Communication Skills- The Most Effective Tool in Your Dementia Toolbox

In this episode of Hope Floats,  professional coach Rachel Coady (PCC) and licensed clinical social worker, Shoshawna Rainwater discuss effective strategies for caring for individuals with dementia. They emphasize the importance of understanding behaviors as communication signals indicating unmet needs. The conversation introduces the P-BREATHE framework, which helps caregivers identify potential causes of distress. The hosts also highlight the necessity of unlearning certain communication habits and adopting new strategies to enhance interactions with those living with dementia. The episode concludes with practical tips for navigating misunderstandings and reducing caregiver burden. In this conversation, Rachel Coady and Shoshawna Rainwater discuss essential skills and strategies for caregivers of individuals with dementia. They emphasize the importance of understanding the emotional landscape of dementia care, the need for caregivers to manage their own moods, and the value of creating a soothing environment. The discussion also covers the concept of therapeutic fibs, the significance of emotional connection over factual accuracy, and the DAWN method as a framework for person-centered care. The speakers encourage caregivers to practice self-compassion and to build a support system to navigate the challenges of caregiving effectively.

Takeaways

• Learning skilled interactions can reduce distress in dementia care.
• Behaviors often indicate unmet needs rather than intentional difficulties.
• Dementia involves more than just memory loss; it affects communication.
• Caregivers must adopt a detective mindset to understand behaviors.
• The P-BREATHE acronym helps identify reasons for distress.
• Unlearning old communication habits is crucial for effective caregiving.
• Avoid correcting individuals with dementia to reduce agitation.
• Limit questions to prevent anxiety in those with dementia.
• Engaging in arguments with individuals with dementia is unproductive.
• Understanding the emotional impact of dementia on both caregivers and patients is essential. Unlearning old behaviors is crucial for effective caregiving.
• Identifying soothers and stressors can improve care.
• Caregivers' moods significantly impact individuals with dementia.
• Emotional connection is more important than factual accuracy.
• Therapeutic fibs can be a helpful tool in dementia care.
• Creating a positive environment enhances communication.
• Sharing knowledge with family can improve interactions.
• Building a support system is essential for caregivers.
• Self-compassion is vital for caregivers' well-being.
• The DAWN method offers a structured approach to care.

Transcript

Rachel Coady (00:06) 

Welcome to Hope Floats, a podcast for people navigating the challenges of caring for a person with dementia. I'm Rachel Coady.

Shoshawna Rainwater (00:14) 

And I'm Shoshana Rainwater. On today's episode of Hope Floats, we'll be talking about primary treatments for caring for a person with dementia. These treatments aren't medications or medical procedures, but rather skilled interactions that are initiated and carried out by us, the people providing care to a person with dementia. Learning these skills is one of the most effective ways to reduce distress in people living with dementia, which has the effect of helping reduce our caregiver burden, as well.

Rachel Coady (00:45) 

I'm so excited about this episode Shoshana because I really feel like when you helped our family unlock some communication skills and things that we could do to more successfully meet my mom where she was, it really changed how we could spend time together and the quality of that time. Let's jump in.

Shoshawna Rainwater (01:13) 

Thanks, Rachel. I'm really excited for today's episode, as well. This is really where I see the rubber hitting the road in terms of good dementia care. This is going to be an episode full of tips and tools and ideas for how to begin easing your way and your person that you're caring for so that there's less distress, less combativeness and better time spent together.

So I wanted to talk a little bit about what do we mean when we talk about behaviors?  Behaviors in a person with dementia are often a sign of an unmet need, and they are the person's best attempt at communicating with us.

