When someone is living with dementia, challenges abound. Join me for a conversation with Ashley Bright and Heather MacLeod, experienced instructors of a course designed to provide a deeper understanding of dementia. They’ll share a practical framework for navigating the journey, along with actionable tips to ease daily life for caregivers and families. How can we learn to “enter their world” rather than trying to bring them back to ours? What strategies help caregivers adapt and connect with individuals where they are? What communication tools and practical approaches can improve daily interactions? As Ashely notes, “We can lighten the load when we choose to learn a little more about dementia.” Whether you’re a caregiver, family member, or simply want to understand more about this condition, check out the insights and resources in this episode.

Transcript:

Diane Hullet: Hi, I’m Diane Hullet and you’re listening to the Best Life, Best Death podcast. Today I’m here with two wonderful colleagues and old friends, really people that I met at the very beginning of my journey in this work at the Conscious Dying Institute. And the Conscious Dying Institute is now called the Conscious Dying Collective.

So welcome to Ashley Bright and Heather McLeod. Thank you. Hi. Yeah, it’s like old colleague week. It’s so great to see you both. We, I, we wanted to get back together because CDC is offering some really interesting courses and I asked Heather and Ashley to come on and talk with me particularly about a course that’s starting in January 2025 that I think is relevant to a lot of listeners.

So Ashley, just give us an overview of CDC. 

Ashley Bright: CDC is growing and thriving, and one of the things that we find very important is to provide continuing education for those who go out into the world to become doulas, but also for people who are interested in just caring for the people that they love. Don’t necessarily want to have a doula certificate, but they need knowledge to be with someone who’s living with dementia or to help someone who has dealt with a suicide in the family or sudden death.

So we try to offer a variety of things. We’re also doing a whole revamp on our doula curriculum. So that’s going to be very exciting for next year and hopefully incorporating some more. Folks who want to just do this as community do a work as well as professionally. So lots of things going on at CDC. So 

Diane Hullet: amazing.

And how did you personally get into this work? Tell us the like elevator speech of your story. 

Well, actually, I am a social worker in a skilled nursing facility in Tennessee. And I was challenged by my supervisor about seven or eight years ago to pick something that I want to learn more about and go learn about that thing.

And something that just kept popping up on my computer was the Conscious Dying Institute. And one of the things I’d struggled with, with my patients was that, A lot of them were tired and were trying to express that they were ready to die, but their families were not willing to go along with that and wanted them to keep pushing, keep fighting when they were just really tired.

And so, the more I learned about CDI, the more I wanted to keep pushing. See what it was more about and I signed up for classes and back then they were on site and the rest is history. 

Diane Hullet: So it’s such a journey, right? When you kind of open up to the possibilities in this work and then find that there’s this whole community of people out there working in this field as social workers, as nurses, as doulas, as clinicians of all sorts.

Heather, how about you? How did you get into this work? And tell us while you’re at it about your special dementia training. Thanks 

Heather MacLeod: Absolutely. Thanks, Diane. I got into it, I was working with adults with diverse abilities and a co worker said, You know what I want to do when I retire? I want to be a death doula.

And I said, You want to be a what? So I went home and looked it up and realized I didn’t know a whole lot about end of life other than usually people get close to the end of life, they move into a long term care residence and they die. Well, I just read what the Conscious Dying Institute at that time had to offer.

And I thought, Oh my gosh, this sounds beautiful. It spoke to everything I was curious about. So I registered immediately and went through the program on site as Ashley did and fell in love with the program. And it turned out that my father was my very first client and my family said they were very grateful that I had the knowledge that I did.

And I, I owe my beginnings to the Conscious Dying Institute, then I was asked to be a part of the Conscious Dying Collective staff, and I jumped at the opportunity. So here I am. And my training with dementia my father had dementia. dementia. We weren’t exactly sure at the time what form of dementia, but my mom also had two bouts of cancer at the same time within five months of each other.

