The Journey with Dementia: The Impact of Palliative Medicine and Hospice Care (Podcast Transcript)

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Life, Death and What Matters In Between Podcast: The Journey with Dementia: The Impact of Palliative Medicine and Hospice CareThe number of people diagnosed with dementia has progressively grown in recent decades. According to some estimates, around 5.8 million people in the United States suffer from dementia-related diseases, with 5.6 million older than age 65 being at risk. Patients with dementia-related diseases are not like cancer patients or patients with other chronic diseases like diabetes, but families suffer physically and emotionally.

In this podcast, Perry Limes, the Director of Strategic Partnerships at Hospice of the Chesapeake interviews Eric Bush, MD, the Chief Medical Officer at Hospice of the Chesapeake and Chesapeake Supportive Care and talks about dementia. They discuss what is the medical definition of dementia and how it is related to Alzheimer’s.

They also discuss who is more at risk, what the symptoms are, and what the patient and family should do if they are diagnosed. They talk about the importance of palliative care, also known as supportive care, for those with dementia, as well as the advantages of establishing a dementia continuum of care program.

Finally, Dr. Bush gives the audience some takeaways in case anyone in the audience has a family member who has been diagnosed with dementia or knows someone who has.

Click here to listen to Episode 1 of Season 1 of  “Life, Death and What Matters In Between”

Transcript

Perry: Good afternoon and welcome to Life, Death, and what matters in between. I’m your host, Perry Limes. And today I have with me my esteemed colleague, Dr. Eric Busch, chief medical officer for Hospice of the Chesapeake. Thank you so much, Dr. Push, for your time. And let’s get started. First of all, Dr. Bush, I’d like you to tell us a little bit about your background and tell the audience all about you.

Eric: Sure. Thanks so much, Perry. Appreciate it. Appreciate the opportunity to be here and educate. Always a good thing. So, my health care career started back in 1988. So a little over 30-plus years ago as a medic in the Army Reserve, during my time in service, I was able to get my LPN, then decided to go to pharmacy school. Her little twenties, she did her MBA, got lost in the pharmaceutical industry, went back to med school at 30, and spent a lot of time working at Local Regional Cancer Institute in Buffalo. Roselle Park is really what got me back into it and completed my med school. Ended up here in the Maryland area for a fellowship at NIH. Maryland has been great to me. Met what? I met my wife in medical school, as I said, you know, then she was the boss, still the boss now. And I am boarded in internal medicine, hospice and palliative medicine, addiction medicine. I’ve been doing hospice and palliative in the last 15 years, seeing tens of thousands of patients at this point and being very blessed to have the opportunity to work for a series of not-for-profit organizations, many community-based, some hospitals, some not. And I’ve been here with hospice, the Chesapeake, Chesapeake Supportive Care as the chief medical officer for the last approximately six years. Great organization, great heart, great mission. And that’s me in a nutshell.

Perry: This is awesome and thanks to you for your service. Our thanks to fellow Army vets. Exactly.

Eric: Fellow Army guys. Absolutely to me.

Perry: Fate. So what we would like to delve into is the journey with dementia. As we know, we’re seeing more and more of a rise in dementia cases particularly on the end of the life spectrum, I think, as medicine starts to dove into it, whereas hospice is primarily been focused around cancer and maybe cardiovascular disease, dementia is probably, I wouldn’t say a new diagnosis, but something that hasn’t been looked at as the forefront. So before we get started with the audience, could you tell us what is dementia?

Eric: Sure. So dementia is a general term for loss of memory, language, problem-solving, and other thinking abilities that are severe enough to enter daily life. Often when people think of dementia, they think of Alzheimer’s dementia, which is the most common cause of dementia also.

Perry: And many times we hear about dementia. We think of an older person kind of sputtering along and forgetting certain things. Who is most at risk of developing this particular dementia diagnosis?

Eric: Yes, sure. Great question. That’s a little more complicated. There are some genetic links with certain types of dementia. There are five different types of dementia. There’s Alzheimer’s disease, which again is the most commonly known and most common type, the consequence of an abnormal shrinkage of the brain. There’s also dementia with Lewy bodies and vascular dementia. And so vascular dementia, for example, is one where you have a lot of times different progressive medical issues that affect the body’s cardiovascular system. So say you have some heart disease, hypertension, diabetes, kidney disease, peripheral arterial disease, or peripheral vascular disease. So those co-morbidities would exacerbate or accelerate the progression of dementia. There’s also frontotemporal dementia as well as mixed dementia. And these are things that I’ve seen. And so there are things that can accelerate, you know, or instigate the progression of these diseases. And so trying to live a healthy life, healthy lifestyle, healthy diet, avoid smoking, tobacco, cigarettes, alcohol, things that. Nature. Those are things that, in addition to diet and exercise, can help prevent to some degree, these damages.

