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Staying Connected and Living With Dementia

Staying Connected and Living With Dementia

Follow us, as Elizabeth Murray tells the moving story of her mother’s battle with dementia. In this blog series, Murray explores every part of the experience of caring for someone with dementia, sharing her memories and insights from it all. Her words serve as a great reminder of the many ways dementia affects our lives, and the lives of our loved ones.

My mother was embarrassed when she was diagnosed with dementia.  Rather than tell her friends about her illness, she stopped meeting them for lunch or coffee and declined their invitations to concerts and other gatherings. As her disease progressed, she became angry and paranoid. She withdrew from the church group that she had belonged to for over thirty years and refused to attend my son’s hockey games, school concerts and swimming lessons as she had always done.

My friend’s mother, Mrs. McEwan, was also diagnosed with dementia but she wasn’t embarrassed by her diagnosis nor did her symptoms include anger and paranoia. With the help of her friends, Mrs. McEwan continued to attend her book club and ladies auxiliary even when she was no longer able to fully participate in the meetings. She and her husband went to the symphony and the ballet and they joined organized tours to avoid the potential confusion of independent travel.

Over time, her memory gradually declined, until she was dependent on others to help her complete simple tasks. Despite this, she was always cheerful and she accepted her disease and the limitations it imposed with grace.

My mother and Mrs. McEwan had dramatically different experiences when they were living with dementia. Mrs. McEwan’s psychological well-being was fostered by staying connected with her community and participating in activities that she had always enjoyed. She had a positive attitude about her life, despite her limitations.  My mother resented her illness. She cut herself off from her friends and family, and felt isolated, lonely and depressed.

We can all play a role in reducing the stigma of dementia and making the lives of people who have the disease as rich as Mrs. McEwan’s. Educating ourselves about the symptoms and learning how to offer appropriate assistance will help people with dementia feel supported in our communities.  By fostering environments of inclusion in organizations, clubs and faith groups, as well as in common spaces like the library, coffee shop or grocery store, we can create environments that encourage their independence.

Together, we can work to create communities that are dementia-friendly and help everyone who is diagnosed live the quality of life they deserve. To learn more about how you can help contribute to a dementia-friendly community, contact your local Alzheimer Society.

Written by:

Writer Elizabeth Murray
Elizabeth Murray
Retired lawyer and the author of Holding on to Mamie:  My Mother, Dementia and Me.
For more information about Elizabeth and her story visit www.holdingontomamie.ca.

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

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‘We’re not running and hiding’: Couple confronts possibility of dementia head-on

‘We’re not running and hiding’: Couple confronts possibility of dementia head-on

When you’ve seen the effects of dementia before, noticing even minor changes in your cognitive abilities can be alarming. Both Yvon and Susanne lost their mothers to Alzheimer’s, so they’re no strangers to the disease.

When Susanne began to show small signs of forgetfulness a few months ago, they immediately went to their doctor. After a series of tests, Susanne was diagnosed with Mild Cognitive Impairment (MCI), which can be—although not always—a precursor to dementia. Susanne was given appropriate medication and is showing signs of improvement. MCI is “just barely on the scale” of neurological impairment, but because of their shared family histories of Alzheimer’s, the couple is not taking any chances.

Yvon has made changes in his life now that he’s supporting a partner with MCI. He’s learning different ways of saying and doing things, taking on new tasks, and researching as much as he can about cognitive impairments and dementias. He’s reading about the importance of nutrition, exercise and mental activities. He’s also grateful for the support of friends and neighbours.

And MCI is not their only health concern. Susanne also lives with lupus and Yvon has diabetes and glaucoma in his right eye. To help manage these multiple health concerns, Yvon and Susanne are looking for new supported living arrangements to relieve some of the stress of handling everything on their own.

They’re hopeful. Being proactive about the disease gives Yvon a sense of clarity and calmness. He encourages Susanne in the kinds of activities that keep her engaged and active – doing household finances and crosswords, knitting and reading. They’re learning everything they can about the disease and have joined a support group, one of many programs available at the Alzheimer Society of Cornwall.