And so I noticed complete changes within my father and what I was being offered. Was not kind of hands on stuff. I went to support groups and things, but just found that I wasn’t getting those things that I was really curious about and the ways to help my dad. So I took training through tipa snow and the positive approach to care was so excited because I learned actual hands on tools.

to be able to support Dad when his memory really affected his daily life. And I could explain to my mom things that were happening as I watched my dad. And it was, it was an incredible gift to be able to take that. And then I went into the consultation piece. I’m also a consultant with them and being able to brainstorm, problem solve, challenge solve around the different issues that come up for all people living with dementia and particularly their care partners.

So it could be family members, the team at wherever who is working with this person so that they can live their best life and have their best. 

Diane Hullet: That’s, that’s fantastic, Heather. I, you know, I think it’s worth noting two things. One, to spell Teepa’s name because, you know, you, we rattled this off Teepa Snow and people are always like, wait, who, what?

That’s a thing. So it’s a woman and her name is Teepa, T E E P A, last name Snow, like snowflakes, and Teepa Snow is one of the top kind of dementia educators in the country and around the world. And so the fact that Heather went into her training is now a consultant. I just think that’s fantastic. And then the second thing I wanted to say, and tell me if you’ve heard the same kind of thing.

I feel like I read somewhere recently that people used to be afraid of cancer. Like the C word was the big thing that people said they were most afraid of. And now I think so many cancers are well managed and yes, it’s a grueling journey. And people buy a lot of time and often live years with a cancer diagnosis.

But now the word that people are afraid of is dementia. The word that people say, Oh no, I, I don’t want to live with dementia. I don’t want my mom to suffer with dementia or my parents or my sibling. So dementia, I think as we live longer, dementia has become this thing that more and more people are living with.

And. Younger people, say people in their 70s, look ahead and are afraid of that. Is that true from what you are both hearing? 

Yeah, that’s very true. And the simple fact that currently, and my numbers could be a little bit out, but there are 120 plus different forms of dementia, and there is also pediatric dementia.

So dimension knows no boundaries. It knows no bounds where it doesn’t affect someone. We all seem to know someone who has some connection to dementia, just like it was in previous years with cancer. And so the joy of that is, is the training. That I’ve received helps people to remember that the person that they love is still in there.

They are still inside themselves with the right support and the right trainings. We can still make everyone, no matter where they are on their dementia journey, shine. And still be connected, which 

Diane Hullet: is amazing, right, which is the power of community and the power of family and the power of friendship. How do we stay connected?

And I think you’re right. People are so afraid if I get dementia, I won’t be me and I won’t know people and nothing will be there. So, you know, start really basic. Either one of you what, you know, what is dementia? That’s such a catch all term. If we think of the word 

dementia. As the umbrella, that’s dementia underneath that umbrella.

is Alzheimer’s, Frontotemporal Lobe, Vascular Dementia, Parkinson’s, Lewy Body, all of those categories fall underneath there. And there are things that we can do that Ashley and I are finding out with our research that we’re doing, looking at various things that are coming out, new studies and things, that it goes back to the old saying that we are what we eat.

And so ways to kind of keep that at bay are to eat healthy. Exercise regularly, get enough sleep, keep stress at bay, do those joyful things in life that we, we really enjoy doing that make us laugh that, you know, keep us going forward in life rather than being sedentary and sitting and eating the not so healthy food.

We’ve become a society of instant things. Well, some, sometimes things take a little bit of time. And when we, Continue to do those things. Those eat healthy exercise. It not only helps our brains, but it helps our bodies. And so with our brains, our brains are so delicate. Diane, there’s a reason that they’re inside the skull.

You could take a butter knife and slice right through the human brain. That’s how delicate it is. So we want to do those things that can take care of our brains and of our bodies, which is the Eating right, exercising, and it’s not necessarily the sitting and doing the crossword puzzles the word search things.

It’s actually getting out and doing that problem solving of everyday life that really helps to keep our brains healthy. So that getting out, getting that fresh air, doing the things with families that really help our brains to stay healthy. 

Diane Hullet: I remember seeing, I’ve, I’ve read a couple of Tifa Snow’s books and I remember in one of them, she has photos of the brain and that was one of the most memorable things to me, partly, you know, visual learner and all that.

