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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.

Research Video Series: Introducing Danielle Alcock

Research Video Series: Introducing Danielle Alcock


Danielle’s personal experience inspired her to pursue research in the field of continuity of care. She will assess existing services through the use of oral narratives by female, Indigenous caregivers for a loved one diagnosed with alcohol-related dementia and will make recommendations based on their experience.

Coming from a First Nations family, it was difficult to navigate the healthcare system dealing with jurisdictional barriers, stigma and a lack of resources. As a caregiver, there are no existing supports for alcohol-related dementia that are culturally safe.
-Danielle Alcock

Danielle Alcock

Alzheimer Society Research Program Quality of Life Grant Recipient in Alzheimer’s disease and dementia – $66,000
Project: Oral narratives of female Indigenous caregivers for loved ones diagnosed with alcohol-related dementia.

Read about more of our grant and award recipients here.

Racing for memories

Racing for memories

Recently, my family has joined the unfortunate ranks of those who have been impacted by Alzheimer’s disease. My mom started showing early signs of the disease a few years ago, and it has slowly and stubbornly progressed ever since. The toll that Alzheimer’s is taking on my mom is obvious and devastating. Less obvious, but just as significant, is the impact it is having on my dad. As my mom’s primary caregiver, it’s been said that my dad must ride the world’s tallest, fastest and scariest emotional roller coaster each and every day. Sadly, in my observation, this is absolutely true.

Read More Read More

Announcing the top 10 Canadian dementia research priorities

Announcing the top 10 Canadian dementia research priorities

[Le texte en français suit l’anglais ci-bas.]

By Drs. Katherine McGilton and Jennifer Bethell

Over the course of the past year, we asked Canadians affected by dementia—either personally or through their work—for their unanswered questions about living with dementia, dementia prevention, treatment and diagnosis. This study, also known as the Canadian Dementia Priority Setting Partnership, set out to identify the top 10 dementia research priorities, and to share them with Canadian researchers and research funding organizations.

We thank the over 1200 participants who shared their insights. Thousands of questions were submitted and the shortlist was debated at an in-person workshop, held in Toronto on June 8-9, 2017.

Canadian Dementia Priority Setting Partnership workshop,
June 8-9, 2017, in Toronto

The workshop brought together 28 participants from across Canada—persons with dementia, family members, health and social care providers and members of organizations that represent persons with dementia. Participants worked in small teams and as a group to discuss each question and decide what matters most to them.

Here are the top 10 dementia research priorities, according to Canadians affected by dementia:

Top 10 dementia research priorities

The Alzheimer Society Research Program will use these results to help bring the voices of Canadians affected by dementia into the research agenda. These priorities will also be shared with researchers and other research-funding organizations in hopes of stimulating more research in these areas.

The Canadian Dementia Priority Setting Partnership was funded by the Alzheimer Society Research Program as part of the Alzheimer Society’s commitment to the Canadian Consortium on Neurodegeneration in Aging (CCNA). Special thanks to our Steering Group and partner organizations for their involvement and assistance in the study.


ANNONCE DES DIX PRIORITÉS DE RECHERCHE SUR LES MALADIES COGNITIVES AU CANADA

researcher
Par les Dres Katherine McGilton et Jennifer Bethell

Au cours de la dernière année, nous avons demandé aux Canadiens touchés par une maladie cognitive, soit personnellement ou dans le cadre de leur travail, de faire part de leurs questions sans réponses sur la vie avec une maladie cognitive, la prévention, le traitement et le diagnostic. Cette étude, aussi connu sous le nom du Partenariat canadien pour l’établissement des priorités sur les maladies cognitives, visait à identifier les priorités de recherche à l’intention des chercheurs et des organismes de financement.

Nous remercions les plus de 1 200 participants qui ont partagé leurs points de vue. Des milliers de questions ont été soumises et la liste présélectionnée a été débattu lors d’un atelier en personne qui a eu lieu à Toronto les 8 et 9 juin 2017.

Atelier du Partenariat canadien pour l’établissement des priorités sur les maladies cognitives, le 8 et 9 jun 2017 à Toronto

L’atelier a mis à contribution 28 participants de tout le Canada, dont des personnes atteintes d’une maladie cognitive, des aidants familiaux, des fournisseurs de soins de santé et de services sociaux, et des membres d’organisations qui représentent des personnes atteintes d’une maladie cognitive. Les participants ont discuté au sein de petites équipes et en commun de chacune des questions afin de décider ce qui est important pour eux.

Voici les 10 priorités de recherche les plus importantes selon les Canadiens touchés par une maladie cognitive :

Priorités de recherche sur les maladies cognitives

Le Programme de recherche de la Société Alzheimer utilisera ces résultats pour faire entendre la voix des Canadiens touchés par les maladies cognitives dans les futures décisions en ce qui a trait à la recherche. Ces priorités seront également transmises aux chercheurs et aux autres organismes de financement dans l’espoir de stimuler la recherche dans ces domaines de prédilection.

Le Partenariat canadien pour l’établissement des priorités sur les maladies cognitives a été financé par le Programme de recherche de la Société Alzheimer dans le cadre de son engagement envers le Consortium canadien en neurodégénérescence associée au vieillissement (CCNV). Nous remercions tout particulièrement notre groupe d’orientation et les organisations partenaires pour leur participation et contribution à cette etude.

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.

Cornwall community stepping up to become Dementia Friends

Cornwall community stepping up to become Dementia Friends

One of our core objectives here at the Alzheimer Society of Cornwall and District is to continue to look for new ways to make life better for those living with Alzheimer’s and other dementias.  One way we are looking to bring people closer together is through the Dementia Friends campaign.  As many of you already know, a Dementia Friend is someone who learns a little bit more about what it’s like to live with dementia and then turns that understanding into simple actions that can help people with dementia live well.

We are moving this initiative forward with the goal of combining it with the Dementia Friendly Communities campaign.  A dementia-friendly community is a community that focuses on stigma reduction and the inclusion of people with dementia.  Its community members are educated about dementia and recognize that people with dementia may sometimes experience the world differently.  They foster understanding about dementia and encourage people with dementia to participate in their communities to the fullest extent possible.  In a dementia-friendly community, people living with dementia feel supported by their community members even when they face potential challenges.

We have seen the success of this marriage between the two initiatives.  The one hand encourages people to learn more about dementia and commit to an action; the other hand effectively puts that action into play.  We continue to receive outstanding support from all sectors of the community, from the police services, to local health and community support providers; from the restaurants, to sports organizations.

If you haven’t already done so, I urge you to visit www.dementiafriends.ca, sign up and spread the word toyour family and friends.  Together we can make a difference!


All of the great Cornwall Communities that have stepped up to become Dementia Friends!

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About the Author

Shelley Vaillancourt, Executive Director of the Alzheimer Society of Cornwall and District.
Shelley Vaillancourt, Executive Director of the Alzheimer Society of Cornwall and District.
1 million Dementia Friends wanted. Are you in?

1 million Dementia Friends wanted. Are you in?

Living with dementia comes with good days and bad but the most challenging part is the stigma behind it. Canadians with dementia often tell us they feel labelled, dismissed and cut off from friends – even their families.

By reducing stigma and misinformation, we can help them stay connected to their communities and live as well as possible.

Dementia Friends Canada is an Alzheimer Society and Government of Canada initiative to help Canadians better understand what it’s like to live with dementia and how they can help those with the disease remain active and carry on with their daily lives.

Becoming a Dementia Friend is easy and means joining other individuals and workplaces who want to create awareness and positive change.

Help shine a light on dementia. Support people in your community.
Visit www.dementiafriends.ca to get started.