Dementia and Alzheimer’s - When Caregiving is Vital

At some point in our lives, we will all be touched by dementia or Alzheimer's disease. Unfortunately, in the developmental disability community, these conditions are more likely to show up. We connect with Karen Tyrell, author of Cracking the Dementia Code and consultant to the DDA community.

 

TRANSCRIPT

 

Dementia and Alzheimer’s – When Caregiving is Vital

 

00:05

Welcome once again to DDA's Encouraging Abilities podcast. I'm your host, Evan Kelly, Communications Manager here at Developmental Disabilities Association. Today we are talking about aging and dementia and Alzheimer's in people who have developmental disabilities. Dementia and Alzheimer's can be hard on people with developmental disabilities in the community because they can be at higher risk of developing the conditions. And we'll talk a little bit more about that in a moment.

 

00:31

Advances in healthcare also mean that people with developmental disabilities are living longer, thus creating the need for understanding how caregivers can deal with the onset of conditions like dementia or Alzheimer's. Joining me today to talk about this is Karen Tyrell, who recently was contracted here to provide regular dementia care to frontline staff and management teams. So next week will have been four workshops so far.

 

00:59

So Karen is a certified professional consultant on aging and a certified dementia care provider with a passion for improving dementia care. She is the owner and operator of Dementia Solutions and offers education and support for families and caregivers when it comes to aging with these conditions. She is the author of a book called Cracking the Dementia Code, Creative Solutions to Cope with Changed Behaviors. Also a therapeutic coloring book for adults.

 

01:27

and is the co-creator of an app that offers solutions when dealing with those with dementia and Alzheimer's, all of which can be found on their website, Deme So Karen, thank you for joining me today. Well, thank you for inviting me, Evan. This is great. So you've been in this industry since 1995. What got you into it? Well, at that age, I was just finishing high school.

 

01:53

and I wasn't sure which direction to take, whether to work with children or adolescents, or I wasn't quite sure. I did some volunteer work and I found out it was definitely older adults. I really enjoyed my time volunteering in a long-term care home. So then ever since I have been on a path and I went to take a program in school,

 

02:18

that was in Toronto, Ontario, where it was gerontology based, but it was therapeutic recreation. And that program actually had me do practicum twice a week and learning theory three days a week. So I was really able to get a sense of what the real world was like. And working in long-term care, I experienced many situations with individuals with dementia.

 

02:47

And that's where my passion started right away, wanting to make a difference for these individuals in all stages. Now, can you define dementia versus Alzheimer's? Sure. So let me just start by saying Alzheimer's disease is a disease. Dementia, a lot of people think it's a disease on its own, but it's not.

 

03:13

So dementia, if you can picture your hand, and I'm going to make you make a fist, and each finger would be a symptom. And when you close your fist, it creates a syndrome. So what dementia is, is a syndrome that is made up of, I'm gonna say here, five common symptoms. Now let me just give another example of a common cold.

 

03:41

When we get a common cold, it's not a disease, but we get symptoms like runny nose, headache, sore throat, coughing. When we get all these symptoms, oh no, we got a cold, great, this is fun. But those symptoms typically fade away. But a cold is a syndrome. So dementia is a syndrome. And the common symptoms that we do see, and I'm just going to share a few of them, is

 

04:11

Poor memory. Of course, a lot of people know this is very common when we see somebody with memory impairment. That is a symptom. Another symptom is poor thinking abilities. So difficulty making decisions, difficulty with figuring out how to get from their home to the grocery store perhaps, where they used to be able to know how to do that, or difficulties thinking how to make a big meal.

 

04:39

So thinking impairment does show up. We also see judgment impairment. So some people making inappropriate decisions around safety, their safety, the safety of others, or decisions that are poor around saying things inappropriately in public. So there's lots of examples, you know, people using a chair that has wheels.

 

05:05

to reach for something in their cupboard. So, you know, little things like that start to change for judgment. And then the other common symptom I want to share is communication difficulties. So sometimes we will see an individual having difficulties making a sentence, a proper sentence, or finding the right word for things, but...

 

05:24

what happens is not the normal aging. Normal aging would be, oh, what's the word? It starts with an A. You know, you put it with your, you know, your tacos. Okay, it's avocado, you know. So, it's basically switching up a different word, using a completely different word to explain what they're talking about. Or they're having difficulties comprehending what people are saying, even though they're speaking the right language.

