Tiffany (00:07.888)
When families are navigating dementia care, they're often making emotional, high stakes decisions without a roadmap. Today's guest helps families and professional caregivers see what others miss. Carrie Alberts, also known as Dementia Darling, is a dementia educator with a background in gerontology and years of experience supporting caregivers through some of the hardest decisions they'll ever make. In this episode, we'll talk about how professionals help families interpret what

good dementia care really looks like, what to pay attention to when touring communities or hiring help, and how communication and emotional support shapes better outcomes. Welcome to the podcast, Carrie.

Carrie Aalberts (00:48.364)
Thank you so much for having me, Tiffany. I'm really excited to have this conversation.

Tiffany (00:53.863)
Before we dive in, can you share a little bit about your journey and what led you to focus your work on supporting caregivers and families navigating dementia care?

Carrie Aalberts (01:03.758)
Absolutely. I truly think this has been my lot in life and it really did start when I was six years old and my grandmother was diagnosed with dementia and my father became her family caregiver overnight and watching you know that and looking back on it now you know with Hindsight is 2020 seeing how that did affect me and how it led me to study my College was focused all my studies were focused in gerontology the study of aging and through

that and going to college, I got to really see why I thought this work was meant for me being with seniors and then specifically people living with dementia when I started my first job at an intergenerational adult daycare center. So there was preschoolers that would come over and see the grandmas and grandpas that I was so grateful to take care of every day. And it was just, it was so beautiful, right? That's like, yes. So how could that not be like, this is

Tiffany (01:56.197)
Yeah.

Carrie Aalberts (02:01.26)
why, like this is why I'm on this planet. This is the most incredible work. And during that work was when I really realized, okay, this is what I meant to be doing on this earth is supporting the dementia community. So it really did play the seed was planted when I was very young and I didn't realize it at the time, obviously. And looking back, it's kind of, it's kind of wild to see how I was, I think meant for this work.

Tiffany (02:26.843)
Yeah, I mean, the seed was planted at six years old and this has literally become your life's work. That's amazing.

Carrie Aalberts (02:34.435)
Yes, I'm so grateful. I'm so grateful. So all of that has led me through some amazing work over the last 15 years. And then now I'm full-time dementia educator as dementia darling. So it's a true dream.

Tiffany (02:48.547)
Awesome, we definitely wanna take from your experience today. So I first wanna start out by talking about how many families walk into dementia care decisions without knowing what questions to ask. Can you talk about the cost of making decisions without guidance?

Carrie Aalberts (03:06.358)
Absolutely, and I mean, first off, dementia caregiving is a completely new language and world. So we need to give ourselves some grace in knowing you don't just wake up and say, I know what to do in this situation. That's just not how it works. You you have to learn this whole new world and on top of it, navigating healthcare and all the things. just know, yes, this is overwhelming, but we need to take little bites at a time and we can't take it all in at once because

this is a progressive disease. This can be a very long journey. So that's why it's so important to get guidance because if we don't seek the support and guidance that we need in the beginning, it can quickly become this crisis, chaotic moment of trying to figure out what's going on and being in crisis mode all the time isn't going to help anyone. So it's very important.

that we seek help. And I know that's really hard when you don't know where to start, when you're given a diagnosis from a neurologist, doctor that just says, here you go, good luck. And we say the diagnose and adios, where you don't really get anything. And that's why people turn to social media. So I think it's just really important, first off, to realize that there is community and it...

on top of everything you have to do, you have to seek it out and we have to find each other to make this journey a little bit less stressful and intense. It's the hardest journey to care for someone and specifically with a progressive disease. So knowing that there is community and there are people out there that want to help is very important. So I always say to first take a breath.

when you get this diagnosis and realize that you're going to be walking this path and look for someone on this journey that can support you. So whether that be a geriatric case manager or a social worker or social media platforms you follow to learn about things or a caregiver app, there's many different supports that are out there to help you get started.

