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AAIC 2017 reveals great strides in research

AAIC 2017 reveals great strides in research

By Nalini Sen, Director, Alzheimer Society Research Program

I had the opportunity to attend this year’s annual Alzheimer’s Association International Conference (AAIC) in London, UK. This conference brings together some of the world’s leading researchers and clinicians in dementia treatment, detection and prevention. And with a record number of presentations—3300 in all—I have to admit, I was awestruck. Here are a few takeaways I would like to share with you:

Stress can age your brain

How we manage stress is even more important than was previously thought. Researchers at the University of Wisconsin studied 1320 people who had experienced stressful events like losing a job, getting a divorce or grieving the death of a family member. What did they find? A single stressful experience can age your brain by four years! Their findings reaffirm that healthy lifestyle habits matter.

Your brain needs a good night rest

Getting good sleep is as important as getting enough sleep. In a 516-person study, researchers from Wheaton College found greater instances of beta amyloid deposits in the brains of those with sleep disordered breathing and noticed that these deposits accumulated faster over time. Sleep disordered breathing is common. It includes hypopnea (under breathing) and apnea (not breathing) during sleep. While researchers need to do more investigative work, if we can better treat these sleep disorders, we may be able to reduce the risk of dementia or possibly delay the progression of the disease where it has already occurred.

Other presentations at AAIC reported on advancements in diagnosing dementia, which is a complicated and often a long process:

PET brain scans can improve diagnosis

For example, researchers from Sweden reported a 68 per cent increase in dementia diagnoses when PET brain scans were used in a small test sample of 135 people with memory problems. PET scans help identify whether amyloid plaques, the hallmarks of Alzheimer’s disease, are present in the brain. It does this by injecting a special dye with radioactive tracers into the arm which is then and absorbed by the organs and tissues.

Steps closer to a dementia blood test

In another study, Washington University researchers were able to measure amyloid beta in the cerebrospinal fluid (a fluid in the brain) with 89 per cent accuracy. Amyloid beta and tau protein which accumulate in the brain are triggers for Alzheimer’s disease. While more study is needed, a blood test for dementia may soon become available. This kind of test could identify those at risk of developing Alzheimer’s disease even years before symptoms appear.

One thing was clear at this year’s AAIC conference: Researchers around the world are working diligently to find a cure and identify new ways of diagnosing dementia earlier. And while they continue their search, there is now even more evidence that we can take steps to reduce our risk of developing dementia by living a healthier lifestyle.

Learn more about what you can do to keep your brain healthy at alzheimer.ca/brainhealth.

What’s love got to do with Alzheimer’s? A lot

What’s love got to do with Alzheimer’s? A lot

By Alex Westman

Mr. and Mrs. Alex and Donna Westman

My wife Donna and I met when we were just teenagers—she was 18, I was 16. Despite our youth, we understood early on that we had a deep connection. It was an amazing thing, really, and still is. There was magic in her and she saw something in me. I had a reputation as a bit of a scrapper, but she soon took care of that.

These days, I’m almost respectable. I’m a three-term municipal councillor in the Township of Lucan Biddulph, Ontario, and a 30-year veteran of the fire department. She made me who I am, and all these years later, Donna is still the love of my life.

Why am I telling you this? Because I want you to know that the love we share is the armour we wear when things get tough. And in 2009, things got really tough.

Mr. and Mrs. Alex and Donna Westman

That was the year she was diagnosed with Alzheimer’s disease. She was 47. I remember sitting beside her in the chair in the doctor’s office. I looked at her, and she looked at me, and I said, “we’ll get through this together.” And we have.

We’ve had help, of course. Donna’s sister Gale and our daughter Sara-Beth have been nothing short of amazing; their love for Donna shines through in everything they do for her.

My point, as I’m sure you are beginning to see, is that you can’t do this without love. This disease is big. It has teeth, and horns and claws. If we didn’t have love, this disease would destroy us both.

Now I don’t want you to think I live in some fantasy land. We’ve had our ups and downs. We’ve gone to marriage counselling. There were times we didn’t particularly like each other. But we always loved each other and we always knew we wanted to make it work.