 

05:50

the comprehension has now been compromised. So that's another common symptom. And the last symptom I want to share is personality changes. When we see the person no longer behaving in similar ways or have similar interests anymore, or maybe let's say they were always so patient and understanding and happy to be around, now you visit with them and they're not very happy. They're complaining all the time or they're...

 

06:18

you know, why am I doing this? Why are you here? I don't want you here. Where they were never like that. So these are just some examples. So when we see all these changes in a person and they're all happening frequently and more on a consistent basis, because we all have our days, haven't we? You know, we forget things or we, you know, we have our moments. I have my moments.

 

06:42

But when it's happening to someone and the family start to realize, boy, this is happening a lot more and we're seeing it almost daily now, this is when we need to say, okay, let's go get this person checked because maybe they do have the syndrome of dementia. And maybe a clinician will say, yeah, we have all the symptoms of dementia. But the next question really should be, what is causing dementia?

 

07:08

What is causing this person to experience those symptoms? Because it could be because those same symptoms are within Alzheimer's disease. So is it Alzheimer's disease? But there's been cases where people have had all those symptoms and it's not a progressive type of incurable disease. It's actually something they can treat, which might be related to a vitamin B12 deficiency or even depression.

 

07:37

can show up those symptoms. But if we treat these conditions, the symptoms of dementia can go away. Even a thyroid condition has caused people to feel like they're developing what they call Alzheimer's. I've got Alzheimer's. Well, wait a minute. Let's go look into this a little bit more. So I highly encourage people to go and get this looked at by their family doctor or maybe even a referral to a specialist.

 

08:04

who can tell you what's really going on for you and your symptoms. And I might be getting a little bit ahead here, but we're talking about, you know, like certain symptoms that lead to a syndrome that must be much more difficult to define for people with cognitive disabilities. Yeah. So some people themselves that starting to show these symptoms may not recognize it in themselves. It's usually the family or friends or neighbors.

 

08:32

that are the ones to point out, well, wait a minute, things aren't quite right here. Um, yeah. And there is, you know, I thought I'd know what there is a condition that happens in people's brain that is common with dementia and it's called, are you ready for it? I am. Anasognosia. Says what? Anasognosia. And so if we want to spell it out, it's A-N-O.

 

09:01

S O G N O S I A. Okay, anosognosia. Gotcha. Yeah. Sognosia. So this really means no awareness of illness. So there are people that also have dementia and anosognosia where they think they have nothing wrong with them. They can still drive perfectly. They still know where they're going. They have a perfect memory.

 

09:29

but family friends will go whoa no no no no you're you're having trouble but they will disagree some people call it denial that the person doesn't think they have anything wrong with them and they're denying it but it really is a condition in eighty percent of people with dementia will also have anaphyl agnosia so it can be a challenge for families to try to convince someone to go to their doctor when they have this

 

09:58

Now Alzheimer's on the other hand. So, yes, Alzheimer's disease is a disease that Dr. Alzheimer discovered well over a hundred years ago now. And when he did the autopsies on his patients who were living life with similar types of symptoms that were getting worse and worse over time and similar changes to their, their function, their day to day.

 

10:28

When he did the autopsies on them, he discovered in the brain abnormal and excessive amyloid plaque. So plaque was excessive in their brain as well as what they call tangles, the neurofibular tangles, inside the neurons. So these two things, the amyloid plaque and the neurofibular tangles, were what...

 

10:55

he discovered was abundant in the brains of the people he was supporting. And therefore it, it, it, you know, eventually turned into what's known as Alzheimer's disease right now. And sadly, you know, the brain eventually shrinks because of the damage that's being done. The neurons are dying because they're no longer functioning and communicating.

 

11:22

The amyloid plaque basically is surrounding the neurons and causing them not to be able to fire their messages to one another and it's just so much garbage and sticky plaque that's just built up in the brain that is not allowing it to function the way it used to. But we do notice with Alzheimer's disease that it starts in the hippocampus of the brain and this in our brains is where our memory

 

11:51

and our learning takes place. Sadly, that's where Alzheimer's disease attacks first. And it really causes damage moving outward, almost like spreading like a little bit of a virus. And this is how we know when people are in the earlier stages, middle stages, later stages. It tends to go slowly around the brain to eventually we're dealing with a person who no longer knows how to walk or talk.