Carrie Aalberts (05:27.278)
But yes, it's very important that we seek out other caregivers because that's how we learn and that's how we find out what else and all the supports and all the things that we might need along the way. Caregivers are such experts.

Tiffany (05:45.307)
feel like we're so lucky to be in the day and age of social media. And it's it makes it where it's a little bit easier for us to find these experts, people that have been there have done that. I really appreciate you talking about taking it little bits day by day finding your community. Those are all really, really important things when we're talking about dementia care, because it is overwhelming. What do families often miss when they're first navigating the dementia care journey?

Carrie Aalberts (06:15.906)
I think first off, it's super easy for the families to not be validated in their journey. you know, we're, of course, we're focused on the person living with dementia. That's very important. But dementia is a family disease. It touches everyone, right? I mean, it is unlike any other where it really truly is touching everyone that's a part of this journey and not just the person living with dementia. So I think it's often missed the impact

on the family caregivers, the, you know, if let's say you're a sandwich caregiver and you have kids at home and now mom's moving in with dementia, that's affecting everyone in the household and how we have to be aware of these things so we can protect each other and learn along the way. Education is key, so I think it's...

it's so important for us to get the education that we need that's palpable in the beginning and that's appropriate for the children that are, you know, helping and care and seeing these changes and how it's affecting them, how it's affecting the actual family caregiver, how it's affecting their person living with dementia. They're grieving. That doesn't go away because dementia is in the mix. They're grieving their losses, the change of their life. So I think, you know, in the mix of everything in the beginning, trying to find the doctors and the medical things,

It often gets missed, the emotional toll, the grieving, all of that that's going on in the midst of all of this. And that gets pushed and pushed until it kind of hits you later when you finally maybe have a second. There's not many seconds to breathe, it feels like when you're a caregiver, but you know, those parts of caring for our own hearts and minds easily gets pushed off and puts on the back.

put on the back burner. So I think we need to stop and remember that we're all human and we have to acknowledge the grief. We have to say that's valid and this is really hard. And I think that's what gets missed because we're so focused on everything else and that's valid. But we can't push down being human and those feelings.

Tiffany (08:29.895)
it's so important to really embrace that feeling of grief because it is normal. And I find that sometimes, you know, the professionals that we're going to, even our professional caregivers, they can help us through that process and how to manage some of these emotions and maybe how to even look at the situation in a different way. Yeah, I think looking to their expertise can be...

Carrie Aalberts (08:51.468)
Yes. Absolutely.

Tiffany (08:57.295)
you know, really helpful. A lot of times we think about how caregivers are coming in and they're providing care to that person, but we don't realize they're also providing really great benefits to the family as well by offering them even just saying validating, I see you where you are today. I see that this is stressful in maybe even providing them, you know, maybe we try something this way. Maybe we try, you know, this worked the other day, but it's not working today. Let's try these other items. And it's great to have those.

professionals being able to come in and say, let's try some other things that might work, it might help.

Carrie Aalberts (09:29.326)
Absolutely, it's key and and we have to be you know, it's often that because I've been on the side of being a professional caregiver and I have not become a family caregiver quite yet and in those situations I you know, sometimes I've had bad bosses that kind of Say, you know, okay keep your distance from families, you know, you don't want to say the wrong thing There's liability da da da da but we have to build we're a team. We have to build that bridge

So the family caregiver, the professional caregiver, we work together and we lean on each other because we all have the same goal is making sure we give the best possible care to this person. And so it's so important to have that common ground because it can be difficult. I've seen that before. So it's so important to know we're on the same page. I'm here to support you with the knowledge I have as a professional that I can bring, but you are an expert in your person. And so we come together with our expertise.

to try different things, to lean on each other, to talk about the changes in this person that you love. And as you said, the different mindsets that different caregivers can bring, I think it's helpful too for the professional caregiver to come in because they have kind of that distance that, I didn't know your loved one like you do, I don't have this. So I can kind of show you the mindset of.

taking the person and the dementia separately, and remembering, okay, this is the disease, this is not my person. just because they don't maybe remember my name, that doesn't mean they don't love me. Their heart hasn't changed. It's just, unfortunately, their mind has changed in these ways. And yeah, those mindset shifts are everything. And sometimes we need that outside person to help us get there. And yeah, just these relationships are so important.

