Do you feel overwhelmed trying to care for a loved one with dementia?

You're not alone. Caring for someone with a complex and progressive disease like dementia is incredibly difficult.

But what if understanding the typical path dementia takes could better prepare you for the changes to come?

Can You Be Ready To Be A Dementia Caregiver?

0:06:24 Unpacking the Stages of Dementia
0:11:04 Understanding Retrogenesis and Normal Development
0:15:17 The Importance of Recognizing Safety in Dementia Care
0:18:09 Simplifying Dementia Care Challenges
0:22:11 Anticipating Changes with Retrogenesis
0:26:04 Benefits of Proactive Dementia Caregiving
0:30:01 Invitation to Join Founding 54 Caregiver Program
0:31:59 The Power of Speaking About Dementia

The Stages of Dementia

Dementia does tend to follow some predictable patterns of decline. Knowing these general stages can help you anticipate your loved one's needs before crises hit. Though the course varies by individual, most with dementia will pass through stages going from mild impairments to eventually needing round-the-clock care.

Knowing What to Expect

Understanding how dementia typically progresses is key to proactive caregiving. You’ll worry less when you know changes are common instead of reacting after the fact. For example, once you notice your family member struggling to drive safely, you can have conversations about transitioning away from driving instead of waiting for an accident. When you know what's coming, you can get supports in place ahead of time.

Gain Skills to Communicate Effectively

Another vital skill caregivers must build is learning to communicate in a way your loved one with dementia can understand. Called “speaking dementia,” this involves adjusting your own communication style to match your loved one's current abilities. With practice, you'll learn strategies to connect better, avoiding situations that lead to distressing behaviors. Mastering this empowering skillset leads to lower stress for everyone.

Join a Caregiver Community

Finally, you don't need to walk this road alone. Connecting with other dementia caregivers provides ongoing education and emotional support. Consider joining a structured, year-long program designed specifically for family caregivers.

An expert guide can answer your questions as they come up, with science-based advice to manage challenges with wisdom and compassion.

Dementia caregiving poses immense difficulties, but knowledge and community can ease the burden.

What questions about the caregiving journey do you have?

How has understanding dementia’s typical course helped in your own caregiving role?

Listen to Podcast

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Subscribe To Dementia Caregiving For Families Podcast

If you feel like dementia caregiving is hard and unpredictable and you are struggling to help a spouse or a parent living with dementia, join our next free workshop.
 https://www.dementiacaregivingmadeeasy.com/wsl

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Become a Member of Our Exclusive Program!  https://www.dementiacaregivingmadeeasy.com/start

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Transcript

Introduction to Dementia Caregiving for Families

[0:01] I just recorded episode 87 of Dementia Caregiving for Families, where we are going to talk about how to understand the changes of Alzheimer's and dementia.

It's a three-part series that we're going to be doing over the next three episodes, where we're looking at three common mistakes that I see people make in dementia caregiving.

And the first one is not grasping that dementia follows a very predictable path and that there are shared root causes for behavior.

So that is the first episode in this three-part series called For Us in Dementia Caregiving for Families. So check it out today.

[0:51] 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.

[1:46] Well, welcome to today's episode of Dementia Caregiving for Families.

It is episode 87, and I am going to be unpacking something that happened yesterday as I was doing a presentation for the leadership team of a local skilled nursing facility that has 14 different facilities in my geographic area.

One of my biggest opportunities that I love to do and one of the reasons that I continue to do this is because I believe that in order to make an impact related to helping people living with dementia, I not only want to help family caregivers, but I also want to help formal caregivers like nurses and physicians and nurses.

[2:42] Therapists and so on understand the impact that dementia caregiving has on people.

And it was really interesting because when I did this presentation yesterday for the executive leadership of the skilled nursing facility, one of the things I had three points that we were going over, we looked at three mistakes that we typically make in dementia caregiving.

And the first mistake was not grasping dementia's predictable path and shared causes, root causes for challenging behaviors.

My entire presentation yesterday had to do with managing challenging behaviors, which is something I'm starting to realize more and more is the biggest thing that I can help people understand how to manage and how to cope with so that it doesn't become an all-encompassing problem for people.

So the first mistake that we talked about was not grasping dementia's predictable path and shared root causes.

The second point I made yesterday was not empowering people.

The mistake is not empowering people to actually speak dementia in inverted commas.

[4:00] And also then the third mistake that we looked at yesterday was that people are overlooking the evidence-based and problem-solving solutions that are actually available out there to help people decrease challenging behaviors.