One of the challenges in dementia is that the behaviors and the changes happening in the brain often look like uncooperation and other challenging aspects of the human personality. We have a really good list from Teepa Snow– dementia educator Teepa Snow's list of the most common issues that come up in dementia. And many of those issues on the list are things that can be challenging for us to deal with. Some of the really common things are losing items, unsafe task performance, repeated calls to people, refusing care, bad-mouthing you to other people, making things up, resisting care, and the list goes on. I won't read the entire list. But I think it's important that people understand that these behaviors are quite common and they're not being done by the person with brain changes in order to be intentionally difficult, they're happening because of organic changes happening in the brain.

Rachel Coady (03:15) 

Can I just say right there, we saw some of those things happening and one of the reasons why it just felt more challenging was because they were so not like her normal quote unquote behaviors. That was a big signal to us that like something was really uncomfortable for her. And it really helped us to learn more about what they were and when you shared examples with us, we started to see “oh, that's what's going on.”

Shoshawna Rainwater (03:40) 

Yeah, and I think because it's not talked about, and I think it's not talked about because these are stigmatizing behaviors. We have an expectation that well-behaved adults won't act like that, won't do those kinds of things. And that's particularly true if this has not been a part of who a person has ever been. There are people who arrive into a dementia experience who've had some of these behaviors. And for those families, they're like, “well, this is just them being difficult.” But it's also true that these are issues and behaviors that are common in people who've never had those kinds of issues before. And it can be really challenging. But what I want people to understand is that these are very normal things.

Dementia is rarely just about memory loss. If it were just about memory loss, it would have a very different feel. I think it would feel a little bit like remember that movie, Rachel, Groundhog Day? 

Rachel Coady (04:47) 

Yes.

Shoshawna Rainwater (04:48) 

There was a movie that came out starring Bill Murray many years ago. And he has sort of an amnestic experience throughout the movie where he's repeating the same day over and over. 

Rachel Coady  (04:57) 

Right.

Shoshawna Rainwater (04:58) 

If dementia was just memory loss, it would be almost like a pleasant Groundhog Day. And it's usually not. It is usually fraught with all of those other challenges that are things that we are less tolerant of in other adults.

Rachel Coady (05:15) 

It's really interesting to hear the framing of those behaviors actually being communication signals. When we don't have the words or the awareness to know, “hey, my brain's changing and I'm reacting this way,” our job as the caregiver is to start to take that communication signal to understand what's going on and then figure out how to work with other communication skills like we're going to talk about today to get back in connection with this person and to help support them in what they need.

Shoshawna Rainwater (05:45) 

Yeah, if we're going to be a caregiver in this role, it really asks of us to be a bit of a detective. And knowing and understanding that framework that behavior is communication and a sign of an unmet need is really important because it requires us to do a little bit of digging into what is behind my person's change in behavior. Why are they doing the things that they're doing?

I love a good acronym. And one of the things that is helpful for me is to remember an acronym called P-BREATHE. So P-B-R-E-A-T-H-E. And it's an acronym that folds in eight different domains of why a person with dementia might be acting in the ways that they're acting. So I'm going to run through those fairly quickly. I think they're important. And we're going to put the P-BREATHE acronym broken down and explained on our website 

So, people with dementia are losing the ability to use words to convey their needs. And people living in sort of neurotypical well brains usually are most reliant on using words to communicate what's going on for them.  I've heard experts say “your person with dementia is having a hard time. They're not giving you a hard time on purpose.” And some of the hard times they might be experiencing are captured in this P BREATHE acronym. P can stand for Pain. So pain in a person with dementia is often undertreated and under-attended to and under-recognized because a person with dementia often has lost or is losing the ability to articulate, “Hey, I don't feel good, or my leg is really bothering me.” So they're less able to verbally express it in words. People with dementia will lose the ability over time to answer the question effectively, “are you having pain?”  And there's a well-known geriatrician, Maureen Nash, here in Portland, Oregon, who says, “Asking people with dementia, ‘Are you in pain?’ is one of the least effective ways to get an answer.”  And that we want to be looking for other non-verbal signals that they might be putting out there, like furrowed brow or holding their body part that is in pain. But asking people the question directly often doesn't yield a helpful answer. So there's a good example of having to move into a detective role. 

