Curious About Parkinson's and Its Impact on Dementia?

In our latest episode, we going into the complex world of Parkinson's disease, particularly its connection with dementia. This enlightening discussion offers a blend of personal insight and professional expertise, making it a valuable resource for caregivers and families alike.

Do People With Parkinson's Disease Always Develop Dementia?

0:00:01 A Wonderful Interview with George Ackerman about Parkinson's Disease
0:02:56 Introducing Parkinson's Disease
0:06:44 Understanding the signs and symptoms of Parkinson's Disease
0:10:27 Exploring the link between Parkinson's Disease and dementia
0:15:46 Understanding Parkinson's disease and its medication effects
0:28:33 Join the Founding 54 Membership for Dementia Care Support
0:30:22 Not All Person living with Parkinson's Disease Develop Dementia

Parkinson's Disease: More Than Just Tremors

The conversation begins by shedding light on Parkinson's disease, a neurological condition often misunderstood as merely causing tremors. However, it's much more. We explore the key symptoms: tremor, bradykinesia (slowness of movement), rigidity, and postural instability. These symptoms profoundly impact the person living with Parkinson's disease lives, but understanding them is the first step in effective management.

The Parkinson's-Dementia Connection

A crucial aspect of this episode is addressing a common question: Do all the person living with Parkinson's disease develop dementia? The answer is not straightforward. While not all the person living with Parkinson's disease experience dementia, a significant portion may develop cognitive challenges over time. This segment emphasizes the importance of early detection and specialized care for those at risk.

Empathetic Caregiving in the Face of Challenges

In a heartfelt discussion, this episode touches on the emotional and logistical challenges of caregiving, especially when dealing with complex diseases like Parkinson's and dementia. Listeners are encouraged to seek support, educate themselves, and approach caregiving with empathy and resilience.

Community Support: A Pillar of Strength

Recognizing the difficulty of navigating Parkinson's and dementia alone, the episode highlights the importance of community support. It offers an invitation to join a group coaching program designed for caregivers, emphasizing shared experiences, and the power of a supportive network.

Conclusion: A Message of Hope and Understanding

Concluding on a hopeful note, the podcast reaffirms the message that while Parkinson's and dementia present significant challenges, understanding, support, and community can make a profound difference. Caregivers are not alone in their journey, and together, they can navigate these challenges with strength and compassion.

To our listeners: How has understanding more about Parkinson's changed your approach to caregiving or supporting a loved one? Share your stories and join our community for continued learning and support.

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A Wonderful Interview with George Ackerman about Parkinson's Disease

[0:01] On Monday, Episode 74 was aired, and it was an interview, one of my first interviews with a wonderful young man by the name of George Ackerman, who has such a heart for getting the word out related to Parkinson's disease and dementia. dementia.

I mentioned in the episode that we recorded a couple of weeks ago that I have a family connection to Parkinson's disease, which was one of the reasons I reached out to George, and it was a wonderful episode.

So if you haven't listened to that one, go back and listen to it.

And then today's episode is to try to understand and answer the question for people whether people People with Parkinson's disease always develop dementia.

And what are the different types of Parkinson's disease-related types of dementia?

[0:56] I invite you, if you have not yet registered for my free monthly workshop, to go to Instagram and direct message me the word workshop.

And you can get the link to sign up for the workshop.

It's about two hours. And we really go in-depth into the process of how you can start to actually change the outcome of your family caregiving journey.

So go check it out. And I look forward to seeing you in the workshop.

I talk to people. I'll answer your questions.

[1:33] And go ahead, register early, and show up. and then I look forward to you guys giving me feedback on this podcast episode on Parkinson's disease.

If you like the show, please go to Apple Podcasts and write me a review.

It means so much to me. I actually do read them.

It gives me such encouragement to keep doing this program.

So go ahead and I will see you in.

[2:01] Music.

Introducing Parkinson's Disease and Episode 75

[2:56] Takes off. Welcome to episode 75, which is do people with Parkinson's disease always develop dementia?

So let's unpack that a little bit. I'd like to start with what is Parkinson's disease.

The reason for today's episode is because earlier this week in episode 74, I interviewed Dr.

