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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) 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.

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.

Nightmares or the Orange Pill

Nightmares or the Orange Pill

I’m tired this morning. The lingering affects of my nightmares stays with me.

One of the characteristics of Frontotemporal dementia is sleep disturbances. In addition to this I have been diagnosed with REM sleep behavioural disorder. This “… is a disorder in which you physically act out vivid, often unpleasant dreams with vocal sounds and sudden, often violent arm and leg movements during REM sleep.”
Normally you don’t move during REM sleep. About 20 % of your sleep is spent in REM sleep, the usual time for dreaming, which occurs primarily during the second half of the night. (Mayo Clinic)

REM sleep behaviour disorder often may be associated with other neurological conditions such as Lewy body dementia, Parkinson’s disease or multiple system atrophy.

I have had this disorder for about four years; that means prior to my diagnosis of Frontemporal dementia (FTD).
The other distinct characteristic of this is that you usually remember the nightmare(s) unlike many dreams.
Although I had a diagnosis, I choose not to take any suggested medications to help the symptoms. About a year ago, that changed as my nightmares were more frequent and frightening.

My doctor put me on 0.5MG of Clonazepam. Yes, medication from the “pam family.” Clonazepam often used to treat anxiety is also the traditional choice for treating REM sleep behaviour disorder.

However, in people with FTD, benzodiazepines have been associated with an increase in behavioural challenges and impair both memory and pschomotor skills. Use can result in reduced inhibition and impaired judgement. Simply put Clonazepam should be avoided.

I’m sure you can see the conundrum. To take or not to take. That is the question!

My daily medication is taken via a blister-pack. The clonazepam is not included in it. Every night as I take my blister-pack medication, I have to also open up the pill bottle for it.

Last night I choose not to take it. This is the second time this week. Why not? I keep hoping to take less medication. I keep thinking maybe I don’t need to take it anymore. But I’m promptly reminded why I do need to take it. Without it comes the nightmares. Terrible nightmares.

Although clonazepam is not suggested for people with dementia, I’ve made a choice to include the orange pill in my daily medication. Without it, the monsters come out and I can be heared yelling “Help me….”

Mary Beth Wighton is a blogger living with Frontotemporal dementia. If you want to subsribe to her blog or get in touch with her for any reason, send her an email (mbwighton@hotmail.ca).

fdd8c873df2214bMary Beth Wighton

Blogger and dementia advocate

Humpty Dumpty

Humpty Dumpty

The last few weeks I have been “off.” I have been extremely tired, lack motivation, and am moody. Today, I had another example of how my brain is changing.

I was tidying up the bedroom and began to move items in order to dust. I started to pile things on the dresser. I was not being careful but, for some reason, didn’t really care. As I continued, I looked at my South African art ostrich egg that was dangerously positioned underneath the piled up items.I remember looking at it and thinking I should move it or else it will fall.

Well, guess what… it fell. Even though I had the initial thought of moving this precious piece of art, I didn’t. I don’t know why. All that I know is that the fragile Osterich egg fell and shattered.

Dawn came running into the room and after surveying the floor she began to tear up. She knew how important this piece of art was to me. A number of years ago, while working in South Africa, I bought this art Osterich egg. It was the same day I went to Nelson Mandela’s museum. I carefully carried it home and have always handled it with kid gloves. It meant a lot to me on an emotional level.

What is curious is what came to my brain next:

Humpty Dumpty sat on a wall,

Humpty Dumpty had a great fall.

All the king’s horses and all the king’s men

Couldn’t put Humpty together again.

eggStrange. As I collected the pieces, it made me quite sad. But it was more than just a broken art piece. I felt sad because my brain did not do what it should have. One part of my brain should have said “danger, danger” this could fall and break. Another part of my brain should have then taken that piece of information and move the egg. It didn’t.

As I looked down at the pieces, I thought to myself, this is like my brain. I now have these pieces that are disjointed and not connected anymore. So yes, the brain is still working, but not in the way it should, much like Humpty Dumpty. It is quite a visual analogy for me.

As I lay contemplating this latest episode, I realize that just like Humpty Dumpty, I will not have someone who can fix me. Research and medical solutions are too far off in the future to be able to have the solution to glue those disjointed pieces of my brain back together.

With having dementia, I am very well aware that I can present as looking just fine. But, my brain is sick and struggling. I will just have to continue to do my best and balance on the wall to the best of my ability.

Mary Beth regular sends out her journals. If you would like to receive all her posts or just connect with her, send her an email.

fdd8c873df2214bMary Beth Wighton

Person with dementia

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