Understanding is the beginning

Summary

In this conversation, Rachel and Shoshawna delve into the complexities of dementia, discussing its various subtypes, including Alzheimer's, vascular dementia, frontotemporal dementia, and Lewy body dementia. They explore the unique characteristics and progression of each subtype, emphasizing the challenges caregivers face and the importance of understanding these differences for better management and support.

Takeaways

• There are four main subtypes of dementia: Alzheimer's, vascular, frontotemporal, and Lewy body.
• Alzheimer's disease is characterized by a long, steady decline over time.
• Vascular dementia shows a stepwise progression with acute declines.
• Lewy body dementia is marked by fluctuations in abilities and daily functioning.
• Frontotemporal dementia affects decision making, behavior, and impulse control.
• Caregivers face unique challenges with fluctuating symptoms in Lewy body dementia.
• Understanding the different subtypes can aid in better caregiving strategies.
• Many individuals may experience a combination of these dementia types.
• Research is ongoing to find ways to prevent brain cell death in Alzheimer's.
• Awareness of dementia's impact on daily life is crucial for support.

Transcript

Ep2. Understanding is the beginning: dementia explained

Rachel Coady 

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

(00:13)  Shoshawna Rainwater 

And I'm Shoshana Rainwater.

(00:15)  Rachel Coady 

On today's episode of Hope Floats, we're going to talk about the basics of dementia--the minimum amount that we as people caring for people living with dementia might need to know. We'll call these types, terms, and trajectory. As we go into today's episode, we want to offer that there are three real goals that we have for this podcast to build education and the understanding of dementia, to reduce suffering, both for the person with dementia and the care partners and to enhance wellbeing for everyone involved. 

On today's podcast and going forward, we're gonna use terms caregiver and caretaker interchangeably. We know people providing support in this disease feel differently about that term or how they identify, but for us, we'll probably use both.  So let’s jump in.

(01:10) Shoshawna Rainwater 

The idea that understanding is the beginning is a concept that can be true in a lot of different aspects of life. And it's true in the landscape of dementia that understanding the condition and disease is really foundational for everything else that comes after that. Dementia is a brain-based condition. And if that sounds super 101 to you, it is. And it can be easy to forget this as caregivers because some of the things our loved ones with dementia might do

can feel volitional, willful, or even that the behaviors are coming from a place of maybe not trying hard enough; or attributing it to longstanding personalities, like, “that's how they've always been.” 

The greatest risk factor for developing dementia is age. So, the longer we live, the greater our chances of developing dementia. Although people can develop it in their 40s and 50s, that is more unusual. And the average age of onset is around 73 years of age. 

(02:15) Rachel Coady 

Even before we jump into the experiences in this disease Shoshawna, can we talk a little bit about what are the differences between dementia and Alzheimer's? I feel like everyone just throws those things in interchangeably. Can you kind of break that down for us?

(02:30) Shoshawna Rainwater 

Yeah. So, I would say as caregivers, care partners, we don't need to be experts in the physiology of the brain; that's really the job of neurology and other medical experts. But as caregivers and care partners, we want to have and need to have knowledge about the basics of the condition of dementia. And you'll hear that I just use the term “condition” and not “disease” when describing dementia. And that's because dementia is actually an umbrella term for a group of diseases, not a specific disease itself. So, if we're going to get technical, it's actually a condition. 

And when we think about this condition of dementia, we can think about it as an umbrella term where there are over 70--and I've heard neurologists say up to 100--different types of dementia. And there's probably four or five that are the most common that you hear about, and that's Alzheimer's--which is about 60 to 80% of all dementias--vascular dementia, Lewy body dementia, and Frontotemporal dementia. And then what I'm also hearing neurologists describe lately, which is we're learning that it's unusual to have just one type of dementia--that it's very normal and prevalent to have actually a mix of different types of dementia. So, mixed would then be sort of that fifth category of dementia. 

And one way to think about it, an analogy would be that dementia as the condition is akin to “car,” if we’re using the analogy of vehicles; it is equal to car, whereas Alzheimer's would be the most common type of vehicle such as a Honda. So, I don't know if that's helpful to people to kind of have that analogy. But it isn't uncommon to hear those words, dementia and Alzheimer's used interchangeably. But they're not the same thing. But they get used interchangeably because Alzheimer's is the most prevalent type.