Rachel Coady (08:33) 

Mm-hmm.

Shoshawna Rainwater (08:34) 

The B stands for Bored. So is this person wandering, exploring, getting into things because they're understimulated?  The R stands for Restroom. So are their toileting needs that haven't been attended to? Does the person feel some sort of need to use the bathroom but can't figure out the steps on how to carry that activity out?  

Rachel Coady (08:59) 

Hmm.

Shoshawna Rainwater (09:00) 

The E stands for Exhausted.  Overstimulated and overtired means that most of us, including people with dementia, will not be at their best. We see that in any human when they're overtired. And the A stands for Anxious. So if a person is feeling uneasy or worried or concerned about things, we might see an uptick in behaviors. The T stands for Thirsty.

Rachel Coady (09:27) 

Huh.

Shoshawna Rainwater (09:28) 

Are they thirsty? Are they under-hydrated? Are they seeking something to ingest but can't figure out how to do it? The H stands for Hungry. And people with dementia may have a diminished ability to articulate hunger and may come across as many of us can come across, which is hangry when we're hungry we haven't nourished ourselves effectively. 

And then the E stands for Environment. Are there things happening in the environment that are increasing upset or agitation? Things like arguments happening in the environment, or loud noises or too much stimulation. Those things can lead to increased behaviors, as well.

Rachel Coady (10:13) 

I just want to acknowledge that is a great and very comprehensive list of eight ways to get curious. I would invite that those are things we could probably also ask ourselves as the caregiver is like, am I hungry? “Am I thirsty? Am I exhausted?” Used in a very different framing, but they're just great key clues to explore for the well-being of the caregiver and the person with dementia.

Shoshawna Rainwater (10:40) 

You're right. Yeah. And I think a lot of us get into our busy days and realize, “I haven't taken a drink of water in hours. I haven't used the bathroom in hours.” These are not just good tips and for our people with dementia, but also for ourselves. 

Rachel Coady (11:06) 

When we start to become detectives in this and kind of start and understand the need for stronger communication skills to understand that these behavioral changes are needs unmet, 

what are some things that we have a responsibility to think about in our relationship with this person we're giving care to that maybe feel new to us?

Shoshawna Rainwater (11:32)

Yeah, one of the things that can be very helpful is to remember that the brain of our person with dementia, our person with dementia is losing the ability to tolerate and manage stress.  And some of the most distressing things for a person with dementia have to do with how we interact with them. What I mean by this is we do things without really even knowing that we're doing them because we're operating from a place of thinking we're still dealing with a brain that has unchanged or with a rational brain. And dementia means we are dealing with a brain that is changing and losing abilities and needs us to communicate differently than we ever have. 

But I would say there are things that we should effort to unlearn. And these are the things that it's challenging because unlearning a behavior can be more challenging than learning a new behavior, especially for us as adults, because we've got so many reps in on how we've been doing things over the years.

Rachel Coady (12:48) 

Especially when we're really close to this person, if we're a caregiver that's supporting someone who's been in our life for the majority of our life, feels like there's this moment where we have to reset the table and really unlearn some behaviors that we're completely unaware we're using, as you were saying.

Shoshawna Rainwater (13:07) 

Yeah, these are deeply ingrained ways of interacting with each other and with years of practice under our belts. And so to arrive at the dementia experience, hearing me say, “it's one of the most helpful things you can do is unlearn a few things and learn a few other things.” The ask for that is solely on the caregiver. We're asking that of the person with sort of the neurotypical brain functioning. We're not asking our person with dementia to do anything different than they already are. 

Rachel Coady (13:46) 

This is part of the journey of meeting them where they are, which is so hard for us to remember.