 

12:20

feed themselves, toilet themselves, that sort of thing. And it's really, really heartbreaking to watch a person go through that journey. Oh, absolutely, absolutely is. And again, if we're talking about people with cognitive disabilities, that might be another thing that's difficult to diagnose. Okay, so when you're talking with adults with a cognitive disability similar to maybe like a Down syndrome condition?

 

12:49

Yeah, it can be very difficult to diagnose. This is where the caregivers, the people that are front line with them as their primary caregivers every day, would likely start to notice some changes. This is not normally their personality, and this is not normally them having difficulty with their words and speaking, and they're really forgetful. And I just told them a sentence.

 

13:16

five minutes ago, but they can't recall even what I just told them. So people will start to notice eventually, but may not right away. But because usually with Alzheimer's disease in the earlier stages, it could be between two to four years before people get help because they don't see it. Maybe four years later. Yeah. It might, it's to those on the outside. It might not be as, as obvious because it might be such a gradual turn. It is gradual. Yeah.

 

13:46

So, but again, all we can do is rely on those frontline people to speak up and say something and then from there, let's get that person diagnosed and let's hope it is something that is treatable, like maybe a vitamin deficiency or something else that might be going on. But unfortunately, in the world of a person who has Down syndrome,

 

14:09

The sad part is that these individuals, as we know, have an extra chromosome. And this is chromosome 21. And the interesting thing here is that chromosome 21 is the chromosome that does have excessive plaque. It's responsible for producing the specific protein that is in excess.

 

14:36

for all of them to be like we see abundance of it. So when a person only has two chromosomes, there are, you know, they could have the chromosome gene, sorry, sorry, the chromosome has the gene that's responsible for the plaque. So if we're carrying that gene, we might have more of a chance or a risk of developing Alzheimer's. But when we have a third chromosome, it increases our risk. Do we know sort of what percent of a risk that might increase?

 

15:06

Yes, unfortunately, people with Down syndrome will have, well actually I don't know if I have that exact percentage. I'd have to look through my notes again, but I know it is significantly higher. What we do know is that people who are in their 50s have a 30% chance.

 

15:35

of developing all time and just the typically public in the story and and people who have down boys and now what the all barra society canada stand at statistics show is that people over the age of sixty five uh... they have and and more increased red of developing all time and fifty and i remember when i was working with the all time or society and

 

16:05

I was doing some presentations where I had to say one in 13 Canadians over the age of 65 are developing dementia. And then a few years later, that number changed and it was one in 11 Canadians over the age of 65. Now they don't use those numbers anymore, but they are saying currently half a million Canadians.

 

16:31

over the age of 65 are developing some form of dementia. But with people with Down syndrome, they're saying 30% of these individuals in their 50s are developing Alzheimer's disease. And then the statistics are showing that 50% or more are affecting the people in their 60s who have Down syndrome. So the numbers are.

 

16:58

Increasing faster and faster because the numbers go up every year after a person turned 60. That's very interesting. I mean, is it because we're recognizing it more or is there actually a problem? We're aging and we're aging longer and living longer. Right.

 

17:20

So the interesting thing is that years ago, 40 was over the hill and now people are living over a hundred years old. Like we're moving that life expectancy number over the age of 80 now. But people are living longer. Now there has been some information that came out of the United States that said in 2020,

 

17:48

the life expectancy for people with Down syndrome was age 60. And that compared to what it used to be in 1983. In 83, the life expectancy for somebody with Down syndrome was 35 years old. Wow. That says a lot about our health care, right? Yeah. So we're living longer. People with Down syndrome are also living longer to age 60. And so, sadly,

 

18:15

Years ago, I remember learning in school back in the mid-90s. There was almost like 99% of all people with Down syndrome would develop Alzheimer's disease. Now, I don't know if that number has changed. I think I remember reading it was lower now. However, because of that extra chromosome,

 

18:39

these individuals are more at risk of having excessive amount of plaque in their brain. Yeah, that's a huge percentage of the population. What about of the population with Down syndrome, I mean, like what about drug therapies? Or is any of this advancing? Well, so.