“The more education people have, the better prepared they can be about what’s ahead,” says Yvon. That’s why supporting the Alzheimer Society’s work in raising awareness and funding research is so critical for couples like Yvon and Susanne. Making a donation helps. Because it’s not just their disease. It’s ours too. #InItforAlz

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« On ne peut pas se sauver de la réalité » : Un couple fait face à la possibilité de se voir confronter à la maladie d’Alzheimer

Yvon and Susanne Brazeau

Même des changements mineurs dans nos capacités cognitives peuvent nous inquiéter quand on connaît les conséquences de la maladie d’Alzheimer. Cette maladie a emporté la mère de Suzanne et celle d’Yvon. Tous deux savent très bien de quoi il en retourne.

Il y a quelques mois, Suzanne a commencé à montrer des signes de perte de mémoire. Tout de suite, elle a consulté son médecin. Après une série de tests, un diagnostic de déficit cognitif léger lui a été confirmé. Même si cela n’est pas toujours le cas, ce diagnostic pourrait être un signe avant-coureur de maladie cognitive. Suzanne prend les médicaments recommandés pas son médecin et montre maintenant des signes d’amélioration. Le déficit cognitif léger est un trouble neurologique mineur, mais, en raison de ses antécédents familiaux, Suzanne ne veut courir aucun risque.

Yvon a modifié un peu son style de vie depuis qu’il prête assistance à sa conjointe. Il apprend de nouvelles façons de dire et de faire les choses, prend en charge de nouvelles tâches, et s’informe du mieux qu’il le peut sur les questions entourant les déficiences et maladies cognitives. Ses lectures lui ont fait prendre conscience de l’importance de la nutrition, de l’exercice et des activités mentales. Ses amis et ses voisins le soutiennent et il en est très reconnaissant.

Mais ce n’est pas tout. Suzanne est également atteinte du lupus et Yvon a le diabète, en plus d’un glaucome à l’œil droit. Pour ne plus être livrés à eux-mêmes dans leur combat contre la maladie et pour évacuer un peu de stress, Yvon et Suzanne tentent actuellement de trouver des services d’aide à la vie autonome.

Par-dessus tout, ils gardent l’espoir. Grâce à son attitude proactive face à la maladie, Yvon éprouve un sentiment de clarté et de calme. Il encourage Suzanne à rester active en participant aux finances du ménage et en faisant des mots croisés, du tricot et de la lecture. Ils apprennent tout ce qu’ils peuvent sur la maladie et font maintenant partie d’un groupe de soutien, qui est l’un des nombreux services offerts par la Société Alzheimer de Cornwall.

« Plus on s’informe, mieux on se prépare pour l’avenir », déclare Yvon. C’est pourquoi il est si important de soutenir les initiatives de sensibilisation du public et de financement de la recherche de la Société Alzheimer. Votre contribution est importante parce que les maladies cognitives ne concernent pas seulement les personnes atteintes. Elles nous concernent tous. #TousContreAlzheimer.

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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.

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!

Research Video Series: Introducing Stephanie Chamberlain

Research Video Series: Introducing Stephanie Chamberlain


Trained as a personal support worker in long-term care, Stephanie Chamberlain is currently pursuing her PhD at the University of Alberta. There, she is assessing the impact of court-appointed public guardianship on the health and care needs of long-term care residents. Stephanie is the Alzheimer Society Research Program’s first Revera Scholar.

It is essential that we improve quality of life and quality of care to those with Alzheimer’s disease and dementia because how we treat a life that has been lived is reflective of our essential humanity.
-Stephanie Chamberlain

Stephanie Chamberlain

Revera Scholar Doctoral Award in Alzheimer’s disease (Quality of Life) – $66,000
Project: Unrepresented older adults: The impact of public guardianship on resident health and care needs in long-term care

Read about more of our grants and awards recipients here.

It’s easier than you think to be a superhero! Make your Will today.

It’s easier than you think to be a superhero! Make your Will today.

Make Your Will Today!

 

At the Alzheimer Society, we believe completing your Will and Powers of Attorney for Personal Care and Property makes you a Super Hero. Why? You are putting the needs of others before yourself and protecting what’s important.

Death and taxes – two certainties?

While working at Royal Trust as a Will and estate planner, many clients would sit in a chair across from me and blurt out … there are two certainties in life:  death and taxes.  For years, even centuries, such statements were met with resignation.

However, most Canadians may be surprised to learn there is a way to avoid taxes. It all depends on the wording of your Will.  Did you know that you can help your favourite charity and help your estate save taxes?  How?