Perry: No, I truly appreciate that overview, because I think many times individuals think of dementia as just more of a mental disease, that it’s not affecting the total body. And it seems like the total body is still obviously linked to the brain, but there are some other issues with physical debilitation. Would you agree with that?

Eric: Oh. And so, you know, one of the statistics to keep in mind is that the average patient, after being diagnosed with dementia has a life expectancy of 48 years, now can be longer. Some patients with dementia may live up to 20. But again, you have to remember that average of 4 to 8. It is one of those disease processes where I’ve seen great caregiving can help amplify or help maintain quality as well as quantity of life. But I want to pick up on something you said earlier with regards to, you know, cancer, dementia and non-cancer diseases are different from cancer. And so I think of something like cancer as a catastrophic disease. Right. It’s a catastrophic loss often, unfortunately, because there are some out there like pancreatic where there are no good screening tools. And so patients tend to get diagnosed late. Alternatively, sometimes with dementia, you see patients get diagnosed early because there are people out there who have been very educated privately and can kind of hide some of their symptoms, or they have a spouse who still has, you know, full capacity and can kind of hide or cover for them. Their symptoms are they have memory loss and they tend to have physical decline. But that being said, whether you have a catastrophic illness, cancer, or a chronic progressive illness like dementia, heart failure, COPD, or kidney disease, they’re both fatal just at different time frames. And so, again, how do we as a society, especially given the silver wave that’s occurring and the large swath of patients that are coming on and the staffing challenges that we have, how do we make sure to educate people and maintain that high quality of care so that regardless of whatever illness you have, you’re able to have both the best quality as well as quantity if possible.

Perry: Oh, that’s awesome. So you talked about the progression of certain diseases. How do you see dementia or I guess in your experience, once somebody has been diagnosed, how fast do you start to see a decline? Is it a slow descent or is it something where it varies from patient to patient in terms of decline?

Eric: Yeah. So it can vary from patient to patient. Before we get more into the medical stratification, I just wanted to delve a little bit further into what makes the journey with dementia so challenging. And one of those pieces is that it can have a lot of individual twists and turns, and the different types of dementia themselves, they can have different rates of progression. I’ve had some patients with Alzheimer’s gone for years, whereas dementia with Lewy bodies, vascular or frontotemporal, tends to be more accelerated. Intra frontotemporal sometimes as well as Lewy body can have more behavioral disturbances, which are very challenging. But regardless, the practical challenges tend to be fairly universal and with challenges overall, including practical, which include safety and security, dealing with finances, and legal issues. A lot of times you see couples where I know even my wife and me, we delegate certain tasks to one another. So dealing with things like finances. And as somebody with dementia loses that, you know, quote-unquote, executive function ability to balance the checkbook, sometimes they run into financial issues which their spouse isn’t aware of. And then there’s also, in this day and age of making sure that we all can get into legal issues with regards to who can be the medical power of attorney, financial power of attorney if that hasn’t been delineated as of yet. Patients with dementia sometimes, especially what we just went through and are still coming out of with the COVID pandemic, can be isolated and get bored, which then can lead to changes in behavior such as agitation. Then there are some of the physical challenges of dementia, which include dealing with incontinence, both urinary and fecal, which each have their challenges, managing bathing and dressing, as well as other activities of daily living, such as eating, which tends to then restrict mobility both for the patient and caregiver and impacts on sleep in rest. And then there are the emotional challenges first for the patient. Again, some patients sometimes do have aggression. Some patients get paranoid or suspicious and can have hallucinations. Patients with Lewy body dementia tend to have more hallucinations at times. And part of the challenge is the medications that we use to intervene when somebody has aggression, paranoia, or suspicion. They have their own set of risks. And we know that the majority of those medications have a negative mortality benefit, that they can cause someone to die sooner. So then you look at nonpharmacologic interventions, which can be very challenging as somebody has behavior that’s escalating, or if you have, you know, a caregiver who is much more diminutive than the patient. And so this often leads to challenges for the caregiver, those providing care, they take care of themselves, but often they don’t have somebody to give them a rest and then, you know, find eventually, once the disease takes its course and the neurologic progression leads to physical progression, where the patient is no longer able to be themselves, comb their hair, put on their clothes, toilet themselves, feed themselves, and their vocabulary has diminished to a degree, and the patient isn’t even able to sit up or smile, you know, but deciding when to let go and when to bring in, you know, hospice care, hopefully for that supportive or palliative care so that there’s a lot that’s wrapped up in this. And the numbers are, you know, very, very large with regards to concern about, you know, the next 20 to 30 years in this country and that inversion of the pyramid. And how do you have enough givers both in the health care community as well as laypeople to care for likely patients? Suffer from any type of dementia.