Tiffany (11:23.591)
Some of the biggest decisions families make involve choosing a place or bringing help into the home. What should families pay attention to when researching both of these options?

Carrie Aalberts (11:35.349)
so important. The first thing is trust your gut. Trust your gut. I hear so many caregivers that go, I wish I just listened to that little thing inside of me that said this wasn't the right fit. Trust your gut. And also, you need to really look into the education and training that the staff is getting. The care frontline staff is making sure that they have up-to-date education on dementia and that they actually have

this experience because as we said earlier, this is a whole other world of care. This is another level of care. This is something that is a different language and world because dementia is so, so complex. so yes, the education is number one, asking point blank to the management, what does your education process look like for your care staff?

You don't have to know all the credentials and things by heart. That's not realistic. But just knowing that they're getting consistent and up-to-date information and that it's not just a couple of videos when they sign on to the job. this is, know, dementia education should always be growing and building on top of what they're learning. So that's a big sign. And if they can't give you a clear answer, that's a red flag.

Tiffany (12:59.527)
I really appreciate you talking about the training as a person who helps our owners at Comfort Care and At Your Side with what training are they providing, what tools are they giving to their caregivers to be successful in the homes. We've created DementiaWise, which is a program that's going to, the number one goal is to help our clients have better days and to support the family, support the clients. And so it is so important.

Like you said, if they can't tell you very clearly what they're doing to help their caregivers have that knowledge, and we always think of it as setting people up for success. We want to give you all the tools that you need to be successful. And training is just that. Of course, it's one of those things that we all look at and go, I don't want to do training. I don't want to do something extra, but it really does benefit. And that's another thing we're looking at.

We realize we're taking people's time, so we're making sure that the content that we give them is something that's gonna be worthwhile and something that's gonna help them actually, like we said, create those better days. That's huge. Can you talk about communication cues that signal respectful dementia care? I think that's also important.

Carrie Aalberts (14:06.606)
Absolutely.

Carrie Aalberts (14:14.08)
Absolutely. For example, so something, you know, it's easy for people to have buzzwords and be like, we do person centered care and we do this and this. So being very like aware of, okay, do they actually walk the talk? Like, do they say these things? And then do I see it happen? Like, do they give those opportunities to, you know, be personalized in that person centered care that they talk about? And how did they go about that? Things like that. You're really paying attention to.

Tiffany (14:21.67)
Yes.

Carrie Aalberts (14:43.63)
if they actually do the things they say is, really big, but, but also just language in general. So one thing is I, I know that I would rather live in a community than a facility. So if I go into a tour and they're like, welcome to our facility, that's not like that right there as a, as a red flag to me.

And I want like I want them to say welcome to our community. This is a community that people want to live in. I don't want to live in a medical facility. So wording is everything. If we are talking about, you know, if you hear someone using obsolete language like demented, you know, instead of someone living with dementia, if you hear, you know, if you see a care care staff without knocking on the door, just walk into someone's door when you're on a tour.

that's a red flag to me. It's how do they respond to the residents that are around them? How do they respond to families? Do, if you're walking through a community with the ED, the executive director, do the residents know that ED or is it, can you tell they just kind of walk through as a show during tours? know, just being very aware of the dynamics within the people in the room is really big.

because you can tell how people are comfortable, whether it being the frontline care staff or the residents or the family members that are around that can tell you a lot about what it's really like at that community. yeah, just really making sure or paying attention to the language. Is it dignified? What I want to be spoken to like that? Are they giving people enough time? Are they patient? So those, yeah, those are some of the big things communication wise.

Tiffany (16:34.683)
absolutely agree and I appreciate those red flags that we should really be looking for and thinking about. Can you talk a little bit about maybe some green flags that sometimes go unnoticed that are important?