Shoshawna Rainwater (13:52)

That's right. So let's go through some of the most important things that we can try to unlearn. I would say the number one thing would be to stop orienting the person with dementia to reality. So trying to get the person to see things how we see them–and to your point, Rachel, about our need to meet them where they're at–reality orientation or trying to get a person who's confused about reality to see it our way, really increases confusion and it increases misery, not just for them, but actually for us, too. We stand very little chance of convincing our person with dementia that our version of reality is right and theirs is wrong.

Rachel Coady (14:44) 

Yeah, that experience is over now. I really remember that. “There's not a point where I'm going to win this one. She's just not able to go there. So I'm wasting my time and my cortisol and my energy.” Yeah.

Shoshawna Rainwater (14:46) 

Yeah. Perspective taking goes away in this disease for the person with brain changes.  And so you're right. It requires us to do it differently.  I would say it feels like a noble gesture because what you're trying to do is supplement information that you think will be helpful to them. So we're doing it because it feels like the right thing to do, because historically it's probably worked. When another person asks you to help them make sense of their world, you can tether them to reality and it's usually effective, but it doesn't work very well in dementia. Trying to let go of orienting your person to reality is helpful. 

One of the other important things that we can do is to stop correcting their mistakes because correcting them seldom results in greater cooperation or less agitation in them and in fact serves to do the opposite, which is to increase their anger and upset because their inability to perspective take tells them they're doing it right. So most people with dementia see themselves as fully functioning adults. They rarely can see or appreciate the full impact of their losses. And as adults, we aren't used to people telling us “no” all day long. I mean, when was the last time you and I went through our day with somebody telling us “no, stop it, that's not right, don't do it that way.” And so if your person with dementia doesn't have the ability to see that they're not doing things correctly, it's very agitating to them. And agitation is a very difficult thing for caregivers to manage once it sets in.

Rachel Coady (16:47)

Right, I remember that it was very hard to break the loop of being agitated. The other thing that came up a lot in the skills that you're mentioning was I could see that my correction, my wanting to win the argument actually brought some shame to my mom because this was something that she had enough awareness to understand she probably should have known or just hearing over and over that you're making a mistake makes everyone feel a level of shame. And I think shame spiraling when you have some awareness that things are changing or you're not in total control can create a tough visit with someone whose brain is changing. And so we tried to be really cautious of the things we were doing that would make her shut down.

Shoshawna Rainwater (17:32) 

This is such an important point.  You said something really key when you said “my mom had some awareness of her deficits.”  So we've talked very briefly in a previous episode about anasognosia. We haven't done a full episode yet, but it's coming.  Anasognosia is that inability to have insight into your limitations. Some people with dementia have high levels of it and cannot see that they're doing anything wrong. Other people have lower levels of anosognosia and have some sense and some awareness that they're not doing things right. 

So the people with lower levels of anosognosia like your mom can become very ashamed, tearful, upset. It's one of the ways you know a person has some insight is they understand they're messing up. And then people with high levels of anasognosia don't know that they're messing up and they're furious with you for telling them they are. They think everybody else is messing up and blaming them for it. It's not helpful to them when we're pointing out all of the things that they're doing wrong. It either makes them feel terrible or it makes them really angry.

Rachel Coady (18:43) 

Mm-hmm.

Shoshawna Rainwater (18:44)

Another thing we can do is reduce the number of questions that we ask a person of dementia and stop testing their memory skills. One of the ways we show up for other people when we are in neurotypical brains is that we show curiosity, respect, and interest in other people by asking questions.  And we use that as a way to enhance a relationship. And so, again, it can be a kind of a noble gesture that we bring to our interactions with people with dementia. But questions tend to be agitating for a person with brain changes because it feels like quizzing for them. They understand that they're getting a question, but they're sifting through their brains to try to find the answer. And there's self-imposed pressure to come up with the right answer. And also they can see it on somebody else's face. “I'm waiting for your answer and you're not bringing it to mind.” So asking questions can become quite agitating. 

