Nearing the End: Late-Stage Dementia

On this episode of Hope Floats, Shoshawna and Rachel welcome their first guest- Dr. Linda DeSitter. Dr. DeSitter is a double-board certified hospice and palliative care physician practicing in Portland, Oregon. Today, they discuss end-stage dementia and the unique features that accompany it. They also talk about support for caregivers in some of the complex decisions that come with end-of-life care. They also discuss hospice and how that program can support families and people nearing the end of their dementia journey.

Transcript

Rachel Coady  00:04

Welcome to Hope Floats, a podcast for people navigating the challenges of caring for a person with dementia. I'm Rachel Coady, a professional life coach and daughter of a person who had dementia.

Shoshawna Rainwater  00:16

And I'm Shoshawna Rainwater, a licensed clinical social worker and consultant in Portland, Oregon, supporting people who are caring for a person with dementia. And I too am the caregiver for a person who lives with dementia. 

On today’s episode of Hope Floats, I interview a longtime friend and colleague, Dr. Linda De Sitter.  Linda is a double-board certified hospice and palliative care physician practicing in Portland, Oregon.  She also holds a Master’s in Public Health and uses her skills to advocate for quality palliative care for people who are without access to services.  Linda was also the daughter and caregiver for father who had dementia.  

I’ve known Linda for over a decade and worked alongside her as we consulted with families of people living with serious illnesses.  Linda has a passion and skill for helping people understand their loved one/family member’s particular disease journey and to be as prepared as possible for the future.  When I knew we would be discussing end-stage dementia on this podcast, I immediately thought of Linda as the person who could connect with our listeners about the disease of dementia and what we need to know about this unique and complex stage of the disease.   

Shoshawna Rainwater  01:31

Hi, Linda, so glad you're here today. Thanks for being here.

Linda De Sitter  01:34

It's my pleasure. Shoshawna, I'm really excited to be here. 

Shoshawna Rainwater  01:38

So Linda, Rachel and I have spent the last two episodes reviewing early-stage dementia and then also moderate-stage dementia for our listeners. A   nd each of those stages have such unique features that can be really difficult and challenging for everybody involved. End-stage dementia also has its own unique features that are different from both early-stage and mid-stage. And we're wondering if you can help our listeners understand some of these features of end-stage. What do we typically see when someone is leaving that mid- or moderate stage of dementia and entering into the latter parts of the disease experience?

Linda De Sitter  02:24

Yeah, that's a great question, Shoshawna. So typically, the transition time is when people are pretty much incontinent, most of the time, in both bladder and bowel, and they're starting to lose their speech. So they can talk with one or two words they might use a what I call “a reflex sentence,” which is just like, “Yes, I'm fine,” or something like that that they've said, you know, a million times in their lives, but aren't really registering with a thought as they say that sentence. 

The other thing that we see with people with end-stage dementia or late-stage dementia is the nerves that go to their body are not working anymore, and they're starting to move less. Eventually, they get to the point where they can't even sit up because their trunk is really weak.  Also, people start losing weight and sleeping most of the day.

Shoshawna Rainwater  03:25

For our listeners, Linda, when you say “trunk,” help the average person know, what does medicine mean by “trunk”?

Linda De Sitter  03:30

Oh, great question. Thank you for calling me out on the medical terminology. It means that your stomach and your back can't hold your body straight up in a sitting position, and you basically slump over.

Shoshawna Rainwater  03:47

So in end stage disease, we're losing the ability to sort of hold ourselves upright, using the middle part of our body to kind of navigate the limbs and move the limbs and things like that. And even the middle part of the body then kind of doesn't have the strength to sit upright, okay? So folks would be spending more time than I would imagine either in bed or in a chair.

Linda De Sitter  04:11

Yeah. Most people at this point are pretty much bed-bound, unless we're having two people basically lift them into a recliner. So people are pretty much bed-bound and are also, along with losing their speech, they're losing their ability to swallow well; so all of the nerves in your body are starting to be affected.