And when we talk about types of dementia, the technical term that people will want to know is that these are called “subtypes.” And that's helpful language, I think, for our listeners and community to understand is that it's not enough, in most cases, to just be told that your loved one has dementia. It can also be very helpful to us as people who care for a person with brain changes to know the particular subtype.

(05:07)  Rachel Coady (00:01.774)

That really helps to know there are so many different types. Can we pause for just a second and kind of break down those four key different types of dementia that you mentioned?

(05:16)  Shoshawna Rainwater (00:12.451)

Sure. Yeah, those four, let's start calling them subtypes. Those four main subtypes of Alzheimer's, vascular, frontotemporal, and Lewy body are different from each other. They are all brain-based challenges, but they do present slightly differently from one another. Alzheimer's is 

something happening in our brains where plaques, which are abnormal clusters of sticky proteins, and tangles, which are strands of another protein, they cause our brain cells to die. And that's the primary challenge and issue in Alzheimer's disease and where most of the research is being done is trying to figure out a way to keep those cells from dying. And Alzheimer's has a really interesting long, slow, progression, a very steady decline that does not look so stepwise as some of the other types do.  If you look at a drawing of the trajectory of it, it looks like a very long steady decline over time. And its length of experience is usually around eight to 10 years in the average person. 

Vascular dementia has to do with the death of brain cells due to circulation problems. People with high blood pressure, high cholesterol, or poorly controlled diabetes are at higher risk for developing vascular. It's not uncommon to see people carry the vascular and the Alzheimer's subtypes together. And vascular is really hallmarked by a more stepwise progression where people can kind of be plugging along, you know, having a somewhat of a baseline and then something happens where they have a decline and then they cannot bounce back from that. So, you see this sort of stepwise more acute decline, then things level out for a little while and then you see another stepwise acute decline. So that's vascular. 

Lewy body is an interesting type that is connected with Parkinson's in many cases, and it's caused by a misfolding of a protein in our brains. And one of its primary hallmarks is huge fluctuations in a person's abilities, but also in their ability to function day-to-day. So, there's big changes from day to day, even sometimes from hours to hours. You might see somebody who is having somewhat of a good day, then they go through a period of their day where they seem to be in quite a bit of decline--hard to rouse, sleeping most of the time, and then they'll kind of wake up and have periods of time where they almost seem normal. And that can be a really challenging subtype for caregivers because sort of those good times, the good fluctuations become a little bit of a teaser for, “oh my gosh, well, you know, they kind of seem normal, so why can't it always be like this?” But the hallmark of that particular subtype is really the fluctuations. Also, sleep issues and hallucinations are also big pieces of that particular subtype.

And then the last primary subtype that we see is frontotemporal dementia. And that's a group of conditions that result from a progressive degeneration of the temporal and frontal lobes of the brain. And you could think about those frontal and temporal lobes of the brain as kind of the executive CEO parts of our brains--kind of the “Dear Abby” sections, the areas that really help us understand how to act and behave in situations. And these areas of the brain that get impacted play big roles in things like decision making, behavioral and impulse control, emotions and language. And that is a much less common subtype than Alzheimer's or vascular.

And then as I said a bit ago, I'm hearing from neurologists and geriatricians that the more we learn about dementia and the brain, the more we're realizing that it's not uncommon for people to have some combination of or a mix of these different types.

(09:33) Rachel Coady 

Sounds like there's a lot of different aspects of dementia for us to understand and I'm really excited to get to break those down for listeners on this disease. Can we talk a little bit also about what makes this particular disease or these subtypes or this umbrella body of diseases so uniquely difficult? And also, maybe share on how common it is, how many of us are experiencing or going through this as care partners?

(10:00) Shoshawna Rainwater 

Yeah, great question. So, let's start with the second part of that question and talk about prevalence. So, there are about seven million people in the US who are living with dementia that's been diagnosed. And what's one of the challenging aspects is that the scope of this issue is really hard to understand because the medical establishment believes that only about half of those who are living with dementia have actually been diagnosed. And so. the scope is double what we understand it to be, potentially.

One of the other aspects that makes it so challenging is that only about 33% of people who have been diagnosed are aware that they have the disease. And one of the unique aspects of having a dementia can be that you have an underappreciation for or a lack of insight into your own condition.

