brew” of different toxins that make up air pollution make it difficult to attribute the effect to one specific factor, and there are other factors besides air pollution that may come into play.
Yet, air pollution is an area worthy of more study because it has other indirect but very important effects on the brain. Air pollution may contribute to conditions like pulmonary disease, heart disease and stroke, which we know can increase a person’s chances of developing dementia. Cardiovascular disease, in particular, can lead to vascular dementia.
While the findings of this new study are preliminary, they do have important implications for public health. We need to do more to control and reduce air pollution and protect our most vulnerable citizens.
And while we still don’t fully understand the causes of dementia, there are things we can do right now to reduce our risk. More physical activity, eating a heart-healthy diet, quitting smoking, challenging our brains and staying socially connected are all essential for brain health.
Dr. Marco Prado’s research aims to address the mechanisms by which deficient cholinergic circuits contribute to dementia. He is an Alzheimer Society Research Program Biomedical Research Grant recipient and a professor at the University of Western Ontario.
Let’s make sure that aging does not mean losing one’s identity.
-Dr. Marco Prado
Dr. Marco Prado
Biomedical Grant Recipient in Alzheimer’s disease and dementia – $149,128 Project: Mechanisms of anti-cholinergic activity mediated dementia and Alzheimer’s pathology
Read about more of our grants and awards recipients here.
Finding Your Way through the winter season: tips for staying safe with dementia
Winter is on its way, bringing with it snow, sleigh bells, and a renewed importance around being safe in our homes and communities. To prepare, we’re putting snow tires on our cars, pulling winter boots out of storage, and stocking up on salt for our sidewalks and driveways – but for people with dementia, those safety steps go a bit further.
If you’re living with dementia or helping to care for someone with dementia, here are some important factors to maintain safety in your community through the winter.
Proper clothing is one of our first levels of protection in inclement weather – so be sure to pull the sweaters, winter coats, boots, hats, scarves, and mitts out of storage so that season-appropriate clothing is close at hand. Footwear considerations are extremely important – find boots with good grip, that are well-insulated, and with velcro instead of laces for ease. For those items like hats and mitts that seem to disappear, purchase a few extras so that you’re never without. It’s a good idea to buy clothing items that are brightly coloured or distinctive in some way – if someone with dementia gets lost, it will help as an identifying marker.
If you see someone in the community this winter who isn’t dressed properly for the weather, they may need assistance. Visit our Finding Your WayⓇ website to learn how to help someone with dementia who may be lost.
Sundowning refers to the time period – usually later in the day – when confusion and agitation increase for people with dementia. With less sunlight and shorter days during the winter months, sundowning can be exacerbated, but there are ways to help ward it off.
Keep curtains open as much as possible during the day to let in sunlight. Turn lights on in the home earlier in the evening, and consider purchasing a special light box to provide specialized light therapy. If applicable, ensure that outdoor walkways around the home are well-lit, and consider adding motion-detected lights outside. Remember that people with dementia often have issues with visual perception, so helping to keep homes well-lit indoors and out is extremely important.
Dress appropriately for the weather
Use handrails to walk up and down steps, when available
Step carefully into snow – snow drifts can hide uneven surfaces
Avoid or walk carefully on unsalted areas – shadowed areas can still be icy even if temperatures are above 0 degrees
Consider purchasing a walking aid to help with balance while walking during the winter
Inside The Home
Keep heat at a comfortable level
Be sure that space/electric heaters are checked regularly, and do not place them in areas where someone can trip over them
Make sure the phones are connected properly and cell phones are charged well to maintain communication
Keep wet boots on heavy duty mats to avoid slipping in puddles – but make sure all mats lay flat to avoid tripping hazards
Don’t spend too much time indoors – when it’s safe, take some time to get some fresh air and a change of scenery
These tips are just some of the ways that people with dementia can remain safe and active during the winter months. Don’t forget to consider the use of locating technologies – a cell phone, door sensor, or GPS tracker may be helpful to avoid a wandering incident or to help find someone who has gone missing. Want to learn more? Visit the updated Finding Your WayⓇ technology page!
Winter is a beautiful season, and meant to be enjoyed – so be safe, and have fun!
A few months ago, my cousin posted a wonderful video of my grandparents’ 50th wedding anniversary. The year was 1994. My grandfather gave a wonderful, heartfelt speech about what his wife meant to him. The family did skits making fun of the onion sandwich he ordered on their first date. There was even Karaoke. Good times.
While the first 50 years of marriage were wonderful for my grandparents, the years that followed for them and for our family were extremely challenging. Shortly after this celebration, my grandfather Alexander was diagnosed with a form of dementia. With his loyal wife Clara by his side, he slowly deteriorated over a 10-year period. It was absolutely heartbreaking watching a man with such wit, and intellect slowly become someone else.
Then shortly after my grandfather passed away, my grandmother was diagnosed with a form of dementia. She is now well into her 90s, and has maintained all of her class and dignity. It has been so difficult for our family to go through this more than one time.
That said we are so lucky that my grandparents had the foresight to prepare. While they had the capacity to do so, they both had prepared their Will and powers of attorney. Everything was set up in accordance with their wishes. The Will appointed executors and beneficiaries for their property. A power of attorney appointed family members to act as their substitute decision maker for matters of property and for matters of personal care.
By taking the time to do so, our family avoided the expensive court procedures associated with guardianship applications. There was no need to purchase expensive insurance or bonds that would have been required had the documents not been in place. We have saved money on lawyers, and saved so much of the aggravation and heartache that goes along with unplanned estates.
This is why I was so thrilled when the Alzheimer Society asked me to guest blog for Make a Will month. I am so passionate about making sure that people have the proper documentation in place. I know firsthand how important this is.
Over the course of this month, I will be providing you with information about what goes into making a Will. What are the things you need to consider? What are some of the traps you can fall into? If there is one message I would like send out to everyone, is that doing these documents CANNOT WAIT. It is way too important.
You may be thinking that doing a Will is expensive and time-consuming. Fees can vary greatly depending on the complexity of your Will and where you live. For example, for a straight forward Will, my law firm charges $399 for a Will and two powers of attorney, with a full consultation with a lawyer. ($699 for a couple). And it does not take very long. Most of my clients take about 3-5 hours in total to complete everything that needs to be done.
Completing these documents is so necessary. Please don’t delay; if you need information right away, there are a number of ways to reach me.
Call me now at (416) 863-1300.
Or send me an e-mail now at email@example.com
Or follow this link to set up a free 15 minute phone consultation or a 2 hour Will instruction session.
Thank you for taking the time to read this and I hope you come back during the month of November to read important information for doing your estate plans. Your reward? Getting into action to protect your family, your assets, and gain peace of mind.