Podcast: Palliative care and hospice care on the way with dementia (2023)

The number of people suffering from dementia has increased steadily in recent decades. According to some estimates, around 5.8 million people in the United States have dementia-related diseases, with 5.6 million over the age of 65 at risk. Patients with dementia are not like cancer patients or patients with other chronic diseases like diabetes, but families suffer physically and emotionally.

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

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

Finally, Dr. Bush offered 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 been diagnosed with dementia.

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

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Perrie:Hello and welcome to life, death and everything in between. I'm your host, Perry Limes. And today I have my esteemed colleague, Dr. Eric Busch, Chief Medical Officer of the Hospice of the Chesapeake, with me. Thank you dr push, for your time. And let's begin. 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.

Erich:Secure. Thank you Perry Am grateful. Appreciate the opportunity to be here and educate yourself. Always a good thing. So my career in healthcare began in 1988. A little over 30 years ago as a medic in the Army Reserve, while on duty, I was able to get my LPN and then decided to go to pharmacy school. She earned her MBA in her early 20s, got lost in the pharmaceutical industry, returned to medical school in her 30s, and spent much of her time working at the Local Regional Cancer Institute in Buffalo. Roselle Park really got me back into it and completed my medical degree. Ended up here in the Maryland area for a fellowship at the NIH. Maryland was great for me. Hit what? I met my wife when I was studying medicine, as I said, she was the boss then and is still the boss now. And I am catered for in internal medicine, hospice and palliative medicine, addiction medicine. I have practiced hospice and palliative care for the last 15 years, have seen tens of thousands of patients to this point and am very blessed to have the opportunity to work for a number of non-profit organizations, many community based, some hospitals, some Not. And I've been here with Chesapeake Hospice, Chesapeake Supportive Care as Chief Medical Officer for the last six or so years. Great organization, great heart, great mission. And that's me in a nutshell.

Perri:That's great and thank you for your service. Our thanks go to the other army veterans. Exactly.

Erich:Army comrades. Absolutely for me.

Perri:Fate. So what we want to address is the journey with dementia. As we know we are seeing more and more cases of dementia, especially at the end of the life spectrum I think as medicine is starting to look at it while hospice is mostly focused on cancer and maybe cardiovascular disease, dementia is probably, I wouldn't say, a new diagnosis, but something that isn't a priority. So before we start with the audience, could you tell us what dementia is?

Erich:Secure. So, dementia is a general term for loss of memory, language, problem solving, and other thinking skills severe enough to intrude into daily life. When people think of dementia, they often think of Alzheimer's disease, which is also the most common cause of dementia.

Perri:And often we hear about dementia. We think of an older person who stutters like that and forgets certain things. Who is most at risk of developing this particular diagnosis of dementia?

Erich:Yes, of couse. 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 is Alzheimer's disease, which is the most well-known and common type, and results from abnormal brain shrinkage. There is also dementia with Lewy bodies and vascular dementia. For example, vascular dementia is a condition where you often have various progressive medical problems that affect the body's cardiovascular system. Suppose you have heart disease, high blood pressure, diabetes, kidney disease, peripheral artery disease, or peripheral vascular disease. These comorbidities would thus aggravate or accelerate the progression of dementia. There is also frontotemporal dementia as well as mixed dementia. And these are things I've seen. And so there are things that can accelerate or trigger the progression of these diseases. And so you try to live a healthy life, a healthy lifestyle, a healthy diet, avoid smoking, tobacco, cigarettes, alcohol, things that. Nature. These are things that, in addition to diet and exercise, can help prevent this damage to some extent.

Perri:No, I really appreciate this overview because I think a lot of people think of dementia more as a mental illness that doesn't affect the whole body. And it seems like the entire body is still obviously connected to the brain, but there are some other issues with physical debilitation. Would you agree?