But like when I saw a healthy brain and how much space it takes up and how big and full and kind of vibrant and juicy a healthy brain looks. Versus the atrophy brain of dementia, it was really a visual of how valuable our brains are and how, as you said, vulnerable our brains are, and when they atrophy, it has a big impact on different parts of our lives.

So, I love that you said that. It’s like, how do you keep problem solving? How do you keep encountering things that are problem solving as you age? 

Well, you know, in those visuals that you’re talking about, that TIPA provides, we use those in our class and a lot of times. When our students see those visuals, it really helps to illustrate that.

And like what we we say a lot in class is that people who are living with dementia aren’t giving you a hard time. They’re having a hard time, right? So it’s that visual look at the brain really is missing some of those parts and they’re not able to maybe express. their feelings and what we feel is a proper manner.

So we have to sometimes figure out ways to discover what is it that they’re trying to tell us because they don’t have the words, you know, anymore because those parts of the brain literally are missing. So seeing that visual helps to bring that home. Yeah. And I’ll add to that with dementia, it does affect the vision.

It does affect the hearing. I work with people who have dementia in a residential home, and I notice the impact that dementia has in various ways. And when you know one person with dementia, you know, one person with dementia, it affects everyone differently. Something as simple as calling someone’s name.

They lose the ability to pinpoint where that sound is coming from. Dementia affects that part of the brain and also the vision. Is changed and so that we lose a lot of the vision. And when we come up to someone and we touch them right away to say, hello, how are you today? They jump a mile because we startled them.

So there’s a process of making sure that we get their attention 1st and then approaching them when we’re invited in. And so there’s all of these things that we talk about in the program that Ashley and I offer and it’s, it’s just such a blessing to be able to pay it forward and giving this information.

 That has been. given to me through trainings and Ashley with her experience as well as a, as a social worker. It’s just been phenomenal to work alongside her. 

Diane Hullet: So is the course more for people who are working with people with dementia, or living with people with dementia, or those who have dementia?

Yes. Awesome. All of the above D. I think it sounds like you’re offering both like a theoretical framework and then also practical. 

Yes. And that’s the joy and that’s the gift of working alongside the National Council of Dementia Minds and Black Dementia Minds as well. That our connection with them is they have provided some people who are living with dementia.

They’re living that journey. They come and they’re a panel for us. With our sessions, and so our students have an opportunity to be able to ask them questions because they are living it and they can tell you things that work well for them, things that don’t work so well for them, what they wish they had, what they wish they didn’t have, terminology that they prefer to use.

So this has been a real gift as well to be able to have these people come alongside us and join this journey that we’re all trying to support one another with. 

Diane Hullet: That seems like a really unique aspect of it, because there’s something about, I don’t know, about book knowledge or the one person that you know who has dementia, but you’re really talking about how do you get a well rounded picture and out of that develop real tools.

And I love what you’re saying about that there are pragmatic things about not approaching somebody quickly, or I remember Tipa’s book talked about, you know, you may be used to yell across the room, Hey, honey, what do you want to have for dinner? And that’s no longer going to work. So instead of assuming that’s a big problem, learning to adapt to what now works.

Yeah, it’s very important to come to their world when somebody is living with dementia instead of trying to get them to come back to our world. It’s just going to cause frustration for them and for the person who is their care partner. So that’s what we’re trying to do is trying to help our students find ways to make life less frustrating for both of you and how can we work together.

By entering their world and working with the things that the person living with dementia is able to understand and work with. Exactly. Yeah, and it goes back to, again, meeting the person where they are because they can no longer come back to where we are. And it’s really important for us as care partners, we’re the ones who can change.

And that means family members that means the care staff, the doctors, the friends. You know, if we could build a community, can you imagine a community Where people take the training just to get the basics down. When someone in their community on their street, their neighbor is living with dementia and that whole community, that neighborhood comes together to support the family in supporting the one living with dementia, to give them those much needed breaks, to give them a bit of.

Their own life back because as a caregiver, as a care person who is living with a loved one with dementia, that care burden feels so heavy, but we can absolutely lighten the load when we all choose to learn a little bit about dementia so we can support the person who is living with dementia, who’s on that journey, and their loved one, the person who is there the 24 hours.

