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Category: Diagnosing Dementia

Driving with Dementia

Driving 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.”

Driving had always been an important part of my mother’s life. She loved to tell stories about her adventures as a young woman chauffeuring friends from her home in Campbellford to Peterborough, Ontario to watch the Petes play hockey, or taking a carload of women to Buffalo, New York, to shop.

After she was married, my father’s poor eyesight meant that my mother was the main driver in the household and her ability to drive assumed an even greater significance.

My mother was devastated when her doctor notified the Department of Motor Vehicles that she had dementia.  After her driver’s license was suspended, she refused to attend social gatherings and resented that she needed me to take her grocery shopping or to the drugstore.  Ordinary tasks became an ordeal for both of us. She soon became obsessed with the notion that her doctor had acted in bad faith by reporting her illness and she was determined to have her license reinstated.

One day, she told me that she would be able to drive again if she passed a standard road test. I knew that information wasn’t accurate but I agreed to take her to a Driver Licensing office for the test.

When we arrived, I sat at the back of the room and waited while my mother approached the front counter.  A clerk typed information into a computer and then gently shook her head.  She explained that there was a detailed process my mother would have to follow if she wanted to get her driver’s license back.

“But the doctor was just acting out of spite,” my mother protested.

By the next day, my mother was furious with me. According to her, just as the clerk was about to return her driver’s license, I held up a sign declaring that she had dementia. The clerk saw the sign and immediately withdrew the license. I was stunned.

At the time, I didn’t understand that driving a vehicle meant more to my mother than a way to maintain her independence. The ability to drive was an integral part of her identity and losing her license was another way that dementia was affecting the life she had long known.

People with dementia should be allowed to drive for as long as possible but when their ability is impeded and they pose a risk to themselves or others their license must be suspended. Contact your local Alzheimer Society to learn how you can support your loved one through this significant life change and help them stay connected with their community.

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.

Forgetting an Unforgettable Recipe: Mamie’s Butterscotch Raisin Cookies

Forgetting an Unforgettable Recipe: Mamie’s Butterscotch Raisin Cookies

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.”

When I was growing up, my mother’s raisin cookies were a family favourite and making them was a regular Saturday afternoon mother-daughter event.

Instead of adding whole raisins to the butterscotch-flavoured dough, my mother used an old-fashioned meat grinder to mince the fruit. I would turn the handle on the grinder as she fed raisins into the mouth of the machine.  We would take turns stirring the thick batter and sing Patty cake, patty cake, baker’s man, as we patted the dough into a log.  When the cookies were in the oven, we would sit at the kitchen table and sip milky tea while we waited for the timer to chime.

Shortly before my mother was diagnosed with dementia, I asked her for the cookie recipe.  Her forehead wrinkled.

“I don’t know what you’re talking about, Elizabeth,” my mother snapped when I described the cookies, and how we used to make them, for the third time.

I was surprised and hurt that my mother didn’t have any recollection of the special times we had shared baking raisin cookies.  Although I dismissed her lapse of memory as “nothing to worry about”, the incident lingered at the back of my mind.

Sometime later, my mother’s geriatric clinician explained that forgetting the details of a significant event is part of the normal aging process, but forgetting the event ever happened is likely a symptom of something more serious.  I finally realized that my mother’s failure to remember our baking sessions was a symptom of her disease and not a sign that she hadn’t enjoyed our time together.

My mother’s loss of memory often left me confused and frustrated.  Looking back on my experience, I know that I would have been better equipped to deal with her symptoms if I had been familiar with the differences between age-associated memory impairment and dementia.

Not every memory lapse is a cause for concern but if you have questions about a loved one’s memory, you should consult your local Alzheimer Society for more information about Alzheimer’s disease and dementia.

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.

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.

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.”

 

Questions for your doctor when seeking a diagnosis

Questions for your doctor when seeking a diagnosis

My mother is 82 years of age and she is becoming much more forgetful. She constantly repeats herself and forgets everything that I say. She is also more argumentative lately and when I ask her what is wrong, she gets upset and says she is fine. What can I do?

Many families are forced to confront difficult situations like this when their aging parents display signs of dementia.  It’s best to see your doctor for help and a diagnosis.

According to dementia consultant and expert Marg Eisner, having family members accompany the person experiencing these symptoms to appointment is critically important. “Family members can give the doctor specific information about the symptoms, when they began and the progression of memory loss,” she says.

Doctors need this information to make an accurate assessment because symptoms can have many causes. “It could be that the person has some other medical condition causing these changes,” Marg explains.  “But if a diagnosis of dementia is the eventual outcome, the sooner one has this knowledge the better.”

Besides giving the doctor accurate, relevant information, you can make the appointment even more helpful for you and the person with dementia by making sure you understand the following:

  1. What specific changes or symptoms concern you the most?
  2. Do you need any further explanation of medical terms used?
  3. What tests will be performed and how long it will take to get a diagnosis?
  4. Are there any other conditions that could be causing these symptoms or making them worse, e.g. diabetes, heart disease?
  5. Do you need to be referred to a specialist?
  6. What treatment options are available and what are their side effects?
  7. When should you come back for another visit?

 

The Alzheimer Society has many resources and programs that can also help. To find a Society close to you, or to learn more about how to prepare for a doctor’s appointment, visit www.alzheimerontario.ca.

Early diagnosis keeps your life from unravelling – January is Alzheimer Awareness Month

Early diagnosis keeps your life from unravelling – January is Alzheimer Awareness Month

Did you know that up to 50% of Canadians with dementia are waiting too long to get a diagnosis?

For many people, fear and stigma become huge barriers to seeking help. In fact, a recent Nanos survey found that 60% of the Canadians polled said it would be harder to disclose if they, or someone close to them, had Alzheimer’s disease compared to other diseases.

But if you have been experiencing the symptoms, talking to your doctor could keep your life from unravelling. Getting a timely diagnosis can mean:

  • Access to information, resources and support through the Alzheimer Society that can help people with dementia to focus on their abilities and stay independent in their homes and communities for longer
  • Access to medications that, while not effective for everyone, have the greatest impact when they are taken early
  • An opportunity to plan ahead and to explain the changes happening in their life to family and friends.

74% of Canadians know someone with dementia and as our population ages more and more Canadians will continue to develop the disease. While the news can be devastating, early diagnosis brings relief to families, gives control over the situation and adds more years of living active and fulfilling lives.

Visit www.earlydiagnosis.ca today for more information, including printable checklists and tip sheets on:

  • detecting the signs of dementia
  • understanding the benefits of a diagnosis and
  • preparing for a doctor’s visit.

Then, visit us on Facebook or Twitter to get involved and share your story.