You can use questions to elicit choice to try to help someone feel like they have some decision making. You could hold up, say, two different kinds of fruit and say, “apple or orange, which of those two would you like?” That's an example of kind of a benign question. But coming into a room and saying, “Do you remember who I am? What's my name?” Those kinds of questions are not helpful and tend to make people feel quite anxious.

Rachel Coady (20:22) 

Even the question of “what kind of fruit do you want?” is broad for some people on this journey. So you taught us that like giving limited choices between things that felt tangible was a way to  communicate with her about what she wanted and also narrow it enough that she didn't feel overwhelmed with not being able to remember what all the fruits are.

Shoshawna Rainwater (20:42) 

Being the recipient of a lot of questions reminds me of an experience we've probably all had. Every listener probably had an experience of being in a school setting and not knowing the answer to a question that gets raised and just praying and hoping you are not going to get called on. And do you remember getting called on and the flood of all the things that happen in your brain and body as you're trying to like not, you know, you're being put on the spot, you don't know the answer. It's a similar feeling, I think, that people with dementia go through. 

Rachel Coady (21:17) 

Mm.

Shoshawna Rainwater (21:17) 

So it's relatable when we think about that example.  The last thing to try to unlearn or let go of is, just in this general sense, to really try to stop arguing with the person with brain changes. There's very little usefulness in getting into an argument with a person with dementia, because if what your goal is is to get them to see things your way, you're likely not gonna be successful.

And this can be very hard to do. I acknowledge that sometimes there's a discharging of frustration on the part of the caregiver that can actually feel really good in the moment when you, 

Rachel Coady (21:55) 

Absolutely. Yeah. Yeah.

Shoshawna Rainwater (21:57) 

Right? I've done this with my own parent. I throw it out there as an ideal that we wanna work toward. And I acknowledge there can be something really that feels kind of good in the moment of discharging that tension. But usually, I ended up with greater regret at having done it. 

Rachel Coady (22:14)

For sure. Yeah. And then, after we've done the work of unlearning some of our kind go-to behaviors, what are skills we can offer the listener that we need to practice and learn?

Shoshawna Rainwater (22:24) 

I owe a lot of gratitude to Joyce Beedle, who has been a long-time dementia practitioner here in Portland. And I spent my career trying to see every presentation and workshop that she put on in the city, and I found her work to be absolute magic. She offers up a helpful lens and paradigm for how to look at dementia care. And it boils down to something pretty basic, which is our aim and our goal with our person with dementia is to try to identify and increase things that soothe and reduce things that distress. She calls it the Increased Soothers, Reduce Stressors paradigm.

Rachel Coady (23:13) 

Let's break that down a little bit and talk about what soothers and stressors can look like in this disease.

Shoshawna Rainwater (23:20) 

One of the primary things we can do is to begin to accept our person's reality as their reality. We know that because of their dementia, they cannot gain insight into the limitations that they're experiencing.  The response of, “oh gosh, I didn't know that,” to things that they're saying is both true and kind and helps to maintain the dignity of the person with dementia. 

To any extent possible, it's important that we try to manage our own mood as caregivers because people with dementia quite simply are emotional mirrors for us. So much of what is changing in their brain has to do with rational thinking, executive function; but their ability to sense and read emotion is still intact.

Rachel Coady (24:22) 

I'll just add that in our life, our emotions are contagious. And so I remember the practice of parking at my mom's assisted living facility, doing some deep breathing in the car, trying to let go of the stress I was carrying and trying to level-set because of what you just mentioned, which is when I walked in her home, whatever I was feeling, was what she was going to feel so acutely with this disease. And it really helped to intentionally put that moment in my day with her to try to center myself and be intentional about what energy I wanted to bring to our visit, what energy I could bring to her day. I really recommend trying to find that reset moment for caregivers who have the ability to do so.

We will put some of the key tools to kind of centering and resetting yourself on our website.

