June 1, 2022 • 30 mins
The 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. 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 discussed who is more at risk, what the symptoms are, and what the patient and family should do if they are diagnosed. They also discussed 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 gave 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.
Key Takeaways
The Medical Definition of Dementia and the people who are at risk
The Symptoms and Diagnosis of having Dementia
The Role of Palliative Care or Supportive Care with Dementia Patients
Continuum of Care and the Benefits of it in regards to Dementia Patients
Takeaways and Tips from our Guest, Dr. Bush, to Families with Dementia Patients
Quotes
So the earlier you can get these things (supportive care) implemented, the earlier you can get help for patients and families.
I just wanted to go a little more into what makes the dementia journey so difficult. And one of those aspects is that it may have a lot of different twists and turns, and various varieties of dementia might have different rates of progression. However, the practical issues are very universal.
Websites Mentioned in the Episode
https://www.alz.org/
https://getpalliativecare.org/
https://www.hospicechesapeake.org/
http://chesapeakesupportivecare.org/
Featured in this Episode
Eric Bush, MD, RPh, MBA, CHCQM
Chief Medical Officer at Hospice of the Chesapeake and Chesapeake Supportive Care
Profile: https://www.hospicechesapeake.org/eric-bush-md-rph-mba/
Linkedin: https://www.linkedin.com/in/eric-bush-md-975b1844
Website: https://www.hospicechesapeake.org/
Perry Limes
Director, Strategic Partnerships
Hospice of the Chesapeake
Profile: https://www.hospicechesapeake.org/perry-limes/
Linkedin: https://www.linkedin.com/in/perrylimes
Thanks and Appreciations
We'd like to thank the John & Cathy Belcher Institute for their generous support of our community outreach and education programs.
Chapters
00:00 Introduction
00:44 Dr. Bush’s Background
03:27 What is Dementia? And who is at risk?
06:08 Symptoms and Diagnosis of having Dementia
14:35 The role of Palliative Care and Supportive Care with Dementia Patients
18:43 What is Continuum of Care?
23:06 Takeaways from our Guest in regards to Hospice Care
29:17 Conclusion
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 discussed who is more at risk, what the symptoms are, and what the patient and family should do if they are diagnosed. They also discussed 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 gave 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.
Key Takeaways
The Medical Definition of Dementia and the people who are at risk
The Symptoms and Diagnosis of having Dementia
The Role of Palliative Care or Supportive Care with Dementia Patients
Continuum of Care and the Benefits of it in regards to Dementia Patients
Takeaways and Tips from our Guest, Dr. Bush, to Families with Dementia Patients
Quotes
So the earlier you can get these things (supportive care) implemented, the earlier you can get help for patients and families.
I just wanted to go a little more into what makes the dementia journey so difficult. And one of those aspects is that it may have a lot of different twists and turns, and various varieties of dementia might have different rates of progression. However, the practical issues are very universal.
Websites Mentioned in the Episode
https://www.alz.org/
https://getpalliativecare.org/
https://www.hospicechesapeake.org/
http://chesapeakesupportivecare.org/
Featured in this Episode
Eric Bush, MD, RPh, MBA, CHCQM
Chief Medical Officer at Hospice of the Chesapeake and Chesapeake Supportive Care
Profile: https://www.hospicechesapeake.org/eric-bush-md-rph-mba/
Linkedin: https://www.linkedin.com/in/eric-bush-md-975b1844
Website: https://www.hospicechesapeake.org/
Perry Limes
Director, Strategic Partnerships
Hospice of the Chesapeake
Profile: https://www.hospicechesapeake.org/perry-limes/
Linkedin: https://www.linkedin.com/in/perrylimes
Thanks and Appreciations
We'd like to thank the John & Cathy Belcher Institute for their generous support of our community outreach and education programs.
Chapters
00:00 Introduction
00:44 Dr. Bush’s Background
03:27 What is Dementia? And who is at risk?
06:08 Symptoms and Diagnosis of having Dementia
14:35 The role of Palliative Care and Supportive Care with Dementia Patients
18:43 What is Continuum of Care?
23:06 Takeaways from our Guest in regards to Hospice Care
29:17 Conclusion
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:08):
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, doctor Eric Bush, chiefmedical officer for a Hospice of the Chesapeake.
(00:29):
Thank you so much, doctor Bushfor your time, and let's get
started. First of all, doctorBush, I'd like you to tell us
a little bit about yourself background andtell audience all about you. Sure,
thanks so much, Perry. Appreciate, appreciate, detinuity to be here and
(00:49):
educate always a good thing, somyself. My healthcare career started out back
in nineteen eighty eight, so alittle over thirty plus years ago, as
a medic in the Army Reserve.During my time in the service, I
was able to get my LPN,then decided to go on to pharmacy school.