The length of the experience of dementia is another piece that makes this disease particularly challenging. It's a disease that can last anywhere from two to 20 years, with the average length of experience being about eight to ten years. And that creates its own unique challenges because it is what we often refer to as a marathon and not a sprint. And that's in comparison to other serious illnesses of other major organs such as heart disease, kidney disease, et cetera.

(11:33) Rachel Coady 

I remember when you first shared that with me when we were working with my mom and it was really hard to imagine that we would go on an eight-to-ten-year journey and to your point, our journey was much shorter. But I do think--and we're gonna get into this on the podcast--we'll be able to talk about what happens over the course of this disease and the different phases. And it is to say to the listener that it is not one consistent experience for the journey of dementia. It is a changing, evolving experience with your loved one. So, it is a marathon and it's a changing marathon. It's not just a clear course for all those years.

(12:11) Shoshawna Rainwater 

Yeah, that is one of the things that makes it so challenging because the disease is always changing. People are having to adapt--both the person with brain changes, but also the people who care about them are in constant flux and adapting to new losses and changes in their loved one or in their person that they're caring for. And that creates a unique scenario where there's constant adaptation to loss.

(12:42) Shoshawna Rainwater 

The average age of caregivers for this disease is also older on average than all other major organ diseases. And the average age I believe is about 64. And part of that is informed by the fact that many caregivers are spousal caregivers. So, people who may also be entering into older adulthood.

(13:06  ) Rachel Coady 

Are there treatments available? Are we seeing progress or opportunities kind of in this marathon?

(13:13 ) Shoshawna Rainwater 

One of the things we'll do in our podcast is bring in experts who are researching, looking into cure. What I understand is that this time we've had some modest gains in medicines that help slow the progression of the disease that can give people gains of disease stabilization for a matter of months, but not years. So, I think it's important that we bring in the experts that understand this landscape of research, current research, what we can hope for, and kind of what the realities are for those of us who are in this right now.

I think one of the other, if we could go back to the challenges, unique challenges of dementia, one of the other things that makes the disease of dementia so challenging for people is that the organ that is impacted is the brain. And the brain is where our personalities and behaviors live. And so, you can't uncouple behavior and brain. They are one and the same. And so, when we have changes happening in the organ that controls behavior, it creates a challenge for families when they are experiencing a person presenting with new and unique behaviors or changes in personality. Oftentimes we hear people describe their person with dementia as having sort of unique experiences with agitation and upset and new behavioral baselines that have never been part of who they are. And that's very normal and actually should be expected in the disease trajectory. We'll talk in future episodes about ways to help mitigate that agitation on the part of the person experiencing brain changes.  But at its baseline, we can expect that dementia will create changes in personality and behaviors. And that's a very difficult thing, I think, for many of us. And societally and culturally, we have struggled to have a positive cultural response to people experiencing mental health challenges and emotional health challenges. And I would say dementia, out of all the organ diseases, can look very much like an emotional or mental health challenge.

One of the other really important things about dementia is that because of those brain changes, there is a loss of ability to self-determine and to choose one's own future. And agency really gets impacted in this disease. And that is a very unique feature of dementia. And in our country, in America, where autonomy and independence are held up as some of our very highest values, that becomes problematic in the setting of dementia because dementia progression equals a loss of self-determination.

(16:32) Rachel Coady 

And I think in our experience, in my family, my mom's journey included her seeing that loss, experiencing that loss and not understanding why she was having it. I know some dementias, there's less self -awareness for the loss, but part of the weight of being the support team to her was to try to witness, sit with her, and help her understand why the loss was happening, that the loss might continue.

(16:58) Shoshawna Rainwater 

Yes.

(16:58) Rachel Coady 

And that we were all kind of in it together, but that was going to be a part of what she was experiencing. And that was a heavy thing to sit with.

(17:06) Shoshawna Rainwater 

Yeah, I would say that's one of the hardest things for families when I hear them describe the many different things that are very hard about this disease. Sitting with a loved one who has

any kind of awareness of their own brain changing can be a very excruciating thing. And I really appreciate that you and your family showed up in a role of witnessing that and trying to be, I’m sure, as reassuring as possible with also the ability to sit and hold that with your mom.