 

18:58

for many, many years. Actually, when I was first going to school in the mid-90s, I learned about the very first drug that was approved for supporting people with Alzheimer's disease, and it was called Aricept, also known as Denefazil here in Canada. That's been around for a while, and that's the very first drug. What it does is basically it's trying to help add what's known as

 

19:22

acetylcholine in our brain, so add more of it, because that acetylcholine is helping the brain neurons fire the message to the next neuron. And so to help it, because sometimes that gap is between the two neurons is growing and that neuron can't fire the message, but the acetylcholine can help. So the medication is helping people to fire messages better. And then there were two other medications from two other drug companies that basically are doing the same thing.

 

19:51

possible drugs on the market. One of them was a patch if people couldn't do the oral medication. So it's been really frustrating over the years. They tried to have a vaccine. Those studies had to be ended because of brain hemorrhaging when they went to human trials. There was so many attempts, but the last few years a drug did try to come out that was

 

20:19

helping to remove that amyloid plaque that I talked about. And so this drug had some controversy in the last few years because it came out saying it worked and then it didn't work and then it, oh no, no, no, it really did work. And so the Food and Drug Administration, the FDA, in the United States approved it and said, okay, we're gonna approve this drug now.

 

20:43

for use in the United States. It's not approved here in Canada, but so there's still, the jury's out for a lot of people on this type of drug, very, very expensive, and it's not a cure, but they're saying that in the studies and the trials that it did reduce some of that amyloid plaque, basically delaying the process of Alzheimer's disease.

 

21:13

workshops here, can you take me through, like when you're coming to DDA to talk to our caregivers, and we employ many because we have 19 group homes, we look after lots of people, take me through that process. What is it you're trying to impart to our caregivers to deal with these kind of situations?

 

21:31

Sure, I've had fun so far. It's been great. We've had full classrooms and lots of great participation. So basically, I am going through a reminder review of what is dementia, a review about what is delirium because a lot of people can mix up because there's a difference between delirium and dementia. And delirium, for those that are not familiar, it is a sudden onset

 

21:57

like suddenly similar symptoms to dementia, where there's, wow, they're not themselves, their, their, their personality certainly has changed. They're having troubles remembering, they're having troubles with their thinking and their poor judgment. And, you know, they're trying to stand up when they were told, sit in the chair because you just had a hip replacement and, you know, whatever it might be, they're doing things that are just off, you know, not who they normally are.

 

22:22

And so when we see sudden changes, I want all frontline staff to report that because a sudden change can mean delirium and delirium is treatable. But we need to recognize delirium and we need to get help because delirium is often due to pain, dehydration, maybe a urinary tract infection or any kind of infection. And these need help. So like hydration is needed for dehydration. Antibiotics for any kind of infection.

 

22:51

pain management for pain. So there's a variety of others, but just trying to help the frontline staff recognize delirium is treatable. If you see changes in the person you're caring for, talk to a nurse or a manager. I will do the overview of Alzheimer's disease for the groups and also what are the stages and what common things do we see in each stage so they can recognize the changes in their own clients and residents.

 

23:19

And I do share some of the statistics I shared with you about Down syndrome and the impact with dementia that it has on an individual. And the, you know, also that, which I didn't mention to you, is that with Alzheimer's disease, it's usually a very slow and long journey, which could last 20 years or more for some people.

 

23:48

diagnosed with Down syndrome, their length of time with this journey is between 9 to 11 years only. So it can come really fast and so having them aware of the different changes, different stages and I give them ways to cope with those changes. And I also give them some strategies on what we do when a person's behaviour

 

24:14

starts to really change because of their poor memory, their poor thinking, their poor judgment, their behaviors will change. So I give them strategies on how to cope with that. And then reminding them about, hey, you know, as they're changing, we still need to remember this is a person, this is an individual who has their own values and history and stories and, you know, abilities and disabilities. So we still need to work with them

 

24:43

using person-centered care. So reminding about what person-centered care looks like and

 

24:50

communication tips on how we can talk to somebody who has now difficulties with comprehension. So teaching them the communication tips and just reminding them of some self-care reminders for them because these frontline workers are so important and a lot of them don't realize that. So I really want everybody who's frontline to know how valuable they are in the work that they do and I really think that they deserve the recognition and the validation

 

25:20

So keep giving them self-care reminders is always important. Absolutely. These people are like family, right? So they are not just employees to us, they're vital to what we do. So from your point of view, when do people need to start seeking support?