George Ackerman, and it was such a wonderful experience for me, and he is doing such tremendous good work in Parkinson's disease advocacy.

But because there is a strong component of dementia related to Parkinson's, I thought I would unpack that a little bit today.

[3:48] A little known fact, probably a little more known fact since I mentioned it in Monday's episode is that my grandfather actually had Parkinson's disease.

So when I first started working as an occupational therapist, it was my very first specialty certification was in how to help people living with Parkinson's disease.

It was very frustrating to me because when we were living here in the United States, obviously my grandfather was still in South Africa.

And as his Parkinson's disease progressed, I was able to hear the changes and the signs and symptoms that he was having of late stage Parkinson's, including developing probably a Parkinson's disease, dementia over time, as well as the problem that he was having aspiration or he was choking on his own saliva when I spoke with him on the phone.

It was very difficult and sad for me because I had all of this knowledge and information that I could use to help my own family, and I was unable to do it because I was living on the other side of the world.

So as a family caregiver.

[5:06] I want you to hear very clearly that I understand that sometimes you have the desire to help a family member living with dementia, whether it be Parkinson's disease, dementia, Lewy body dementia, or any of the other types of dementia.

And it is due to providential circumstances, not in your ability to actually do something to physically help them because of whatever whatever factors that may be.

So I want to encourage you if you're in a position where you are wanting to be a family caregiver and help somebody that you love living with dementia, but you're unable to do it, it is a difficult thing to accept, but it is okay as long as you can do everything you can to help that person thrive.

And if you're helping the people who who are able to support them, give yourself some grace and give yourself some comfort that the Lord knows you have this desire and to just continue to serve where you can.

[6:13] Educate people, continue to learn for yourself.

So it's, you know, it's hard. It's hard sometimes the world is turned into a much larger place, but a much smaller place.

My family is spread spread over four different continents.

We have family in Canada, in the U.S., in Australia, and in South Africa.

So I get it. Be gracious to yourself, dear courageous person who is a family caregiver.

Thank you for being here and listening to today's episode.

Understanding the signs and symptoms of Parkinson's Disease

[6:44] And let us start with understanding, first of all, what is Parkinson's disease?

So Parkinson's disease is a disease process where you start to have abnormal things clump up in your brain.

It also has to do with a neurotransmitter.

Idiopathic Parkinson's disease has to do with our body not getting enough dopamine, which means that we start to have these signs and symptoms of Parkinson's disease.

So what are the signs and symptoms of Parkinson's disease? I promise this isn't going to be all sciencey. I get that.

I can do the whole nerd thing, but we're not going to do the whole nerd thing.

[7:27] The typical four, what we would call cardinal signs or the signs that doctors are looking for when diagnosing somebody living with Parkinson's disease, and we're starting specifically with Parkinson's disease first, are tremor.

You know, the cardinal Parkinson's tremor is what we call a pill roll tremor.

It looks like you're holding a pill and you're rolling it in your fingers, but it's not always as evident as that.

It can be a very slight tremor. It can be a lot more evident over time and frequently it starts in one extremity or one arm and then moves to the other one.

A lot of my people that I've worked with over decades have told me that sometimes they felt the tremor on the inside but you couldn't see it on the outside.

So I thought that was very interesting. So tremor is one of the cardinal signs.

[8:26] Another cardinal sign of Parkinson's disease is what we call bradykinesia.

Well, that's just the big fat fancy word for slowness of movement, right? So what happens, the person's body has difficulty actually getting going.

So starting the movement out because of the lack of the neurotransmitter and these clumps in their brain causing this slowness of movement.

And then once the movement starts, so the person is very difficult to get going.

But once they get going, they cannot stop either. either.

And I've seen people living with Parkinson's disease where, you know, they struggle to get up and going, but then on the other end, when they're trying to stop on the other side, they can't slow it down either. So that happens as well.

That's called bradykinesia, fancy word for slowness of movement.

The third cardinal sign of Parkinson's disease is what we call rigidity, So it's kind of think like a board.

[9:33] Difficulty bending or straightening out. Very rigid.

We all understand what rigid looks like, right?

Think of a guy standing in front of Buckingham Palace like a board.

That's rigid. Then we have what we call postural instability.

That's the fourth cardinal sign of Parkinson's disease.