But why I decided to go ahead and do this episode today on how to understand the changes of Alzheimer's and dementia...

[4:25] And this is actually going to be a three-part series where each of the next three episodes, we're going to unpack pretty much the presentation I did for the leadership team at the skilled nursing facility.

Because one of the questions I actually asked them was, do they, as executive leaders and skilled, you know, directors of nursing, of skilled nursing facilities, if they actually felt or believed that dementia follows a fairly predictable path?

And the resounding answer was no.

And so one of the opportunities that I want us to see, and I want people to reframe how they look at dementia and its process, is that it does actually follow a fairly predictable predictable path.

[5:23] I'm not saying each person living with dementia is going to look the same.

That is not what I want you to hear me saying. But what I want you to hear me saying and understand related to how this whole journey for a person living with dementia unfolds is it actually does does follow a fairly predictable path.

And the reason for that is the brain is the brain and our body is our body.

And when you start to look at.

[6:00] Dementia care and Alzheimer's and dementia in a more predictable way, it can significantly decrease a person's sense of feeling overwhelmed because even though we don't necessarily know specifically what is following, we do know generally how it is going to unfold.

Unpacking the Stages of Dementia

[6:25] So So here's today's episode where we're going to quickly unpack this.

How many of you guys have heard the words staging of dementia, right?

I'm very sure everybody has at some point or another heard of different stages of dementia.

There are a lot of people who don't believe that it's necessarily the right thing to do to stage a person living with dementia and put them into these different buckets.

However, when you're trying to understand the process, it is helpful to understand the different stages of dementia.

There are a lot of different ways to quote-unquote stage dementia and the dementia process.

[7:18] There are multiple different tools that are out there in the world, but the one that I have found to be the most practical when I worked with families related to being an occupational therapist was the functional assessment staging tool.

[7:44] So the functional assessment staging tool was developed by a physician by the name of Dr.

Barry Reisberg, and it is developed off of a previous tool which was called the Global Deterioration Scale.

Now, why is this important?

So I want us to just think about it in this way.

The functional assessment staging tool is a, and this is my first point for today, is it's a staging tool that uses a process called retrogenesis.

So point number one is what on earth, Lisette, is retrogenesis?

[8:33] Retrogenesis, if you think, if you just take the word retrogenesis, it literally means means retro, the past, and genesis, like the book of Genesis, the beginning.

So retro going back to the beginning, retro genesis.

And when you understand retro genesis, and when you understand the functional assessment staging tool, which retro genesis comes from, it actually makes it significantly easier for us, number one, for me to explain to someone else what is going on, because then it kind of makes sense.

It's like the penny drops and people have a much better understanding of what it is that they are going through and what they are facing. So, what is retrogenesis?

[9:30] Most of us have had children. Most of us, if we haven't had children, we have been around other people who have had children.

Most of us have seen a child develop from birth all the way through to adulthood.

Did you know that caring for a person with dementia dementia doesn't have to be this hard.

If you are struggling and you would like to join our next free workshop, the topic of the workshop is Three Tips How to Avoid Challenging Dementia Behaviors Without Stress, Anxiety, or Burnout.

I invite you to walk away with science-backed dementia caregiving skills that many professionals don't even know after attending this free workshop.

[10:27] If you'd like to register, message me the word workshop on Instagram or check out the link in the show notes below.

Why is this important? Why is it important to understand normal physical and cognitive development of a human?

Because when you actually understand that process, then the whole process of retrogenesis becomes very practical and very easy to understand.

Understanding Retrogenesis and Normal Development

[11:05] And I want to add a caveat here, and that is when I explain to families how a person living with dementia is functioning, and you use chronological age to give it as an example, I want people to understand very clearly I am not saying that that person who is an adult is like a child, but what I am saying is that at this point in their life, their brain is processing information at that particular chronological age.

So I have to always be very careful. I've had foot-in-mouth disease before where I put my foot in my mouth and somebody misunderstands what I'm trying to explain to them.

And for that, I apologize sincerely.

If talking about an adult who is changing because of a process process and equating it with a chronological age in order to make it more practical and understandable.

If that upsets you, I apologize in advance.

That is never the intent, but it is a very practical way for us to understand the process. And why is that?

[12:34] Why is that important to you, that's the second point.