Mr. and Mrs. Alex and Donna Westman

I remember vividly the spring following Donna’s diagnosis when we planted forget-me-not flowers in her garden. The garden has always been a special place where she tended to each plant as if it were the only one. The year before, we had planted daffodils for my parents who died of cancer. This spring, we wanted forget-me-nots for Donna.

When we finished, we stood back to admire our work. She put her head on my shoulder and I said, “It’s OK, sweetie. I’ll remember our life together for both of us.”

Mr. and Mrs. Alex and Donna Westman

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:

  1. What is the impact of stigmas associated with dementia and mental health issues on persons with dementia and their families? What are effective ways of reducing the stigma experienced by persons with dementia and their friends, family and caregivers/care partners?
  2. What can be done to support emotional wellbeing, including maintaining a sense of dignity, for persons with dementia?
  3. Among persons with dementia, what is the impact of early treatment on quality of life, disease progression and cognitive symptoms?
  4. How can the health system build and sustain the capacity to meet the health and social care needs of persons with dementia and their friend or family caregivers/care partners?
  5. What services, supports and therapies for friend or family caregivers/care partners of persons with dementia would improve or maintain health, wellbeing and quality of life for persons with dementia and their friends or family caregivers/care partners?
  6. After dementia is diagnosed, what would help persons with dementia and their friends, family and caregivers/care partners get the information, treatment, care and services they may need?
  7. What dementia-related skills and knowledge should health and social care providers have? What are effective ways of providing them with these skills and this knowledge? How can the number of health and social care providers who have these skills and this knowledge be increased?
  8. What enables the creation of dementia-friendly communities? What impact do dementia-friendly initiatives have on persons with dementia and their friends, families and caregivers/care partners?
  9. What would ensure implementation and sustainability of best practices for dementia care within and across health care settings, including effective approaches to providing person-centred care?
  10. Among persons with dementia, what are the effects of non-pharmacological treatments compared to pharmacological treatments on behavioural and psychological symptoms of dementia? Can non-pharmacological treatments replace, reduce or be used in conjunction with pharmacological treatments for managing behavioural and psychological symptoms of dementia?

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 :

  1. Quelles sont les répercussions de la stigmatisation entourant les maladies cognitives et la santé mentale sur les personnes atteintes d’une maladie cognitive et leur famille? Quels sont les moyens efficaces de réduire la stigmatisation vécue par les personnes atteintes d’une maladie cognitive, leurs amis, famille et aidants/partenaires des soins?
  2. Que peut-on faire pour soutenir le bien-être émotionnel, notamment le sentiment de dignité, des personnes atteintes d’une maladie cognitive?
  3. Quelles sont les conséquences du traitement précoce sur la qualité de vie, la progression de la maladie et les symptômes des personnes atteintes d’une maladie cognitive?
  4. Comment le système de santé peut-il développer et maintenir ses capacités de manière à répondre aux besoins des personnes atteintes d’une maladie cognitive et de leurs amis ou aidants familiaux/partenaires de soins en matière de soins de santé et de services sociaux?
  5. Quels services, appuis et thérapies à l’intention des amis et aidants familiaux/partenaires de soins des personnes atteintes d’une maladie cognitive permettent d’améliorer ou de maintenir la santé, le bien-être et la qualité de vie des personnes atteintes d’une maladie cognitive et de leurs amis, ou famille et aidants naturels/partenaires de soins?
  6. Une fois la maladie cognitive diagnostiquée, qu’est-ce qui aiderait les personnes atteintes et leurs amis, famille et aidants/partenaires de soins à obtenir l’information, les traitements, les soins et les services dont ils pourraient avoir besoin?
  7. Quelles compétences et connaissances devraient posséder les fournisseurs de soins de santé et de services sociaux dans le domaine des maladies cognitives? Quels moyens efficaces pourrait-on utiliser pour leur transmettre ces compétences et connaissances? Comment augmenter le nombre de fournisseurs de soins de santé et de services sociaux qui possèdent ces compétences et connaissances?
  8. Qu’est-ce qui facilite la création de collectivités amies des personnes atteintes d’une maladie cognitive? Quelles sont les conséquences de ces collectivités sur les personnes atteintes d’une maladie cognitive et leurs amis, famille et aidants/partenaires de soins?
  9. Qu’est-ce qui assurerait la mise en application et la viabilité des meilleures pratiques en matière de soins dans les établissements qui accueillent des personnes atteintes d’une maladie cognitive, y compris en ce qui a trait aux soins centrés sur la personne?
  10. Quels sont les effets des traitements non pharmacologiques à comparer aux traitements pharmacologiques sur les symptômes comportementaux et psychologiques des personnes atteintes d’une maladie cognitive? Les traitements non pharmacologiques peuvent-ils remplacer, réduire ou être utilisés en association avec les traitements pharmacologiques pour la gestion des symptômes comportementaux et psychologiques des 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.