Shoshawna Rainwater (25:16) 

I can't tell you how important I think that is for setting the tone for a visit. We are co-regulating each other's nervous systems all the time. And a person with dementia is losing the ability to regulate their own nervous system. And they are impacted by us and the moods that we bring to the table or to the interaction. We set the tone.

Rachel Coady (25:39) 

If I came in with a tone of frustration, that's where the communication was going to go. That's where the connection was going to go. 

Shoshawna Rainwater (25:48) 

Yeah. And to some extent, as a caregiver, you could see this as your superpower. Because if you can increase your skillset around how to come into an interaction more calm and more open, you have a significant opportunity to actually make things much better and with how the interaction goes.

And so it kind of becomes a superpower, really. Which in a disease landscape of dementia, you're not going to feel like you have a ton of superpowers. There's a lot about the disease that doesn't feel empowering.

Rachel Coady (26:22) 

You can set the tone of the soother. You can try to come into the room with the right energy and set the tone for your connection.

Shoshawna Rainwater (26:48)

That's right.That brings us to our next point, which is that in dementia, feelings are more important than facts. Speaking to the emotions underneath what someone is feeling rather than the content of what they're saying is a critical skill to learn. Because a lot of the content that the person is going to be bringing up is not going to make sense. It's not going to be grounded in reality. So if your person comes to you and says, “What time is my mom gonna be here?” and their parent has been dead for 20 years, a kind approach is to acknowledge the feeling underneath and say, “Gosh, it sounds like you're really missing your mom. I'm not sure what time they'll be here. But I'd love to have a cup of tea and maybe spend some time hearing from you about your mom?” Or taking them into some sort of happier memory? That's an example of attending to feelings over facts.

Rachel Coady (27:42) 

I appreciate the language you're offering of just admitting, “I don't know,” or “I'm not sure.” It gets us off the hook of feeling like we have to have something set for them that works every time. And a lot of times, I felt like in going there, it let her tell us where to go next.

Shoshawna Rainwater (28:01) 

That's right. And I think there's some relief, actually. There can be relief for a person with dementia to not be in the presence of somebody who's super bossy and knows all the answers all the time too, right?  Like, “I don't know, but we'll figure it out.” You set the tone. And then the last thing that I would highly recommend people try to start doing is to give yourself permission to tell soft truths or what we also call therapeutic fibs.

Rachel Coady (28:31) 

This was huge for us. Say more.

Shoshawna Rainwater (28:34) 

Yeah, so therapeutic fibs and soft truths are perfectly acceptable to use in dementia. And it's a strange thing to start understanding and to be open to because most of us don't arrive in adulthood successfully if we've been chronic liars. In our society, we uphold truth. We know what happens when truth is not held up. It's a really important human quality. So what's important, though, in dementia is that we're honoring our person with dementia's ability to meet us in that truth. So, “is my parent coming to see me this afternoon?” is a good example of where saying something that is not true or telling a therapeutic fib with the intention of soothing and keeping our loved one out of extreme distress can be helpful. 

If we were to tell the truth in the scenario where a person is asking for their deceased parent, it will likely be news that lands on their brain as if it's the first time they've heard it. If they can't remember that their parent is not coming, they're not likely to remember that they've died. 

Rachel Coady (29:58) 

We used therapeutic fibbing also in the sense of leaving some things out that were going to be too hard for her to hold on to, connect, and comprehend. And so in a way, it was like an oversimplification or distillation of what was going on or why something was happening. But we believed in it, and our family used it because we knew it was better for her to only have the information level that she could actually manage, and that was helpful to her.

So some people said, “You didn't tell her the truth.” I'm like, “Well, I told her what she could handle knowing.” And that relies on a lot of good judgment from the caregiver. But it made her confidence and stability in a situation so much better than trying to tell her everything in every detail and why. And so, in a sense, that was therapeutic fibbing also.

