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
‘We have so much to learn from our grandparents’: A teen’s perspective on Alzheimer’s
Marilyn Lemay loved the outdoors and would spend every waking moment there. Inherently creative, she crafted, embroidered, quilted and painted everything in sight. If you stand still for more than a moment, her 17-year-old granddaughter Deborah jokes, Marilyn just might paint you.
Some of that changed eight years ago, when Marilyn was diagnosed with Alzheimer’s disease. Deborah’s grandfather Ron moved from their beloved Elliot Lake home to be closer to Deborah’s mother and family. Managing Marilyn’s care himself wasn’t an option. He knew he would need to rely on a close family network.
Deborah loves being closer to her grandmother. She still goes to her with questions about nature and for advice about life. While Marilyn’s memory isn’t what it used to be, she still has a wealth of knowledge to share. And the two of them have joined an inter-generational choir started by the Alzheimer Society London and Middlesex.
“About 15 to 20 high school students get together with seniors living with Alzheimer’s disease and we sing old, war-time songs,” says Deborah. Marilyn loves this choir. It reminds her of her childhood when her mother and aunts would sing and dance in her home.
Deborah loves hanging out with her grandmother, whether they’re walking, having tea parties, or watching episodes of I Love Lucy. There’s so much hope, wisdom, and joy in her grandmother, and Deborah wishes more young people could see that. The chance to connect across generations, to learn from each other and spend valuable time together, is really important.
When Deborah describes her grandparents, her voice lights up: her grandfather is still so in love with her grandmother, even though they met at 13 (63 years ago!). Ron takes Marilyn out on dates, will dance with her whenever music comes on, and the two of them tease each other still. Marilyn is still Marilyn, in other words, and she still lives with deep joy.
Family support systems are an integral part of living with Alzheimer’s and other dementias. And those systems themselves need support with resources, groups, and hope for a cure. Please donate to the Alzheimer Society, so that families like Deborah’s have more time to walk, and sing and laugh. Because it’s not just their disease. It’s ours too. #InItforAlz
NOUS AVONS TELLEMENT DE CHOSES À APPRENDRE DE NOS GRANDS-PARENTS : PERSPECTIVE D’UNE ADO SUR L’ALZHEIMER
Marilyn Lemay adorait la vie en plein air et passait le plus clair de son temps à l’extérieur. D’une nature créative, elle faisait de l’artisanat, de la broderie, des courtepointes et peignait tout ce qu’elle voyait. Si vous restiez juste un moment sans bouger, elle vous prenait comme modèle pour peindre, raconte en riant sa petite-fille Deborah, 17 ans.
Il y a huit ans, la maladie d’Alzheimer a été diagnostiquée à Marilyn et les choses ont changé. Les grands-parents de Deborah ont quitté leur domicile du lac Elliot, qu’ils aimaient tant, pour être plus près de la mère de Deborah et de la famille. Le grand-père ne pouvait prendre soin de Marylin par lui-même et il savait qu’il pouvait compter sur le réseau tissé serré de ses proches.
Deborah adore être à proximité de sa grand-mère. Elle lui pose plein de questions sur la nature et lui demande des conseils de vie. Même si la mémoire de Marilyn n’est plus ce qu’elle était, elle possède toujours de précieuses connaissances à transmettre. Deborah et sa grand-mère font maintenant partie d’une chorale intergénérationnelle mise sur pied par la Société Alzheimer de London et Middlesex.
« Environ 15 à 20 élèves du secondaire se réunissent avec les personnes âgées atteintes de la maladie d’Alzheimer et nous chantons de vieilles chansons du temps de la guerre », poursuit Deborah. Marilyn adore faire partie de ce chœur. Cela lui rappelle son enfance lorsque sa mère et ses tantes chantaient et dansaient à la maison.