 

25:42

and the individual themselves are they can't find workers i guess it is for the caregivers yet caregivers frontline workers even family members when you need to start looking out looking for support my suggestion is and possible and as you realize something going on here that looks like dementia if we can get connected to support whether it be

 

26:09

you know, just because knowledge is power. So building up your power by getting the information so you can understand what you're dealing with and how you can best cope through it. So I think right away, find the support people who can be in your corner when you have questions or when you have concerns.

 

26:30

And this could also be in the form of a group support where other family members, other caregivers come together and it's about an hour, an hour and a half type of situation where you can learn from each other, hear their stories, learn ways that they're coping and it could spark ideas for you. It may not be necessarily the exact scenario you're going through, but when people are together and they're listening to one another who are in

 

26:59

somewhat of a similar scenario, they don't feel alone. And that's a big thing, that's huge. I do a lot of caregiver support groups and that's one message I hear, gosh, I'm so happy to be here. I don't feel alone anymore. And that's huge. And that must be, I mean, even, you know, for typically developed people who are showing these signs, I mean, family members and caregivers must experience a lot of pushback, you know, like I'm fine, leave me alone kind of thing. How do you try and coax

 

27:29

in a nice way that, hey, there's something going on here and we need to check this out. Well, what I like to try, everyone will be different, but I do like to try to say, it looks like you're at an age where some people could develop low B12, and then maybe, let's go get your vitamin levels checked. So, approaching it in a different way to get to the

 

27:57

in the form of let's go get things looked at just in case it might be related to your thyroid. But not to mention the word dementia, never mention the word Alzheimer's disease in the beginning, just to get them into the doctor. But then to tell those family members to reach out to the family doctor in advance, talk to their secretary, whatever it might be, email if you can, to say I'm

 

28:27

you look into this. So that's one way to try to get them looked at by a professional without raising their, you know, their back up and trying to dig in their heels. I'm not going to get my brain checked. My brain is fine. Using another excuse to get to the doctor. Or one other family recently said, oh, it's your regular yearly appointment, wink, wink kind of thing. It wasn't quite a year, but you know.

 

28:54

then they weren't going yearly, but it's basically saying, time to go, or some families have contacted the family doctor, they please call my mom on Tuesday, I'll be there all day, and just say it's time for your appointment, so it doesn't come from me. Because sometimes when the families are trying to suggest mom or dad, whoever, to go to their doctor, they think that they're

 

29:18

suspicious and they're up to something. So they don't listen to their family member. But when it comes through by another, an outsider, like the doctor's office, they may go to their doctor. So there's the different strategies we try to use in order to encourage a person to seek more help. Now here in Canada or British Columbia, is there enough support for families for people with dementia and Alzheimer's?

 

29:46

Well, in my opinion, no. Is this, you know, perfect around the world? No. You know, this is a population that we can do better, we can do better. There's been challenges where even the family doctor has told the family caregiver

 

30:13

get out of my office, I'm not talking to you, you're not my patient. Whereas the family is just trying to get that doctor to understand, to see a problem. But sometimes only a 20-minute visit doesn't prove the person has cognitive challenges and therefore it takes longer to get a diagnosis. So in my opinion, we need family doctors to understand the value of the family caregivers and not to think that they're trying to...

 

30:39

set them up or gaslighting or anything like that, they're actually noticing something. So I'd love to see that stop. And then when they do get a diagnosis, there is a program which I'm so thrilled to see, and I remember being a part of the pilot project in Ontario called First Link.

 

30:59

with the Alzheimer's Society across Canada. And BC also has that first link program. So some doctors are on board with this and are really referring right away the families who they've noticed received a diagnosis into this first link program where they can then have a caller call every few months to check in on the family from the Alzheimer's Society. How are things going? What help do you need now with? Unfortunately, that program's not perfect either.

 

31:27

because sometimes the family caregiver can't speak on the phone because the person with dementia is in the room when they call and they don't want the Alzheimer Society phone number to show up on the call display because the person is experiencing anosognosia and therefore would be very offended if they're getting calls from the Alzheimer Society or if the person is speaking to other people on the phone about them.