Shoshawna Rainwater (30:47) 

Yeah, beautiful example of that. So these are the things that I wish were on a prescription pad when people leave a medical appointment. And they're not. I do know of a neurologist who actually does kind of synthesize these things and puts them in their recommendations. Because we don't have great medications in this disease to manage all the challenges that come with it, these are really important skills and tools to have. And I wish there was a better marketing force behind them so that we could see advertisements on TV like “ask your doctor if behavioral interventions are right for you!” That would be lovely. Maybe someday.

Rachel Coady (31:34) 

You bring up a really good point that part of this learning is looking at your relationship and what's available in this relationship in a new way. And also that this takes a real awareness and real practice by the people that are surrounding the person with dementia. And we've talked about managing our own moods; trying to be really intentional about how we show up can really change the quality of the time you spend with your loved one. We have also covered that there are just a lot of factors that can greatly change the quality of day that our loved one is having. And I want to invite an awareness for their day when you show up. So first, let's check ourselves. Let's check how we're feeling. Let's check what we're bringing to the room.  Secondly, let's consider their day. When we go to communicate and connect with someone we love who has brain changes, have they slept? Have they had a really stimulating morning? Have they been struggling with eating and drinking? All the things you mentioned in the acronym. We have to be aware for two in this communication dialogue and then really determine, “So what's available right here, right now, this hour, or this day with my loved one?” 

And I remember, especially the factor of sleep, there were times where my mom was not sleeping well. And that next day, it was similar, honestly, to having like a child that didn't sleep well the night before. Like you just kind of gave it grace and thought, “we'll try again tomorrow.” And then another day I would show up and she would be rested, and she'd eaten well and well hydrated and had a good phone call from her family in the morning. And it was like a totally new availability of what we could talk about and what we could do. And so I just think all of these things are a part of how we communicate. It's not just language anymore. It's really considering all the environment and stimulus and feelings. 

One of the things that helped us was to reconsider what stimulus for our visits could look like. So as her disease progressed, we looked for new things that we could bring into our time with her that really helped set her up and kind of increased soothers and reduced stressors. For us, that included having pictures out all the time about things and people that she really loved in her life that served as conversation starters or surprises and delights that put her in memory moments that she could really enjoy and recall and put her in a happy headspace. We kept her school yearbooks close by and when she had visits from old classmates, they would look at those. 

We thought about sensory things. So what were television shows or foods that she always loved or activities from previous times in her life that really stirred good memories? Music was a huge one. Those were all ways for us to communicate and share with her that put her in environment that felt good.  These are all ways to communicate with your person with dementia and really empower them to feel like they have something valuable and meaningful to share and that's important to you, too.

Another thing I'll add is that as we learned and frankly unlearned these skills that you've mentioned today, we shared these tips with our family and the friends and other people who would be visiting our mom. So that looked like us sending an email every couple months to people that were going to be around my mom or who were calling her or who were connecting with her to let them know about where some of her changes were happening, and in that to give them some tips for how they could more successfully connect with her. It was a proactive thing we did. It really helped them have more meaningful connections and conversations with her in their time together. This was one piece of the dementia journey as a caregiver that I could actually delegate and ask my sister to complete and send out to our family and friends. But we heard back from family and friends about how helpful that was and how much it meant to them to be able to meaningfully connect with her. The things to learn and unlearn in connection with our loved ones can be really helpful.

For many people on this journey, you're caretaking for someone who has also been the person you would turn to to talk to and process all of these changes and all the experiences you're having as a caregiver. Part of what is complicated about being a caretaker is that the person you'd like most to turn to for support or to get advice from is suddenly not available to you.

Shoshawna Rainwater (36:08) 

Yeah.

Rachel Coady (36:09) 

And it feels like your support system has really been taken from you in this disease, as well, when you're emotionally connected to the person you're caregiving. This is part of why knowing and having your team, which we talk about in earlier episodes, is crucial because you're really not alone in this journey, and you'll need to get support from a new person or persons in your life who can be present in this experience with you and help you process it when the person you normally turn to is the one with dementia.