The Rules

When you donate to your favourite charity, like the Alzheimer Society of Ontario in your Will, the donation is considered to be made immediately before your death.  Similar rules apply when you name charitable organizations as the beneficiary of your RRSP, RRIF or TFSA, or of a life insurance policy.  On your final tax return, your Executor can claim all charitable donations made in the year of your death.  These include donations in the Will and those directly transferred to charities from RRSPs, RRIFs, TFSAs, or life insurance policies, and any carried forward donations from the previous five years that were not claimed, to a maximum of 100% of your net income.  Any excess can be claimed on the tax return for the previous year, again to a maximum of 100% of your net income for that year.

Depending upon your net income in the year of death and the previous year, and the total donation amount, taxes paid in the year before your death may be rebated and taxes owed in the year of death may be eliminated.

What?  Taxes eliminated and rebated?

So let’s see how that works!

The Government Rewards YOU!

TAX ELIMINATION AND A REBATE TOO!

Mr. Generous gives a charitable Will bequest in his Will  totaling =                        $50,000
Tax payable—Final year:

Mr. Generous’ net income in year of his death =

 

$40,000

Minus: Tax credit for donation (100% x $40,000 net income) =

$10,000 to be used against previous years taxes

$40,000
Tax payable =             $  0,000.00
Previous year:

Mr. Generous’ net income in year before death =

 

$  36,000

Tax paid in previous year = (assuming 35% rate x $36,000) = 12,600
Donation carried back to previous year

($50,000 bequest – $40,000 tax credit used in final year) =

 

$  10,000

Taxable income = $36,000 – $10,000 donation = $  26,000
Tax payable (assuming 35% rate x $26,000) = $   9,100
Taxes rebated to estate ($12,600 – $9,100) =            $  3,500
Benefits:

The tax for the year of death has been eliminated. The tax for the previous year, which had already been paid, is reduced and rebated.

 

Imagine the social impact – if all Canadians did their Wills (only 50% of us do) and included a charitable bequest in their Wills! Giving to a charity like the Alzheimer Society in your Will would benefit our world significantly while ensuring that your estate eliminates unnecessary tax burdens – a win – win!

November is Make a Will Month.  And this month YOU could be our Super Hero!   By doing your Will and including a charitable gift you can save taxes, protect those you care about and help save the world from dementia!    Act now!  Click here to request your free Estate Planner and Guide or call Kristy Cutten at 416-847-8915.

 

Written by:

Colleen Bradley

Colleen Bradley
Chief Development Officer, Planned Giving
Alzheimer Society of Ontario

 

Taking a Step towards Change: A Conversation about Stigmatizing Language

Taking a Step towards Change: A Conversation about Stigmatizing Language

convention-1410870

We have all had a bad day at work. Work-load, timelines, and frustration have driven us “crazy” and/or “mad”. Sometimes these frustrations or situations lead us to become “agitated” or “aggressive”.

Sometimes the mere act of running into someone can be defined as “crazy”: “It’s crazy running into you here!”

But sometimes (more often than not) these words and others are used to describe behaviours associated with dementia. Stigmatizing language and negative communication tends to be used in response to behaviours associated with dementia, which increases focus on the illness while reducing the person with dementia to a series of labels and symptoms.

On Tuesday July 26th, Alzheimer Society of Ontario partnered with brainXchange to host a think tank to discuss the use of stigmatizing language to describe behaviours associated with dementia and start the conversation about how we can better communicate using non-stigmatizing language. This was an excellent opportunity to bring together researchers, clinicians, and persons from the community to consider this very important issue. Many who joined the discussion were in Toronto that week attending the 2016 Alzheimer’s Association International Conference, including Dr. Dallas Seitz (Providence Care), Judith Wahl (Executive director of ACE) and David Kent (ORAC Board Member), amongst others.

Bringing together 20 people with a shared interest in this topic was all it took to get some excellent and constructive conversation started.

The think tank involved three parts:

  1. Facilitated discussion and creation of case scenarios to consider the current and future state of this issue.
  2. The creation of guiding principles and features for non-stigmatizing and patient-centered terminology.
  3. A brainstorm of next steps and how we can work together to respond to this issue going forward.

 

All in all, the think tank was a great success because it represents one of many steps we can take towards changing the current state of communication and dementia. At the Alzheimer Society of Ontario, we want to continue the course of change and will be organizing more opportunities to discuss and consider this important topic in dementia going forward.

Visit us at www.alzheimerontario.ca to learn more about Alzheimer’s disease and dementia.