 

31:52

So I wish there was more undercover type of support being offered to families. Interesting. And so that's a little bit of what I do is I'm available for families whenever they need to call me. And so yesterday I get a text message, Sunday afternoon, I need to talk.

 

32:11

You know, I text back, give me five minutes, you know, and I'll give you a call. So I like to be there for when families need it. And I wish there was a service like that for all of BC where families can call 24 hours a day because dementia is definitely not nine to five Monday to Friday. Definitely not. So families do need that outside the hour support of what do I do now? They're trying to wander. What do I do now? They're not taking their meds. What do I do now? She's screaming at me. She thinks she has to go to work.

 

32:41

PM at night and trying to leave the house. So these types of challenges families could use more support, a go-to place, other than me. Yeah. Now, because I have a friend of mine is launching a very similar business to what you do and so and I hadn't even heard of this kind of business that you and she do and it's almost like it's a growth industry. It's almost like we're kind of playing catch-up. Does it feel like that for you? Oh gosh.

 

33:08

Absolutely. And we've called this whole scenario about Alzheimer's disease or dementia as a rising tide. People have used the analogy tsunami, but no, we knew about it. It wasn't a shock to us that we're now swimming with so many people affected by Alzheimer's disease or another type of dementia. So we are up to our necks right now and we need more.

 

33:34

people to go to because families are stressed out. They can't do this alone. People with advanced dementia have more challenges that one person can handle. They need home support. They need 24-hour monitoring. And the caregiver can't stay there 24 hours a day, seven days a week without help or without getting out, without... ..

 

33:56

survival tips for themselves and the costs are also quite high and the frontline workers are not in demand like they're sorry highly in demand and they're not there to take over all of the shifts that are needed and required for people whether through the health authority or through private organizations

 

34:17

there is a shortage of frontline workers who are trained and compassionate using the right person-centred techniques in dementia care. So that's another problem. So there's so many challenges that, you know, and then caregiver support groups, we need more of these options for people.

 

34:39

that can be done over the computer now. Because people often can't leave their homes. So having now that COVID has introduced so more and more people using computers like Zoom or Teams, this is great to help these families who are isolated.

 

34:59

So much more could be done and I'm happy to brainstorm and share all of this if anyone will listen, but there's so much more I can talk about. Now let's shift gears a bit. Cracking the Dementia Code. Why did you write this book? Well, when I was working in Ontario, long-term care home, plus I was also working as an executive director for an Alzheimer's Society.

 

35:28

what things are like in the community for families as well as what it's like in long-term care. And the biggest stressor is when people start to develop the changes in their behaviors. What do I do? How do I say this? What do I say? Why can't I tell them their mom is dead? Why, you know, and, you know, so questions that a lot of families didn't know how to handle the behaviors. When I moved to BC in 2009, I was hopeful that BC would have been more advanced than Ontario was.

 

35:58

I really wanted to see things improve. Sadly, it wasn't the case. It was actually the opposite. Actually, when I realized, I looked into the situation and it appeared to me that BC was actually 15 years behind Ontario. And I was devastated and I felt as though there was no real support. There was no dementia care networks here, which I was a part of in Ontario, where these networks were people, businesses, families,

 

36:28

doctors, everyone coming together to really talk about dementia in their communities. But when I moved to BC, there's none of that. I volunteered for the Alzheimer's Society when I arrived and I saw the gap. And I also saw when I was working in a long-term care home, because I started back in long-term care here at BC, that the staff were doing approaches that were pretty much back from when I was starting in the field in 1995.

 

36:57

And it was just really upsetting to me. And I thought, I can't sit and wait for the government to make changes. And boy, when I look back, and it's been over 14 years now, I am so happy I took action and I created a workshop called Cracking the Dementia Code. And I had in mind the people that I saw making the inappropriate approaches in mind.

 

37:20

what would I do to want to teach them in an easy to understand way because English was not always their first language. So I made this workshop and I put it on for families and I put it on and I offered it to frontline workers. Over the years it's been keeping me busy providing this workshop in person. And then I decided that after receiving many phone calls, I hear you've got a great workshop I'd like to attend, but I'm in Alberta, or I'd like to attend, but I can't, I'm in the interior.

