[Tea]
First of all, thanks for meeting with me, for taking the time. Congrats on being nominated for the Change Maker Award at the Kelowna Women In Business 2024 Rise Awards!
[Naomi]
Thank you for that! I was one of four finalists. There were about 67 applications submitted this year, so to be recognized as a finalist feels really great. To be amongst an esteemed group of women feels like something to celebrate. Just excited to be recognized in the community.
[Tea]
Yeah, that’s awesome. Being part of those communities is something that I’m striving towards too. Not just for work, but I think it’s great to be part of a group of like-minded people, especially as women, you know.
[Naomi]
Yes, we have to raise each other up.
[Tea]
Speaking of you getting recognized at the Rise Awards, your experience in public relations and advocacy work for dementia, caregivers, and caregiver support is very inspiring. What initially motivated you to start advocating for people living with dementia and for caregivers?
[Naomi]
So, I’ll provide you with a little bit of context and then I’ll tell you about what led to putting myself out there a little bit more. When I was 22 years old in 2007, my mother was diagnosed with frontotemporal dementia. She was 54 years old, so it is considered a very early onset. At that time there really wasn’t a discussion around where to access services, respite care, or at-home care. It was more, “Okay, she needs to be institutionalized and placed into a home”.
There wasn’t even a discussion about how we could keep her at home. Her level of care was high, which is difficult when you’re working a full-time job, and you have a family. For almost 10 years, I was just trying to go along to get along. I was getting the guardianship, getting the trusteeship, all the different legal things in order to be able to provide care or advocate on her behalf. That really consumed a lot of my time. Even after I had moved to Fort McMurray in 2012, I was still driving back and forth every two weeks to go and see my mom and to help support with her care. I didn’t have an opportunity or time to find my voice until about 10 years later.
In 2017, on the 10-year anniversary of caregiving, I felt like I was still not engaging with people who were my own age and were experiencing the same type of issues. I had initially gone to the Alzheimer’s Society because this is what’s recommended after a family member receives a diagnosis of dementia or Alzheimer’s.
I found, unfortunately, that I was decades younger than anybody in that room, so I didn’t feel the support in the way that I would have liked because we were not in the same place in life. I was just trying to figure myself out and they were already well-established, part of a different demographic. I kind of just kept myself and kept going, but after 10 years, I found that I was still not really engaging with other people like me. I did not see other young adult caregivers speaking publicly, so I thought, “Okay, now is the time to start using my voice to try to advocate for change.”
I also saw that after 10 years, nothing had really improved in terms of diagnosis, treatment options, or support for caregivers. Therefore, I committed to start sharing the story of my caregiving journey. I created a website called discussdementia.com and started blogging about my experiences.
Then, I reached out to the Alzheimer’s Society of Canada and said, “I want to be a spokesperson. I’m ready to be the face in front of the cause”. Roseanne Meandro, the Society’s communications director, was super lovely and started connecting me to opportunities.
I participated in an “I live with dementia” national Alzheimer’s Awareness Month campaign. I was then interviewed by Globe and Mail for an article about my experiences. I started participating in different leadership and working groups across the country that were advocating for systemic change or discussing the disease.
I was gaining a lot of media traction and attention, and that was feeling really good. But life sometimes gets in the way, and you still have to work full-time. So, I’ve had periods where my advocacy efforts have slowed down a bit and then they ramp back up.
But I’ve always tried to contribute in some type of way. For over four years, I was a member of the Alzheimer’s Society of BC’s Leadership Group of Caregivers. The group disbanded in 2023, but that was an avenue to provide my lived experience to help guide campaigns and different Society initiatives.
I have also volunteered for a couple of years for the planning committee for the IG Wealth Management Walk for Alzheimer’s in Vernon. I have spoken on panel discussions during Alzheimer’s Awareness Month and World Alzheimer’s Day. I’ve found different ways to speak and advocate for making systemic change.
Part of systemic change – at least in my opinion – includes policy and legislative changes, because that’s something that outlasts almost anything. So that’s where I’ve sort of turned my efforts most recently. I was working on a Private Members Bill advocating for at-home and respite care for caregivers. And I also would love to start working towards advocating for long-term care to be included in Canada’s Health Act, because it currently is not, which is kind of disturbing. I mean, you’re leaving your loved one with people – personal support workers or health care aides – and that’s a professional that isn’t regulated by an overarching body or association. They’re intimately acquainted with your loved one and then there’s no oversight. COVID also showed that there are fundamental issues with long-term care that need to be addressed on a national level.
