Dementia With Grace: Insights To Elevate Your Quality Of Life

In this episode, we dove deep into the heart of dementia caregiving, shedding light on how to better understand and connect with our loved ones as they navigate this complex condition.

We introduced the transformative concept of retrogenesis, providing a compassionate lens to view the regression often experienced by individuals with dementia, helping us walk in their shoes and see the world through their eyes.

0:02:05 Dementia with Grace: Elevating Quality of Life

0:05:18 Understanding Retrogenesis and its Impact on Dementia

0:07:22 Navigating Dementia Caregiving with Effective Communication Strategies

0:13:30 Creating a Supportive Environment for Caregivers and Loved Ones

0:14:47 The Stigma of Mental Health and Personality Changes

0:15:37 Recognizing the Lack of Support for Dementia Caregivers

0:17:07 The Importance of Preparation in Dementia Caregiving

0:22:53 Supportive program for family caregivers of people with dementia

0:24:03 Helping Those in Need: Schedule a Call for Assistance

0:25:02 Insights on Elevating Quality of Life for Dementia Caregivers

0:26:36 Embracing Longitudinal Care for Dementia Patients at DementiaCareGiving.org

We then ventured into the art of effective communication, a cornerstone in dementia caregiving.

We didn't just talk about strategies; we explored how to weave them into the fabric of daily interactions, emphasizing the importance of proactive, empathetic communication tailored to the evolving needs of someone with dementia.

Here, the PEACE framework emerged as a beacon, guiding caregivers in nurturing meaningful connections.

A poignant part of our conversation was addressing the often-veiled stigma surrounding dementia.

We openly discussed the barriers and the silence, advocating for a culture of support and understanding.

We likened dementia caregiving to a marathon, emphasizing the power of early and consistent support to navigate this journey with resilience and grace.

Self-care emerged as a theme of paramount importance.

Caregivers, we see you, we hear you, and we urge you not to wait for burnout to reach out for support.

Remember, you're not alone in this.

Caring for a loved one with dementia is a team effort, and every caregiver deserves a network of support, understanding, and practical help.

To further extend our support, we invite you to visit DementiaCaregivingMadeEasy.com/start

Here, we've crafted a program that's a haven of support, education, and coaching, designed to equip you and your family with the skills to navigate this caregiving marathon.

Imagine a community where multiple family members can come together, learn, and grow, all for the price of one.

In the spirit of helping and healing, we're offering a 20-minute call for personalized guidance.

This episode was just the beginning. We're here to walk alongside you, offering our hands, hearts, and knowledge. If you're inspired to dive deeper, join our group coaching program at DementiaCaregivingMadeEasy/start.

Let's embark on this journey together, elevating the caregiving experience and enriching the lives of our loved ones with dementia.

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Transcript

Understanding Dementia and its Impact

[0:02] What a jam-packed episode we just finished.

Dementia with grace, insights to elevate your quality of life.

We looked at three things real quick. We looked at understanding dementia and its impact on you as the family caregiver.

We talked about retrogenesis, which you'll have to listen to the episode to find out what the big fancy word retrogenesis actually means.

We looked at effective communication strategies and we talked about, you know, effective strategies that you can start practicing right now before it becomes a problem.

And then the third thing that we looked at is creating a supportive environment for the family caregiver.

And we talked about the fact that a family caregiver doesn't always recognize that they are a family caregiver and that we need to talk about the fact that we are dealing with dementia much earlier and way more often than we are.

So listen to today's program and I'll see you on the other side.

Welcome to Dementia Caregiving for Families

[1:10] Hey there, success seeker. Welcome to dementia caregiving for families.

Do you feel overwhelmed with the daily struggle of dementia caregiving?

Looking for an easier path? You're in the right place.

On this podcast we teach you the skills to simplify caregiving.

We unravel the mystery of dementia and guide you through the often difficult behaviors.

I'm Lizette, your host and fellow family caregiver.

As an occupational therapist, I bring my professional and personal experience to this community.

Here we speak the truth, but without the verbal vomit.

I know you will find value in today's program, so buckle up while this flight takes off.