 

37:49

And so after word of mouth growing, I decided to write the book. So basically, I was taking all the material from the workshop, but adding in more, adding in so many more extra chapters because it's only a three-hour workshop that I do. So I wanted to provide that extra. And so I, it just fell into my lap, an opportunity to write. And here I am. I have this published book, which I am getting feedback is.

 

38:12

so heartwarming and uplifting that this book has really helped a lot of families and the frontline caregivers. So I'm just going to continue to go with the flow and really do my best to give the information. And I'm just so excited that I have this opportunity with the Developmental Disabilities Association here in BC to educate their staff and inspire them to continue to give great work. And just a side note, that book is available on Amazon as well as your website. It was

 

38:40

But that has also of course led to here in the digital age as an app that you've developed with a couple of people. Can you tell me about that? Oh yes. So I connected with somebody on LinkedIn who was really passionate about dementia care as well. And she reached out to me and I assisted her with her book on ways to care for a husband with dementia. She's a social worker, so she really focused in on caring for husbands.

 

39:08

And between the two of us, we decided, you know, it would be really helpful to have an app that was developed for people to have quick solutions at their fingertips. So her name is Angela Gentile, and she's in Manitoba, and her son does apps. So he helped us to do the actual app, but Angela and I co-created all the content for this app of ways that, and so it's called Dementia Caregiver Solutions app.

 

39:37

and it had a lot of solutions on how to handle common day-to-day issues that can arise for people that are living with dementia symptoms. Now, is that available on just on the app, any old the app store and Google Play? Yeah, it's only on the, sorry, it's not an, it's only an, sorry, not an Android, it's only an... Apple. ..an ISO or iOS. iOS, iOS. I always get that up, iOS. So, we were only able to make the one type of app.

 

40:07

I would love to see it on others because I have an Android, but I think over time things may develop and change.

 

40:16

But yeah, moving things, even my workshops, all online now, having to go to that online group to support people because we're now in a digital world, but still trying to make sure we support the people who aren't doing the digital world. Yeah, exactly. And that's a lot of people, especially in the aging community. There's people that just aren't as technical. So before we wrap things up, how do people get in touch with you?

 

40:42

Well, they can go to my website, Deme There's a contact us form that they can type in or call our phone number that's on the R1888 number.

 

40:57

I'm always happy to support families. We always give a free 20 minute consultation for families that are struggling, whether they're dealing with Alzheimer's disease or any other type of dementia. So we start there and then we encourage them to come to our free support groups that we do twice a month.

 

41:15

And if people can't come to the support groups on Zoom, because they don't do Zoom, they can call in and I'll just hold the phone up and we've got them on speakerphone so they can still listen. We've done that before. Is that mostly on Zoom or you do do in-person stuff as well? I do in-person, but currently all the support groups that I was doing prior to COVID all got shut down. And so now I'm only doing a support group in Coquitlam.

 

41:45

at the dogwood civilian but i also do support groups within long-term care home so they bring me and monthly i do support groups for the family there let sounds good i think we've covered a lot of bases here karen anything else to add today well you know if i can just quickly say that and i worry about caregivers i've always worried about them and that why i wanted to create the book

 

42:14

the part that can cause burnout. And I don't want caregivers to burn out. And so if I can quickly share three things quickly, if people are listening, if you are a caregiver, please, please, please, from my experience as a dementia consultant over these years, respite, time off is so important and people don't realize that until they take the time off. So please respite, number one.

 

42:35

Number two, talk things out if you're stressed. Go to a support group, talk to a counselor, talk to a dementia consultant, whoever it might be that can help you with the Alzheimer's Society. You've got to get it out, talk things out because you're going to learn things and you're going to hear things differently. And number three is never stop learning. So learn about the condition you're dealing with, learn about ways to cope. For me, those are the top three strategies for caregivers to survive.

 

43:03

It's really great having someone like you in our corner to provide these kind of services. So thank you very, very much from BDA. You have been listening to DDA's Encouraging Abilities podcast. Our guest today has been Karen Tyrell, an expert and author on providing care for loved ones facing dementia and Alzheimer's, conditions that we know of course can affect people with developmental disabilities at a higher rate. You can find more information on our company and our books at Deme Karen, thanks again for joining me today.

 

43:32

Thank you once again for having me. I appreciate it. Thanks for listening. See you next time.