It’s not a journey we have to do alone, nor should we do it alone. It takes, they say it takes a village to raise a child. It takes a village to support a family when a loved one is living with dementia, for sure. 

Diane Hullet: It seems like we do a fair amount of almost protecting that person, like out of shame or out of embarrassment or out of fear what I see is when someone has dementia, there tends to be then more isolation of the couple or of the person or of the family and kind of nobody wants to talk about it.

But I’m also so struck in what both of you are saying that there’s so much value in leaning in that, you know, how do you lean in as the caregiver and how do you lean in as the community? But it’s much easier said than done. 

And that’s why we feel like having everyone. presented the opportunity to take this class.

So we don’t require you be a doula first or a coach first. You know, we want this to be for everyone. Even if you maybe don’t directly know someone who’s living with dementia, but you have a friend or someone that you care about who is a care partner and you just want to support them just like Heather was saying, just just wanting to know more about how to interact.

With someone should you come across someone who’s living with dementia. I recall that My grandmother had a some form of dementia. I’m not sure what which one she had but my grandfather was very intentional about bringing her into the friend groups that they always had and making her be a part of the conversation.

So even though she might not have understood what they were talking about he wanted her to be in the middle and to be a part, just living her best life, you know, as much as possible. So just encouraging communities to, to come together, like Heather was saying is very important. And wouldn’t it be amazing to have a community where the bankers, the shopkeepers, the first responders all had tools to offer when a person is walking downtown and looking completely lost, to provide those tools for all of those support people, because it does take a community.

And Diane, if I can just do something real quick. The thing that we do is we make people guess all the time. You know, who am I mom? Do you remember my name? Do you remember who I am? So, I often recommend this and I have this in my home. I have a piece of tape. A piece of masking tape with a felt pen. And I just ask, this is what I did for my dad.

I just ask that when people come, they take a piece of masking tape, write their name on it, and put it on the right side of their chest. For So that when they come into the home, dad didn’t have to guess who they were and everything is right here. The name is right here, your face is here and you say hi and you greet the person who is living with dementia.

It’s Heather and you put your hand out. They reach their hand for yours because that’s the automatic reaction, right? And so they’re inviting you into your space, but you’ve provided them with your name. It’s right next to your face with the friendly greeting of hi. So that’s a little tidbit of very helpful information to not make the person guess.

And when we can read the field, when we can see what’s going on in the room if you can smell something for lunch, Oh, it smells like, and name the thing that it smells like. Provide that person with information first before we say things like, Oh, did you have lunch today? What did you have for lunch?

Okay. No, we haven’t eaten yet. And then you put them in an awkward position to, Oh, something smells really good. Do you smell that too? Provide them with information, front load them is what I’m saying. 

Diane Hullet: I love that phrase. Front load them. Yeah. There’s something about we, it’s again, we want them to interact as, as it, as they’ve always interacted as opposed to, or as compared to stepping into their world and giving them information that helps them be part of our world.

Exactly. 

Exactly. 

Diane Hullet: What else do you think is most useful for people to know, especially if they’re just stepping onto this dementia journey with a loved one in their life? 

Well, what I would want somebody to know is that they’re not alone. There is a whole community of people who are doing the same thing, probably, as you are as a care partner or as a person living with dementia.

But as you said before, Diane, sometimes we tend to isolate ourselves because of the shame or because we’re afraid that people might not know what to say to me or they may not know what to do. So. Just knowing that there is a community of people who are all going through the same thing, and we want to share that we can support each other, and you don’t have to do this alone.

Yeah, those are great, Ashley, and what I would say is patience. Patience and more patience, because as Ashley had mentioned, they’re not trying to give us a hard time. They’re having a hard time. So if the opportunity is there, just to sit with them. We don’t have to say anything or do anything. Just be present.

I find for myself music. I start to hum a song. Songs from the old days. If I happen to know the person quite well, I might put on some music. Some of their favorite music. Music. Because we store the rhythm and music and poetry, all of those flowing things, we store those on the right side of the brain. And what’s been noticed is that A lot of the right side of the brain is not as affected as the left side, which contains the language and speech production and comprehension.