Getting a dementia diagnosis – where do you start?

Getting a dementia diagnosis – where do you start?

It can start with something simple, like having trouble following your favourite recipe, or putting your car keys in the fridge. Maybe you’ve noticed small changes in your memory that are affecting how you do things day-to-day.

If you can’t quite remember things that should be straightforward for you, or if you notice changes in your mood or ability to communicate, make an appointment to see your family doctor right away.

Diagnosing dementia is a complex and difficult process. The first thing your doctor will do is try to rule out if it’s a treatable condition, like depression or even an infection.

By finding out what is causing your symptoms, you can get the right kind of care, support and access to treatments as early as possible.

Be prepared to start the conversation with your doctor:

  • Take the time to review the 10 warning signs of dementia. This is important because dementia is not a normal part of aging, nor is memory loss the only symptom.
  • Jot down the signs you’ve been noticing in yourself. When did these start? Have they changed over time? This information will keep your conversation focused.
  • Don’t be afraid to ask questions! Ask your doctor if your symptoms could be caused by another health condition.
  • Be sure to let him or her know about your medical history, including any medications you’re currently taking.
  • Ask your doctor to explain what tests you’ll need and how long these will take.
  • Will you need to see a specialist or a series of specialists? How will you need to prepare for these visits?

For more tips on getting ready for your doctor’s visit, download our Getting a diagnosis toolkit. It offers a whole list of questions to ask as well as detailed information about the warning signs and what you can expect during the diagnosis process.

And, if you’re concerned about someone else, we encourage you to pass our toolkit along.


Getting an early diagnosis helps you and your family take control of the situation, plan for future and live as well as possible with dementia. Learn more about the benefits of an early diagnosis

Dementia under 65: Where do they fit in?

Dementia under 65: Where do they fit in?

It was love at first sight when Sandy met Doug. They had both ended long marriages. They shared a passion for work, a love of travel, and had compatible plans for retirement. They clicked instantly.

The McLean’s married two years later and were in the midst of living the lives they’d dreamed of when Doug, a top executive, lost his job because of increased anxiety and diminishing cognitive abilities.

Things didn’t get better. Doug became depressed and delusional. He could no longer tell time or do math, and he struggled with his memory.

sandy-mclean2So they began looking for answers. Over the next three years, Doug and Sandy went to doctor after doctor without a definitive diagnosis. It wasn’t until a second neurological test that Doug was diagnosed with Lewy body dementia and immediately put on the right medications. Finally, his symptoms were manageable and the McLean’s were able to fulfill some of their travel dreams.

At 60, Doug is fit and physically active, and is keen to continue life to the fullest. Being active is good for him, but it’s a challenge for Sandy. Doug needs safe, non-judgmental environments, and many activity programs for people with dementia are for seniors 65 and older. Doug doesn’t feel like he fits in.

Sandy is his 24/7 caregiver and advocate. She makes sure Doug keeps busy and plans all of his activities. But that doesn’t leave much time for herself. And, that dream of moving into a house they built outside of their city has been gently let go.

The Alzheimer Society of Manitoba has been a lifeline for Sandy and Doug, offering activities, resources and support services. But we can do so much more.

Donate today so that we can better support caregivers like Sandy and fund vital research to eliminate this disease and its impact on Canadians like Doug. Because it’s not just their disease. It’s ours too. #InItforAlz

DONATE

 

It’s not always Alzheimer’s: One couple’s story of getting the ‘right’ diagnosis

It’s not always Alzheimer’s: One couple’s story of getting the ‘right’ diagnosis

David, a kind, quiet and intelligent man, connected to his family, with lots of friends, and very active in his community, started to become withdrawn and apathetic. His wife Wendy knew something wasn’t quite right.