Carrie Aalberts (16:46.594)
Yes, I think it's so important to see or feel, you can feel when you're in a place, like one, like you can kind of feel a green flag. I hope that that doesn't sound strange. But when you walk into a place, like I said earlier, when you have that kind of like gut feeling about some place, there can be those gut feelings of good things where you're like, this feels like home. Like I've had those experiences. I've, you know, where I walk in, I'm like, I could live here. These people, feel so welcomed.

That's a big thing. And the, again, how they're speaking to each other. So one, that could be a red flag or a green flag. Does it feel like people really care about each other? Are they calling people by their first name and not sweetie, honey, baby, darlin'? You know, are they actually, can you see the relationships that are happening between people in the community? Or, you know, if you're talking to a,

a person that might come into your home and is a caregiver, ask them about themselves. And those green flags of just being a human that wants to do good in the world. And you can really get to know someone by asking about why they want to care for people and why they're there. And those can be really great green flags. just seeing care staff.

take initiative is a huge green flag. Like start an activity or do things just on their own and start things and be proactive. That's a huge green flag as well because it shows that they feel confident in their work and they know what they're doing. And so that's a big thing as well.

Tiffany (18:31.405)
What advice do you give professionals who are helping families through these decisions?

Carrie Aalberts (18:37.358)
I definitely tell them to not rush. We don't want to rush this huge decision. As we know, know, bringing someone into our house or bringing our person, you know, moving them into a community, these are big decisions. These, you know, this is big. I get it. This it's heavy and it's a lot to think about.

So giving yourself time and letting yourself see your options is so important. So that's when you know, you really want to ask questions to You know if you want to work with a social worker, let's say or a someone that can help you find different Resources in your area, you know seeing the actual Choices that you have is really big. I know it can be hard because we're in the thick of it We don't have time to tour. We don't have time to call everyone

and we just see one place and we're like, let's do it. I totally get that. taking a step back and taking time to at least talk and look around for more than one place to see what else is out there is very helpful. But again, to not rush through it. It's so important not to make decisions in the midst of crisis, but I know it can be really difficult. You're in.

Maybe you're in a hospital and you have to figure it out or you can't get discharged with your person. So in those moments of crisis, really asking for professional help, asking for help from other people that might be able to direct us in the right direction. really being in the moment with these families is so important and validating them and saying, this is hard.

This is really hard. I get that this is a lot at one time to do and I'm here to listen and you are, whatever you choose is the right choice. Some families, you often hear, I would never get help, I can do it all. And then other caregivers feel guilt for choosing a different path. So us as professionals validating people in their choices.

Carrie Aalberts (20:50.974)
is so vital and saying you are doing a great job at something so difficult and you know how can I support you how can I talk through things with you what is important to you what is important to your loved one is the most you know vital thing and just being present with people and validating them I think is the most important thing as professionals because we

You know, we often think, we're the expert in this situation and no one's an expert in these things. It's so, so delicate and so personal. And we have to remember that they're just as much of an expert in this as I, as we are. And we need to meet in the middle and, and support them through this.

Tiffany (21:36.007)
As we've been talking about, care decisions are often colored by grief, guilt, and emotional strain. How do we look at dementia beyond the tragedy narrative?

Carrie Aalberts (21:48.611)
Yes, my gosh. Well, it's so important to look beyond, you know, this we've been kind of told, you know, life's over after dementia diagnosis and that's that. I often share, saw it once when Bruce Willis and his FTD diagnosis became, you know, more known is I saw an article that said, you know, Bruce Willis can no longer experience joy. And I couldn't believe that this was a narrative that's out there when that is the furthest from the truth.

And so I think it's really important for us to speak in a way that is that more positive language that, you know, not at the losses that are happening, but what is still there? What is it that we can still do with our people? Yes, we're losing things, but we have to be present in the moment of what we can still do. And in really focusing on there is still life to live.

