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The mirror of dementia

The mirror of dementia

I look in the mirror and what do I see?

I see me. That is me…the same ‘me’ I’ve always seen when I look in the mirror.

But wait – is it really the same ‘me’? Is this what others see? I look like me – or the ‘me’ I was.

You see, I have changed – not on the outside, not in who I am, not in what I believe; I haven’t changed in how I see the world.

You see, I’ve changed in how my mind works.

The words…the words I use, they don’t come easy; they become confused. That word I want to use – you know that word – it won’t come to me now.

Oh yes, there I am, there in the mirror. What did I come in here for? I don’t know. Well, I’m in the bathroom looking in the mirror…I must be in here for something.

Oh look, here is a hairbrush. That must be it – I must have come in to brush my hair.

But when I look in the mirror, my hair is already brushed. No, no, that is not what I’m in here for.

This disease is making me confused at times. But I’m still me when I look in the mirror.

No, wait – those aren’t my eyes. Those eyes I see looking back at me are tired; my eyes aren’t tired.

My eyes twinkle and are full of life. I am full of life.

Look, look in the mirror – that is me. The ‘me’ others see.

Look at my smile – there it is – yes, I am happy. I have a loving husband and a supportive family. Yes, I am happy.

But, wait…that smile is drooping…my smile doesn’t droop.

Is this a sign of that disease in my head…the one that is attacking my brain? The brain that does not always work the way I want it to…

Can others see theses signs, too?

Look in the mirror – this is me.

How long will I still be me? How long will I still see me?

How soon before I look in this mirror and the ‘me’ won’t be there?


© 2016 Phyllis Fehr

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

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.

Pictured Above: Mayor John Tory speaking at opening remarks

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.

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Pictured above: Agnes Houston (far left), and Phyllis Fehr (second left), advising a team at the event
DementiaHack2017-27
Pictured above: Developers at work on their application for the competition

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!

Finding Your Way through the winter season: tips for staying safe with dementia

Finding Your Way through the winter season: tips for staying safe with dementia

Stay safe this winter with these helpful tips!

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.

 

Clothing

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

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.

 

When Outside

  • 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!

Changing the way dementia research is done in Canada

Changing the way dementia research is done in Canada

By Drs. Katherine McGilton and Jennifer Bethell

Research is usually researcher-driven. We want to help change that.

What do we mean? Researchers usually decide what work is important enough to be funded and then good enough to be published. But are researchers aware of the issues that matter most to those who can actually benefit from their work? Not always.

That’s why we’ve created the Canadian Dementia Priority Setting Partnership, a study that will bring the voices of Canadians affected by dementia into the conversation about research. By involving people with lived experience, we can improve the way that dementia research is done and communicated.

The results of the study will produce a list of the top 10 Canadian dementia research priorities, which we hope will help guide researchers and the organizations that fund them.

Whether you are living with the disease, a caregiver, a health-care provider, or even just interested in the issue – we want to hear from YOU.

Please take a few minutes to complete the study questionnaire, here: alzheimer.ca/researchpriorities.

Help spread the word by sharing the link through your personal and social networks.


Changer la manière de mener la recherche sur les maladies cognitives au Canada

Changing the way dementia research is done in Canada

Par les Dres Katherine McGilton et Jennifer Bethell

Les travaux de recherche sont habituellement engagés par les chercheurs. Nous voulons aider à changer cela.

Qu’est-ce que cela signifie? Les chercheurs déterminent généralement les travaux qui sont assez importants pour être financés et ceux qui sont assez bon pour être publiés. Les chercheurs sont-ils cependant conscients des enjeux les plus importants pour les personnes qui sont réellement concernées par leur travail? Pas toujours.

C’est pourquoi nous avons mis sur pied le Partenariat canadien pour l’établissement des priorités sur les maladies cognitives : une étude qui permettra aux Canadiens touchés par les maladies cognitives de faire entendre leur voix dans le débat sur la recherche. En impliquant des personnes ayant une expérience vécue, nous pouvons améliorer la manière de mener et de communiquer les travaux de recherche sur les maladies cognitives.

Les résultats de l’étude permettront d’établir une liste de 10 priorités de recherche sur les maladies cognitives au Canada, qui, nous l’espérons, pourront guider les chercheurs et les organisations qui les financent.

Que vous soyez atteint de la maladie, que vous soyez un aidant, un fournisseur de soins de santé, ou que la question vous intéresse tout simplement… nous voulons avoir VOTRE avis!

Veuillez prendre quelques minutes pour répondre au questionnaire : alzheimer.ca/prioritesderecherche.

Aidez-nous à faire passer le mot en diffusant ce lien dans vos réseaux personnels et sociaux.

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!

