[Tea]
How do you think platforms like ours that match caregivers and their loved ones with the appropriate care can address the ongoing shortage of care providers?
[Naomi]
I think it’s fantastic. It’s funny because when I first came across Gravitii, I was like, “Oh my God, this is exactly the idea that I had years ago!” I didn’t have a physician, but I think this is so needed and I’m super grateful to see that something’s emerging in this space to help.
I’ll give you an example of what was in place for me. My mom lives in a long-term care home. It’s very difficult to get her out. She has delusions, I’m too small – there are barriers and it’s really hard. Especially if the doctors say, “Okay, we expect you here at 1:30”. I can’t guarantee that she’s going to make it for 1:30, right? It’s tough to even get her out. It’s tough to get her in the car and get her over there. To just be patient enough to do these things.
Some physicians insist on the fact that you must come into the clinic. Say you missed the appointment because today, my mom is like, “I’m not doing that.” I can’t force her to do it. Well, now you have a missed appointment that’s 100 bucks or so. And I can’t guarantee she’s going to be well enough to do that. I feel like there’s not a lot of understanding there. Because of this, I’ve had to come up with alternate ways because I don’t want her level of care to suffer due to being unable to take her somewhere. I’ve had to really work hard to find mobile services to come into the long-term care home.
I’m super lucky that I have found a few people but even then, they’re getting to the end of their working career, and want to retire eventually. Who’s going to fill that space?
For example, my mom loves reading, so keeping her eyes as healthy as possible, especially with the large number of medications she’s taking that can dry her eyes out and have all these other side effects, was important to me.
I found an optometrist. She had a physical location in Edmonton for years, then she decided to provide mobile services. She just brings her little cart with all the contraptions and different lenses, and she can do everything right there. She can come and drop off the glasses afterward, she can speak to the long-term care staff and tell them about her eye health and provide her recommendations. So that’s really great.
Because of the side effects of these medications, my mom also has some foot issues, so I had to bring in a podiatrist to cut her nails and keep her feet healthy. I also have a mobile dentist who comes over quarterly and cleans her teeth. For example, if a tooth is broken and she can’t take care of it, the dentist can refer her to the University of Alberta or another specialist who can help. And usually, by the time you’re getting to that level, they have training and can understand the uniqueness of the situation. They understand that maybe the patients aren’t coming on time or maybe they don’t want to sit down in a waiting room.
I find that if you go a little higher, it can be better, but like I said, that was years of looking for people and when those people you’re relying on leave the space, you’re really left scrambling. You have to start from zero.
And who do you ask? Calling different long-term care places and putting out a message. I mean, where do you find these people?
[Tea]
You’d probably have to put up an ad on Indeed or Craigslist or Castanet, I’m thinking.
[Naomi]
Right, and how do I know what kind of accreditations they’re supposed to have? How do I know that they have the training? How do I know that they have insurance in case something goes wrong? There are a lot of legal and health implications with bringing in a provider without some sort of monitoring or checking of what the credentials are.
I think that’s where Gravitii can really come in as you’re pre-vetting these healthcare providers. Checking that they are who they say they are, they have the accreditations, etc. That instills trust for caregivers so they can have peace of mind.
[Tea]
Definitely, yeah. Gravitii connects individuals and their families with home care providers – Health Care Aides here in BC – who are in good standing with the BC Care Aide and Community Health Worker Registry. In our latest release, we’ve implemented the ability for people to find care based on background checks, liability insurance, WCB coverage, and ratings and reviews. So, there’s an added layer of safety on top of being a registered professional.
[Naomi]
I think that’s great. An area that I hear about from other caregivers is the language factor. Some people speak different languages or come from different cultures, and then maybe they want a Punjab health professional, for example. In the current marketplace, where are you going to find somebody who can speak the language of your loved one?
Even being able to do that is critical. Or say, for example, your loved one is LGBTQ+, maybe you want somebody that’s representing that, to make them feel more comfortable. There’s a huge need for this and it would alleviate the burden and the pressure on caregivers. This can be a one-stop shop where I can access all the different levels of care.
[Tea]
And you’re not stuck with one care provider forever if you don’t want to. You’re not assigned to somebody that you might not like. Maybe the connection isn’t there. You can personalize this experience from both ends. As a care provider and care receiver, you can choose who you work with. This is especially important for family caregivers because they can log in and customize their loved one’s experience.
[Naomi]
Totally agree, so needed for sure. I’m always curious about some kind of referral system in the long-term care space because it’s hard to connect with caregivers sometimes. There is not a place where everybody’s connected, where every caregiver is on the same network. It’s important to present the information so people can easily access it. I’m interested to see how you guys are going to get your message out there.