Shoshawna Rainwater  04:36

And Linda, the reason that all the nerves are being affected is because the brain is  what we call, kind of the command center of the body, right? So what's happening in our brain has impact on the rest of everything else that goes on in our bodies. 

Linda De Sitter  04:54 

Yeah, that's absolutely correct, Shoshawna. Our brain is the command center. And when a person loses brain function, whatever part of their brain was the control center for whatever it was, is gone. Take swallowing, for example. Swallowing requires multiple nerves–30 nerves or more– and all of those nerves have to be coordinated. And you can imagine that if the brain is not coordinating all of those nerves, you're not going to swallow correctly; and that's actually a huge problem in late stage dementia.

Shoshawna Rainwater  05:37

Well, let's unpack that a little bit more, because you and I worked together for probably, what? nearly a decade where I got to sit in consultation with you, helping families understand just how important this piece is, about the swallowing mechanism, and when that starts to be impacted by end-stage dementia, it's a really big deal. And I think it was always eye opening for families and for people caring for a person with dementia to hear this, it was as if we were hearing it for the first time–to hear a physician talk about this. 

Can you break that down for us a little bit more?  And why is swallowing such an important mechanism in our bodies? and what happens when that starts to get impacted?

Linda De Sitter  06:24

Swallowing is actually a complex process. It requires coordination, and when we don't swallow properly, whatever is in our mouth–be it water, food, saliva–can go down the wrong pipe, we call it, or into our lungs. And what we see in patients with dementia is that we see them start to cough after every bite or cough after several bites; and then we see them cough after every bite, and then we see them starting to choke. And it progressively gets worse because the coordination of all of those muscles are getting worse and worse and more and more is going down into the lungs instead of into the stomach.

Shoshawna Rainwater  07:18

It sounds like it's the wrong place in our bodies for food and fluids to go. What happens in our bodies if things are going into our lungs and not into our stomachs? Why is that a big deal? 

Linda De Sitter  07:29

So it basically causes our lungs to get pneumonia. Patients get what's called “aspiration pneumonia.” And the saliva or the water or whatever, it basically burns the lungs and sets up an infection. And, it's how actually, most people, or a large percentage of people, die in dementia patients, because even if we give them antibiotics and they recover, they've lost a big chunk of function that they had prior to this major event.

Shoshawna Rainwater  08:210

I know it seems quite common for people in end-stage dementia to be in a cycle of getting a pneumonia, being treated with antibiotics, recovering some function, but certainly not getting back to their previous baseline or level of function. And then that cycle continues and continues. I know one of the first questions families have asked us when we were in consultation, Linda, with them about okay, “well, what can we do about this?” A lot of people want to know, is a feeding tube going to help with this issue? What are your thoughts on feeding tubes in folks with advanced-stage dementia?

Linda De Sitter  08:55

Yeah, so people with advanced dementia, that's a very common question for our families and caregivers. It's such a cultural thing to feed our loved ones.

Shoshawna Rainwater  09:06

Yeah, it's how we care for people, right? 

Linda De Sitter  09:09

Yeah. So a feeding tube basically doesn't fix the problem, and the reason is–there are a couple of reasons. One is that the food, the feeding in the stomach that comes through the tube actually tends to regurgitate up your esophagus–the tube that goes from your stomach up to your mouth–and once it's in your mouth again, your swallowing is not coordinated; part of it ends up in your lungs. The other reason is, even if we can prevent food from regurgitating up the esophagus, we end up having saliva in our mouths that is still going down the wrong tube. 

So they've actually done studies where they've shown that people do not live longer with advanced dementia with a feeding tube. In fact, some of the studies have shown that they don't live longer, but the person with dementia actually appears to have a worse quality of life because they have a tube coming out of them, and they tend to try to pull it out because they don't know why it's there.