And what that looks like is this postural difficulty, difficulty with balance.

So a lot of people with Parkinson's disease will end up falling.

Difficulty with coordination, which all of these work together.

So those are the signs of Parkinson's disease. But back to the question, do people with Parkinson's disease always develop dementia?

Exploring the link between Parkinson's Disease and dementia

[10:27] Have you ever wondered why women in particular are struggling when they are family caregivers?

Why we wait so long to actually either prioritize ourself or prioritize our health or prioritize our other relationships, why we give and give and give at the expense of ourself.

I have often wondered why.

[11:03] And frequently, one of the things that pops out is that I don't think women believe that they deserve to take care of themselves. We're moms.

Oftentimes, we are either professional caregivers, or we are in the caring profession, or caring professions of various different kinds.

And so we tend to put our wants, needs, and desires in the background, which is all well and good when life is smooth sailing.

It's not such a good idea when you are a family member of somebody living with dementia is it it is very difficult to navigate either dementia caregiving or the health care system related to caregiving the health care system at all family members related to dementia caregiving the list goes on and on and on and I know that you know because you are living this I.

[12:12] But today, if you are listening to this podcast, Dementia Caregiving for Families, I have an invitation to you to become a founding member of my brand new group coaching program.

But this is a very unique and different and extremely valuable offer that I am making you today because it is a low-cost group coaching program.

Now, what does that mean? What's the difference between a group coaching program and a membership?

[12:45] There are lots of memberships. Think Netflix or even Amazon Prime is a membership.

It's just an annual membership, your AAA membership.

There are lots of memberships, right? The difference with this is if you think of a membership like Netflix or Hulu or those type of memberships, they're a cancel whenever you want type of membership, including your gym membership you can cancel it whenever you want i'm proposing a different unique way of dementia caregiving communities i'm proposed proposing that we don't look at it from a, oh stop whenever you want to because life's gotten crazy and in the way a type of community and cancel it i want to bring people into the community that are going to have the right level level of support for the remainder of the person that they are taking care of his life.

[13:43] So for the 54 founding members of my group, my low-cost group program, I'm going to be giving them two very special things.

Number one, all of the family members can join for the same low-cost price.

So it's a one-and-done price, but the whole family can be in the same community, getting the same information from a professional who is not involved in the family drama to be the moderator between all the siblings.

The second big benefit is that I'm allowing the founding members and the founding members only, the 54 founding members, to actually stay in this community for the duration of the length of their parent or spouse or whoever they're supporting's lifetime.

[14:38] So that's a big, big thing.

Big value. I have never heard of anybody else who is thinking about doing something like this.

So why Lizette? Why are you willing to do this?

Isn't it going to take all your time and energy?

Well, maybe. I don't know. But I can tell you one thing.

I know that the research shows, the data out in the world shows that people who are the family caregivers of a person living with dementia need support over time.

They don't need a one and done. They need longitudinal support over an extended period of time.

And so that's what I'm proposing to you today to become a founding member.

If you're interested, I want you to message me on Instagram.

Your other option is check in the show notes below. We'll have the link for this offer.

And I hope I pray to see you be be one of the founding members of this new, totally different concept, low-cost group coaching program for family members of people living with dementia?

Understanding Parkinson's disease and its medication effects

[15:46] The short answer is no. However, having said that, a large percentage of people who have idiopathic Parkinson's disease, which means that the medication for the dopamine replacement can actually affect a change and help them.

So there are different types of Parkinson's disease, but a person who has idiopathic Parkinson's disease, the one that the medication Sinemet or a dopamine replacement can help with, do they they always develop dementia?

And the short answer is no. However, like I said, a large percentage of people who have Parkinson's disease, if they live long enough, can develop dementia on top of their Parkinson's disease.

So the second point we're going to talk about is understanding Parkinson's disease-related dementias, right? What does that mean?

Most of you guys have heard of the term, umbrella term, related to dementia, right?

So, dementia is an over-

[17:06] Overarching or umbrella over multiple different types of dementia.

And one of the umbrellas underneath that is the umbrella of Parkinson's related dementias.

Now underneath that umbrella, think another baby umbrella.

And underneath the baby umbrella, we have three things.