The Hughes sought help early, but much time passed before they found out that David has Lewy body dementia.

Wendy became an advocate for her life partner. David was initially diagnosed with Parkinson’s and Alzheimer’s disease. As she did more research, she wondered about the symptoms. David’s memory loss fluctuated, rather than declined. And what Wendy noticed most was not so much memory loss, but that his personality had changed significantly.

After several years of persistence, David was finally diagnosed with Lewy body dementia.

Their story is a reminder that getting a diagnosis can be a long and uncertain process. Know the symptoms of dementia. Get help as soon as possible. And play an active role in seeking out the best health care options for you and your family.

David’s new status came as somewhat of a relief for the couple and Wendy continues to learn as much as she can about Lewy body. Now they have access to the right treatments and support, and she and David can get on with their lives.

“You can’t do this on your own, and I’ve realized it’s perfectly okay to ask for help,” says Wendy. She has reached out to her local Alzheimer Society (Hamilton Halton) and made a point to seek out new friends. Socializing gives her a much-needed break and allows her to better care for David.

Each year 25,000 Canadians are diagnosed with dementia. Wendy believes everyone needs to learn more about Alzheimer’s and other dementias-“awareness can only lead to better understanding and acceptance of this disease.”

This January, you too can make a difference. It’s not just their disease. It’s ours too. #InItForAlz

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Il NE S’AGIT PAS TOUJOURS DE L’ALZHEIMER : L’HISTOIRE D’UN COUPLE EN QUÊTE DU « BON » DIAGNOSTIC

Wendy & David Hughes
David est un homme sympathique, calme et intelligent. Il a toujours été attaché à sa famille et fidèle à ses amis. Lui qui était si actif socialement, il a commencé à devenir renfermé et apathique. Sa femme, Wendy, a su que quelque chose n’allait pas.

Les Hughes ont rapidement été cherchés de l’aide, mais beaucoup de temps s’est écoulé avant de découvrir que David était atteint de la maladie à corps de Lewy.

Wendy a pris fait et cause pour son compagnon de vie. David a tout d’abord reçu un diagnostic de Parkinson et de maladie d’Alzheimer. Au fil de ses recherches, Wendy a commencé à douter. La mémoire de David subissait des fluctuations plutôt qu’un déclin. Mais, par-dessus tout, ce n’était pas tant sa mémoire qui était en cause, mais sa personnalité qui avait énormément changé.

Après plusieurs années d’attente, la maladie à corps de Lewy a finalement été diagnostiquée à David.

Leur histoire nous rappelle que le diagnostic est parfois établi à la suite d’un processus long et incertain. Informez-vous sur les symptômes des maladies cognitives. Obtenez de l’aide aussitôt que possible. Et jouez un rôle actif dans la recherche des meilleures options de soins de santé pour vous et votre famille.

Le couple a accueilli avec un certain soulagement le nouveau statut de David. Pour sa part, Wendy continue de se renseigner le plus possible sur la maladie à corps de Lewy. Ils ont maintenant accès à des traitements adéquats et à du soutien, et ils peuvent poursuivre leur vie.

« Vous ne pouvez pas tout faire par vous-même et j’ai réalisé qu’il est parfaitement acceptable de demander de l’aide », déclare Wendy. Elle a communiqué avec sa Société Alzheimer locale (Hamilton Halton) et s’est promis de se faire de nouveaux amis. Le fait de socialiser lui donne le répit dont elle a tant besoin et lui permet de mieux prendre soin de David.

Chaque année 25 000 Canadiens reçoivent un diagnostic de maladie cognitive. Wendy croit que tout le monde devrait s’informer sur la maladie d’Alzheimer et les maladies apparentées. « Être bien renseigné nous aide à mieux comprendre et à accepter ces maladies. »

En janvier, vous pouvez vous aussi apporter votre contribution. Parce que ces maladies ne concernent pas seulement les personnes atteintes, elles nous concernent tous. #TousContreAlz.