Shoshawna Rainwater  10:27

It’s considered agitating to them.   

Linda De Sitter  10:30

It's very agitating, and they've lost the ability to understand why it's there; so no amount of explaining or reminding will tell them to stop pulling at the tube. And sometimes, if people insist upon having a feeding tube, we actually have to restrain people, which then makes the person with dementia extremely agitated and frightened, which decreases their quality of life. So every medical association that deals with older adults has a strong recommendation that you do not use a feeding tube  in persons with advanced dementia.

Shoshawna Rainwater  11:16

And I think I've heard you say the American Geriatric Society has actually created, like a positional paper, or come out with their their position about this, where they they really feel like it is not enhancing either longevity or quality for the person to place a feeding tube in them–in the context of dementia; there are other medical conditions in which a tube feeding might help and have benefit, but we're not talking about that population today here on this podcast.

Linda De Sitter  11:46

That's correct and the American Geriatric Society was the first one to come out with that recommendation, but many others have followed suit. The American Academy of Family Practice and many others have agreed with this statement and confirmed that it actually makes people's quality of life worse. 

Shoshawna Rainwater  12:07

Okay, so if we're not going to be placing a tube into our person with dementia–if that's not what's best practice or helpful–how do we continue to try to meet their nutritional needs?

Linda De Sitter  12:24

The recommendation is what we call “hand feeding,” which means allowing the person to eat with their hands, giving them food that they can manipulate with their hands, because one of the things they lose is the ability to manipulate utensils. So as long as they can use their hands, we encourage that.   Once they can no longer even use their hands to feed. It's possible to spoon feed. What we see at that point is it taking longer and longer to get a smaller and smaller portion of food into someone. 

So you might see that someone eats a cup of food and it takes 45 minutes now; in three months, it might be a quarter cup of food and it takes 75 minutes to get it in, because they have to be reminded to swallow. The caregiver puts the spoonful into their mouth, and the patient just keeps it in their mouth. They've forgotten, actually, that food in your mouth requires you to swallow.

Shoshawna Rainwater  13:37

That's very hard. I imagine this is really hard for caregivers to bear witness to and to be dealing with, especially because we have such a strong association with food being how we sustain and comfort humans, that's really hard. So I'm imagining, too, that with less food being taken in, people might also be losing weight. Or what do we see in terms of besides infections, what else are we seeing going on in the bodies of people in this end-stage? 

Linda De Sitter  14:10

Yes, we see weight loss. We actually see a significant amount of weight loss over time. So this last stage of dementia actually takes longer than most people think it does. It's on average, about two-to- three years that people end up getting progressively worse; they need 24-hour care. And over that time, we will see people lose 50 pounds, 25 pounds, at least. People will lose 50% of their body weight if they started out a little bit on the heavy side. So people change significantly. 

Shoshawna Rainwater  14:55

Boy, I'm just imagining being a listener, Linda, and hearing for the first time, the long tail of the end-stage experience, and to hear that it's not unusual for it to be a two-to-three year experience that's a long time to have a need for 24-hour-a-day, 7-day-a-week care. And I don't think that that's talked about or well known in this disease landscape. And we acknowledge for our listeners that is likely hard news to hear, and at the same time important for us to be educated and to know about, because I'm imagining two-to- three years of 24/7 caregiving requires a lot from families and the care team.

Linda De Sitter  15:46

Yes, it does, Shoshawna. And you know, caregivers are exhausted, and the only thing that interrupts that two-to-three years is if there's what we call a “sudden event.” A sudden event is more likely with different kinds of dementia, like vascular dementia. As you know, my father died from vascular dementia a couple years ago. He was just entering the advanced stage when he got a massive stroke and basically died within a week.  Without a major event like that, people with Alzheimer's type of dementia–which is the most common one–we can expect a good two years of needing that intense caregiving that you just mentioned

Shoshawna Rainwater  16:42

So your dad had vascular dementia, which for our listeners, help us understand what is vascular dementia? We briefly talked about subtypes in one of our early episodes. But could you explain why vascular what it is, and why it's different than Alzheimer's? 