Erich:Oh. You know, one of the stats to keep in mind is that the average patient, once diagnosed with dementia, has a life expectancy of 48 years, can now be longer. Some patients with dementia can live up to 20 years. But again, you need to remember the 4-8 average. It's one of those disease processes where I've seen that great caring can help enhance or maintain quality and quantity in life. But I want to pick up on something you said earlier about cancer, dementia and non-cancerous diseases that are different from cancer. And so I envision something like cancer as a catastrophic disease. Right. It's unfortunately often a catastrophic loss because there are some out there like the pancreas that don't have good screening tools. And so patients are usually diagnosed late. Alternatively, you sometimes see that patients with dementia are diagnosed early because there are people out there who are privately very educated and can somehow hide some of their symptoms, or they have a spouse who is still fully capable and can do some sort of hiding or cover for them. Their symptoms are memory loss and they are prone to physical deterioration. Whether you have a catastrophic illness, cancer, or a chronic progressive disease like dementia, heart failure, COPD, or kidney disease, both are deadly at different times. And how do we as a society, especially with the silver wave that is occurring and the large number of patients coming our way and the staffing challenges that we have, how do we ensure that we educate people and maintain this high quality? Care so that whatever your condition, you can get both the best quality and quantity when possible.

Perri:Oh that's great. So you were talking about the progression of certain diseases. How do you see dementia, or I guess from your experience once someone has been diagnosed how quickly do you see it going away? Is it a slow decline or is it something where the decline varies from patient to patient?

Erich:Yes. So it can vary from patient to patient. Before we delve more into medical stratification, I just wanted to dig a little deeper into what makes the journey with dementia so challenging. And one of those parts is that there can be a lot of individual twists and turns, and the different types of dementia themselves can have different rates of progression. I have some patients with Alzheimer's who have been gone for years, while dementia with Lewy bodies, vascular or frontotemporal, tends to come on faster. Intrafrontotemporal sometimes as well as Lewy bodies can have more behavioral problems that are very challenging. But regardless, the practical challenges tend to be fairly universal, with challenges overall, including practical ones, covering security, dealing with finance, and legal issues. You often see couples where I even know my wife and I, we delegate certain tasks to each other. So deal with things like finances. And when someone with dementia loses that, you know, executive function to balance the checkbook, they sometimes get into financial troubles their spouse doesn't know about. And then, in this day and age of making sure that we can all get into legal issues about who the medical power of attorney can be, there is financial power of attorney if that hasn't already been determined. Patients with dementia, particularly what we have just been through and are still coming out of the COVID pandemic, can be isolated and bored which can then lead to behavioral changes such as restlessness. Then there are some of the physical challenges of dementia including managing incontinence, both urinary and fecal incontinence each having their challenges, bathing and dressing, and other activities of daily living such as walking. Eating, for example, tends to limit mobility for both patient and caregiver and impact restful sleep. And then, first of all, there are the emotional challenges for the patient. Again, some patients sometimes have aggression. Some patients become paranoid or suspicious and may have hallucinations. Patients with Lewy body dementia tend to have more hallucinations at times. And part of the challenge is the drugs we use to intervene when someone is aggressive, paranoia, or suspicious. You have your own risks. And we know that most of these drugs have a negative benefit in terms of mortality, in that they can cause someone to die sooner. Then look at non-pharmacological interventions, which can be very challenging when someone has escalating behaviors or when you have a caregiver who is much smaller than the patient. And so this often creates challenges for the caregivers, the caregivers, they take care of themselves, but often they don't have anyone to give them a break and then, you know, at some point they find when the disease runs its course and the neurological Progression leads to physical progression in which the patient is no longer able to be himself, comb his hair, dress himself, go to the toilet himself, feed himself, and his vocabulary has changed diminished to some degree and the patient isn't even able to sit up or smile, you know, but to decide when to let go and when to involve hospice care, hopefully for that supportive or palliative care, so that a lot is connected with it. And the numbers are, you know, very, very big in terms of anxiety about the next 20 to 30 years in this country and this inversion of the pyramid. And how do you have enough donors, both healthcare and lay, to care for likely patients? Do you suffer from any type of dementia?