Research Video Series: Introducing Dr. Rahel Rabi

Research Video Series: Introducing Dr. Rahel Rabi


At the University of Toronto, Rahel Rabi’s research focuses on diagnosis and detection, where she is working hard to identify the cognitive biomarkers of mild cognitive impairment (MCI). In this video, Rahel describes her research funded by the Alzheimer Society Research Program in her own words.

Scientists have made remarkable strides in understanding Alzheimer’s disease, and with recent advances in research involving novel techniques, we can work towards finding a cure.
-Rahel Rabi

Rahel Rabi

Rawlinson Post-Doctoral Fellowship in Alzheimer’s Disease (Quality of Life) – $100,000
Project: Stroop event-related potentials as neurocognitive markers for amnestic mild cognitive impairment
This project is funded by the Rawlinson Family.

Read about more of our grants and awards recipients here.

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.

Why I work for the Alzheimer Society

Why I work for the Alzheimer Society

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

What is your connection to Alzheimer’s disease?

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

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

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

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

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

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

What support, if any, did you access?

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

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

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

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

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

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

Read more stories like Elizabeth’s.

elizabeth-barrieElizabeth Barrie

First Link® outreach worker

Alzheimer Society of Oxford

I have what? Frontotemporal dementia?

I have what? Frontotemporal dementia?

As I drove us to the 9:00 a.m. meeting with Dr. Didyk a geriatrician, many thoughts ran through my head. Here we go, another appointment with another doctor. One more stupid test. I hate when they ask me to write down the clock time because I know what time it is. I’m looking forward to my Timmy’s coffee.

Once Dawn and I arrived at the hospital, we grabbed a coffee and headed off to the waiting room of the gerontology area. I asked myself, “How can I only be 45 years old and be sitting here?”

Within minutes we were led into the examination room and the nurse arrived. Same old, same old. It really bothered me that after years of battling serious depression, memory loss and behavioural changes, no one has provided me with a sound medical diagnosis. That was all about to change.

Nurse Julie began the mini–mental state examination (MMSE). Sure enough, there were the questions about time. I uttered to her that I don’t have a problem with time. We continued on. Finally, the last of 30 questions lay in front of me. My mind was tired and it had become hard to stay focused. I didn’t have the brain power to answer any more questions – we were finished. After asking Dawn and I a few more questions about my health, she disappeared to tally the results.

Soon, the door opened and Nurse Julie appeared with Dr.Didyk. Everyone sat down.
The doctor immediately started to discuss the results of the MMSE. Six months ago, I had taken the same test and scored 24. Today, my score was 18 – an obvious, significant decrease. I’m not sure of all the things she discussed, but I do remember this: “You have Frontotemporal Lobe Dementia or FTD.”

Whoa…. no one has ever used those words before. I knew I was cognitively impaired but what was this FTD thing?

The doctor went on to explain more about FTD including that my amount of education will help. More blurred talk. FTD is a rare form of dementia and is incurable. Dawn and I looked at each other. Could this really be happening? More blurred talk. You will not be able to drive anymore effective immediately.

Whaaaattttt? O.K. This is now serious. More blurred talk.

I stopped hearing the rest of the conversation. The only thing I could hear in my head was, “You can’t drive.” You don’t have a driver’s license!” I started to see red. I flew out of my chair and threw some papers in the garbage. I stormed out of the office trying my best to slam the door shut. I tried a few times.

I continued on to the hospital hall and stopped. I began to pace up and down mumbling to myself. How could this be? How can I have dementia? How can my license be removed? How can my license be removed? How can I have dementia? How can my license be removed? How can my license be removed? How can I have dementia? My head was in a swirl.

I continued to pace. My cell phone rang and it was Dawn asking where I was, if I was o.k. And for me to come back into the room. No! I’m not coming back into the room because I don’t want to hear anymore. I continued to pace.

Eventually, Dawn came out of the examination room and approached me in the hall. We said nothing and I handed my car keys to her. We headed out towards the car. Dawn proceeded to take my usual seat at the wheel and I took her usual seat as a passenger.

FTD had changed our lives forever.

This article was previously posted on the Alzheimer Society of London-Middlesex blog. Read more from Mary Beth.

fdd8c873df2214bMary Beth Wighton

Person living with dementia