Shoshawna Rainwater (36:41)

I had a recent experience, something difficult in my personal life. And I was sitting with such grief around the fact that I would have gone to my mom with that personal experience. It was one of those things where I would have just kind of collapsed in her lap. 

Rachel Coady (37:00) 

Mmm.

Shoshawna Rainwater (37:01)

And I knew, I couldn't do that and it's such a strange shift. And so part of my recovery from that was going to another person on my team and naming, “I not only need to grieve the personal loss that I wanted to talk with my mom about, but now I need to also talk to you about how hard it is to not be able to talk to my mom about that.” 

Rachel Coady (37:26) 

Yeah.

Shoshawna Rainwater (37:27)

There's grief in that.

Rachel Coady (37:28) 

For sure, for sure. And good job on reaching out to someone else and naming what you needed. I think, you know, on that note, Shoshawna, naming it and saying what you need is crucial as a caregiver. This disease is a masterclass in patience and part of what it can teach us is to get better as adults at communicating what we are feeling, what we need and to ask others for that support and help.  It takes a lot of courage. Practicing communicating what we need as hard as adults, but we all need support. Some of us are brave enough to ask for it. And I'd encourage the listener to be brave. Your team really wants to support you and they're there for you. 

And the final thing I'll bring in today is just a real sense of grace. Everything we've talked about with communication, learning and unlearning, is a practice. And all of us are doing our best. You have a lot going on. You're holding a lot of things together.  So listener, I'd encourage you to give yourself the same support and grace that you would give a good friend right now. Every day the most we can really ask ourselves to do is our best and of course some days are better than others. You know, for me that could look like lying in bed and crying on the floor or going for a hike, or having a family member help cover dinner one night a week, you can always communicate that you're doing your best and believe that the person with dementia is doing their best, too.

Shoshawna Rainwater (39:03) 

Yeah.  

Shoshawna Rainwater (39:10) 

Today we talked about some real key strategies to begin using that are designed to make life easier and better for you and the person you're caring for. Just to recap, one of the primary goals in the disease landscape of dementia is to reduce stressors and increase soothers. And to keep top of mind that behaviors are typically a sign of an unmet need in our person experiencing brain changes.

One of the primary and most helpful resources that Rachel and I have found is a method for caring for a person with dementia called the DAWN Method, D-A-W-N method. And it's a person-centric, strengths-based approach to providing care that offers a sense of control for the person with dementia, a sense of value, and a sense of security in their confusion. And some of the recommendations we talked about today are things that Rachel and I learned from our participation in the DAWN Method and learning from that resource.  We'll put the DAWN method information on our website so that you can easily access that and explore that resource for yourself.

We'll also add some of the other resources that we talked today, like the P-BREATHE handout. And we'll add a handout from the Family Caregiver Alliance called “10 Real-Life Strategies for Dementia Caregiving” that I think will be helpful to our community.

Rachel Coady  (40:52)  

Thanks for listening today. In our next episode, we're going to talk about the holidays and how to survive and maybe even thrive with making holiday plans and experiences for people with dementia in your life. Thanks for being here.

Shoshawna Rainwater (41:05)  

Thanks everyone, take care.

Rachel Coady (41:14) 

You can always reach out to us here at Hope Floats with your questions or with topics you'd like us to discuss on the podcast. We're here if you want to share your experiences and let us know what could help you navigate this journey. We want to support you. 

Shoshawna Rainwater  (41:30) 

You’ll find us at our website, hopefloatspodcast.com, when you're there, you can learn more about the work we do. That's also where we'll share more tools, resources and libraries that can help people on this journey. 

Rachel Coady  (41:43) 

Never miss an episode of Hope Floats by following us wherever you listen to your podcasts and join our community at hopefloatspodcast.com.