[Tea]
Do you mean in terms of the connection with the family caregiver or including the family caregiver in this process?
[Naomi]
Yes, having a caregiver included as part of an interdisciplinary healthcare team is critical. There are doctors, pharmacists, physical therapists, dieticians, etc., but the care partner provides the love and support that improves the quality of life that isn’t necessarily going to come from medical or health professionals.
[Tea]
Well, thank you for sharing that, and as I said before, your advocacy work is super important. I think that when we talk about dementia and just senior health in general, it’s so hard to wrap your head around it because it almost feels like there’s a stigma in talking about it, especially when it comes to brain injury or degenerative disease. It looks like there’s a lot of support out there for caregivers of children, like parents. But there’s not a lot being talked about seniors.
[Naomi]
Totally agree with you. It’s a vulnerable segment of the population that is continuing to be marginalized, which causes additional stress, and medical or health issues.
It is a bit of a cyclical problem. We live in a society that glorifies youth, so aging can be a difficult process to accept. I think that a lot of the concern – or at least what I see as part of the stigma – is that no one wants to be diagnosed with a neurodegenerative disease like dementia. That is because it’s the scariest one that has no treatment and cure, right?
[Tea]
Well, I guess you feel so helpless, almost asking yourself, “What are you going to do?” There’s nothing that you can do currently. You’re fearful of the thing that you cannot control, right?
[Naomi]
That’s right, but I will say there are certainly modifiable lifestyle and environmental factors that can stave off or prevent dementia. However, when you have a family history of dementia, it increases your likelihood of developing the disease. There is a genetic test that you can take called APOE testing. APOE has been isolated as one of the genes that indicates susceptibility to developing Alzheimer’s disease. They have it available sometimes at clinical research facilities.
In the last few years, I’ve been connecting with other influencers in the community – whether it be speaking to Marjorie Horne on her Engaging in Aging Radio Show or speaking on the Fresh Outlook Foundation podcast – who are really trying to highlight the issues around seniors’ health and mental health.
While I do feel like there is more awareness around dementia, I also think rising housing costs and inflation are negatively impacting seniors. I’m concerned, and I hope that we can increase benefits for older adults in whatever way possible so they’re able to have the quality of life they deserve.
[Tea]
I think it’s hard for anyone, but definitely hard for seniors, especially when you’re dealing with a degenerative disease. I think that’s important to talk about.
Going back to how senior health isn’t really being talked about, how did you navigate your caregiving journey and especially at such a young age? You were a young caregiver and I feel like it’s more common than people know. How did you navigate that?
[Naomi]
Agreed. I’ve now entered my 16th year of caregiving. In the last two to four years, I have noticed more discussions taking place around young onset dementia and support groups designed to support young adult caregivers cropping up. I do feel like things are changing, but at the same time, 16 years is an extremely long time to not have the support in place.
At the time of diagnosis in 2007, there really was not a lot of support or resources for early-onset dementia. Unfortunately, with caregiving, it’s a lot of trial and error. That’s why it’s so important to get connected to these types of support groups as you’re learning the skills that they (other care partners) learned along their journey by osmosis.
Unfortunately, I find that with the people and caregivers that I meet, it’s like they’re starting their journey from scratch as there is no guideline or map to follow.
And symptoms don’t present in the same way. The fact is that there’s nowhere that the lessons, resources or navigation tools are really captured and utilized for future caregivers that are coming into this. Whether it be just aging or dealing with issues and medical problems that become more and more complex, you’re going to need more support and more access to health professionals.
Who do you ask for those types of things? I’m grateful that in the Okanagan, there are a few organizations around, like the Seniors Outreach and Resource Centre. I got connected with them around COVID and they are doing a lot of great things to support seniors. But we need a national organization because this is a national problem. There’s definitely more that needs to be done.
[Tea]
I think there is access to these groups, but they’re just so limited in what they can do, unfortunately. Do you think that a national policy or some kind of national repository for accessible material and resources is what’s needed? Something that can reduce the stress of caregivers? Because I think even just having these support groups and having the conversation can probably just reduce stress so much.
[Naomi]
Access to resources and support can reduce the stress on caregivers. However, I feel that support groups can be helpful, but some people can’t even find the time to attend in person or virtually if they’re caring for somebody at home. How do they find the time and space for two hours to have a chat?
There must be different methods of support because the traditional in-person groups are typically held during the daytime, when people are working, or later at night when maybe your loved one needs a bit more support, or they’re experiencing sundowning. I just feel like there must be different ways of offering support that is convenient to the care partner and isn’t burdensome.