[12:40] Retrogenesis is important to you. Understanding the functional assessment staging tool, is important to a family caregiver of a person living with dementia because intuitively we as parents, as aunts, as uncles, as grandparents, we as society intuitively know when a child is safe to do something.

[13:07] We intuitively know that a two-year-old is not safe to be left home alone.

We intuitively know that a 12-year-old is safe to be home for short periods of time, but that they're not safe to necessarily be driving a car.

We intuitively know that a young adult who is getting ready to go to college and is starting to maybe work outside the house and make money is going to make errors related to things like paying bills or showing up to work on time or certain things like that.

We intuitively know, as a person is developing from birth all the way through adulthood, how they are processing information and when they need assistance.

So when we intuitively know about that related to a child based on developmental processes that they go through, if you understand retrogenesis and you understand the functional assessment staging tool, which in essence goes from.

[14:23] Think, a college-aged young adult all the way back to a person being born and what they're able to do at each of these different types of timeframes in our life, then all of a sudden it is very practical for us as family caregivers to be able to recognize that my mom who is living with dementia.

[14:50] May not be safe to drive a car anymore, or that my father who is forgetting the stove on may need more structure or supervision or help in the house in order to remain safe.

Because bottom line is, what is the most important thing for us to understand in a dementia caregiving process? And that is safety, right?

The Importance of Recognizing Safety in Dementia Care

[15:17] Safety of both the person living with dementia, but safety of the people around them. So I'll use this as an analogy.

[15:28] Many, many, many, many, many family members of a person living with dementia will be very reluctant to have the conversation about taking away a vehicle, taking away a car.

Because we all recognize that when we are given the right, it is a right.

It's a privilege.

I'm sorry. It's not a right to drive a car. It's a privilege.

We have to go get a license, insurance, all of these steps that we have to take in order to have the privilege of driving.

But the privilege of driving equates our independence.

When you get your driver's license, you automatically have more independence.

So the flip side of that is when we take on the conversation about having to take away the car, we are recognizing that, that this person is changing. But it is a privilege to drive a car. It is not a right.

[16:33] Now, how does this translate into what I'm talking about related to retrogenesis and so on?

Is because driving is very automatic, extremely highly learned skill.

So it looks like we're actually able to drive when our brain is not processing the information that it's getting.

And not only are we then, back to my point of safety, not only are we then putting ourselves at risk or the person living with dementia at risk, but we're also putting other people on the road at risk.

And so we have to ask ourselves if the most important part of a dementia caregiving process is safety, keeping the person living with dementia safe, as well as the people around them safe, then we know that if we understand retrogenesis, if we understand the functional assessment staging tool, that we have a barometer, a way of actually understanding safety.

[17:40] And when a person is or is not safe to live alone anymore, or is or is not safe to drive anymore, or is or is not safe to manage their medication or their finances, it takes the guesswork out of dementia caregiving.

It makes it super, super, super easy then to recognize and to understand when it's time as a family caregiver to step in and help.

Simplifying Dementia Care Challenges

[18:09] Did you know that caring for a person with dementia doesn't have to be this hard?

If you are struggling and you would like to join our next free workshop, the topic of the workshop is Three Tips How to Avoid Challenging Dementia Behaviors Without Stress, Anxiety, or Burnout.

I invite you to walk away with science-backed dementia caregiving skills that many professionals don't even know after attending this free workshop.

If you'd like to register, message me the word workshop on Instagram or check out the link in the show notes below.

So that's the second point. Why is it important to you?

Because we intuitively know when somebody is or is not safe to do something.

[19:15] But because an adult is having changes in their brain, and we want to honor them because they're our parent, they're our spouse, and they are an adult, we wait to step in to help.

But what I want you to think about, I want you to reframe it a little bit when we look at it from a safety perspective.

Is it the best thing for us to wait and delay lay because we're honoring our parent.

We're honoring the adult that we have known and loved for decades as a spouse, as a parent.

Is it the right thing to wait to step in to help because you don't want to quote unquote upset the apple cart?

If we reframe it into a position of strength where we want to ensure not only their safety, but other people around them's safety, and that we then understand the process that their brain is actually going through, then it makes it a little bit easier for us to step in and become the person who is having to make some of these decisions with them and accept these changes as they are coming along. I want you to kind of.

[20:37] Use this as an analogy, all of us have had a light, a light bulb, right? We've all seen a light bulb before.

And we've all seen a light bulb when the bulb is getting ready to not work anymore, right?

So you put the light on and your light bulb is there and it's slowly starting to dim and it's slowly starting to not be as bright anymore.