Deborah aime beaucoup passer du temps avec sa grand-mère, que ce soit pour faire une promenade, prendre le thé ou regarder des épisodes de « I Love Lucy ». Sa grand-mère est tellement pleine d’espoir, de sagesse et de joie, et Deborah souhaiterait que plus de jeunes puissent profiter de son expérience de vie. La possibilité d’établir des liens entre les générations, d’apprendre les uns des autres et de passer de précieux moments ensemble est vraiment importante.
Lorsque Deborah décrit ses grands-parents, sa voix s’illumine : son grand-père est toujours amoureux de sa grand-mère, même s’ils se sont rencontrés à l’âge de 13 ans (il y a 63 ans de cela!). Il invite Marilyn à sortir, danse avec elle au son de la musique, et les deux adorent toujours se taquiner. En d’autres mots, Marilyn est toujours Marilyn, et elle continue de vivre le cœur rempli de joie.
Le réseau de soutien familial fait partie intégrante de la vie avec la maladie d’Alzheimer ou avec une autre maladie cognitive. Mais il faut appuyer ce réseau avec des ressources, des groupes d’entraide et l’espoir de guérison. Pour aider les familles comme celle de Deborah à disposer de plus de temps pour faire des promenades, chanter et rire, nous vous invitons à faire un don à la Société Alzheimer. Parce que ces maladies ne concernent pas seulement les personnes atteintes, elles nous concernent tous. #TousContreAlz.
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.
So 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
The Alzheimer Society of Ontario hosted its second annual Finding Your Way® Provincial Forum on Thursday March 10th. Close to 100 people came together to see how we all can help people with dementia live safely in the community. Many partnering organizations were represented – supportive housing providers, retirement home staff as well as paramedics and other first responders. The Alzheimer Society was happy to see such an interest from our partners.
The Hon. Mario Sergio, Minister Responsible for Seniors and Indira Naidoo-Harris, Parliamentary Assistant to the Minister of Health and Long-Term Care were both in attendance. They brought warm greetings and announced the Ontario Seniors’ Secretariat’s ongoing financial support of Finding Your Way!
This forum showcased the great work happening across Ontario to support seniors, additionally the brand new Finding Your Way website was launched at this event. Learn more about this program and how you can support people with dementia to live safely in the community at www.findingyourwayontario.ca.
Below is a glimpse at the wonderful group of attendees who have helped support the Finding Your Way program.
Cornwall community stepping up to become Dementia Friends
One of our core objectives here at the Alzheimer Society of Cornwall and District is to continue to look for new ways to make life better for those living with Alzheimer’s and other dementias. One way we are looking to bring people closer together is through the Dementia Friends campaign. As many of you already know, a Dementia Friend is someone who learns a little bit more about what it’s like to live with dementia and then turns that understanding into simple actions that can help people with dementia live well.
We are moving this initiative forward with the goal of combining it with the Dementia Friendly Communities campaign. A dementia-friendly community is a community that focuses on stigma reduction and the inclusion of people with dementia. Its community members are educated about dementia and recognize that people with dementia may sometimes experience the world differently. They foster understanding about dementia and encourage people with dementia to participate in their communities to the fullest extent possible. In a dementia-friendly community, people living with dementia feel supported by their community members even when they face potential challenges.
We have seen the success of this marriage between the two initiatives. The one hand encourages people to learn more about dementia and commit to an action; the other hand effectively puts that action into play. We continue to receive outstanding support from all sectors of the community, from the police services, to local health and community support providers; from the restaurants, to sports organizations.
If you haven’t already done so, I urge you to visit www.dementiafriends.ca, sign up and spread the word toyour family and friends. Together we can make a difference!
All of the great Cornwall Communities that have stepped up to become Dementia Friends!
About the Author
Alzheimer Society of Ontario receives accreditation!
I’m excited to share some great news with you! Late last year, staff at the Alzheimer Society of Ontario voluntarily put our key processes, services and strategies through a rigorous assessment by Accreditation Canada. We were evaluated in all aspects of being both a health-care organization and a non-profit. And we have just heard that we have received a full four-year Accreditation! This is a great accomplishment for our organization and demonstrates to you our commitment to being a quality health charity and continually improving ourselves and the services we provide.