So any form of music is really good. That is something that is familiar with them and we can make that connection something as simple as singing. You are my sunshine or. Some other familiar song that they will know, and they’re able to participate because they’ve remembered that song from childhood. It is still stored there, but just to be cautious that the other things stored on the right side of the brain or those swear words.

So, it could be that you and your loved one are going downtown to go shopping and oh, my gosh, there’s some not very kind things coming out of the loved one’s mouth. But that’s what’s there for them. That’s their world currently, and that’s what they do. Some people carry little cards that say, My loved one has dementia, and You know, I’m sorry if this has offended you.

They’re doing the best they can. Thank you for your patience, you know, having those little cards. If someone is looking totally shocked, then that’s a, that’s a way of supporting that couple in the community and going. Right, so beautiful that way, but absolutely the gift of music is beautiful. 

Diane Hullet: That’s really lovely.

I’m struck by it seems like there’s so many lovely like individual things to do, and it seems like the hard thing is just the arc of the journey like you’re you’re as a caregiver, you’re kind of in it in it at the ankle level, and then you’re in it at the knee level, and before you know it your waist deep or chest deep and you kind of didn’t even really acknowledge that you were at the ankle level.

I keep thinking I wish there were some way to almost like. I don’t know acknowledge this for people are like have a community ritual around this where there’s some kind of naming of like the old way is gone. And we’re in this new territory. We’re walking in a new place now. And and that’s where the loneliness I think comes in.

It’s like, Oh, God, I’m chest deep and I didn’t even realize it. And now what do I do? And then it’s hard to have the energy or the time or people are working Yeah. to reach out and find the resources, but let’s let’s leave listeners with some resources. Where can people find out more about your class and about tipas work?

Yeah. Diane, you know, we do talk a lot about grief too in our class and we call that anticipatory grief because when you get a, Diagnosis of dementia. That’s when your journey starts. So we don’t want to not acknowledge that it is going to be difficult. I mean, we kind of make it sound like there’s lots of things that we can do and then we can make it easier and we can, but it’s still difficult.

And so we do acknowledge that we talk about it a lot in class. So along those lines, our class is called the Dementia Journey. Because it is a journey. So we talk about what does it look like when dementia is just starting? What does it look like when we have to talk about going into a facility? Do we need to go into a facility?

How can we be supported at home? And all different kinds of things, all the way through to what does dementia look like at end of life? Of course, because we are the Conscious Dying Collective, so we want to make sure we include that to the whole journey. And so you can find our class at ConsciousDyingCollective.

com And there is a registration button on that to register for class, and they do start January 8th. is our next class coming up, and it runs for six consecutive weeks, and you do get a certificate at the end of it. You can also, of course, look at Tipa Snow’s website, tipasnow. com. She has a lot of things on there.

She’s got lots of YouTube videos. If you just want to look up a certain topic, you can always do that. And I think Heather may have a few more resources as well. Yeah, Black Dementia Minds, you can look them up on the internet and Google and also National Association of Dementia Minds. That’s a really good resource to look up as well.

Yeah, Tipa Snow has a bunch of them different videos, video clips, free information lots of hands on stuff. So she’s, she’s a really great resource. But again, there’s conversations with the NAS, National Association of Dementia Minds. There are videos on there, even doctors with dementia, and like I say, dementia affects everyone.

So there’s a panel of doctors who have talked about what it’s like living with their diagnosis, and what it’s like day to day with dementia and being a physician. So, lots of resources out there, and in our program, in our course, we offer a lot more resources. Books, movies, hands on pamphlets websites, all of that.

So, lots of information in the course. 

Diane Hullet: Fabulous. Thank you so much to both of you. So you can find out more at the ConsciousDyingCollective. com as Ashley said. You can find out more about the work I do at BestLifeBestDeath. com. And I have to put in a quick plug, Ashley and I first spoke back on podcast number 112 and we talked about her work as an advocate for end of life.

And I just think the work that both you do is so tremendous and I’m so grateful for your time today. 

Thank you, Diane. It was fun being on with you again. 

Diane Hullet: Thanks, Diane. Always a pleasure. Thanks to listeners and hope this gives you some information and resources you can put to use today. Thanks so much.