[Tea]
One way that I’m hoping to achieve that is by inviting people like yourself to talk about it. Have a resource center on our website where we can talk about dementia, online security for seniors, and preventing falls and injury – just create a space to talk about these different topics that are so common.
[Naomi]
Right. So, I’m presently on a working group for Dementia Friendly Canada. The specific focus of the group that I’m in is on financial professionals and navigating the administrative side of care. Say you – as the caregiver – go into a bank. They will say that you need all these documents, they need your power of attorney, etc. There’s just a lot of work to be done and I think another area is even beyond healthcare providers. What about administrative work? That’s what people don’t understand about this disease and caring for somebody – there is a huge amount of administrative work to be done, for example when you’re booking appointments.
I have a trusteeship in place for my mom, so every dollar that goes in and out of her account must be demonstrated either by a receipt or in a banking statement. And if there’s a discrepancy, once you go to renew your trusteeship after five years, you ask, “Well, what was this expense on?” So, in addition to my own financial responsibilities, I also have to be responsible for that as well. As a caregiver, you’re basically an accountant, an HR professional, a financier… The amount of hats you have to wear is insane. And you’re not really told about this. You know, something like, “Hey, you should probably get a joint account so that you can monitor your loved one’s finances as time goes on”. This is another area that people see around cognitive impairment or signs of dementia. They’re spending money, possibly in ways that they hadn’t in the past. Another common thing is that people think the children are taking the money. So, if your loved one is having a delusion around money security, how are you able to help support them in a way that doesn’t play further into the delusion? So, again things that people don’t talk about.
[Tea]
It’s like motherhood 2.0 because you’re not just caring for a person who is young and doesn’t understand things.
[Naomi]
It is. I also think that what happens as you age is that there are a lot of comorbidities, so you’re not just treating dementia, like in my mom’s case. I’m also treating bipolar disorder, IBS, fibromyalgia, and trying to navigate how each medication affects each thing. These are the reasons why caregivers need a resource like this so that they’re not accidentally causing harm to their loved ones by just not knowing.
[Tea]
Yeah, right. That also plays into the continuity of care from one professional to the next, from one care provided to the next. How do they know who came in last time? What happened the last time this person was cared for? Is there a repository where all these things are tracked? There are going to be multiple people who are taking care of this individual who need to know the details of care. We need to have a more holistic approach to care.
[Naomi]
I agree. I think that a big buzzword that exists in this kind of space is a “interdisciplinary care teams”. There are organizations like Baycrest out of Ontario where you come in and meet with a nurse, then you meet with a psychometric assessor who’s doing the testing around the MoCA or MMSE and all these cognitive tests, then maybe you’re switched over to the doctor, who renders the diagnosis, then they’re sending you to a neurologist, and then you’re consulting with somebody, then they’re connecting you to a social worker, and so on. But the caregiver is there as well.
So, all together. You have this web of support wrapping around services. I think that’s really the only way to navigate this. Say you do get a diagnosis. which is extremely difficult to get as is, as there’s only one true way to get a diagnosis and that’s autopsy after death. Everything else that they’re doing is just a series of tests through a process of elimination.
Things could change, lots are going on. There’s recently been talk about a blood test that would show whether you have these predispositions.
But how is the legislation going to keep up with that? Say you go for a blood test and you’re 45 years old and they deem that you have dementia. What does that mean? How is that going to be? Even when they revolutionize things, what are the implications of that?
I was in a working group with Biogen, the company that came out with Aducanumab, which is the first drug that’s been put out in over 20 years to help around dementia. They brought together people with lived experience – caregivers and professionals. One of the biggest things they saw was this huge discrepancy in getting diagnosed.
For example, when my mom was initially showing signs and exhibiting these behaviours, I took her to a doctor. Her doctor had provided a referral to a neurologist, but that’s a year-long wait. What happens in that time? If you’re exhibiting signs, a year later the disease is progressing, right? Because you’re not getting any treatment. It’s really detrimental.
I think the extremely long periods of waiting are a problem right now. And just to circle back to the diagnosis side of things, it’s really just a series of tests that they’re guessing around or making the best professional recommendation that they can. I’m excited to see what’s coming to get more timely diagnosis for people.
This is what brought me to clinical research. In another life, I was working for a company locally called Okanagan Clinical Trials. They have a memory clinic in town, which is they’re providing free assessments to anybody in the Okanagan. That can be a first avenue into getting a baseline of where your cognition is at and then monitoring over time.
What I see is that when you’re reaching retirement age or 50-55 years old, suddenly we’re telling you to get a hearing test every year we’re getting your eye test every year, but we never get a brain test. I feel like that should be something that’s just on the priority list.
[Tea]
Especially since in Canada, the aging population is obviously very high. We have a growing aging population, so this needs to be a priority because it’s just based on data.
[Naomi]
I agree. Not enough children are being born and you can’t immigrate enough people here to make up for that. So, you have to figure something out.
