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You are not alone!

You are not alone!

Life can change direction drastically when a family member or close friend is diagnosed with a chronic health condition like Alzheimer’s disease, another form of dementia, multiple sclerosis, or Parkinson’s disease. Your suspicions that something is wrong have been confirmed; now, you have to figure out how to support the person. You may have never had personal experience with any of these conditions. Suddenly, you find yourself going along to doctor’s appointments and feeling as if the doctor is speaking a whole other language. If you’ve never had to be a caregiver before, you probably haven’t learned a very important part of a caregiver’s vocabulary: “I need help.”

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Life with young onset dementia: What you need to know

Life with young onset dementia: What you need to know

What comes to mind when you think of a person with dementia? If you’re like most people, you picture an elderly person in the later stages of the disease.

But here’s the thing: dementia doesn’t just happen to older people. While age is still the biggest risk factor, people in their 50s, 40s and even 30s can also develop dementia.

We call this young onset dementia and it accounts for about 2-8% of all dementia cases. Right now, 16,000 Canadians under the age of 65 have dementia. A dementia diagnosis is difficult for anyone, but it’s especially challenging for people in their 40s or 50s.

Faye Forbes and Mary Beth Wighton

Faye Forbes (left) and Mary Beth Wighton (right) are both living with young onset dementia. Faye was diagnosed with Alzheimer’s disease at the age of 58 and Mary Beth was diagnosed with probable frontotemporal dementia at age 45.

That’s what we recently learned from Mary Beth Wighton and Faye Forbes, who shared their experiences of living with young onset dementia during a webinar co-hosted by the Alzheimer Society of Canada, brainXchange and the Canadian Consortium on Neurodegeneration in Aging (CCNA).

Here are some of the biggest takeaways:

It’s a long road to diagnosis…but it’s worth it in the end

Diagnosing dementia can be a long and complicated process. For younger people, it’s even more complicated and frustrating. Medical professionals are often reluctant to diagnose dementia in someone so young, and it’s common for people with young onset dementia to be misdiagnosed with other conditions. In fact, Mary Beth and Faye were both initially diagnosed with depression.

“(The challenge) with young onset is that dementia is not something that they think about initially. If you’re a woman, the first thing they think about is menopause and depression and anxiety and panic and sleep disorders and all those kinds of things.” – Faye Forbes

“I had 12 different diagnoses before being told that I had probable frontotemporal (dementia)…they included: PTSD, major depression, forgetfulness, no short-term memory impairment, OCD, panic attacks, conversion disorder (what that means is that it’s all made up in my head). I was told that I was over-reporting memory complaints, I had frontal lobe problems, I had a pituitary cyst, I had REM sleep behaviour disorder, and ultimately that then resulted in a diagnosis of probable frontotemporal dementia.” – Mary Beth Wighton

Still, both women felt that getting a diagnosis was well worth it in the end:

“Once you have that diagnosis, it’s something that you can grab onto. There’s something there that you can fight against. That’s the way I looked at it and I wasn’t going to let it get me down. I wasn’t going to just sit there and roll over and let things happen (…) And I still look at things like that today.” – Faye Forbes

“When I think about that diagnosis, in one way, it was a really good thing, because then I could move forward with my life…As challenging as that looked, we could do it.” – Mary Beth Wighton

It’s an uphill battle to overcome stigma…but supportive family and friends make all the difference

People with dementia often feel excluded or treated differently because of their condition. For younger people with dementia in particular, there’s a tendency for others to dismiss the condition as a mental illness, or to simply not believe it because of the perception that dementia is just a disease of the “old.”

“I had all those years of people telling me I was messed up and it was all in my head, and…it was very, very hard on my family, because they were being told by other people, ‘she’s lazy,’ and ‘why don’t you leave her,’ and ‘she’s just nothing but problems,’ and so thankfully my partner and my daughter resisted all that and recognized that it was truly an issue.” – Mary Beth Wighton

We know that many people with dementia go on to live very fulfilling lives for quite some time, but even health-care professionals seem to offer little hope or support for life after diagnosis:

“(The neurologist) just looked at me and said, ‘You have dementia. You have Alzheimer’s. In five years, you’ll be in a nursing home.’ It was not a positive experience at all.” – Faye Forbes

“(My partner Dawn) said, ‘Oh, this is great, we have a diagnosis, what do we do now? Is there a pill, or…?’ And this is when the doctor said: ‘No, there’s no pill, there’s nothing that we can do at all,’ and you’ll have to basically ‘go home, get your affairs in order because you will die from this.’” – Mary Beth Wighton

Mary Beth turned to the internet for more information. There too, stigma was prevalent:

“(After diagnosis) I got home and I started to do all this research…again, it was all the doom and gloom and stigma and, ‘You’re not going to be able to do this,’ and ‘I’d be sexually assaulting people’…these were the things that were coming at me.” – Mary Beth Wighton

In spite of these challenges, both women have embraced living positively with dementia, bashing stereotypes and misconceptions along the way:

“I had started going back to school and studying for ordained ministry prior to all my symptoms starting. And I continued that…I was bound determined that I was going to achieve that goal regardless. And I did…I’m part of a team ministry in my parish and I love doing it.” – Faye Forbes

“I’m a fighter and I’m very stubborn… I just thought, ‘No, I can get around this, I can beat this, I can do something.’… (So) I started doing a lot of advocacy work. Over the last two years in particular, I’ve seen the ability of what happens when people (living with dementia) who are empowered as individuals join forces (…) to push things like policy forward.” – Mary Beth Wighton

[As part of her advocacy efforts, Mary Beth co-founded the Ontario Dementia Advisory Group (ODAG), a group composed of people living with dementia who work to influence policies, practices and people on issues that affect their lives. Learn more about ODAG at odag.ca.]

