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Announcing the top 10 Canadian dementia research priorities

Announcing the top 10 Canadian dementia research priorities

[Le texte en français suit l’anglais ci-bas.]

By Drs. Katherine McGilton and Jennifer Bethell

Over the course of the past year, we asked Canadians affected by dementia—either personally or through their work—for their unanswered questions about living with dementia, dementia prevention, treatment and diagnosis. This study, also known as the Canadian Dementia Priority Setting Partnership, set out to identify the top 10 dementia research priorities, and to share them with Canadian researchers and research funding organizations.

We thank the over 1200 participants who shared their insights. Thousands of questions were submitted and the shortlist was debated at an in-person workshop, held in Toronto on June 8-9, 2017.

Canadian Dementia Priority Setting Partnership workshop,
June 8-9, 2017, in Toronto

The workshop brought together 28 participants from across Canada—persons with dementia, family members, health and social care providers and members of organizations that represent persons with dementia. Participants worked in small teams and as a group to discuss each question and decide what matters most to them.

Here are the top 10 dementia research priorities, according to Canadians affected by dementia:

Top 10 dementia research priorities

The Alzheimer Society Research Program will use these results to help bring the voices of Canadians affected by dementia into the research agenda. These priorities will also be shared with researchers and other research-funding organizations in hopes of stimulating more research in these areas.

The Canadian Dementia Priority Setting Partnership was funded by the Alzheimer Society Research Program as part of the Alzheimer Society’s commitment to the Canadian Consortium on Neurodegeneration in Aging (CCNA). Special thanks to our Steering Group and partner organizations for their involvement and assistance in the study.


ANNONCE DES DIX PRIORITÉS DE RECHERCHE SUR LES MALADIES COGNITIVES AU CANADA

researcher
Par les Dres Katherine McGilton et Jennifer Bethell

Au cours de la dernière année, nous avons demandé aux Canadiens touchés par une maladie cognitive, soit personnellement ou dans le cadre de leur travail, de faire part de leurs questions sans réponses sur la vie avec une maladie cognitive, la prévention, le traitement et le diagnostic. Cette étude, aussi connu sous le nom du Partenariat canadien pour l’établissement des priorités sur les maladies cognitives, visait à identifier les priorités de recherche à l’intention des chercheurs et des organismes de financement.

Nous remercions les plus de 1 200 participants qui ont partagé leurs points de vue. Des milliers de questions ont été soumises et la liste présélectionnée a été débattu lors d’un atelier en personne qui a eu lieu à Toronto les 8 et 9 juin 2017.

Atelier du Partenariat canadien pour l’établissement des priorités sur les maladies cognitives, le 8 et 9 jun 2017 à Toronto

L’atelier a mis à contribution 28 participants de tout le Canada, dont des personnes atteintes d’une maladie cognitive, des aidants familiaux, des fournisseurs de soins de santé et de services sociaux, et des membres d’organisations qui représentent des personnes atteintes d’une maladie cognitive. Les participants ont discuté au sein de petites équipes et en commun de chacune des questions afin de décider ce qui est important pour eux.

Voici les 10 priorités de recherche les plus importantes selon les Canadiens touchés par une maladie cognitive :

Priorités de recherche sur les maladies cognitives

Le Programme de recherche de la Société Alzheimer utilisera ces résultats pour faire entendre la voix des Canadiens touchés par les maladies cognitives dans les futures décisions en ce qui a trait à la recherche. Ces priorités seront également transmises aux chercheurs et aux autres organismes de financement dans l’espoir de stimuler la recherche dans ces domaines de prédilection.

Le Partenariat canadien pour l’établissement des priorités sur les maladies cognitives a été financé par le Programme de recherche de la Société Alzheimer dans le cadre de son engagement envers le Consortium canadien en neurodégénérescence associée au vieillissement (CCNV). Nous remercions tout particulièrement notre groupe d’orientation et les organisations partenaires pour leur participation et contribution à cette etude.

People with dementia speak to Senate Standing Committee

People with dementia speak to Senate Standing Committee

2016_05-18_ODAGSenate-(35-of-44)In February 2016, the Canadian Senate asked that the Standing Senate Committee on Social Affairs, Science and Technology study the issue of dementia in our society and to provide a final report in January 2017. On May 18, Mary Beth Wighton and the other members of the Ontario Dementia Advisory Group (ODAG) presented to the committee.

View the presentation on SenVu or read her remarks:

 

 

 

Good afternoon,

Thank you for inviting us to appear before you this afternoon.  It’s an honour to represent the 747,000 Canadians living with dementia. It is important that people with dementia are able to participate as equals in all dialogue about us. According to the UN Convention on the Rights of Persons with Disabilities (CRPD) this is our human right.

