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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.

Canada to become 30th country with national dementia strategy

Canada to become 30th country with national dementia strategy

The Alzheimer Society of Canada celebrates the passage of Bill C-233, An Act respecting a national strategy for Alzheimer’s disease and other dementias. Canada will now become the latest country to develop a national dementia strategy to address the overwhelming scale, impact and cost of dementia.

“For the more than half a million Canadians living with dementia and their families, this is an important milestone,” says Pauline Tardif, CEO of the Alzheimer Society of Canada. “A national strategy enables a coordinated approach to tackling dementia in Canada that will impact the lives of those affected in tangible ways.”

Bill C-233’s co-sponsors, the Honourable Rob Nicholson, MP Niagara Falls, and Rob Oliphant, MP Don Valley West, are to be commended for their leadership and support, as is the Standing Senate Committee on Social Affairs, Science, and Technology. They have been dedicated champions of the Bill on behalf of Canadians living with dementia, their families, and caregivers.

The Alzheimer Society has long called for a national dementia strategy to enhance research efforts and ensure access to quality care and support so that Canadians with dementia can have the best quality of life. Now that Canada has committed to such a strategy, work begins on implementation.

The Society and its federation partners look forward to continuing to work collaboratively with government, stakeholders and, above all, people living with dementia, to create and implement Canada’s first national dementia strategy.

To learn more, visit www.alzheimer.ca/advocacy.


LE CANADA VA DEVENIR LE TRENTIÈME PAYS DOTÉ D’UNE STRATÉGIE NATIONALE SUR LES MALADIES COGNITIVES

Parliament of Canada

La Société Alzheimer du Canada salue l’adoption du Projet de loi C-233, la Loi concernant une stratégie nationale sur la maladie d’Alzheimer et d’autres démences. Le Canada va maintenant devenir le dernier pays à mettre sur pied une stratégie nationale sur les maladies cognitives pour répondre à l’ampleur, l’impact et au coût de ces maladies.

« Pour les plus de cinq cent mille Canadiens atteints de la maladie d’Alzheimer ou d’une maladie apparentée et leurs familles, il s’agit là d’un jalon important, a déclaré Pauline Tardif, chef de la direction de la Société Alzheimer du Canada. Une stratégie nationale nous permet d’avoir une approche coordonnée pour aborder les maladies cognitives au Canada, ce qui aura des impacts concrets sur la vie des personnes touchées. »

Il convient de féliciter les co-parrains du Projet de loi C-233, l’honorable Rob Nicholson, député de Niagara Falls, et Rob Oliphant, député de Don Valley West, pour leur leadership et leur soutien, tout comme les membres du Comité sénatorial permanent des affaires sociales, des sciences et de la technologie. Ils ont été des champions dévoués au projet de loi au nom des Canadiens touchés par la maladie, des familles et des aidants.

La Société Alzheimer réclame depuis longtemps une stratégie nationale sur les maladies cognitives afin de renforcer les efforts de recherche et assurer l’accès à des aides et des soins de qualité pour que les Canadiens touchés par la maladie puissent jouir d’une qualité de vie optimale. Maintenant que le Canada s’est engagé dans la voie d’une telle stratégie, le travail commence pour la mettre en place.

La Société et les partenaires de la Fédération se réjouissent à l’idée de continuer à collaborer avec le gouvernement, les intervenants, et, par-dessus tout, les personnes touchées par la maladie d’Alzheimer et les maladies apparentées afin de mettre au point et d’instaurer la première stratégie nationale qui y est consacrée au Canada.

Pour en apprendre davantage, rendez-vous à www.alzheimer.ca/defensedesinterets.

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.

This election, support a National Dementia Strategy

This election, support a National Dementia Strategy

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

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

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

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

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

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

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

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

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

Learn more about what you can do.

Sincerely,

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

Ontario Dementia Advisory Group (ODAG)

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

Al Burridge was a true Dementia Champion

Al Burridge was a true Dementia Champion

Al-burridge-2When the Alzheimer Society of Ontario began the Champions for Dementia initiative in 2010, we were seeking to engage people with lived experience of dementia in advocacy activities with their Members of Provincial Parliament (MPP) and the Ontario government.

I remember receiving notice from the Alzheimer Society of Oxford that they had identified a perfect candidate to be their Dementia Champion – Al Burridge.

From day one, Al was a model Dementia Champion. Soon after joining, Ontario had an election. While Al was volunteering at a local fundraising and awareness event known as Coffee Break®, staff member Beth Haas remembers he had a natural ability to identify electoral candidates and talk to them about dementia. “The weather was good that day so Al and I set-up outside for a few hours during Coffee Break. Al not only recognized the candidates, even the lesser-known ones, but nabbed them to tell them about dementia and how the Alzheimer Society is advocating for improved care. He was charming, well-spoken and literate; no one could dismiss him or sidle off! ” remembers Beth.

Locally, Al was involved as a spokesperson. He met with his MPP several times, was guest speaker at the Alzheimer Society of Oxford Golf tournament, and was MC at the intergenerational Choir performance. He also spoke with media, including Heart FM, Rogers TV, and local newspapers.  Whatever the task, Al assumed his role with great gravity and earnestness. He always reviewed what the present focus was, ensuring he understood the message so he could convey that to his listeners. He was 100% convincing because he truly believed the message.

He recognized that to effect change he needed to be heard at both the provincial and national level. He worked with our National office to develop an ethical framework for engaging people with dementia in Alzheimer Society work, and he had recently expressed interest in joining an advocacy group led by people living with dementia called the Ontario Dementia Advisory Group. This group is focused on the development of an Ontario Dementia Strategy and actively advocates for the engagement of people with dementia in public policy decision-making that will affect their lives.

al-burridgeOn April 10th of this year, Al and staff member Robyn Fox met with their MPP to personally invite him to the Alzheimer Society Queen’s Park Day. The week after he was scheduled to meet with the Ontario Dementia Advisory group for the first time, but I received a call from his wife Maureen (Mo) advising that Al would be having surgery and wouldn’t be able to participate as anticipated but that he would like to be kept informed of the work underway. On April 27th Al went in for surgery, and sadly he did not recover. He passed away on May 14th.

Al was an impressive and active advocate for people with dementia for many years. He gave of his time so liberally and always gave thanks to his wife Mo, without whom he could not have organized himself as effectively.

Beth says it best – “Al was rarely without a smile or an anecdote. He was hospitable and reflected frequently on life’s little quirks finding all around him something of interest and curiosity.”

He was a wonderful example of someone living well with dementia.

Thank you Al. We miss you already.

Delia Sinclair Frigault – Public Policy and Stakeholder Relations Coordinator
Alzheimer Society of Ontario

Shelley Green – Executive Director
Robyn Fox – Volunteer Companion Coordinator
Beth Haas – Behavioural Support Worker
Alzheimer Society of Oxford