Dementia with Grace: Elevating Quality of Life

[2:05] Well, welcome to today's episode of Dementia Caregiving for Families.

This is episode number 62 and it is called Dementia with Grace, Insights to Elevate Your Quality of Life.

And what I mean by your quality of life is not only the person that you are helping with dementia, but you, the family caregiver, how can we elevate your quality of life?

The first thing I wanted to talk about today is we really need to understand dementia and its impact on you. And what do I mean by that?

So what I mean by that is that oftentimes when a person that we love is being diagnosed or has shown difficulty with their thinking for a while.

[2:56] We tend to do what I call the ostrich maneuver, right?

It means we are aware that something is happening to them frequently, but because of life and lots of different factors, we don't always want to acknowledge the changes that we see.

But one of the most important things that you can consider and remember is how dementia changes the brain.

There's actual physical changes to the brain, and then a process, what is called in the medical jargon, retrogenesis, which literally means going back to the beginning, retro, 1960s bell bottoms and the whole nine yards, right?

Retro and then genesis, which means the beginning of, you know, the Bible is Genesis, right? So the beginning.

So what is retrogenesis?

Retrogenesis is just a big, fat, fancy word for us to consider how a person who is going through a dementia process will frequently go back to the beginning.

So think about it this way. Most of us have had children.

Most of us have seen children grow up. Most of us know how children develop from a baby sitting, crawling, standing, walking.

[4:25] Feeding themselves, getting dressed, managing their bladder, all of these different things that we go through as we develop into adulthood, which if you are listening to this and you're under 25.

[4:39] I'm just going to joke with you a little bit because our cognitive abilities continue to develop until we're about 25 years old.

There's a reason why insurance companies have young adults have higher premiums on the insurance, right?

Because our cognition is still forming until we're about 25.

Now, if you're over 25, I hate to break it to you, but your brain is already starting to go the other way.

So back to retrogenesis, how does retrogenesis and dementia work together?

What do you need to understand? and what is the impact on it?

Understanding Retrogenesis and its Impact on Dementia

[5:18] Well, the impact that I want you to take, the takeaway that I have for you today is something I want you to consider, is that in a broad sense, you can look at the person that you are supporting and loving that has dementia from this regard, wherever you find out that they are in a dementia.

Process will be the highest that they are going to be moving forward.

Unfortunately, as of right now, it is a degenerative, constant, backwards-changing, the retrogenesis aspect of it.

And the person living with dementia is not doing this stuff on purpose.

They are not on purpose trying to annoy you or frustrate you or make your life difficult. they are actually having physical changes to their brain.

And so, if you consider that a person is having actual physical changes to their brain, and you are expecting them to change, I would like to propose to you that there's this old saying, the definition of insanity is doing the same thing over and over again and expecting a different result, right?

So, we expect the person who has physical brain changes, real-life reasons for.

[6:43] The fact that their brain isn't working as well anymore, but we expect them to change.

And so, like I said, the definition of insanity is doing the same thing over and over again and expecting somebody and expecting a different result.

In the forming of... We're in the process of a dementia caregiving journey.

We unfortunately are like those insane people that we expect the person that we are helping that is living with physical brain changes.

[7:16] But we expect them to change and that's a little bit insane, guys. I just want to point out.

Navigating Dementia Caregiving with Effective Communication Strategies

[7:22] We're the ones that can change. The person living with dementia cannot change.

So how do we navigate dementia caregiving with grace, right?

We navigate dementia caregiving with grace by understanding, truly understanding, that the person that we love, that the person that we are helping.

[7:41] Loses the ability to actually change, and that the burden of that, the onus of that is on me as the person helping them to actually change.

So that's the first thing I wanted us to consider today.

The second thing that we're gonna talk about a little bit is effective communication strategies.

So when we have a person living with dementia that can be at any stage, right, all the way from just recently found out they have difficulty with their thinking, but they're still driving and maybe working and pretty high level, but we know that there's a diagnosis of some sort of cognitive impairment now, and we know that we have to deal with that all the way through to the end of life and a person who may be bedridden and barely making eye contact or having the ability to communicate effectively with us, and everything in between.