Linda De Sitter  16:59

Yes, happy to. Vascular dementia is affecting little spots in the brain because you're getting little microscopic strokes. And so what part of the microscopic brain dies, you lose that, but there's still other brain tissue next to it that is functioning more or less. So a typical vascular dementia patient has losses in the middle stage you were talking about last time, of more of a stair step; they'll plateau, and then all of a sudden have a step down, and then plateau, and all of a sudden a step down. It tends to be a four year process, kind of like Alzheimer's, unless there is a major event; but it does look a little different. And at the end stage–at the advanced stage–it is more likely to have a major stroke, which shortens that what you call a tail, we all call “a tail” of the disease, that long, two-to-three year process that advanced dementia usually takes.

Shoshawna Rainwater  18:13

That's helpful, and to get even more simplified on this, vascular has to do with the heart, right?  

Linda De Sitter  18:21

Vascular has to do with the heart and arteries, so the circulatory system, so the heart, the veins, the arteries. And the arteries in your brain are getting hardened, just like you can get hardened, hardening of the arteries in your heart. And they shut down. They basically get little plaques and that little tiny branch of an artery, all the brain tissue that it fed dies. So I remember telling my family as we were watching my father take these sudden drops, it's like his brain looks like Swiss cheese, that there are little pieces that are lost, and other parts that are functioning. 

Music transition

Shoshawna Rainwater  19:18

Linda, I've heard neurologists say the more we're learning about the brain, the more we're realizing it is  unusual that a person might just have one specific subtype or type of dementia and there's often a mix going on; and that one of the most common things we're seeing is Alzheimer's plus vascular which they have explained makes sense, because in America, the number one chronic illness that we deal with is heart related and circulatory-related disease. 

And so I'm imagining that some of our folks who've been diagnosed with Alzheimer's, as they grow into older adulthood and further disease progression, they might also have some co-occurring vascular impacts.    And I think what you're saying is important, because the vascular type of dementia, if it results sometimes in a sudden event, meaning, like some sort of massive cardiac related or circulatory related event, that is, in some views, maybe what we would call an exit ramp off of the dementia experience where we know that it will be a longer, you know, two-to-three year, full-dependence experience for people. A nd I know for my parent, when she was actually in a well brain, she would say, “I would rather die of a heart related issue than I would wanting to live into a full end-stage dementia experience.” 

And so I think that that becomes relevant as we're thinking about what do we in terms of intervening interventions for a massive stroke, it almost feels like it's something that we would want to check our Goals of Care and say, “is this, you know, an opportunity for this person to not have to live into those end stages? If that is something that they would not have wanted for themselves?” Does that makes sense what I'm saying?

 Linda De Sitter  21:30

Perfect sense Shoshawna. And in fact, my family had already had several Goals of Care conversations around this very scenario, that if Dad got a major stroke or a major heart attack, he also had a valve problem. So there were a lot of cardiac exit ramps, possibilities for him that we were going to call hospice immediately–not call the ambulance, but call hospice immediately–and let him die in peace at home.  And my father, when he was still-  his brain was functioning normally, a lso said, just like your mother, that he hoped to go quickly, just like his mother had. And so by calling hospice when he had a major stroke, we were actually honoring his wishes.

Shoshawna Rainwater  22:22

This is a perfect segue, I think, into this part of the conversation that we wanted to talk with you about hospice and what it is and how it can support people in  end-stage dementia. We have not done an episode yet on hospice, but it's coming, because it's such an important piece of the care puzzle for people. But walk us through a little bit about– you're a hospice physician. You have been for many years, right? throughout your career, and so it's a well-worn pathway for you, you know that landscape. Help our listeners understand a little bit more about hospice and why we might want to consider it for our loved one, who is in end-stage dementia. 