There are still, you can learn when you have dementia. You can learn new things. You can have new experiences. You can travel. We just have to adapt and joy changes throughout life, but it's still there. And so really showing these parts of dementia that life can still be lived. We don't need to keep our people locked up inside, they're still a part of the world and society. So it's really important for us to use

dignified language, to not use, like I said earlier, demented. That is such an obsolete word. We do not need to ever be using that. People are living with dementia and they can live well when we show this that it's possible. So I think it's just extremely important for us, not only for the people living with dementia, know, looking forward at, again, could be 20 years of their life.

There is so much there, but also for their families. There is still so much that we can do and we just have to adapt along the way. So we have to show the joy. We have to show the other side of dementia. Yes, it sucks. Yes, it's so hard, but there's also joy. Yes, and joy and grief can coexist.

Tiffany (23:59.523)
You're absolutely right. There's going to be difficult days and then there's going to be days that are great. And we do find joy in them. I know, you know, with our clients, we use music, we do joyful memories. And so we will use music and that is unlocking memories that they don't normally have access to. And I can tell you firsthand, I've seen people experiencing joy when a song comes on, maybe from their childhood or

Carrie Aalberts (24:12.045)
Yes.

Carrie Aalberts (24:27.277)
Anyway.

Tiffany (24:27.877)
you know, different times in their life and it can bring back memories that they didn't have access to before we were listening to that song. So joy can still be had. And there's so many things, not even just music, but I've seen people utilizing art and doing so many things to release, you know, memories and to have joyful times. There are also going to be good days with dementia care. And so that's important to know. It's not all doom and gloom. Well, it is.

definitely not something that we want to go through. We can find those joyful moments throughout. I want to go back and talk a little bit more about caregivers. How can caregivers hold space for families without absorbing the emotional weight? How do they also acknowledge emotion without overstepping? Caregivers are sometimes on this tightrope of being helpful, but not overstepping in a way.

Carrie Aalberts (25:03.564)
Yes.

Carrie Aalberts (25:24.352)
Absolutely, and that's so hard, right? Especially when you're emotionally intertwined, when you start to really get close to the family and the person you're caring for, and then you're, like I know, at least for me, I've gotten emotional and it's like, my gosh, I need to take a step back. This is their family member. This is not about my emotions, and that can be really hard. So I validate that for sure. But I think, as I said, is the validation is everything, and saying,

this is so normal and because people feel like, you know, their guilt and the emotions they're feeling like they're not normal. And that's why they're quiet about them and they're ashamed of them because we don't talk about this enough. So validating and holding space and saying, you know, this is, this is unfortunately like what families experience and I'm so sorry and it's so heavy and really validating that and letting them speak.

and be have it being that safe space for them to speak up about their feelings and say, you know what, can I say something that I would never tell someone else, but this is how I'm feeling, know, families sometimes want to be, they want to be heard. And sometimes we have to give them the, the permission. It's sometimes we need permission, you know, and I know that might sound weird, but sometimes we have to say, you know, you're allowed to be mad.

Tiffany (26:43.995)
Yes.

Tiffany (26:50.492)
Right?

Carrie Aalberts (26:50.798)
You're allowed. This sucks. And just being that person that says, when I'm working with people in hospice, when they say, am I the worst person in the world? I want my person to be out of this misery and die. And I say, that's not bad. mean, you should not feel guilty for that. That's a normal human thought. And just reminding people you're human, giving them that space, and not making it, again, about us.

this is how I feel, you know, and just like, this is normal. You are normal. And yeah, putting names to their emotions, like the different griefs and just what they're experiencing can be very helpful as well.

Tiffany (27:34.821)
It's so important to support the family along with providing that care to the client. We're getting close to the end of our time together today. And there's one more topic that I really wanna make sure that we touch on. Technology is becoming part of dementia care conversations, whether families ask for it or not. What kinds of technology actually make a difference for families?