It doesn't matter whether you're you're putting more current through the stream, the light bulb is not going to get brighter again.

It's going to continue to dim and dim and dim until those wires are done and the light bulb blows, right?

[21:19] Sometimes it blows quickly and you switch the light on and boom, the light bulb blew, right?

But sometimes the light bulb just slowly, slowly dims and dims and dims every single time you put the switch on until it's gone.

Well, when our brain is physically changing, and what I want you to recognize and realize that even though we cannot see those physical changes in the brain, these physical changes are occurring in a person living with dementia's brain.

It's like that current in the light bulb, slowly dimming, dimming, dimming, and it doesn't matter how much current you throw through it, it's not going to get brighter again.

As a person living with dementia's brain is changing, these changes are going to occur over time.

Anticipating Changes with Retrogenesis

[22:12] And even just saying out loud and recognizing that we are going to have these slow changes over time equals putting putting yourself in a position of strength because you can anticipate then some of the changes when you follow and understand a process called retrogenesis or the functional assessment staging tool.

So the third point I wanted to make today is.

[22:41] What then do you need to do about this? What do you as a family caregiver do with this information called functional assessment staging or retrogenesis?

[22:56] The first thing I want you to do or understand is that these changes are going to come.

If the person that you are taking care care of, whether it be your parent or your spouse, who is living with dementia.

[23:12] If they truly have dementia, these changes are going to come over time.

If they live long enough, the person living with dementia will need 24-hour supervision.

End of discussion. If you just look look at normal functional human development all the way from birth to adulthood, and you look at that going backwards, which is retrogenesis, at some point or another, the person that you are caring for, that you love, is going to require 24-hour care.

And it really comes sooner than what we think because we know a child who is six or seven years old cannot live alone.

We know that a child who's 12 years old cannot live alone.

An 18-year-old can live alone, but they may need some supervision for things like paying the bills or grocery shopping or things like that.

So we don't know how long it's going to take, but at some point or another, we know that these changes are going to come over time.

And if you understand the general process of retrogenesis.

[24:28] As a person is changing, you can anticipate what's coming next, which then makes the whole process easier for you.

Even though each person is different because each person's brain is different and each person is different and I recognize that.

That's what makes it look unpredictable to people because every person is different but if you understand it's going to follow the the framework of retrogenesis even though every person is different it makes it easier for you to anticipate what's coming next.

For example, if a person is not scanning their environment and going and opening a closet or a fridge to look for food, I know without a shadow of a doubt they cannot live alone anymore because that means they won't go to the fridge, open it up, and get themselves something to eat.

So there are these certain things that we can then start to build in and anticipate, even though it doesn't give us a calendar that says this is going to happen.

[25:38] On this particular day, it does give us a framework of looking at what's coming next.

So if you understand that, it makes it easier for you to anticipate what's coming next and be prepared.

Because if you're prepared as a family caregiver, if you understand that dementia and dementia caregiving will follow a fairly predictable path, it means you can prepare for what's next, and you can be proactive.

Benefits of Proactive Dementia Caregiving

[26:04] So when you are a proactive caregiver, it significantly, significantly decreases your own stress levels in this process because you have given some thought and thought through what you need to do next.

And then when a change comes, you're not scrambling, you're not in a crisis mode, you're not getting overwhelmed with all of the tasks and the responsibilities of being a caregiver because you've been proactive.

[26:38] So today, I want to invite you again to become a founding 54 member of this low-cost group group coaching program that I am starting because this is exactly what we work through with my clients, with the people that are joining as a Founding 54 member.

In the first 90 days of this program, which until March 31st, so this episode is going to come out on February 29th, On March 31st, so you have one month to decide, if you sign up for this Founding 54, becoming a Founding 54 family member, for the investment that you put in to becoming a member, you will have lifelong access to coaching, dementia coaching.

Why is dementia coaching so important?

Because what the research has shown, and one of my biggest driving forces is that people who are successful caregivers have support over an extended period of time.

And the Dementia Coaching is where you sit with me in a group setting where you get support from other people related to this journey.

[28:05] And we, as things change, as you come to me with questions, I'm answering your questions related to the process and the changes that are inevitably going to come.

But if you sign up before March 31st, you will have lifelong access to the dementia coaching.

But in the first 90 days, what we start with...

[28:31] Is we actually start with where we are, right? It doesn't help if we don't know where we're starting from, right?