So how does effective communication strategies then be able to be put together with, say, retrogenesis, right?

So I want you to consider that as parents, most of us have been parents, and if you haven't been a parent, most of us have been around children, right?

For example, cousins, nephews, nieces, grandkids, other people's children.

We have, most of us, been around other children.

[9:11] You wouldn't sit down with a two year old or a three-year-old and try to reason, why it's not safe for them to put.

[9:21] Something in the microwave with tinfoil on, or why it's not appropriate for them to be driving, whatever the case might be.

We intuitively, as people, know that a two-, three-, four-year-old child does, not have the reasoning ability to be able to see the secondary consequences of the things that they are doing.

For example, like I said, driving.

But because we are working with people that are adults that have physical changes to their brain, there are real physical reasons why they are not planning well, why they are not remembering things. And dementia is more than just...

Not remembering things, and it's not just being forgetful, there are changes to the brain, and they start typically in the prefrontal cortex with what we call the higher-level skills, right?

The things like organizing and planning and anticipating the consequences of things.

So when a person is at a higher level, at the beginning, it is possible to still do somewhat limited reasoning with them, but I would contend that it's a bad habit that we get into and then that we are trying to reason with somebody that over time is going to lose the ability to reason.

[10:50] And ultimately what I'm trying to teach you is that I'm really here to train you, more than I'm here to train the person that you care about living with dementia because, yet again, the person living with dementia ultimately is not going to be able to change and accommodate for those changes, which means it has to come from me.

So if at the beginning of a dementia caregiving journey, I'm constantly trying to reason with somebody that I know in the future is not going to be able to reason for themselves anymore, I'm setting myself up for difficulty because then I've trained myself to try to reason with this person, Whereas, there are other strategies to communicate that we can utilize, like, you know, not arguing with the person or just trying to find a different way of getting the same results, trying to figure out what it is that that person needs or wants.

Because most communication, everybody, like you and me, normal people, I've never been called normal, but people are trying to communicate from their perspective, right, from their emotional perspective.

[12:06] So if we start to consider that the person that you're communicating with is trying to tell you something without words over time, then it makes it a lot easier for you to be able to guess.

I have a very simple framework that I teach people in my group coaching program, and in some of my online.

[12:27] Courses that I call the Dementia Peace Framework because the PEACE actually stands for person living with dementia, the environment that they're living in, the activities that they are engaged in or not engaged in, the contributions that the care partner brings to the table, and then educating the person, educating everybody using evidence-based practices.

So that's what the PEACE framework stands for and I go over it in some of my online courses and then in my group coaching we really go into how to communicate at what level at whatever level the person is that you are helping.

But I want you to consider that you know we want to create good habits in you from the beginning and not just wait until things have changed and then try to relearn how to communicate with the person that you love.

Creating a Supportive Environment for Caregivers and Loved Ones

[13:30] So the third thing that I want us to talk about how to navigate dementia with grace and then insights to elevate your quality of life, both you and the person that you love, is how to create a supportive environment for you, the care partner, for you, the person who is helping the person living with dementia.

[13:50] One of the biggest problems that I have experienced, and I'm very sure that you have had this experience yourself is that nobody wants to talk about dementia.

Am I right? Do you wanna talk about dementia?

Do you want to tell other people in your life, in your church, at work, your colleagues, that somebody that you love is going through these changes.

I know for a fact from my own personal experience, nobody wants to talk about it, me included.

And I've come to the conclusion that a big reason why we don't want to talk about it is because there is such a stigma, for people living with dementia that, you know, they're not the same person they were or because our.

The Stigma of Mental Health and Personality Changes

[14:47] Thinking processes houses our personality and our preferences and our worldview and all of these different things that the stigma related to it is because that person is now no longer exhibiting the personhood that they were before.

And so it's easy for us to want to hide that, to pull up the rug and slide it under the rug and just say, you know, kind of like the ostrich, I'll close my ears, I don't want to talk about it, because if I talk about it, then I've got to acknowledge it.