Accreditation Canada is an independent, non-profit organization that strives to improve health care for all Canadians. It works with health-care organizations to help them improve quality, safety, and efficiency so they can offer the best possible care and service. Being accredited means an organization has met the highest standards for quality and continuous improvement. Along with regular check-ins, an accredited organization is re-evaluated every four years.
Moving forward, this will strengthen the Alzheimer Society of Ontario’s strong brand among donors, supporters, partner organizations and government, all of whom are key stakeholders in advancing our vision of a world where every Ontarian impacted by this disease receives they help they need to live well with dementia. Learn more about the Alzheimer Society of Ontario.
Chief Executive Officer, Alzheimer Society of Ontario
At the Alzheimer Society of London-Middlesex we have many social recreation programs such as art, gardening, cooking, knitting, and scrapbooking. But before Minds in Motion®, we did not have one that focused on group exercise and healthy living.
This has been a great addition. Since we started Minds in Motion, people are seeing how exercise makes a huge difference for people with dementia. Just today I received a call from a client interested in the program. I had asked her what she knew about the program and responded, “only that it is great.”
People seem to enjoy the group exercise component the most, so much so that many keep signing up for session after session. Watching the group constantly smiling and laughing during exercise is great to see. We love to watch them grow and feel proud of themselves.
Many are now wondering what other physical activity programs we offer. As a result we decided to start a walking program called “Making Strides,” which launched last September.
Another big benefit of Minds in Motion is the consistency. Most of our programs are once a month and Minds in Motion is ongoing for 8 weeks. Because of this, I find that participants are seeing strong positive changes from the constant support and participation in the program. It’s been so great to be part of this pilot program and I look forward to seeing it grow across the province and beyond.
Imagine trying to tell someone where you are hurt or how you feel, but you can’t find the words or phrases to get across what you are trying to say. How would this impact your relationships with friends and family and all the other aspects of life where communication is essential?
This condition – when someone knows what he or she wants to say but cannot express it – is called aphasia. Aphasia is most often the result of stroke or head injury, but people in early stage dementia often are considered to have aphasia as well.
People with aphasia still have the ability to think and make decisions. Sadly, aphasia often masks a person’s intelligence because of the inability to communicate feelings, thoughts and emotions. The condition leads to frustration and isolation.
The good news is that we can do something to help through creating environments where the person can express themselves. Training service providers to use special communication techniques known as Supported Conversation for Adults with Aphasia (SCA™), ensures that the individual is included in important decision-making events and has access to health care and community services.
The SCA framework developed by Dr. Aura Kagan at the Aphasia Institute prompts the care provider to ‘acknowledge competence,’ which helps the person ’who knows more than they can say’ feel as though they are being treated respectfully. They are also taught how to ‘reveal competence,’ using techniques to ensure accurate exchange of information, opinions and feelings.
Pictographs are graphic images that can convey complex sophisticated messages and abstract concepts in a clear easily understandable manner. The Alzheimer Society of Ontario partnered with the Aphasia Institute for the Finding Your Way™ project to create pictographs to help explain the dangers of going missing and how to prevent such incidents from happening.
Although developed for aphasia, using pictographs along with other SCA™ techniques such as speech and intonation cues, gesture and writing can engage people with dementia in conversation. SCA™ techniques can help by maintaining a shared focus and attention, and by facilitating conversational behaviours such as taking turns in speaking and listening, initiating a topic of shared interest/knowledge, and maintaining a topic across several comments.
There are many ways you can be a friend to people with dementia in your community, whether it’s in conversation or looking out for someone’s safety. Check out these 5 tips, then visit www.dementiafriends.ca to become a Dementia Friend.