[Tea]
You’ve mentioned clinical research a couple of times. What are you excited about when it comes to the work that you’re doing, the conversations that you’re getting involved in, especially around dementia around anything to do with senior homes?
[Naomi]
For me, clinical research is super critical, at least in the dementia space, but the other spaces as well. I think it’s important for anybody who’s dealing with an issue that they’re not gaining any traction with, either because medication doesn’t exist that can help support them or their symptoms are different than the norm. You know, it could be celiac or pediatric migraines, it could be RSV. It doesn’t only have to be related to seniors, and I think clinical research how you get medications and treatments to help with these issues.
What drew me to this is that there is no cure or treatment for dementia. It is one of the most chronically underfunded research areas. You know, cancer is kind of sexy, so, there’s a lot of money for cancer. Dementia – not as sexy, so not a lot of money for research there.
I participate as a citizen reviewer with the Alzheimer’s Society of Canada, which means I review lay summaries for research proposals. The Society has a certain pool of money that funds research around dementia. I think this is my fourth year of participating and reviewing different summaries and research. So that’s really cool. Whether it’s in a biomedical space or quality of life space, you get to see what’s coming up. What are they talking about? To me, that presents hope.
One big thing I found about this area of memory assessment is that, again, the scariest thing for people is cognitive impairment. Sometimes people would be okay. They’re being told, “This is where you’re presenting on a scale. It’s actually lower than where you’re supposed to be for your age. And people would be asking themselves, “Well, why do I want to participate in clinical research if I’m gonna die anyway? If this is the only way it goes, why would I do that?”
Okay, well, what about your daughter or your grandson? You know, somebody had to participate in a research trial to get you antibiotics to get you any kind of medication that you’re being prescribed. Somebody before you had gone through a research proposal. I feel like it’s critical and more interestingly, in my opinion, you have expedited access to services.
A pharmaceutical company needs to ensure that you meet the qualifications of the research clinical trial. Let’s say, for example, in the cognitive space – they need either an amyloid load (how much plaque is in your brain) or they need a lumbar puncture, which is basically a spinal tap. If you navigate the traditional system in Canada, there are only a few PET scan machines across the country, and they’re extremely expensive. Doctors don’t really want to prescribe that to you. I think clinical research provides a little bit of a loophole that gives you some access to some of these things.
And if you don’t qualify for the trial, fine, it doesn’t matter. But at least you’ve seen someone in a faster time than a year. You’ll probably have seen some sort of specialist or some medical professional before you would get that referral to the neurologist, right?
[Tea]
Right. You’re on the board of directors with Braintrust Canada. Tell me a bit about that.
[Naomi]
I started on the board because it’s directly related to dementia. I think it’s very interesting. What you’re seeing with the toxic drug supply – I believe it’s called anoxic brain injury – is that if somebody were to overdose and they’re not getting oxygen to the brain, they’re being brought back with naloxone and then they have a bit of a brain injury there due to the lack of oxygen for some time. To me, it’s just fascinating.
Once you get into that, we talk about the Rail Trail and Tent City, and people have varied opinions on that. But when you look into it, a lot of the clientele that is at Braintrust Canada is suffering or living in Tent City because they have a brain injury. I’m grateful that Amanda and the team at Braintrust are there to help support people like that.
I know they’ve recently connected directly with the Kelowna General Hospital, so now if people are experiencing concussions or other brain injuries, they are recommended directly to Braintrust. That means there’s not a gap in that service. But that’s a long-taught lesson as well because you’re navigating, you’re knocking on all the doors, and you don’t always know who to ask. So, I’m grateful to see the changes that they’ve made.
Anything that we can do out there to improve brain health, whether it be young or old (or older), it does not matter. It is a critical need because that’s the most important organ that you have. It dictates that we are alive. It controls us, which is why I’m advocating for the annual testing of the brain. After a certain age right, for every decade that you age, the risk of dementia increases significantly, and you become more and more likely to develop the disease.
[Tea]
I’m going to bring it back to my own experience with my mom when she was hospitalized with COVID because you mentioned brain injury due to lack of oxygen in the brain. I had just moved to Kelowna from Vancouver in 2021. My mom is super healthy and active, but she got COVID and was hospitalized because her oxygen level dropped below 95% while she was at home, so she was hospitalized, and I couldn’t really go see her.
When you were talking about the restrictions and barriers to seeing your own mom in the hospital, that’s like what I went through. When I was visiting, I felt so bad. I felt like I was taking up space and in the way of nurses and doctors, but I still felt lucky enough that I was able to visit and just see her.