Perry: Wow. Wow. Great information you brought up. Hospice and palliative care. Cause, you know, we are talking about kind of the end of the life spectrum. What is the role of palliative care or supportive care, as we like to call it, when in regards to dementia? And how does that affect the patients?

Eric: Sure. Great question, Perry. Super care and supportive care are appropriate. Any time after a dementia diagnosis and some tangible decline, there are some very recommendations. There’s something called the global deterioration scale. And if you look at that, some people recommend stage two, which is a little bit early, but probably if you don’t have delineated advance directives, if you don’t have a power of attorney, if there are complicated family dynamics, that would be a good time. But I think for most of the people when you get to a global deterioration scale of what we call stage four, where the patient has reduced ability to count, finds travel difficult. This includes doctor’s offices, right. Used to be able to take their grandpa to go see Dr. Smith, who is about 10 minutes away. And now, instead of taking, you know, 20 minutes to get him ready, it takes 2 hours just to figure out how to get him dressed, get him in the car. And you have a patient who can know how to manage their affairs. I think that’s a good time to at least have an initial palliative or supporter consultation because there’s so much that can be done through palliative or supportive care can be seen at your home. If there are those mobility difficulties, there is often either a physician or nurse practitioner, or a medical provider that will come see you at home to address any physical symptoms, to address the progression of the disease. But in addition to that, there is social work help as well as nursing help that can come and see triage. Again, it’s not 24 seven care, but it is an additional layer of support and layer of support that can help guide decision-making with regards to risk-benefit and again trying to figure out how you optimize that quality as well as quantity of life. Because while that has gotten better technologically, everything we do still comes down to risk versus benefit. And even the medicines that are commonly used for dementia, demand, and Aricept are best when somebody first has mild or maybe moderate dementia to some degree. Once you get to somebody with that severe degree of dementia, those medicines have more risks than benefits. So the earlier you can get these things implemented, the earlier you can get help for patients and families. So there’s not that isolation so that caregivers don’t feel isolated and end up getting burned out. Yeah, I think that’s the time when you get supportive or palliative care involved.

Perry: So with that said, and you brought up the fact about getting palliative care and possibly hospice, but the dementia patient sees their primary care physician. I’m sure they at times end up at the hospital. They may even go because of their age to a nursing home. And you hear this term or this phrase, continuum of care. Can you help the audience understand what that means and how it also relates to the hospice patient or excuse me, to the dementia care patient?

Eric: Sure. Great. Thanks, Perry. So in medicine, a continuum of care refers to the delivery of healthcare over some time. And the other piece that’s created by supportive care or palliative care. A lot of times these are delivered by organizations like ourselves that are also hospice organizations that are not profits. And so what we want is that continuum to be continuity. And so we want that provider that goes to see that patient that goes to see that family to be the one that continues to provide care. The patient gets diagnosed with, say, Alzheimer’s, or dementia. They get supportive care, and palliative care in their early stages after and again, as we talked about earlier. On average, these patients live 4 to 8 years. Let’s say this patient is going to live eight years. Let’s say two years in the patient. Start seeing palliative care. And for those first 5 to 5 and a half years, the patient is able to benefit from those interventions that supportive care can provide. Like the guidance regarding symptom management, the guidance regarding social work, and identifying resources, because as you noted, these patients often do get hospitalized. As dementia progresses, patients often do get dysphagia with age, which is difficulty swallowing. And when they develop this difficulty swallowing, they all end up with something we call aspiration pneumonia, where they get food that goes into the lung and develop subsequent infections. And again, we know that the risks of having a peg tube or feeding tube in place for these patients out, again, the risk of doing so outweigh the benefit. With regards to PEG two. So it’s not an option. So how do you modify somebody’s diet so that it’s safe, make sure that you treat somebody’s aspiration, advance appropriately, but also know when it’s time. If somebody had recurrent aspiration events and they have moderate or severe dementia, that that’s the time where you need to look and say, hey, this is a time for the hospice where we can have, you know, dad, grandpa, grandma at home and hospice come in and provide that care at home. There’s 24 seven access to care if need be. Somebody can come out in the middle of the night, watch something, troubleshoot something. Again, we know that more often than not, as time changes, as time goes on, patients will develop things like agitation that are very difficult to control. And you need health care expertise. So that’s what I feel would be, you know, most often most beneficial. And hopefully, that’s how the continuum of care could be. The continuity of care, where you have a provider that starts out seeing the patient for supportive or palliative purposes and sees them all the way through and is then able to provide treatment services thereafter for the surviving family members.