The Ontario Dementia Advisory Group challenges us to think differently about a diagnosis

The Ontario Dementia Advisory Group challenges us to think differently about a diagnosis

Left to right: Bill Heibein, Senator Kelvin Kenneth Ogilvie, Phyllis Fehr, Bea Kraayenhof, and Senator Nancy Greene Raine.
Left to right: Bill Heibein, Senator Kelvin Kenneth Ogilvie, Phyllis Fehr, Bea Kraayenhof, and Senator Nancy Greene Raine.

In February 2016, the Standing Senate Committee on Social Affairs, Science and Technology started investigating the issue of dementia in Canada , with the aim of producing a final report by November 30, 2016. They’ve met with myriad witnesses representing many aspects of the complex network of health agencies, experts and researchers who can lend  insights into the state of dementia. Executive directors, doctors, and other professionals helped to guide and inform the course of the study as Witnesses.  But on May 18, 2016, the Committee heard testimonies that may be the most valuable yet.

A shift in the study of dementia in Canada

Members of the Ontario Dementia Advisory Group (ODAG)—each one of them living with a dementia diagnosis—stood as Witnesses. For the first time since the study began, the Senate Committee heard from people who are living—and living well—with the disease.

People like Phyllis Fehr, Bill Heibein, Bea Kraayenhof and Mary Beth Wighton are learning to navigate life with a diagnosis with few resources at their disposal.

We go through these things almost every day. We get frustrated when dementia strategies are started and we’re not even asked to contribute. We should be front and centre at the table doing it with you. That’s what we feel is best.”
– Bea Kraayenhof, Board Member, Ontario Dementia Advisory Group (ODAG)

The impact of an early diagnosis

The most important contribution that ODAG members offer to this conversation is their ability to break through the stigma of dementia. The significance of ODAG’s presence at the Senate is huge:  their passionate advocacy, strong community spirit, and lived understanding of the impacts of the disease set a new precedent.

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.”
-Mary Beth Wighton, Board Member, Ontario Dementia Advisory Group (ODAG)

Earlier diagnoses and the availability of ways to slow disease progression challenge many of the established stereotypes of a dementia diagnosis. Meanwhile, the systems in place—from medical to social services to public support—are geared toward those at the late stages of the disease’s progression.

While ODAG members Phyllis, Bill, Bea and Mary Beth come from different parts of Ontario, have unique personal histories, and even different diagnoses, they  have one thing in common: They each received a diagnosis in the early stages of the disease. An early diagnosis is still one of the best ways to mitigate the impact of the disease.

“We are a group that were checked early, and that’s the key. That’s where you’re going to find change will happen. The earlier we can catch the disease process and put them on meds, even though the meds aren’t a cure, it slows the progress down. That then allots us time to prepare so that we can stay in our homes and do things for ourselves longer than having to go into care homes.”
– Phyllis Fehr, Board Member, Ontario Dementia Advisory Group (ODAG)

What we learn by listening to those living with a diagnosis

Each ODAG member also spoke to elements that the health-care system is currently missing.

For Phyllis, education for practitioners that will empower them to deliver a diagnosis is critical. Mary Beth spoke of  dementia care in Canada as a series of health-related silos that lack the ability to provide social support to better manage the total havoc that a diagnosis can wreak in one’s life. Bea spoke about the importance of meaningful occupation for people living with a diagnosis, while Bill—now a full-time farmer—showcases the fact that one can continue to contribute in meaningful ways even with a diagnosis.

I’d like to say that one of the things I think we can really do is … be seen and heard in public. When I was first diagnosed, the first thing [I wanted to do] was just withdraw and hide. The more we can be seen, the more people who have just been diagnosed and start to pay attention to what’s happening, hopefully they’re going to get the self-confidence back to be able to go out and participate.”

– Bill Heibein, Board Member, Ontario Dementia Advisory Group (ODAG)

The Chair of the Committee, Senator Kelvin Kenneth Ogilvie, adjourned this remarkable meeting with powerful words that reveal the deep impact of this meeting, saying, “The thing that has struck me … is that because we have examined so many aspects, perhaps from a clinical point of view with experts and so on up to this point [….] We have an enormous amount of background information to which you have added the complete experience. You bring it all together — the context, the application and the things that are missing.

“We have heard you loud and clear today. […] I can’t say enough as to how you have clarified it for us. Your examples have illustrated many of the facets that are critical.”

 

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.