(17:42) Rachel Coady 

Yeah, I think just adding on to your information about the challenges is, you know, maybe unlike other diseases, there's not a course that you can say we're going to chart or a process that we're going to go through a treatment plan that might help and because everybody's experience with dementia is different, we couldn't promise what was ahead. 

(18:05) Shoshawna Rainwater 

Uh-huh

(18:05) Rachel Coady 

So, I do think that adds to the, and not that you can know what other really challenging diseases, but there's more information for some of them than others. And so, I think that was part of what we all went through, was kind of surrendering to the unknown and committing to being together in it and trying to figure out, exactly like you said, how to provide reassurance, respect dignity to her as she tried to understand the losses that she was experiencing.

(18:33)  Shoshawna Rainwater 

Yeah, and our own ability to tolerate ambiguity and letting go of control is a huge part of what we learn as caregivers in this disease. 

(18:46) Rachel Coady 

Yeah.

(18:47)  Shoshawna Rainwater And for some of us, that is really challenging. Well, I would say for most humans, it is challenging.

(18:55) Rachel Coady 

Yeah, I don't think surrendering to things being out of control is not a good feeling. 

(18:56) Shoshawna Rainwater 

No, no. So, as we're thinking about this journey of dementia and how we might prepare for it, it's important to take seriously from the very beginning of the journey that dementia is a progressive, serious, and eventually fatal illness that impacts and changes nearly everything about the relationship. And in order to survive this relationship somewhat intact, it helps us to have a coherent plan for caring for the person with dementia. And I would say it's just as important to have a plan when our loved one has dementia as it would be if your loved one had a diagnosis of any other serious illness like cancer or heart disease. 

And one of the most important things that we can begin to do is to prioritize our own self-care and see it not as selfishness, but as self-preservation. Because as we'll hear in the next episode, so much of the wellbeing of the person living with dementia and the caregiver really rests on the shoulders of the caregiver. It's one of the kind of fundamental challenges and unfairnesses about the disease. So, thinking about caring for self not as selfish, but as a way to preserve self in the role. Rachel, I'm wondering if you could share some thoughts and experiences here with us, given your work as a life coach?

(20:38) Rachel Coady 

Yeah, I think about a year into my mom's journey with this disease, I felt like I was going to need other tools. I was fortunate to feel like I had community and family support, but for my own well -being, mental health, and kind of to be able to sustain the marathon, I really needed to look for and get clear on some other pieces of support for myself. And our work together greatly helped me with that. 

But I think at the beginning of the journey, wherever your beginning point is, it's good to take stock of how this experience might impact your life when you're playing the role of caregiver. And when someone gets the diagnosis, it can really impact all the areas of the caregiver/caretaker’s ecosystem. It can impact your work, can impact your relationships, your social life, your friendships, your family connections. It can really impact finances, can impact your daily routines, your calendar, your activities, and that's a really big adjustment. That's a whole world adjustment. And so, I believe--and I practice this in coaching--thinking ahead and doing proactive things to feel prepared can really help your own journey with managing stress and feeling this lack of control that we have. It helps our bodies and our brains to feel like there's a bit of a plan. 

And so, what we're hoping to prepare and offer with this podcast is tools and assets that you can use as the listener to help support yourself, to get the help you need and to guide some of your work in this journey.   So, on our site, HopeFloatsPodcast.com, you'll find a tool today that can help you take stock of what you might want to think through with the initial impact of a dementia diagnosis. And to be honest, if you think that you're starting the journey of dementia without an official diagnosis, this is good work and good tools to kind of put to play already. 

But through Hope Floats, we'll look for ways to proactively look for yourself and your life as well as your loved ones. So, for now, you can go to this site and we have a tool that can help you really do kind of an analysis of the parts of your life that will be touched or impacted potentially by this disease and some things to help you prepare those people, those circles around you for what's ahead. 

(23:05) Shoshawna Rainwater 

Today we talked a lot about the general overview of the different types of dementia and this disease. On our next episode, we'll be talking about the invisible second patient, the caregiver. We'll discuss an overview of what that role can look like and ways to feel supported when you're on this journey.

(23:24) Rachel Coady 

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. 

(23:38) Shoshawna Rainwater  

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. 

(23:52) Rachel Coady  

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