Had a little twenties life crisis,did my MBA, got lost in
(01:12):
the pharmaceutical industry, went back tomed school at thirty, spent a lot
of time working at local regional CancerInstitute in Buffalo Roswell Park. It's really
what got me back into it,and completed my med school. Ended up
here in the Maryland area for afellowship at nih Maryland has been great to
(01:38):
me. Met met my wife inmedical school. As I said, you
know then she was the boss,still the boss now and I am boarded
an internal medicine hospice in pallid Tomedicine, addiction medicine. I've been doing
hospice in pallid To for the lastfifteen years, seeing tens of thousands of
(02:00):
patients at this point in time.Been very blessed to have the opportunity to
work for a series of not forprofit organizations, many of the community based,
some hospital to some not. AndI've been here with Hospites at Chesspeak
Chestspeak support of care as the chiefmedical officer for the last approximately six years.
(02:24):
Great organization, great heart, greatmission. And that's me in a
nutshell. It's awesome and thank youfor your service. Thank you, fellow
Army vet exactly, fellow army absolutelyYouTube. I said, So, what
(02:45):
we would like to delve into isthe journey with dementia. As we know,
we're seeing more and more of arise in dementia cases and particularly on
the end of life spectrum. Ithink as medicine starts to dive into it,
whereas hospice has primarily been focused aroundcancer and maybe cardiovascular disease. Dementia's
(03:13):
probably I wouldn't say a new diagnosis, but something that hasn't been looked at
as the forefront. So before weget started with the audience, could you
tell us what is dementia? Sure? So, dementia is a general term
for loss of memory, language,problem solving, and other thinking abilities that
(03:36):
are severe enough to enter daily life. Often, when people think of dementia,
they think of Alzheimer's dementia, whichis the most common cause of dementia.
Awesome, and many times we hearabout dementia, we think of an
older person kind of sputtering along andforgetting certain things. Who is most at
(03:57):
risk of developing this particular dementia diagnosis? Yeah, sure, it's a great
question. That's a little more complicated. There are some genetic links with certain
types of dementia. There are actuallyfive different types of dementia. There's Alzheimer's
disease, which again is the mostcommonly known and most common type, the
(04:20):
consequence of an abnormal shrink to thebrain. There's also dementia with Lewis bodies,
vascular dementia, and so vascular dementia, for example, is one where
if you have a lot of timesdiffernic progressive medical issues that affect the body's
(04:41):
cardiovascular system. So say have someheart disease, some hypertension, diabetes,
kidney disease, perfer arterial disease,purfl vascular disease, So those comorbidities would
exacerbate or accelerate the progression of adementia. There's also frontal temporal dementia as
(05:02):
well as mixed dementias, And theseare things that I've seen, and so
there are things that can accelerate,you know, or instigate progression of these
diseases. And so trying to livea health life, healthy lifestyle, healthy
diet, avoid smoking, tobacco,cigarettes, alcohol, things of that nature.
(05:30):
Those are things that in addition todiet and exercise, can help prevent
to some degree these dementias. Now, I truly appreciate that that overview,
because I think many times individuals thinkof dementia is just more of a mental
(05:51):
disease that it's not affecting the totalbody, and it seems like the total
body is still obviously it's linked tothe brain, but there's some some other
issues with physical debilitation. Would youagree with that? Oh? Absolutely,
And so, you know, oneof the statistics to keep in mind is
(06:13):
that the average patient after being diagnosedwith dementia has life expectancy of four to
eight years. Now can be longer. Some patient dementia may live up to
twenty. But again you have toremember that average of four to eight.
It is one of those disease processeswhere I've seen great caregiving can help amplify
(06:41):
or help maintain quality as well asquantity of life. But you I want
to pick up on something you saidearlier with regards to you know, and
cancer, dementia and non cancer diseasesare definitely different than cancer, and so
(07:01):
I think of something like cancer asa catastrophic disease, right. It's a
catastrophicness often unfortunately, because there's someout there, like pancreatic where there are
not good screening tools, and sopatients tend to get diagnosed late. Alternatively,
sometimes with dementia, you see patientsget diagnosed late because there's people out
(07:28):
there who have been very educated prettilyand are able to kind of hide some
of their symptoms, or they havea spouse who still has you know,
full capacity and is able to kindof hide or cover for them their symptoms
as they have memory loss, asthey tend to have physical decline. But
that being said, whether you havea catastrophic illness cancer or a chronic progressive
(07:53):
illness like dementia, heart failure,COPD, kidney disease, they're both fatal,
just at different time frames. Andso again, how do we as
a society, especially given the silverwave that's occurring and large swath of patients
(08:15):
that are coming on, and thestaffing challenges that we have, how do
we make sure to educate people andmaintain 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.Oh that's awesome. So you talked about
(08:39):
the progression of certain diseases. Howdo you see dementia or I guess in
your experience, once somebody has beendiagnosed, how fast do you start to
see decline? Is it as slowdescent or is it something where it varies
(09:00):
patient to patient in terms of declaim. Yeah, so it can vary from
patient to patient. Before we getmore into the medical stratification, I just