Part of the problem with that, though, is realistically, we need help as a family caregiver way before we are even ready to acknowledge that we need help.

I'll use this as an example.

Recognizing the Lack of Support for Dementia Caregivers

[15:37] The day I'm recording this episode is the week I launched this podcast called Dementia Caregiving for Families.

And at church on Sunday night, I was talking to anybody and everybody I thought might have an iPhone to help me do some reviews of this podcast.

And what became really evident very quickly to me was that there were people in my own church and in my own community that are helping distance-wise.

[16:07] Helping parents who are living with dementia, that they truly or don't understand the implications on their healthy parent who is helping their parent with dementia and pretty much the the answer was oh they're doing fine.

Well they may be doing fine right now but if we don't put a supportive environment in place and undergird them and come up from underneath and support them, by the time they get to that overwhelmed phase to that I'm burning out phase to that life is just not going to ever be the same again because they're in it, we have waited too long to really truly effectively help that person because dementia caregiving is a marathon. It is not a sprint.

The Importance of Preparation in Dementia Caregiving

[17:07] And none of us go into a marathon without preparing for it.

If you're going to run a marathon, you go to the gym, you walk, you do weights, you eat right, you change a lot of things, and you start running.

You don't run 26 miles immediately. you start walk to run, and then especially if you're like me, you've never run a marathon, what you will do is you'll do walk to run, and you'll go for a mile, and then you're going to slowly start to increase that until you get to the marathon. We prepare for a marathon.

[17:42] We prepare to sprint, but what we're not doing is we are really not preparing for caregiving.

We're not putting supportive environments in place for the caregivers.

We do not talk early and often about the ramifications of waiting until something goes wrong.

Why do we wait for the crisis to occur before we find help?

Why do we wait until things are overwhelming because we have just, we do the thing that everybody does, right?

You do the next thing and the next thing and the next thing.

And even though I recognize that that is noble and good and just to try to do this by yourself, nobody can take care of somebody living with cognitive impairment by themselves.

But there is an expectation that a dad, a mom and a dad are going to you know mom's there to take care of dad but who's taking care of mom, and that's where I want to encourage you guys as family caregivers if you're if your children of parents who have dementia.

[18:54] We don't want to assume that they are actually doing okay because they probably are coping, but that doesn't mean that they are actually doing okay.

And so we don't want to hide a dementia care journey from the people that are around us. We don't want to hide it from our children.

We do not want to hide it from our family. We do not want to hide it from our church.

If you are at work and you're a daughter somebody who has dementia, you need to speak about it early and often at your place of work, that you are having this in your life so that you can gain the support that you need.

[19:35] You might feel right now, if you're a dementia caregiver, that you're coping, but my encouragement to you is to find support earlier than you actually think you need it, because it is insidious, it is slow, and by the time you open your eyes and you're overwhelmed, it's too late.

We can do things way sooner to help make dementia care easier for you and to make your quality of life better, as well as the quality of life of the person that you're helping who is living with dementia.

Dementia can... You can navigate the dementia care giving journey with grace It does not need to be a woe is me and doom and gloom And if today you are in that position where it is a woe is me and doom and gloom Please reach out to me in the show notes.

There is a way for you to schedule a 20-minute call I will help you and we can talk about your struggles, but I beg you do not wait too late, And then in another episode we're going to talk, you know very much about self-care.

[20:50] Because you cannot be on this marathon journey without taking care of yourself.

And we do not talk about taking care of yourself as a caregiver.

And it doesn't mean... I want everybody to stop and think for a second, because one of the things I'm starting to recognize is that caregivers, family caregivers, do not recognize that they are family caregivers.

So kudos to you guys that you're here today, because if you're listening to dementia caregiving for families, you at least recognize that you are a dementia caregiver.

The challenge that I have and my ask for you to help me get the word out is anybody who has a family member, especially if they are a parent.

[21:36] Even though you're not the quote unquote direct supervision family.

Caregiver if your parent has dementia and there is a mom who is helping or if your mom has dementia and there is a dead who is helping even if you don't live under the same roof you are a dementia caregiver.