Adult_Day_Program_Forest-ParkMorrisburg_Curling_ClubMaxville_Lions_ClubChamplain_CCAC_CornwallCommuniy_Support_ServicesBoston_PizzaAlzheimer_Society_Board_Staff


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.
This election, support a National Dementia Strategy

This election, support a National Dementia Strategy

On October 19, 2015 the Canadian federal election will be held. And we want to reaffirm that every vote matters.
On May 6 of this year, our chance for a national dementia strategy becoming enshrined into Canadian law through MP Claude Gravelle’s private member’s bill C-356 was sadly defeated 140-139. Yes, by one vote.

When we hear about people who think votes don’t matter it’s disheartening, because regardless of context, every vote matters. Right now, each one of us gets to choose who we want to lead our country at a time when dementia is prevalent everywhere and answers are nowhere.

The Ontario Dementia Advisory Group (ODAG) is a group of people living with dementia who formed in Fall 2014 with the purpose of influencing policies, practices, and people to ensure that we, people living with dementia, are included in every decision that affects our lives.

When you have dementia, you worry about the time. How much time do you have before you: get worse; are moved into a long-term care facility; are unable to participate in committees; you die.

Yes, research is important. But so is our current living ability. We need an integrated national dementia strategy which will help support the provincial strategy here in Ontario and in the other provinces that have recognized dementia as a priority. Canadians had that within our reach. One vote stopped it.

ODAG worked very hard pushing for support of bill 356. Our effort included sending 80 individual emails to Ontario Conservative MP’s and helping the North West Dementia Working Group also send out 80 individual emails. The response was one aggressive email from a Conservative MP. This is beyond unprofessional and unacceptable. We are angered to hear that Liberal MP Yvonne Jones forgot to vote. Her vote would have passed the bill. And where were the NDP MP’s who decided not to go to work that day? Again, we needed just one vote.

This was not a straight split among parties. Nine Conservative MP’s did their homework and supported C-356. The Conservative government claimed the bill encroached on provincial health-care jurisdiction and instead put forth a motion that states dementia as a priority with no requirement for action from government.

MP votes matter. Citizen votes matter. It is paramount that people understand the importance of each vote and listen to what people who have firsthand experience of dementia want. People with dementia across Canada need the next federal government to take dementia seriously. The provinces are moving ahead on the development of local dementia strategies with a glaring absence of national leadership on the most pressing health and social challenge of our time. So we ask your candidates what they will do to support the people with dementia in your community and what their party will do for those affected across Canada.

Come October 19th, YOUR vote can send the message that as a Canadian citizen you demand a national dementia strategy. We need action and it’s in your hands.

Learn more about what you can do.

Sincerely,

From left to right, three members of the Dementia Advisory Group. Bea Kraayenhof, Bill Heibein and Maisie Jackson alongside MPP Indira Naidoo-Harris. The other two members are Mary Beth Wighton and Phyllis Fehr

Ontario Dementia Advisory Group (ODAG)

From left to right, three members of the Dementia Advisory Group. Bea Kraayenhof, Bill Heibein and Maisie Jackson alongside MPP Indira Naidoo-Harris. The other two members (not pictured) are Mary Beth Wighton and Phyllis Fehr

Introducing the 2015 Alzheimer Society Research Program (ASRP) Community Representatives / Des représentants de la collectivité participent au Programme de recherche de la Société Alzheimer (PRSA)

Introducing the 2015 Alzheimer Society Research Program (ASRP) Community Representatives / Des représentants de la collectivité participent au Programme de recherche de la Société Alzheimer (PRSA)

This year the Alzheimer Society celebrates 27 years of funding research through the Alzheimer Society Research Program (ASRP). The peer review panel meetings were held in February 2015 in Toronto, Ontario, and included the role of Community Representatives.

Community Representatives are members of the general public who are not currently involved with research who are given the opportunity to comment on the intent, purpose and on the clarity of the language used within the lay summaries of research applications that are received by the Society. Their involvement in peer review serves as a mechanism for public accountability by providing feedback on the ASRP peer review process.

It is with great pleasure that we introduce our 2015 Community Representatives:

“I was given the chance to understand the peer review process and the Alzheimer society’s involvement in research when I reviewed as a community representative. Being a part of the process meant a lot to me. The different abstracts read were very helpful to me because it gave me hope about my husband who has MCI, some of which may help him someday.  Also, the doctors we met were all very professional and ethical, open and friendly. As a caregiver I found the peer review process to be a learning experience; I got to learn about interesting abstracts and research about MCI/Alzheimer’s disease/Dementia.

Funding research on Alzheimer’s disease and dementia is important to me because there is a need for early diagnosis, understanding the cause of Alzheimer’s and treatment for the different types of dementias. Hopefully my husband and children and others will benefit from this research.”