1) Communicate clearly
Speak clearly and use short, simple sentences. Be sure not to speak too quickly or raise your voice. Remember that a person with dementia may not understand what you’re doing or remember what you’ve said. Be respectful and address them and their caregiver in conversation.
2) Use positive body language
Dementia can affect people in how they express themselves and understand what is being said to them, so body language is important for communication. Make sure that the person can see your face clearly and that your expressions match what you’re saying. Smile, make eye contact, and be respectful of personal space.
3) Help find the way
People with dementia sometimes become disoriented and may become lost, even in familiar places. If you see someone who looks lost or confused, it’s okay to approach them. Smile and speak slowly and calmly. Tell them who you are and ask their name. Ask “yes” or “no” questions, and give the person plenty of time to respond. Be sure to check if the person is wearing a Medic-Alert Safely Home bracelet. Contact the police for help and wait with the person until they arrive.
4) Be aware of environment
Noise, lighting, shiny, reflective or patterned surfaces can contribute to an environment that can be disorienting or over stimulating for the person with dementia, causing them to become agitated. If you are in conversation, consider a space that is less busy and quieter.
5) Be a careful and understanding listener
Listen carefully to what the person is saying and if you don’t understand them fully, explain what you have understood. Sometimes visual clues are helpful, so you might try writing your message down or using pictures or objects to help the person understand.
—————————————————————————- 5 manières d’être un ami de la santé cognitive dans votre communauté
Il existe de nombreuses manières d’être ami avec les personnes atteintes de troubles cognitifs dans votre communauté, que ce soit par le bais de conversations ou en vous préoccupant de la sécurité de quelqu’un. Prenez connaissance de ces 5 conseils, puis rendez-vous sur www.amissantecognitive.ca pour devenir un ami de la santé cognitive.
1) Communiquer de manière claire
Parlez clairement et utilisez des phrases simples et courtes. Assurez-vous de ne pas parler trop vite et de ne pas élever la voix. Souvenez-vous qu’une personne atteinte d’un trouble cognitif pourrait ne pas comprendre ce que vous faites ou se souvenir de ce que vous avez dit. Soyez respectueux et adressez-vous à ces personnes et leurs aidants au cours de conversations. 2) Utilisez un langage corporel positif
Les troubles cognitifs peuvent affecter la manière dont les personnes qui en sont atteintes s’expriment et comprennent ce qu’on leur dit. Aussi, le langage corporel est important pour la communication. Assurez-vous que la personne puisse voir clairement votre visage et que vos expressions correspondent à ce que vous dites. Souriez, ayez un contact visuel et respectez l’espace de la personne.
3) Aidez les personnes à trouver leur chemin
Les personnes atteintes de troubles cognitifs sont parfois désorientées et peuvent se perdre même dans des endroits qui leur sont familiers. Si vous apercevez une personne qui semble perdue ou désorientée, vous pouvez l’approcher. Souriez et parlez lentement et calmement. Dites-lui qui vous êtes et demandez-lui son nom. Posez des questions fermées (oui ou non) et donnez beaucoup de temps à la personne pour y répondre. Assurez-vous de vérifier si elle porte un bracelet MedicAlert Sécu Retour. Contactez la police pour obtenir de l’aide et attendez avec la personne jusqu’à ce qu’elle arrive.
4) Soyez conscient de l’environnement
Le bruit, l’éclairage, les surfaces brillantes, réfléchissantes ou à motif peuvent contribuer à produire un environnement qui peut désorienter ou être trop stimulant pour la personne atteinte de troubles cognitifs, ce qui peut provoquer son agitation. Pensez à un endroit plus calme et moins bruyant.
5) Soyez un auditeur attentif et compréhensif
Écoutez attentivement ce que dit la personne et si vous ne la comprenez pas complètement, expliquez-lui ce que vous avez compris. Parfois, des témoins visuels peuvent être utiles. Vous pourriez essayer d’écrire votre message ou utiliser des photos ou des objets pour l’aider à comprendre.
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.