There’s a huge gap in services and supports

“I unfortunately ran into that brick wall where I was ineligible for just about everything because of my age.” – Faye Forbes

People with young onset dementia are often still working at the time of diagnosis, are physically fit, and may have dependent children or parents at home. They likely have major financial commitments like a mortgage or student loan. Yet, most social programs and services are designed for older people with dementia. They may not be of interest or the person may not feel comfortable in a seniors’ program. They might even be ineligible to join because of their age!

“I ran into a problem getting in to see the gerontologist because I wasn’t old enough to be part of the geriatric clinic.” – Faye Forbes

“I was too young to join (programs) because I was still in my 40s.” – Mary Beth Wighton

Faye and Mary Beth also describe the lack of a supportive health-care team.

“We know when someone gets a diagnosis for a different disease, like cancer, (…) a team of support will surround that person, like for instance a dietician, oncologist, spiritual advisor, financial advisor, etc. What happens when you get diagnosed with dementia in Canada? That does NOT happen. We are unlike any disease. We, for the most part, are literally told to just go home and die.” – Mary Beth Wighton

But there are many services that could be helpful for a person with young onset dementia that one might not even consider.

“One of the things that is important for a person with dementia is our diet (…) And yet I don’t know anyone (with dementia) who has access to a dietitian. That’s not part of our diagnosis process (…) Other things are occupational therapists (to help adapt your home to changing abilities) (…) Physiotherapist, for instance, is really important. People begin to, depending on the type of dementia, it could be more of a struggle for them to walk or to speak or to find those words. How come we don’t have a speech pathologist with us?” – Mary Beth Wighton

And let’s not forget about the family members.

“For my family, there wasn’t a lot of support. Through the Alzheimer Society my partner does have a social worker, but other than that, nothing.” – Mary Beth Wighton

Many are forced to give up working in their prime earning years

Many people with young onset dementia are still working when they’re diagnosed. Some may be able to continue working by modifying their job. Others will have to stop working immediately, which comes with major financial, social and psychological implications.

“At the age of 45, most people are looking to be at the top of their career or starting to head at the top of their career and get into that high income earning, and for me I had to take a long-term leave from my employment, and that then turned into having to leave my job.” – Mary Beth Wighton

“(At work) I really enjoyed interacting with people…I worked in a large office so I was constantly with people all day long. To stop that left a big void in my life.” – Faye Forbes

It’s a major financial blow

The financial repercussions of living with young onset dementia are very difficult. Eventually, a person has quit their job and may not be eligible for financial supports.

“There was definitely a drastic cut in our finances, I was fortunate to have private disability that we (still) get today, and I also get CPP as well…I applied for Canada Pension Plan even though I’m only 50 years old.” – Mary Beth Wighton

For Faye, being a stay-at-home mom made things especially hard:

“I was a stay-at-home mom for most of the years that my children were growing up, and when I did go back to work and then had to leave work, it was about three and a half years that I had worked, and when I applied for Canada Pension, in black and white, in the very fine, fine print, it says you have to work four out of the last six years. So I was ineligible for anything like that.” – Faye Forbes

Living on a disability pension can cut a person’s earning capacity forcing a person to make some tough decisions. Both Mary Beth and Faye had to sell their family homes.

“You start to make decisions…so we made decisions, for instance where we lived, so we decided to sell our house, we just started to think differently…‘how can we live without the stress of finances’. And so we were luckily able to do that and I think we’re in good shape. But, you know, it definitely hasn’t been easy.” – Mary Beth Wighton

Additional expenses like drug costs and fees for support services also come into play.

“When we’re talking about other support services like dieticians, physiotherapists, psychologists, social workers…depending on how (well) your health care system in your particular province is working…you might have to pay for those services. (But) because you’re on a financial restraint to start with, you can’t afford that.” – Faye Forbes


Fortunately, both Faye and Mary Beth have learned to overcome these challenges and live full lives with dementia. They offer the following advice for anyone diagnosed with young onset dementia:

  • Connect with your local Alzheimer Society.
  • Explore all of your financial support options. Talk to a financial advisor to find out what these are and how best to extend those options over a long period of time.
  • Consult a lawyer to get your legal affairs in order. How do you want to be cared for when you can’t care for yourself? What are your wishes? Set up Powers of Attorney so that financial and personal care decisions are made by someone that you trust when you’re no longer able to make them yourself.
  • Find out about work and government benefits.
  • Explore local, provincial, federal and online support programs.

“Just know that if you do have a diagnosis of dementia, you can live well. You can do it. That’s the main message.” – Mary Beth Wighton

Above: Faye Forbes, Lori Michaud (webinar contributor), Roxanne Varey (webinar contributor) and Mary Beth Wighton are living life to the fullest with their families, despite all being diagnosed with young onset dementia.


For more information, please see our page on Young onset dementia.

P.S.: If you have the time, we strongly encourage you to listen to the webinar and hear what Faye and Mary Beth have to say firsthand.

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

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

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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.

FAITES UN DON

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