Perry: Oh, that’s awesome. I think it’s challenging sometimes when so many different individuals and caregivers touch this patient and make sure that the communication is pretty fluid between all of them. But a lot of times it gets to that endpoint. And I know the hospice word is too scary. Each word that floats around. I suspect they were good in the night, but it’s a beautiful service. And I think you touched on some of those points. Is there anything else you would like to elaborate on regards to hospice care when it comes to the dementia patient?

Eric: Yeah. So I just think it’s such all-encompassing care. With hospice care, you get the medical care to alleviate symptoms and pain and not just pain, but agitation and again, hopefully at the same provider. So some of those patients that may get paranoid or family members that, you know, have done such a phenomenal job and invested so much time and have that relationship with a provider, they’re able to give you that all the way through. But Hospice also provides counseling about the emotional and spiritual impact of the end of life, not just with social workers. But one of the things I strongly believe in is the power of chaplains. And I think when people think of chaps, they think of, you know, faith-based and very religious. And it can be that for people if they want it to be. But it’s there for spiritual support and counseling support because this is really about, you know, grieving for your loved one and grieving for yourself and Tom the boss and all that you’ve put in. And so it can be another support. The other great thing about hospice is the hospice benefit, multiple different levels of hospice care can be provided. And that’s a whole other ball of the talk unto itself, as you know. And one of the great benefits of hospice is something called respite care. And Speaker is a five-day benefit where the patient can go to a facility, either a skilled nursing facility or an organization like ours, where we have inpatient care centers. We take that patient all the time. We have several right now that I’m caring for at our inpatient care center, and it allows the family to get a much-needed break. They get those five days or if, you know, maybe things have gotten to the point where the family needs to transition their loved one to a skilled facility, they can come into our inpatient care center initially for respite and then transition to a routine level of care as placement is sought. It’s just such a huge benefit and gives caregivers, especially that who may have some degree of burnout, break a much-needed break. And then the other point about services that I can’t overemphasize, the benefit is the grief support for the family bereavement services and our Chesapeake Life Center and just the tremendous job they do, whether it’s individual or group. And those services are provided, you know, free. They’re part of our mandate from CMS and we provide those for up to 13 months for loved ones of the deceased thereafter. And again, it’s just a way to help work through those feelings with those emotions and try to process that loss and, you know, try to heal as much as that is possible.

Perry: Well, it’s so beautiful. So beautiful. Thanks. So, Dr. Bush, you know, some of them with all this great information that you’ve shared with us from your medical perspective, what would you want a person with dementia or their family to know that they may not be aware of right now?

Eric: Sure you’re not out there alone. There are a lot of resources that are out there. There is. Alzheimer’s is an association, which speaks to support palliative care, neurologic care, and hospice care. You know, the whole spectrum of care, which is www.alc.org. There is also getpalliativecare.org We all have our Chesapeakesupportivecare.org for those in our service area, which is mid-Maryland. So Anne Arundel County, Prince George’s County, Charles County, all those areas. And so there’s a lot of resources out there. You don’t have to go it alone. Do speak with your provider, whether it’s in the case of dementia, whether it’s your neurologist or your primary care physician, and ask them about supportive or palliative care. It’s a great way to start the conversation and ask early. So if you’ve received that diagnosis, you know, knowing that unfortunately on average, the life expectancy is 48 years after diagnosis. There’s nothing wrong with getting supportive of palliative care involved early, whether it’s for symptoms or guidance or social support. And it’s something we can take to visit frequency as time goes on and as the symptoms or disease progression worsens. Unfortunately, as time goes on, we can increase the intensity of care later on. But it’s just great to have our foot in the door, so to speak, and get a sense of that patient, how they are, and form that bond with the patient family so that we know we’re doing everything we can to make sure, again, to optimize both that quality and quantity of life for the patient.

Perry: Wow. With that said, what a perfect way to summarize this discussion. Dr. Bush, thank you for the invaluable information that you share with us. I am sure that you have touched many families and patients with this much, much-needed information. We would like to thank the John and Cathy Belcher Institute for your generous support of hospice and Chesapeake’s endeavors in education and community outreach as well. Thank you so much for your time today.

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