I do think that legislation really is the key, as well as clinical research. I think these are two industries that need to run in tandem with each other because the only way to get a treatment or cure is through clinical research, but you also need legislation to help bring that to the general public.
My one concern is that we already have legislation that exists, a dementia strategy for Canada passed in 2017. Canada was the 30th country that adopted a national strategy; however, we’re five years on from when the strategy was published and the goals and different targets that were outlined are not being met. My concern is that, if we can’t even meet this legislation that’s supposed to be “national”, then how is more legislation going to help serve people living with dementia and their caregivers today?
I feel like a lot of times, legislative decisions are made in an office somewhere in Ottawa in isolation, without considering or consulting with the people that it stands to impact. A policy that maybe sounds good on paper, but that doesn’t make sense in practical terms. One example is implementing visitation restrictions in BC long-term care and registered seniors assisted living facilities requiring “essential visitor” status. Who is the political authority or legislative body that decides this, and how are they able to determine what is essential? Even if you were approved as an essential visitor, the person living in the facility is only allowed one.
We have to find some kind of balance between protecting our loved ones and quality of life, because I feel like if you ask the person receiving care, “Would you prefer to be healthy but live in isolation or risk contracting COVID but be surrounded by love and support ”, they would pick the quality of life.
The World Health Organization (WHO) has declared loneliness to be a pressing global health threat, with the US surgeon general saying that its mortality effects are equivalent to smoking 15 cigarettes a day.
[Tea]
Yeah, totally. Our co-founder, Dr. Kevin Wade, is a palliative care physician out of Victoria, and one of the reasons he started Gravitii was because of the lack of existing support. I’m sure many more healthcare professionals like Dr. Wade are feeling the same frustration. In one of his latest articles, he said “Caring for people at home is one of the few wins that we have in healthcare where we can help save money and improve quality of life”. Like you said, people are just more comfortable living in their own homes. And you, as a caregiver, as a family member, feel more at ease if your mom is living at home, or your loved one is living at home.
[Naomi]
Of course, as long as you have the support that you need. I wanted to keep my mom at home as opposed to having her in a long-term care home, but with the lack of appropriate support in place, it’s not possible. Notwithstanding the financial strain – we’re talking a million dollars or more to be able to support somebody that’s in this situation, and you don’t know how long the disease is going to last… The level of care increases and often so does the number of medications required. It’s extremely cumbersome – at least in its present state – to keep loved ones at home.
I also have a fellow caregiver that I would love to connect with. Her mom was intubated and she – with no training – had to intubate her own mother. This seems wrong. There needs to be more support because she wants to keep her mom there at home. But there’s no training for this kind of stuff.
[Tea]
It’s like you have your hands tied.
[Naomi]
You really do. She was even talking about how she was offered respite care for 15 minutes a day. I mean, what is 15 minutes a day going to give somebody?
I think this is a missed opportunity for the Alzheimer’s Society as well, as right now they do not offer respite care to caregivers to give them time to purchase groceries or attend an appointment.
Whereas other Alzheimer’s organizations in the U.S, for example, the Alzheimer’s Association or Hilarity for Charity, which is a non-profit organization that was created by Seth Rogen and his wife because his mother-in-law had dementia – are offering paid respite care. So, I feel like Canada is really falling behind other countries.
What I realized is, there are just a lot of people working in silos, not collaboratively.
What’s great about Gravitii is that you’re really trying to to provide people with help in one cohesive space, so they don’t have to spend precious time exploring.
[Tea]
That’s very true. We recently signed up to be part of the National Caregiving Strategy webinar series, which was hosted by the Canadian Center of Caregiving Excellence. In our second talk, we asked, “How can we collaborate? Is there an opportunity to collaborate with not-for-profit organizations?” The response that I got from them was very encouraging. It was, “You know, at this point, it doesn’t really matter where the care is coming from. Let’s just fix the problem.” Let’s get government, non-profit, for-profit, whatever it may be – let’s just get these people and their caregivers taken care of. Whatever it takes to move the needle.
[Naomi]
I mean, I think that when you’re when you’ve got no support you’ll pretty much take anything. If you’re collaborating, you can find adaptive solutions. You can get to a point where you and your loved one is self-sufficient, in-home.
A common question that comes up around long-term care is the for-profit or subsidized model. I don’t think that there is a place for for-profit in long-term care because it causes untenable issues, but I also recognize that right now, the government is not able to pick up the load. So, if there’s a for-profit long-term care home that can help support now, then yes, I encourage that.
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