Linda De Sitter  23:10

So hospice is wonderful. I don't say that just because I work in hospice, but having experienced hospice with my grandmother and my father and some close friends, hospice is wonderful. Hospice is an interdisciplinary team of nurses and social workers, chaplains, health aides, nurse practitioners, doctors and, whatever the patient's needs are, we work together with the family, the caregivers,    to try to make it the best experience possible, maintain quality of life as much as possible for both the person with dementia as well as the caregivers and family, and maximize quality of life until the end. We don't make the end come faster. We just allow nature to take its course.

Shoshawna Rainwater  24:04

I think that's a really important piece, because we met with many families over the years who were wildly upset by the suggestion that their person not only might qualify for hospice, and we'll talk about that in a second, ‘cause I want to hear your thoughts about the qualification criteria, but also the fact that we would suggest that it would be something that would support them. And so many families, I remember hearing them say, “you're asking us to give up on our person.” 

Do you want to talk a little bit about that? Why we see it differently? Why we're hospice advocates, why we think it's a good thing.

Linda De Sitter  24:43

First of all, as a hospice physician, one of my jobs is to certify from the Medicare viewpoint that a person still qualifies. And so I review cases every two-to-three months, and I have some patients with dementia that have been on hospice for over a year, and so having had that experience as a provider, I know very well that hospice does not shorten people's lives.

Shoshawna Rainwater  25:18

Mm-hmm.  And in fact, can actually help people live longer. 

Linda De Sitter  25:21

Yeah, so hospice, in some diagnoses like heart failure, actually helps people live longer. In dementia it hasn't been proven longer or shorter; there's no difference. But what it does do is it supports the caregiver and family in taking care of the loved one, and it also helps the person with dementia live the best quality of life possible, as we let nature take its course.  Sometimes that’s, you know, treating an infection. Sometimes that’s getting a better bed, that a lot that goes up and down and allows them to see the TV better. Sometimes that’s giving them medicines so that they aren't having scary hallucinations and seeing things that aren't there. 

And sometimes it's really doing a life review or helping them come to peace with something that happened in their life; like in veterans, when they're having flashbacks that we don't understand, they can't communicate. But there's both medicines and non-medicine things that we can do to actually help that patient feel at peace.

Shoshawna Rainwater  26:41

I feel like once people have a better understanding of hospice, it becomes more of a perspective of like, “oh, that sounds great. Let's go. I would love my person to be on it.” And then there's also the criteria that someone has to be within what medical providers believe to be the last six months of life. So, you know, it's this dance between wanting people to get on hospice as soon as they're eligible, so that they can benefit from all of the robust services, but also the reality that, in this country, we don't offer that kind of support until somebody's in the last six months of life. 

And so I think my frustration over the years has been that we have people who could benefit from hospice, but we are tied to the criteria of the six month or less qualification; and that can be really difficult, because arguably, most people entering into the last two-or- three years of the dementia experience and their families could really benefit from the support.

Linda De Sitter  27:46

I agree, Shoshawna. I actually tried to get my dad onto hospice three months before he died  and he didn't quite qualify. And then, of course, when he had his major stroke, he qualified, but he was only on hospice for five days. Hospice was great, but I think my mother could have definitely used the hospice services for those three months, but he wasn't quite, quite sick enough to meet hospice criteria.

Shoshawna Rainwater  28:17

Yeah, that's such a hard thing; getting the timing of enrollment just right, is challenging, isn't it? because bodies are unpredictable. 

Linda De Sitter  28:26

The main thing with hospice eligibility is that people are showing signs of decline, even within that advanced perspective, advanced dementia. So, for instance, if someone is in advanced dementia but has only lost one or two pounds, then they probably have a couple of more years. But if they've lost 15 pounds in the last two-or-three months, then we know that they're approaching the end.