Perri:Wow. Wow. Great information you brought. hospice and palliative care. Because, you know, we're talking about some kind of end-of-life spectrum. What role does palliative care, or supportive care as we like to call it, play in dementia? And how does this affect patients?

Erich:Secure. Good question Perry. Super care and supportive care are appropriate. After a diagnosis of dementia and a noticeable improvement, there are some very good recommendations. There is such a thing as the Global Degradation Scale. And if you look at that, some people are recommending stage two, which is a bit early, but probably if you don't have detailed living wills, if you don't have power of attorney, if there are complicated family dynamics, that would be a good time. But I think it's difficult for most people to travel when they get to a global scale of deterioration from what we call level four where the patient has a diminished ability to count. That includes doctor's offices, right. They used to be able to take their grandfather to Dr. Smith which is about 10 minutes away. And now it doesn't take 20 minutes to get it ready, but 2 hours to figure out how to put it on, put it in the car. And you have a patient who knows how to run his affairs. I think this is a good time to have at least an initial palliative or supportive consultation because there is so much that can be done through palliative or supportive care that can be seen in your home. When these mobility issues exist, there is often either a doctor or nurse or medical provider who will visit you at home to treat any physical symptoms and manage the progression of the disease. But there is also social work assistance and nursing assistance that can come to triage. Again, this is not 24-7 care, but an extra layer of support and support that can help with risk-benefit decision-making, trying again to figure out how you can get that quality and Optimizing quantity of life. Because even though it has gotten better technologically, everything we do still boils down to risk versus benefit. And even the drugs commonly used for dementia, Demand and Aricept, work best when someone initially has some degree of mild, or perhaps moderate, dementia. Once you reach someone with this severe level of dementia, these medications come with more risks than benefits. So the sooner you can implement these things, the sooner you can help patients and families. So there isn't that isolation so caregivers don't feel isolated and end up burned out. Yes, I think this is the time you seek supportive or palliative care.

Perrie:Having said that and you brought up the fact of getting palliative care and possibly hospice, but the dementia patient sees their GP. I'm sure they end up in the hospital sometimes. They may even go into a nursing home because of their age. And you hear that term or phrase, continuum of caring. Can you help the audience understand what this means and how it relates to the hospice patient as well, or excuse me, the dementia patient?

Erich:Secure. Big. Thanks Perry Thus, in medicine, a continuum of care refers to the delivery of health care over a period of time. And the other piece that is created by supportive care or palliative care. Often these are supplied by organizations like us that are also hospice organizations that are not for profit. So we want this continuum to be continuity. And so we want the provider that goes to that patient, that goes to that family, to be the one who continues to provide care. For example, the patient is diagnosed with Alzheimer's or dementia. They receive supportive care and palliative care in their early stages thereafter and again as we have discussed. On average, these patients live 4 to 8 years. Suppose this patient will live eight years. Let's say two years with the patient. Start palliative care. And in the first 5 to 5.5 years, the patient may benefit from the interventions that supportive care can provide. Like the symptom management guide, the social work guide, and resource identification, because as you've noticed, these patients are often hospitalized. As dementia progresses, patients often develop dysphagia, i.e. difficulty swallowing, with increasing age. And when they develop these swallowing difficulties, they all end up with a condition called aspiration pneumonia, where they get food that enters the lungs and develop subsequent infections. And again, we know that the risks of having a peg tube or feeding tube outweigh the risks for these patients, again, the risk outweighs the benefits. Regarding PEG two. So it's not an option. So how do you change someone's diet so it's safe, make sure you're treating someone's aspiration, progress appropriately, but also know when it's time. If someone has had recurrent aspiration events and they have moderate or severe dementia, that's the time to look and say, hey, this is a time for the hospice where we can have dad, grandpa, grandma at home and the hospice come in and take care of this care at home. There is 24-hour access to care when needed. Someone can come out in the middle of the night, observe something, fix something. Again, we know that over time patients develop things like agitation that are very difficult to control. And you need health expertise. So that's what I think would be most beneficial most of the time. And hopefully the continuum of care could be like that. The continuity of care where you have a provider who initially cares for the patient for supportive or palliative purposes and sees them through to the end and is then able to treat the surviving family members.