We have dementia with Lewy bodies, we have Parkinson's disease, and then we have Parkinson's disease dementia.

[17:38] So Parkinson's related dementias are about 5 to 10% of the dementias, depending on which, you know, resource you're looking at, but about 5 to 10% of the dementias are Parkinson's disease-related dementia or Parkinson's-related dementias.

So what is, what does, what's the difference between the two?

So we have, we're going to talk a little bit about the progression of Parkinson's disease.

Now we're going to look at the two different ways that people, result in Parkinson's-related dementias, and they really have to do with which, which path a person is on. Now, what do you mean by that, Lisette?

So imagine going on a walk into, just going for a walk like a trail, and you come up to a fork in the trail.

And the one fork in the trail goes to Parkinson's disease dementia, and the other fork in the trail goes to dementia with Lewy bodies.

So how do you know when you're looking at the big umbrella of Parkinson's related dementias, how do you know which one is which, right?

And that's a very important question.

[19:00] The biggest difference between these two types of dementia are specifically related to the cause of.

[19:11] How we got there, which path we're on.

And for example, a person living with Parkinson's disease that over time develops dementia, Parkinson's disease symptoms are first.

So the tremor, the slowness of movement, the rigidity, the postural instability, All of those signs come first, and then later on in their disease process, do they start to develop the thinking part of it, the decreased ability to problem solve or thinking or difficulty with their memory.

But their Parkinson's disease was evident first.

We knew that they had Parkinson's disease, like my grandfather.

My grandfather likely had Parkinson's disease, dementia, because he had Parkinson's.

I was young.

I don't recall exactly how old he was when he developed Parkinson's disease.

But he was in his 60s, maybe mid to late 60s, and he lived until he was 85.

So by the time he got to the latter part of his 20-year-plus journey with Parkinson's disease.

[20:32] His disease process had translated into having difficulty with his thinking, difficulty with his memory.

All of the thinking stuff, what we call dementia, came later on.

The physical stuff came first.

Now, the flip side of that is a person who is living with dementia, dementia with Lewy bodies.

So that's a different type of dementia.

It's also still the Parkinson's related dementia.

But dementia with Lewy bodies is when the thinking stuff comes first, and the The physical stuff comes later on.

[21:18] Lewy body dementia is caused because the body makes these deposits of protein in the brain that cause over time the stiffness and the tremors and the slowness.

But the thinking stuff started first.

So typically we notice a memory deficit or other types of difficulty processing.

So their thinking signs come first, and then their physical signs come later.

[21:50] I still find it very sad.

And I think about this often when I do my classes, my free workshop, which I do a couple of times a month.

I do a monthly free workshop on three tips for you to be able to manage, quote unquote, challenging behaviors in somebody living with dementia that I invite you to come to sign up for it. The link is in the show notes.

Like I said, I do this free workshop. It's about two hours every month and a couple of times a month. I would love to have you come so that you can kind of learn a little bit more about this.

So I do my free workshop and I mentioned Patch Adams frequently during my workshop for a couple of reasons.

[22:37] Patch Adams was a physician and I don't recall what years he was a physician.

However, he was played by the actor Robin Williams.

And so when I do my free workshop, I actually have a lot of Patch Adams quotes in it because Patch Adams, Robin Williams, who played Patch Adams, was actually, you know, he committed suicide and initially everybody thought he had just committed suicide because he was depressed.

Well, come to find out when they did an autopsy, he had undiagnosed Lewy body dementia or dementia with Lewy bodies.

So it can really impact people's thinking processes first, and then the physical signs come later on.

So that's the biggest difference between the progression of dementia with Lewy bodies or Parkinson's disease dementia.

Now, what can you do about it?

[23:30] If you suspect somebody you love has Parkinson's disease, don't despair about it. Get a diagnosis.

An earlier diagnosis is better. The sooner you find out what you're dealing with is better because there are things that you can start to do.

There's a lot of therapy.

There's one called LSBT Big.

There are lots of different things that you can do for somebody living with Parkinson's to truly impact their life, keep them active, decrease the physical signs of the Parkinson's disease.

Find a Parkinson's disease support group. Truly focus on the physical stuff for a person who is living with idiopathic Parkinson's disease.