Carrie Aalberts (27:59.295)
age tech technology coming out is incredible. Highly recommend following along the AARP age tech collaborative. They always have all the new companies coming out for this space, but it's really important to look at, you know, any tech that can can help you in your care journey. And I think safety specifically, you know, with cameras, with sensors for falls, things like that are very important. There's even incontinence supplies like it depends that

tells you to your phone on an app how wet the person is. So they're not sitting in it and getting a UTI over and over again. That is huge. That's life saving. There's communication tech for families to stay in constant contact and keep care plans going and to help each other care the best that they can and share information. There are so many things that are gonna help with.

sleep and helping people relax. There's incredible engagement technology out there. There's TV programs made for dementia care. And so, yes, there's so many tools out there that have to do with new age tech innovations. And I highly recommend asking about what tech is available to you.

Tiffany (29:18.319)
Absolutely. We have quite a few of our Comfort Care and At Your Side offices who are utilizing connected care, which is remote patient monitoring. And this is, yes, it is so fantastic for our clients, but it is also great for their families to have that peace of mind, right? Because there's a lot of people, even when they're not with their loved ones, they're taking that break, right? They're worried the whole time. What if something happens? And so having these sensors that are gonna

be able to tell us what's going on in the home. It's gonna give them peace of mind. I think that is fantastic. One thing though that does sometimes come up when we're talking about age tech is really the misconceptions about technology is replacing care. And really we are blending those together to really create that beautiful system of care together. Can you talk a little bit about that misconception that tech is gonna take over care?

Carrie Aalberts (30:14.156)
Yeah, no, absolutely. And that is such a valid fear. the thing is, good age tech, you don't even notice the tech because it just elevates the care and it kind of falls to the back, if that makes sense. Like good tech is just elevating and supporting the care you're already providing. So it's only going to...

Tiffany (30:28.699)
It does.

Carrie Aalberts (30:37.964)
benefit us. It doesn't take, know, it doesn't, when it's good, and when, you know, these good things that will come seamlessly into your life and just be something that supports what you're already doing or taking something off of your list. Like, for example, there's these smart toilets that will be in senior care communities one day, and it does the scanning of what's in the toilet. So caregivers don't even have to look in the toilets anymore. It sends it right to the computer and says,

this person might be getting sick because of this and their stool and like things like that will take away the things that, you know, we don't necessarily need to be doing something else can be doing that. And now we have more time to engage intentionally and personally with people because we don't have to now do this thing that tech can do for us, for example. So there's just, yeah, it's good tech only supports us and is very high touch, you know,

person-centered tech, and it really is going to make our lives easier and help us provide better quality care when we don't have to waste time doing little things that tech can do.

Tiffany (31:44.817)
You're absolutely right. And gosh, it's so exciting to just think about some of these things that are coming and just the way that they will affect the industry overall. Carrie, as we conclude our time with you today, what's one piece of guidance you wish every family and professional caregiver understood when navigating dementia care decisions together?

Carrie Aalberts (32:05.654)
I think one thing to know is that you're never going to be 100 % right because dementia care is so, again, complex. And I just want to make sure everyone knows to not beat themselves up because we're all learning. mean, professionals and families every day, every minute changes in dementia care sometimes. just knowing that you're

you're doing the best you can with the knowledge you have. And there's no system truly put in place for dementia caregivers. We're all kind of just floating around trying to grab what we can from amazing people that are putting, you know, content out and help out and resources, but there's no straight path for dementia caregivers. And so please give yourself grace as you find what you need, as you try things. Not every day is going to be great as anything as being a human, you know.

things might work one day, they might not the next. It's really hard and being that hard, can make us beat ourselves up. Go, why can't I get this? What is this? What's going on? It's not you. It's literally the most complex thing ever. It's the brain and we're doing our best to keep up. So please give yourself grace, whether you're a family or professional caregiver or anyone being a human, please give yourself grace.

You're navigating one of the hardest journeys that has no clear path. So ask for help, get help in the beginning, ask the questions, be brave to say, don't understand, I don't know what to do, what do I do next? And seek that community because it's everything.

Tiffany (33:52.261)
Great advice. Thank you, Kerry, for your time and sharing your insights with us today.

Carrie Aalberts (33:58.265)
Thank you so much for having me and thank you for all that you do.