-Lydia Watts, 2015 Community Representative, Biomedical Peer Review Panel

Lydia is the primary caregiver to her husband, Bruce, who has Mild Cognitive Impairment. She is a retired medical technologist and now enjoys volunteering and her hobbies include beading and taking online courses.

Bruce-and-Lydia-Watts
“This has been a rewarding and interesting experience. It is encouraging to hear how much research and development there is to control the advancement and perhaps eventually cure this devastating disease. Everyone we met at this conference are very friendly, open and encouraging people all working together with a similar goal – to beat this disease and improve our quality of life. Having an opportunity to comment on the research left me feeling heard and understood for the input I was given the chance to offer.

As a person living with dementia I found the peer review process to be an important and worthwhile endeavour and time well spent.

Funding research on Alzheimer’s disease and dementia is important to me because research is finding a way to control and eventually cure Alzheimer’s and MCI is important now and for future generations.”

-Bruce Watts, 2015 Community Representative, Biomedical Peer Review Panel

Bruce is living with Mild Cognitive Impairment and is supported by his wife Lydia and family. He is a retired medical technologist. His hobbies include photography.

 

Gail“This has been a positive and encouraging experience. I am impressed with the variety of proposals and the thorough and detailed process used to make decisions. The discussions were clear and lively and people were patient yet challenging.

As a person living with dementia I found the peer review process to be encouraging and thorough.

Funding research on Alzheimer’s disease and dementia is important to me because I hope they will find a cure. As well it will provide different and new ways to deal with the disease. I am particularly interested in long term care.”

-Gail Reid, 2015 Community Representative, Quality of Life Peer Review Panel

Gail is living with Alzheimer’s disease. She formerly worked as a social worker, magazine editor and writer.

 

Sandi“I am honoured and pleased to play a small part on this panel.As a person living with dementia I found the peer review process to be very formative and interesting.

Funding research on Alzheimer’s disease and dementia is important to me because with the aging population there is a great need.”

-Sandi Matchett, 2015 Community Representative, Quality of Life Peer Review Panel

Sandi is living with dementia. She is a former graphic designer who enjoys water colour painting and playing tennis.

**********************************************************************************************

Le Programme de recherche de la Société Alzheimer finance la recherche depuis maintenant 27 ans. Des représentants de la collectivité ont participé aux réunions des comités d’évaluation par des pairs, qui ont eu lieu en février 2015 à Toronto (Ontario).

Les représentants de la collectivité sont des membres du grand public qui ne participent pas actuellement à la recherche. Ils donnent leurs commentaires sur les intentions et les objectifs des projets de recherche soumis et sur la clarté du langage utilisé dans les résumés simplifiés. Leur contribution au processus d’évaluation par des pairs fournit un mécanisme de reddition de comptes auprès du public.

Nous sommes très heureux de vous présenter nos représentants de la collectivité pour 2015.

« À titre de représentante de la collectivité, j’ai eu la chance de comprendre le fonctionnement du processus d’évaluation par des pairs et les modalités de participation de la Société Alzheimer à la recherche. Cela a été très important pour moi de participer à ce processus. Les divers résumés que j’ai lus m’ont donné beaucoup d’espoir pour mon mari qui est atteint d’un trouble cognitif léger. Certains des projets soumis pourraient un jour ou l’autre lui venir en aide. Tous les médecins que j’ai rencontrés ont fait preuve d’éthique et de professionnalisme, en plus d’être très ouverts et sympathiques. Le processus d’évaluation par des pairs m’a permis d’enrichir mes connaissances à titre d’aidante. J’ai appris beaucoup à la lecture des résumés de recherche sur les troubles cognitifs légers, la maladie d’Alzheimer et les maladies apparentées.

Le financement de la recherche sur l’Alzheimer et les maladies apparentées me tient à cœur. Il est important d’établir rapidement le diagnostic et de trouver les causes de ces maladies afin de mettre au point un traitement. J’espère que mon mari, mes enfants et d’autres personnes pourront en profiter »

– Lydia Watts, représentante de la collectivité, comité d’évaluation par les pairs, volet biomédical

Mme Watts est l’aidante principale de son mari, Bruce, atteint d’un trouble cognitif léger. Technologiste médicale à la retraite, elle aime faire du bénévolat, broder et suivre des cours en ligne.