Start there. Start with the physical stuff.

Learn as much as you can about the whole process of living with Parkinson's disease because it can can impact everything.

It impacts people's ability to sleep. It makes people sometimes not initiate real well.

There are lots of things that go with it outside the scope of this podcast today, but really get yourself involved with the local Parkinson's Disease Association and learn as much as you can about Parkinson's disease.

[24:42] Now if you have somebody who you love and you support and you know that they have Lewy body dementia, I invite you to truly reach out to me.

[24:52] Consider joining my Founding 54 low-cost, truly ridiculous price, low-cost group membership so we can help you with the way that you need to help the person you love who has both physical problems as well as cognitive impairment.

So we want to put you in a group where you get support, where you can ask questions, where there's a positive community around you for support, where we can track your stress levels, where we can give you the practical skills that you need to take care of the person that you're helping who has a diagnosis of Lewy body dementia or dementia with Lewy bodies.

You need to find support there are only a handful of places people can truly get support related to these types of dementias some of them are free facebook groups the problem i have with free facebook groups is unless you're very careful about the facebook group that you're in it can be what i call verbal vomit where everybody is feeling anonymous and they just come in and they They can just go blah and say everything that they want about things because there is a modicum of, you know, anonymity.

People don't know who I am. And I'm really trying to create my mission is to create a positive, not a negative.

[26:22] Just say it's positive and forget the realities, but to look at the problem differently and to teach people to think differently about their journey because you can become an extraordinary caregiver.

You can change how your thought processes are related to whatever type of dementia you are helping somebody with, but it starts with me.

I can't change the circumstances that I'm living in. I cannot change the fact that I know my dad now has mild cognitive impairment.

[26:56] I cannot change the reality that I'm having to be a family caregiver to my mom and my dad.

I cannot change that. The only thing I can change is how I choose to live and how I choose to respond to the changes in my life.

And I choose to be a caregiver that is going to do everything in my my ability to protect myself and my own mindset and the way I look at the problem and how I come to coming up with practical solutions to the specific problems instead of just focusing on the stuff I cannot control.

It's been fascinating to me as I've been learning about starting a business, how similar the mindset of a person who is an entrepreneur has to be related to starting their business and how much overlap there is between that and being a successful, extraordinary caregiver.

It starts with what you believe. It really does.

And so if you're ready for more help and support, if you're looking for a positive.

[28:08] Uplifting, science-backed, evidence-based, not fluff, not verbal vomit, community that is a low-cost group, not a membership.

A membership implies you can leave. I want to bring people in for the duration of their journey.

I want you to have support and success around you for the entire time.

Join the Founding 54 Membership for Dementia Care Support

[28:33] I invite you to watch my free workshop, consider becoming a founding 54 member, family member, I let you put your whole family group in it.

And right now it is a ridiculous, ridiculous offer to start this group cohort out because my goal is 54 founding families. please.

Once those 54 slots go away, it will be an annual type of investment.

So I encourage you, reach out to me, text me on Instagram, start a conversation.

I promise I'm a real live person on the other end. I will answer your questions.

We can talk, we can set up a time to just dialogue, But I promise you, there are easier ways to do dementia and dementia caregiving, so this is one way that you can find support and help.

So what did we talk about today? We talked about what Parkinson's disease is, right?

How Parkinson's disease is different, that there are different types of Parkinson's disease, what the signs and symptoms of Parkinson's disease are.

Are. Then we talked about understanding Parkinson's related dementias.

We talked about Parkinson's disease dementia, and we talked about dementia with Lewy bodies, which are just two different paths to the same outcome.

[29:58] We really looked at that in depth, and then we talked about how you can get more individualized support.

If I resonate with you, I would love to meet you. I am here for the duration.

We are going to change the outcome for the family caregivers of people living with dementia.

Not All Parkinson's Disease Patients Develop Dementia

[30:22] To answer the question, do people with Parkinson's disease always develop dementia?

The answer in a nutshell is no, not always.

But 50 to 80% of people can can develop dementia over time.

Thank you for listening to today's episode. I look forward to talking to you.

Message me on Instagram and reach out if you want to know more about the program and we will go from there.

And thank you for listening and may the Lord bless you.

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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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