Shoshawna Rainwater  29:03 

Doesn't hospice have like a 10% of someone's body weight lost over a certain time?

Linda De Sitter  29:08

Loss of body weight is one of the criteria that will get dementia patient into hospice. Another is repeated infections. So if you've had a couple of infections in the last six months, that will help get you admitted to hospice. Also, if you've been to the hospital,  that is often with something so serious you had to go to the hospital that will sometimes get you into hospice.  So you have to already be incontinent and having trouble walking and that kind of thing. But if, on top of that, you're losing weight, you're having repeated infections, or you're ending up in the hospital back and forth, we can usually get people on to hospice. 

Also, if people have some other problem, like you said, a co-occurring disease, like they have really bad heart conditions, then we can often combine both the heart condition and the dementia to make a case for getting them on the hospice. So my recommendation to people is like we did ask for a hospice evaluation early on, and at least you're registered in the hospice data bank i f they say, “not quite ready;” If you've been to the hospital recently, and they are in advanced dementia stage, I would get hospice to come do what's called an “informational visit,” which is explaining the services and telling you if the person qualifies for hospice or not.

Shoshawna Rainwater  30:59

I think this is a good place to also note that hospice is not a place people go. It's a system of support that comes to the person wherever they're residing. 

Linda De Sitter  31:11

That's correct. And so we visit you and wherever you're at–so if you're in a nursing home, we'll visit you there. If you're at your house, we’ ll visit you there; if you're in a little cabin up on top of the mountain, we'll visit you there. We go to where the person and their caregivers are at.

And also, we have a number of patients. So one of the things that, if caregivers are super, super exhausted, the social worker will work with the family about finding a place for the person to be moved to. And so hospice will help. We don't pay for it, but hospice will help find a nice place to live where the family can visit.  

Music transition

Shoshawna Rainwater  32:08

So let's talk a little bit about what do we see in caregivers?  We've talked a lot Linda with our listeners around the length of this experience as being really uniquely hard. It is typically a several year experience on average, and sometimes much longer than that. 

In episode 12, when we talk about mid-stage, we talked about what a challenging stage that is, because people have generally retained physical abilities, yet a growing inability to gauge their own safety and to make good decisions that don't get themselves into danger or trouble, and also the co-occurring what we called the neuropsychiatric symptoms and behavior.  So caregivers have endured years of that.  Now they find themselves coming into the end stage, and I'm imagining cumulative exhaustion. Is that what you see, too?

Linda De Sitter  33:11

Oh, completely.  Our caregivers are heroes, and they are human, and they just often can't do it anymore. This last stage of dementia requires an incredible amount of physical effort. You know, the person is usually bed-bound. You have to turn them over in bed, you have to change their diapers. You have to do all this work that most families just don't have the capacity to do as much as they love their person and wish they could. 

So caregivers need to take care of themselves. If that person now can't talk or communicate well, but if you went back 20 years, most of those people would say, “I don't want taking care of me to kill my spouse or kill my child.” 

Shoshawna Rainwater  34:10

I think Linda, you know, some listeners might hear that and feel like, “ Whoa, that's … wow!  That's really harsh.” And I will say I'm hearing more and more people who study caregiver stress talk about it in terms of how lethal it is for caregivers.   And we don't say that to scare people. I think we're saying it because we need people to be aware it's a really big deal. So we need to be thinking about what is our plan right for when we get to this stage of end-stage, what is our plan to make sure we've got support in place? What are your thoughts?

Linda De Sitter  34:52

I agree Shoshawna and from a medical perspective, they've done studies on cortisol levels, etc, that show that caregivers are suffering, even if they don't realize it. I was in the experience of helping take care of my dad for a whole five days with five sisters helping, and we were exhausted at the end. And I agree, I can't imagine somebody doing this for years. I just can't.