The Ontario Dementia Advisory Group (ODAG) is a group of people with dementia living in Ontario. We are involved in policy-making strategies, research projects and education initiatives at the local, provincial and national level.  We have close ties to Dementia Alliance International, the international self-advocacy group of people with dementia.

We are here today as a united voice of four people. When one falters, the others will step in. This is what makes us strong.

We are parents, grand-parents, spouses, and friends. We have all had long and successful careers. When we were diagnosed with dementia, these experiences did not disappear; they are and will always be a part of us. We rely on these roles and experiences to help us with our advocacy work.

We all have many important issues to bring to this committee, but three topics of significant importance to people with dementia are:

  • The human right to a more ethical pathway of care
  • The right to be treated with the same human rights as everyone else, under the UN Convention on the Rights of Persons with Disabilities
  • The need for more research emphasis on a social rather than a medical model. Research does not only focus on a cure. It is important to take a more holistic approach to well-being.

Lack of involvement of people with lived experience, stigma and insufficient education regarding dementia is deep rooted in Canadian society. This impacts us greatly.

When I was diagnosed with probable frontotemporal dementia at the age of 45, I was told to get my affairs in order, that I had about 5 to 8 years to live and would eventually live in long-term care. My partner was told she would be responsible for my welfare and that it would eventually become totally time-consuming. The doctor then revoked my license on the spot. She told me I did not have the capacity to drive any longer. Interesting, as I drove to the hospital without any issues. My loss of license was done without any kind of due process.

My story is like most other people living with dementia. It is our desire to live life fully and utilize our remaining skills that help us remain strong. We reject the notion of going home to die. The time between diagnosis and end-stage dementia can be many years. In the meantime, we have the ability to live life well.

If I had been diagnosed with a different illness, like a stroke, I would have received an interprofessional team approach to my care. However, dementia is different. There is not a single government body dedicated to dementia. The current health-related silos don’t work well either. This results in difficulties in achieving our optimal physical, cognitive, emotional, communicative, and social well-being.

If I had been diagnosed with a different illness, like cancer, the oncologist would spend time with me, educating me about this disease and options I have available. However, dementia is different. I received a pamphlet from the doctor; she said she would notify my local Alzheimer Society as they are the experts in dementia. Beyond that, she did not offer any hope, services or suggestions to live life well with dementia, or to fully participate in society.

Finding a cure for dementia is extremely important, but our lived experience is as important as finding a cure. We hope there is a more balanced focus in research – not only about a cure but better services, treatment and care.

In August 2016, Canada will be the first country to report on its progress in supporting people with disabilities to the CRPD. It has agreed to be a pilot for others to learn from. We believe this can be used to advocate for improvements in dementia care and services.

The CRPD is important as it helps to identify practical steps to ensure people with dementia have the same human rights as anyone else. In particular, we recommend Canada takes action on:

  • Equality and non-discrimination, including the provision of ‘Reasonable accommodation” and accessibility: This may include unlawful discrimination by health care, driving license authorities, insurance companies and employers. In a nut-shell, this means to make changes so we can continue to participate and have access to anything and anywhere – the same as anyone else.
  • Introduction of the Dementia Friendly Communities (DFC) model. It has goals of reducing stigma; ensuring an early diagnosis; having consistent and reliable travel options; practical support; community based solutions, including helping us to live independently and safely in our own homes. There are many benefits of this model, including empowerment for people with dementia and the financial benefit to less time needed in costly residential or hospital care.
  • Reduction of the disproportionate use of antipsychotic drugs, physical restraints and being detained in psychiatric institutions.

The time is now to make lasting changes affecting people living with dementia and their carepartners. This must be done with us and not for us.

7717055Mary Beth is a retired vice-president and owner of a recruiting firm. She spent 10 years in dot com as a senior business analyst. Mary Beth was diagnosed with probable frontotemporal dementia in 2012 at age 45. She, along with her partner Dawn and daughter Brianna, work to challenge the stigma of dementia. She is an advocate locally, provincially, and internationally, and was named a Champion for Dementia by the Waterloo-Wellington Alzheimer Society. She has had her writings about living with dementia internationally distributed through blogs and websites. She was a keynote speaker at the 2014 A Changing Melody forum, MAREP’s 2013 Alzheimer Awareness event, and was a key figure in MAREP’s 2014 video series “A New Voice: Living Well with Dementia”. She has been a panel member at various events.

Cornwall community stepping up to become Dementia Friends

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!

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About the Author

Shelley Vaillancourt, Executive Director of the Alzheimer Society of Cornwall and District.
Shelley Vaillancourt, Executive Director of the Alzheimer Society of Cornwall and District.
5 ways you can be dementia–friendly in your community

5 ways you can be dementia–friendly in your community

DementiaFriendsAd

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.

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5 manières d’être un ami de la santé cognitive dans votre communauté

DementiaFriendsAd
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.