And we start with where you as a family caregiver, where your stress levels are right now, today, as we get started.

And then we do in a screening, we do a questionnaire.

I have a questionnaire for you to fill out related to where the person you are taking care of is.

Is. Because if we know that, and we use the functional assessment staging tool to do that, if we know where they are, we can anticipate what's coming next, which means that I can teach you what you need to do before things happen.

And most of my clients that are in the beta program of this community that I'm starting, this low-cost group coaching program, which is not a membership.

It is a longitudinal support.

It is a year-long commitment to yourself so that you can make it easier for yourself.

[29:42] So it's not a membership. You can't join and then just stop.

It is a community community that is a commitment because the research shows that if you are committed to actually doing this, that it will significantly decrease your stress levels.

Invitation to Join Founding 54 Caregiver Program

[30:02] And so I'm inviting you that if you are ready to make a decision to be an active and proactive family caregiver of a a person living with dementia.

[30:14] Whether you be a spouse or whether you be a adult child who is navigating this journey, I invite you to email me at lizette at thinkdifferentdementia.com.

And what we'll do is we'll hop on a phone call and we'll talk this through because I do not want you to join this community if it's not the right community for you.

All that happens then is that that everybody is miserable, right?

This is not a place for verbal vomit. It is a supportive community.

It is a very structured process that I take people through.

And after we do the current level of where everybody is, we go into what...

[31:00] The capacity is that you have to care, capacity to care.

And in that place, we go into what are challenging behaviors and what is a repeatable process to manage challenging behaviors.

Because the research also shows that challenging behaviors is the thing that puts a person in a facility over time.

And we will talk about that. But what I'm inviting you to do, if I resonate with you, become a Founding 54 member.

It is not an expensive investment for the quality and the quantity of time that you will get with me over the lifetime of the person you're supporting. warning.

And so this is this week's episode, and I want you to really, really consider, you know, what we talked about today related to dementia following a very repeatable process.

The Power of Speaking Dementia

[31:59] And in the next episode that we are going to be doing, we are going to be talking about how to speak dementia, And can you learn to speak dementia? And what does that mean?

Because we're going to look at the second mistake I see people making in dementia caregiving, that they don't empower themselves to actually speak dementia.

And if you learn to speak dementia, it will significantly decrease your stress and overwhelm.

[32:30] Quite frankly, what I do in the coaching, what I do in all of my interactions with people is I'm not working on changing the person living with dementia.

I'm training you on how you need to work with the person living with dementia.

Because if I can train you to speak dementia, then I can help the person you are taking care of stay at home.

And ultimately, that is my goal is to help you as a family caregiver significantly decrease your stress in this process using evidence-based practices.

Because guess what, guys? The evidence is out there and it is possible to do, but it's going to take effort and it's going to take some time and it's going to take some investment on your side.

But it's just kind of like losing weight, right?

You can say you want to lose weight, but unless you actually do something about it, it's not going to happen or likely isn't going to happen.

So thank you for listening to today's episode. I yet again invite you to become a founding 54 family and reach out, Lizette at ThinkDifferentDementia.

All the information will be in the show notes and I will see you in the next episode.

Closing Thoughts and Community Engagement

[33:46] Thanks for joining me today, Success Seeker. I pour my heart and soul into this program to serve you.

You can serve me by leaving a review on Apple Podcasts and join our free Facebook group, Dementia Caregiving for Families.

It's a positive and proactive space to navigate dementia caregiving together.

Get practical tools and find support, but without the verbal Be a part of our community where we seek to find peace of mind and ease, despite the dementia diagnosis.

So join today and see you next time as our first.

Subscribe To Dementia Caregiving For Families Podcast

If you feel like dementia caregiving is hard and unpredictable and you are struggling to help a spouse or a parent living with dementia, join our next free workshop.
 https://www.dementiacaregivingmadeeasy.com/wsl

Join our Facebook Group at: https://www.facebook.com/groups/1301886810018410 

Become a  Member of Our Exclusive Program!  https://www.dementiacaregivingmadeeasy.com/start

Subscribe To Our Newsletter

About the author

“Think Different” Dementia’s owner, Lizette Cloete, OTR/L graduated as an Occupational Therapist from the University of Pretoria in South Africa in 1992. Lizette has almost 30 years of experience as an Occupational Therapist in a variety of settings, the latest being in the home health environment. She enjoys teaching on the topic of dementia, most recently presenting at a national conference on the topic “Dementia Made Simple”.

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.

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