Shoshawna Rainwater  35:26

Yeah, I think from a practical standpoint, if this is landing on the ears of our listeners and they're feeling shocked or upset by this, I think one of the things that we need to be practically thinking about is, what is the next setting that our person is going to receive care in?  And I think that's where caregivers can put some of their valuable and limited time and energy is figuring out Plan B; where is my person going to be for this last stage? and how are we going to afford it?--which is its own separate conversation.  

In America, caregiving is not covered, in general. It's not covered even in the hospice benefit, even though hospice has so many supports and volunteer support. But that 24/7, my relative, who died recently was on hospice, had a good hospice experience, but the caregiving piece is not covered; that is a truth here in America that I don't think people are aware of until they get to this stage and they're like, “What do you mean? How are we supposed to do this?”

Linda De Sitter  36:35

And unfortunately, I wish it were different. 

Shoshawna Rainwater  36:28

Yes.

 Linda De Sitter  36:39

The caregiving issue is huge and expensive and usually necessary, which is why I encourage families to think about it ahead of time, just like you're saying, but also consult a specialist of some sort who understands what the best place would be. I am a big believer in making the move and making it the only move. And to do that, it's really good to check with your PCP or check with a social worker about what is the most appropriate place, and can they stay there through the end of their life? 

Shoshawna Rainwater  37:25

Yes. I think that's key, right? And a question we should be asking every facility that we're vetting, you know, how often do people have to move to a higher level of care? And what are your policies and procedures around helping people remain in place? Facilities will tell us a lot of things that we want to hear, and I think getting a second set of information from other professionals who are not part of the living situation is important. They might be able to be a bit more objective, in my opinion, or at least maybe a little bit more realistic about about what's coming. I think too, Linda, this is where I feel it's so important and part of why I do this work is families have to have better information about the disease experience. 

   Linda De Sitter  38:16

This is critical.  And if I could wish for anything for your listeners, it would be to hear this really hard news of what it's going to look like, and then plan ahead. 

Shoshawna Rainwater  38:34

Yeah,  agree. Thank you. Thank you for being courageous and speaking that truth. It's part of why, a lot of why we developed this podcast is we have to start a different dialog around this disease and better support the people who are experiencing brain changes, but also the people who are caring about them. We need to do better.

Linda De Sitter  39:00

I agree.

Shoshawna Rainwater  39:01

And I think it's part of why Rachel and I talk about this idea of nobody can really do this alone and come out in one piece. And so this idea of building a team is something that's a drum that we are beating a lot. And I also make space for the fact that in this individualistic, self-driven society, a lot of us don't actually have robust community teams. And there are good resources out there, including hospice, for this end-stage experience. And I know that hospice is not available for the entire end-stage experience, but boy, I would want my person with brain changes to be enrolled in hospice at their earliest opportunity, not just because it's good for them, but because it would be good for me as the caregiver.

Linda De Sitter  40:11

I completely agree.

Shoshawna Rainwater  39:57

Well, Linda, I can't thank you enough for your time and your honesty and all the strong work that you do to help care for people who are living with serious and progressive illness. It's a joy to have you on this show and just thank you so much for sharing your wisdom with us today.

Linda De Sitter  40:16

Thank you so much for inviting me. This was really fun. 

Shoshawna Rainwater  40:19

On today's episode with our guest, Dr. Linda De Sitter, we talked about end-stage dementia and the unique features that accompany it, and we also talked about support for caregivers. We discussed hospice and how that program can be a support to families and people nearing the end of their dementia journey.

Rachel Coady  40:37

We'll be back in a few weeks with another Hope Floats episode. We're excited to cover more topics on the dementia journey and have more guests who will join us. Thank you for all that you are doing and thanks for listening.

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

Shoshawna Rainwater  

You’ll find us at our website hopefloatspodcast.com.  When you’re there, you can learn more about the work individually with Rachel or Shoshawna for support with your specific circumstances or situation. That’s also where we’ll share more tools, resources, and libraries that can help people on this journey.

Rachel Coady  41:27

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