Bruce-and-Lydia-Watts
“« Cette expérience a été très intéressante et très enrichissante. L’ampleur des recherches menées actuellement pour combattre et guérir cette terrible maladie m’a beaucoup encouragé. Au cours de cette conférence, nous avons rencontré des gens sympathiques, ouverts et encourageants, qui travaillent tous ensemble à la réalisation d’un même objectif , à savoir améliorer notre qualité de vie et vaincre cette maladie. Cette chance que j’ai eue d’émettre mes commentaires sur la recherche m’a donné le sentiment d’être entendu et compris. À titre de personne atteinte d’une maladie cognitive, ma participation au processus d’évaluation par des pairs a été pour moi une activité très gratifiante.

Si nous voulons combattre l’Alzheimer et les maladies apparentées et en arriver un jour à les vaincre, il est important de poursuivre le financement de la recherche pour les personnes atteintes aujourd’hui et pour les générations futures. »

-Bruce Watts, comité d’évaluation par les pairs 2015, volet biomédical

M. Watt, technologiste médical à la retraite, est atteint d’un trouble cognitif léger. Il bénéficie du soutien de sa femme Lydia et de sa famille.

 

Gail« Cette expérience a été positive et encourageante. Je suis impressionnée par la variété des projets soumis et le processus minutieux mis en place pour prendre les décisions. Les discussions étaient animées et intéressantes, exigeantes et stimulantes.

La recherche sur l’Alzheimer et les maladies apparentées est importante pour moi parce qu’elle nous permettra de trouver de nouveaux moyens de combattre ces maladies et de découvrir un remède. Je m’intéresse particulièrement aux soins de longue durée. »

-Gail Reid, représentante du public 2015, comité d’évaluation par des pairs, volet qualité de vie

Mme Reid, qui est atteinte de la maladie d’Alzheimer, a été travailleuse sociale, rédactrice en chef d’une revue et écrivaine.

 

Sandi
« Je suis atteinte d’une maladie cognitive et je suis heureuse du petit rôle que je remplis au sein de ce comité.

Le processus d’évaluation par des pairs a pour moi été très formateur et très intéressant.

Le financement de la recherche sur l’Alzheimer et les maladies apparentées est important en raison des nouveaux besoins créés par le vieillissement de la population. »

-Sandi Matchett, comité d’évaluation par les pairs 2015, volet qualité de vie

Mme Matchett, représentante de la collectivité, est atteinte d’une maladie cognitive. Graphiste à la retraite, elle aime l’aquarelle et le tennis.

Nightmares or the Orange Pill

Nightmares or the Orange Pill

I’m tired this morning. The lingering affects of my nightmares stays with me.

One of the characteristics of Frontotemporal dementia is sleep disturbances. In addition to this I have been diagnosed with REM sleep behavioural disorder. This “… is a disorder in which you physically act out vivid, often unpleasant dreams with vocal sounds and sudden, often violent arm and leg movements during REM sleep.”
Normally you don’t move during REM sleep. About 20 % of your sleep is spent in REM sleep, the usual time for dreaming, which occurs primarily during the second half of the night. (Mayo Clinic)

REM sleep behaviour disorder often may be associated with other neurological conditions such as Lewy body dementia, Parkinson’s disease or multiple system atrophy.

I have had this disorder for about four years; that means prior to my diagnosis of Frontemporal dementia (FTD).
The other distinct characteristic of this is that you usually remember the nightmare(s) unlike many dreams.
Although I had a diagnosis, I choose not to take any suggested medications to help the symptoms. About a year ago, that changed as my nightmares were more frequent and frightening.

My doctor put me on 0.5MG of Clonazepam. Yes, medication from the “pam family.” Clonazepam often used to treat anxiety is also the traditional choice for treating REM sleep behaviour disorder.

However, in people with FTD, benzodiazepines have been associated with an increase in behavioural challenges and impair both memory and pschomotor skills. Use can result in reduced inhibition and impaired judgement. Simply put Clonazepam should be avoided.

I’m sure you can see the conundrum. To take or not to take. That is the question!

My daily medication is taken via a blister-pack. The clonazepam is not included in it. Every night as I take my blister-pack medication, I have to also open up the pill bottle for it.

Last night I choose not to take it. This is the second time this week. Why not? I keep hoping to take less medication. I keep thinking maybe I don’t need to take it anymore. But I’m promptly reminded why I do need to take it. Without it comes the nightmares. Terrible nightmares.

Although clonazepam is not suggested for people with dementia, I’ve made a choice to include the orange pill in my daily medication. Without it, the monsters come out and I can be heared yelling “Help me….”

Mary Beth Wighton is a blogger living with Frontotemporal dementia. If you want to subsribe to her blog or get in touch with her for any reason, send her an email (mbwighton@hotmail.ca).

fdd8c873df2214bMary Beth Wighton

Blogger and dementia advocate

1 million Dementia Friends wanted. Are you in?

1 million Dementia Friends wanted. Are you in?

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

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

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

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

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