Perri:Oh that's great. I think it's challenging at times when so many different people and caregivers are touching that patient and making sure the communication between them is pretty fluid. But often it reaches that endpoint. And I know the word hospice is too scary. Every word floating around. I suspect they were good at night but it is beautiful service. And I think you touched on some of those points. Is there anything else you would like to elaborate on in relation to hospice care in relation to people with dementia?

Erich:Yes. So I just think it's such an all-encompassing care. With hospice care, you get the medical care you need to relieve symptoms and pain, and not just pain but anxiety, and again, hopefully from the same provider. Some of those patients who might be getting paranoid, or family members who, you know, have done such a phenomenal job and put in so much time and have that relationship with a provider can give you that all the way. But hospice also offers counseling about the emotional and spiritual implications of the end of life, not just with social workers. But one of the things I really believe in is the power of ministers. And I think when people think of guys, they think of faith-based and very religious. And it can be that for people if they want it. But it's there for spiritual support and counseling support because it's really about grieving for your loved one and for yourself and Tom the boss and everything you put into it. And so it can be another support. The other great thing about hospice is the hospice service, several different levels of hospice care can be provided. And that, as you know, is a whole other topic of conversation in itself. And one of the great advantages of hospice is the so-called respite care. And Speaker is a five day benefit where the patient can go to a facility, either a qualified care facility or an organization like ours where we have inpatient care centers. We take this patient all the time. We currently have several that I look after at our inpatient care center and it allows the family to take a much needed break. They get those five days or, you know, maybe when the point is reached where the family needs to transfer their loved one to a qualified facility, they can come to our residential care center first for recovery and then move on to a more routine level of care since accommodation is sought. It's just such a huge benefit and gives a much-needed break to caregivers, especially those who may be suffering from some degree of burnout. And then the other point about services that I can't stress enough, the benefit is the grief support for the family grief services and our Chesapeake Life Center and just the tremendous work they do whether it's individuals or groups. And these services are offered free of charge. They are part of our mandate from CMS and we make them available to the family of the deceased for up to 13 months thereafter. And again, it's just a way of processing those feelings with those emotions and trying to process that loss and heal as much as possible.

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

Erich:Surely you're not alone out there. There are many resources that are out there. There is. Alzheimer's is an association dedicated to supporting palliative care, neurological care and hospice care. You know, the full spectrum of care, that's www.alc.org. There is also getpalliativecare.org. We all have our Chesapeakesupportivecare.org for those in our service area, which is located in Mid-Maryland. So Anne Arundel County, Prince George's County, Charles County, all those areas. And so there are a lot of resources out there. You don't have to do it alone. Talk to your carer, whether it be with dementia, be it your neurologist or your GP, and ask about supportive or palliative care. It's a great way to start the conversation and ask early. So if you've received this diagnosis, you know that unfortunately life expectancy averages 48 years after diagnosis. There's nothing wrong with making an early commitment to palliative care support, whether it's symptoms, counseling, or social support. And it's something we can take to track the frequency of visits over time and as symptoms or disease progression worsen. Unfortunately, we can later increase the intensity of care over time. But it's just great to sort of have our foot in the door and get a feel for that patient, how they're doing, and build that bond with the patient's family, so we know we're doing everything we can to make sure to both to optimize this quality of life as well as the quantity of life for the patient.

Perri:Wow. What a perfect way to summarize this discussion. dr Bush, thank you for the invaluable information you are sharing with us. I am sure you have reached many families and patients with this much needed information. We also want to thank the John and Cathy Belcher Institute for their generous support of the hospice and Chesapeake's educational and outreach efforts. Thank you for your time today.