Alzheimer Society

#ilivewithdementia

In last week's post entitled, Showing Vulnerability to Build AwarenessI talked about a new Alzheimer Society of Canada awareness campaign I am featured in. 

I wanted to revisit the topic and discuss how powerful I think this campaign is. I read all of the stories included on the website and found them both inspiring and disheartening, simultaneously.

I did discover some very interesting patterns interwoven throughout the stories, including:

  • the level of care and understanding differed based on geographical location;
  • stigma still exists and it is primarily based on a lack of education;
  • the diagnosis and the disease itself greatly impact caregivers and families, which is still not being addressed in the way it could and should be; and 
  • the person suffering from dementia is still a person and deserves to be treated with dignity and respect.

These people were brave enough to talk about how they live with dementia on a daily basis. I  strongly encourage anyone living with this disease to discuss their situation as it is in itself unique. 

The only way to start addressing stigma is by getting the word out there and discussing dementia in a meaningful way. I want to know how you live with dementia.

Let's build a network of people living with dementia and their caregivers to educate the public. Ours is a compelling and cautionary tale; one that’s only just beginning for an entire generation.
 

Showing Vulnerability to Build Awareness

January 8th was the official launch of the Alzheimer Society of Canada's January Alzheimer Awareness campaign, I live with dementia. This is especially exciting because I have the honour of being featured in it!

This amazing feat all started when I reached out to the Alzheimer Society of Canada to become a media spokesperson in June 2017. The Communications Director of the Society, Roseanne Meandro, has worked with me since to help me get my story out there.

In September, Ramp Communications contacted me to do a photoshoot for the campaign. It just so happened that the photoshoot landed on my birthday, so I felt very special. David Tam, the Creative Director from Pear Tree Photography managed to get the shot used for the campaign right off the bat.

I continued to work with David Brouitt, the Creative Director of Ramp Ad, to refine my story, which was set to be featured as part of the campaign.

For the remainder of 2017, the campaign was under embargo, so we couldn't talk about it publicly. 

But now the word is out there and I am so thrilled to get a chance to share! My hope is, and has been since I decided to become a public advocate for this cause, that by allowing myself to be vulnerable, it will resonate with people.   

I want to personally thank all of the people who made this campaign possible, and  I encourage you to start a discussion about dementia using the #ilivewithdementia

Read my story. 

Most under-recognized public health threat

According to a report published by Statistics Canada in 2014, Dementia is the 8th leading cause of death in Canada. It is the only cause of death among the top 10 without a way to prevent it, cure it or even slow its progression.

Too often Alzheimer's is treated as a issue that only impacts people that are aging, but I can attest to the fact that that is simply incorrect. This disease has far reaching impacts and the burden will continue to deepen.  

According to the Alzheimer Society of Canada, as of 2016, the combined health-care system and out-of-pocket caregiver costs are estimated at $10.4 billion per year. By 2031, this figure is expected to increase by 60 per cent, to $16.6 billion.

In an earlier post I talked about the passing of Bill C-233An Act respecting a national strategy for Alzheimer’s disease and other dementias, making Canada the 30th Country with a National Dementia Strategy.

This is a step in the right direction, but what are we doing to help the people with dementia and their families right now? 

I want to find a way to unify us, caregivers and sufferers alike, so we can share our experiences in order to influence policy. 

Dementia is still not being seen as the epidemic that it is. The percentage of the Canadian Institutes of Health Research’s budget invested in dementia research is only 5%

A commitment to more public funding for dementia research is the best place to start.

Find out how Canada compares to these and other G7 nations in funding Alzheimer’s research.

Supporting people afflicted with early-onset dementia

I recently had the pleasure of attending an early-onset dementia support group facilitated by the Alzheimer Society of British Columbia - South Okanagan and Similkameen.

It was truly an eye-opening experience as I had never attended a support group from the perspective of the sufferer. The even more interesting fact was that all of the participants were men which is quite uncommon as women make up 72 per cent of Alzheimer's patients, according to the Alzheimer Society of Canada.

To hear these men detail their struggles with the disease was profound. The brain fog, difficulty finding the right words, the expressed upset with the way they were treating their caregivers; it was like nothing I had every heard before or considered. 

Because my mom's condition has progressed, it has been difficult to ask her what she is thinking and feeling, let alone what is going on in her mind. Plus, even if she does tell me what is going on, it is hard to be sure that what she is saying is accurate.

I have asked if she understands that she has dementia and she has reassured me that she understands. I questioned how the disease affects her, and she advised me that her mind is very confused, making it difficult to remember things accurately.

What I have realized in caring for my mother, as well as becoming more acquainted with people afflicted with the same condition, is that they need just as much support as we do as caregivers.

They are confused by their own minds and the changes that are happening that are out of their control. They are understandably frustrated and often, without meaning to, take out their anger on those closest.  

I encouraged the gentlemen in the group to be patient with themselves and have repeatedly told my fellow caregivers not to take anything too personal. 

People suffering from dementia, specifically those diagnosed with early-onset, have so many things to contend with that they never expected, that we, as caregivers, need to give them leniency.

Support your loved one on this journey where no day is ever the same. But remember that you can be a better caregiver by incorporating self-care into your daily life.

With programs and services available across Canada, the Alzheimer Society supports people with dementia, their families, caregivers, and health-care professionals. 

Seek support for you or your loved one by contacting the Alzheimer Society of Canada