The whole time, I felt like I was just such a burden because I was the only one showing up at the ICU, during a time when most people should’ve kept away from the virus. I wanted to know how my mom was, but I was at the point where I didn’t really care if I was bothering anyone. I needed to know how my mom was. Thankfully, she got better, but she did have this period where she lost oxygen, so they had to give her a Dexamethasone. So, when she got better, I went in and she was acting like she was high on cocaine, she had so much energy. And the doctor said this behaviour is typical of people who get this medication. Anyway, it came as such a shock to me because this was not my mom. She was 10 notches above her normal, which is scary.
She’s already a very expressive woman, but the meds just put her on another level, and she was just floating on clouds. She started writing memoirs. You mentioned also that people who have brain injuries or who are dealing with degenerative diseases tend to make expensive purchases sometimes. I remember her saying, “I need to go and get a new mattress. I want a four-thousand-dollar new mattress.”
For me, that was so shocking. At first, going through this was a very depressing moment where I was thinking to myself, “Is my mom ever going to be the same again? How is this going to impact me?”
[Naomi]
It’s definitely not easy. I will say though, that you should never feel bad about trying to advocate and care and be checking in. You can’t feel bad about that because you are a caregiver in that situation and you’re part of the team too. They might be the other people providing health expertise, but you’re providing the historical context and the knowledge about your mom, and who she is. They don’t know what is or isn’t typical for your mom, they don’t have that information. But you do.
Even in my mom’s scenario, she’s been in that home for almost the whole time – I think 16 years –so they know her well and I understand that they are doing their absolute best. But they’ve got lots going on. They have over 100 residents that they have to take care of. And if they’re not delivering her meds, or they’re not doing the eye checks, or they’re not looking at the medication, or whatever it may be – I don’t feel bad about asking, “Hey, what’s going on with that? Have you chatted with this specialist? Are you going to talk to the doctor?” Because nobody else is going to advocate for her but me.
[Tea]
At the end of the day, you know her the best.
[Naomi]
I do. Long-term care facilities are contracted (so to speak) to provide the necessities of life: food, shelter, and medication. But that’s all they’re giving. All the tender love, the switching of your clock in the back of the room, or changing the battery out, that’s your job. And even though it might not seem important, it is important.
I don’t think anybody should ever feel bad about trying to advocate for the best level of care. And that’s what I try to say: if I am doing that, I always add the caveat, like “You’re doing a great job, I appreciate everything you’re doing” because I can’t do what they’re doing. We’re in this together. I can’t do that, but you can’t do this. Let me help in this area.
Another example is that it can be very hard to get people to have a bath. They only are bathing sometimes once a week in these care homes, so she must get in there when you know it’s happening. Sometimes, she wouldn’t want to do it, so they’ll call me and say, “Can you talk to your mom about having a bath?” and you’re on the phone trying to bribe your mom by telling her you’ll order her a pizza after. And they look to me for that type of stuff. To me, there’s nothing wrong with that.
That’s your job as a caregiver. You have a relationship that they don’t have.
You’re a critical part of the team, even if you’re not always recognized.
That’s why, in a lot of these long-term care homes, there are family and resident councils that you can be a part of so you can advocate in a larger sense for your loved one, or maybe discuss the conditions that they’re living in. If, let’s say, your mom isn’t getting better, then maybe you need to get a power of attorney or guardianship in place, so you can start making some decisions on her behalf while she’s not cognizant in that level. So yeah, caregivers are really important. You are important.
[Tea]
Well, thank you. I think that was a great conversation, I loved it. One other thing that I wanted to ask is, what do you think a company like Gravitii can do? What’s the best thing that we can do, aside from providing this connection between caregivers and their parents or their loved ones and care providers?
[Naomi]
I think demonstrating the need, putting the story out and profiling it in a higher sense, or bringing it out a little bit more. I find that if you’re not touched by it, you don’t know, you have no idea. You’re not even connected in the same way. The same goes for dementia. If your grandma or somebody else in your family hasn’t had it, you probably never thought about it. As soon as you’re touched by one person, it will never leave you again, you will always have that.
[Tea]
And I think it’s very likely that someone you know will be crushed by it, it’s inevitable. Everybody is kind of connected to it somehow.
[Naomi]
Totally agree. I think creating space for people to talk about those types of things is super important. I think that showing how this is helping or how it has made a difference – those are all important. Even offering pieces around a specialization, so interviewing a podiatrist to say, “Okay, here are some tips and tricks on how to handle this.” If I hear a caregiver is looking for something – how would they know that? It’s about equipping people with the resources so that they can navigate this a little easier by leaning on the expertise that you already have on your roster. And building more awareness – more talking, more understanding, empathy building, connection. It’s just about making sure that people know this is available and what Gravitii can do to help alleviate things. I think is important.
[Tea]
Well, thank you so much, Naomi. You’ve shared some very deep insights with us today.
[Naomi]
Thanks for having me!
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