You were you were in the realm of dementia caregiving in your primary role in your primary function is not i can tend to help the person living with dementia we do that for sure but your primary role.

As a dementia caregiving family is to support the primary caregiver of the person living with dementia because it takes more than two people to help somebody living with dementia and to do it well.

We have to do a better job of getting those primary family caregivers, the person who is living with the person living with dementia, we have to do a better job of actually getting the support that they need.

So I invite you, if you are ready to actually go and get the help that you need, I invite you to go to DementiaCaregivingMadeEasy.com/start.

Supportive program for family caregivers of people with dementia

[22:53] And forward slash start, because I do have a program where I help the family caregivers of people living with dementia be able to actually take care of the person without them burning out.

There's a supportive community.

We do education. We do actual coaching. We teach you the actual skills that you need in order to provide the care.

And the biggest benefit that my program has...

Is I actually for the price of one, let you put your whole family circle in, which means one person pays or everybody chips in and pays for the program.

And then everybody can be in the same program getting the same information, because at some point or another, you are going to have to step in and help the person who is living with dementia and their primary care partner in order to be able to navigate this marathon.

So if you're ready to actually work with me, it's called Dementia Caregiving.

Go to DementiaCaregivingMadeEasy.com.

Helping Those in Need: Schedule a Call for Assistance

[24:03] Forward slash start. And if you're not and you do need help today, go to the show notes and grab the link to the call and schedule a 20 minute call.

I promise you I will take care of you because we are in this to win this.

We're in this to do this together. And so to recap real quick, we looked at three things, understanding what dementia is and what retrogenesis is.

And then we looked at effective caregiving communication strategies briefly.

And then we looked at creating the supportive environment for the family caregivers.

And this is a jam-packed episode.

I'm super excited that you're here. And if you're ready to actually take this to the next level, and if this resonates with you, please go to my website and schedule a call or reach out to me. I'm happy to speak to you at any time.

Insights on Elevating Quality of Life for Dementia Caregivers

[25:02] What a jam-packed episode we just finished.

[25:07] Dementia with Grace, insights on how to elevate your quality of life.

When I mean your quality of life, I mean both you, the person who is the family caregiver, as well as the person who you are helping who is living with dementia.

Yet again, just to recap the episode real quick, I am super passionate about helping family caregivers living with dementia. We looked at understanding dementia briefly and its impact and retrogenesis and what that is.

We looked at effective communication strategies today and that we need to start practicing more often earlier on in our journey.

And how do we know how to actually communicate and finding a community where we can practice these skills.

So we talked about that and creating good habits of communication with the person living with dementia. right from the beginning and not waiting until it's too late.

And then the third point that we looked at today is the supportive environment, creating a supportive environment for the person who is helping the person living with dementia.

And I invited you, if you resonate with me, to look at joining our group coaching program, where you will get community, where you will get a education, where we do actual in-depth education, and where you will be able to practice these skills in a very in-depth.

Disclaimer: These blogs, videos and any work done by Lizette Cloete OT, as a Member of Think Different Dementia, LLC, is given only as educational content and consulting work. This does not create an Occupational Therapist-Patient Relationship. The educational content and consulting work performed should not be considered medical treatment as an Occupational Therapist. The consulting work does not take the place of medical work normally performed by a licensed Occupational Therapist. Please consult a licensed Occupational Therapist for medical advice.

“Think Different” Dementia’s owner, Lizette Cloete, OTR/L graduated as an Occupational Therapist from the University of Pretoria in South Africa in 1992. She and her husband emigrated to the USA in 1993, and currently reside in South Carolina. They have 2 daughters and one son-in-love, 4 cats, one dog and 16 chickens.

Lizette has almost 30 years of experience as an Occupational Therapist in a variety of settings, the latest being in the home health environment. Among her many accomplishments, she served on the South Carolina Occupational Therapy Association’s Board of Directors from 2008-2014. She enjoys teaching on the topic of dementia, most recently presenting at a national conference on the topic “Dementia Made Simple”