wanted to delve in a little bitfirst into what makes the journey with dementia
so challenging, and one of thosepieces is that it can have a lot
(09:24):
of individual twists and turns, andwithin 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 Louisbodies vascular or front to temporal tend to
be more accelerated and sure front totemporal sometimes as well as Louie body can
(09:50):
have more behavioral disturbances which are verychallenging. But regardless, the practical challenges
is tendy fairly universal, and thechallenges overall, including practical which include safety
and security, there's dealing with finances, legal issues. A lot of times
(10:13):
to see couples where I know,even my wife and I we delegate certain
tasks to another, so dealing withthings like finances, and as somebody with
dementia loses that quote unquote executive functionability to balance the checkbook, sometimes they
run into financial issues which their spouseisn't aware of. And then there's also
(10:39):
in this day and age, ofmaking sure that we all have protection can
get into legal issues with regards towho can be the medical power of attorney
financial power of attorney if that hasn'tbeen delineated as of yet. Patients with
dementia sometimes, especially what we justwent through and are still coming out of
(11:01):
with the COVID pandemic, can beisolated and get bored, which then can
leachanges in behavior such as agitation.Then there's some of the physical challenges of
dementia, which include dealing with incontinenceboth urinary and fecal, which each have
(11:22):
their own challenges, manage having anddressing, as well as other activities daily
living such as eating, which tendsto then restrict mobility both for the patient
and caregiver and impacts on sleep andrest. And then there's the emotional challenges
(11:46):
first for the patient. Again,some patients sometimes do have aggression. Some
patients get paranoid or suspicious and canhave hallucinations. Patients with Lewis body dementia
tend to have more hallucinations at times, and part of the challenges the medications
(12:07):
that we use intervening When somebody hasaggression, paranoia, or suspicion, they
have their own set of risks andwe know that the majority of those medications
actually have a negative mortality benefit,that they can cause someone to die sooner.
So then you look at non pharmacologicinterventions, which can be very challenging
(12:31):
as somebody has behavior that's escalating,or if you have, you know,
a caregiver who is much more diminutivein nature than the patient themselves, and
so this often leads to challenges forthe caregiver. Those providing care, they
(12:52):
take care of themselves, but oftenthey don't have somebody to give them a
rest. And then you know,fine events actually once the disease takes its
course and the neurologic progression leads tophysical progression where the patient is no longer
able to bathe themselves, comb theirown air, put on their own clothes,
(13:16):
toilet themselves, feed themselves, andtheir vocabulary has diminished to a degree
and the patient isn't able to situp or smile. UM. You know,
but deciding one to let go andwhen to bring in UM, you
know, hospice care hopefully for thatsupport of or palliative care UM. So
(13:37):
that there's there's a lot that's wrappedup in this UM. And the numbers
are you know, very very largewith regards to concern about you know,
the next twenty to thirty years inthis country, and that inversion of the
pyramid. And how do you haveenough givers both in the healthcare communities as
(14:00):
lay people to care for patients thatare likely to suffer from any type of
dementia? Wow? Wow, greatinformation. Um. You brought up hospice
and piotive care because UM, youknow we are talking about UM kind of
more the end of life spectrum.UM. What is the role of piotive
(14:22):
care or supportive care as we liketo call it UM when in regards to
dementia? UM? And and andand how does that affect the patients?
Sure? Great question, Perry.Care. Supportive care is really appropriate anytime
(14:43):
after a dementia diagnosis and some tangibledecline. UM. There's some varying recommendations.
There's something called the Global Deterioration ScaleUM. And if you look at
that, some people recommend stage two, which is a little bit early.
(15:07):
But probably if you don't have delineateadvance directives, if you don't have a
power of attorney, if there's complicatedfeeling dynamics, that would be a good
time. But I think for mostof the people. When you get to
(15:28):
global deterioration scale of what we callstage four, where the patient has reduced
ability to count finds travel difficult.This includes doctors offices. Right used to
be able to take Grandpa to gosee doctor Smith who is about ten minutes
(15:50):
away, and now instead of takingyou know, twenty minutes to get him
ready, it takes two hours justto figure out how to get him us
get him in the car. Andyou have a patient who can know or
manage their own affairs. I thinkthat's a good time to at least have
(16:10):
an initial palliative or support or consultationbecause there's so much that can be done.
Paliative or supportive care can see youat your home if there are those
mobility difficulties. There is often eithera physician or a nurse practitioner a medical
(16:30):
provider that will come see you athome to address any physical symptoms, to
address progression of disease. But inaddition to that, there is social work
help as well as nursing help thatcan come and see triage. Again,
(16:51):
it's not twenty four seven care,but it is an additional layer of support
and a layer of support that canhelp guide decision making with regards to risk
benefit, and again trying to figureout how you optimize that quality as well
as quantity of life. Because walMen has gotten better technologically, everything we
(17:15):
do still comes down to risk versusbenefit. And even the medicines that are
commonly used for dementia nemenda and aaraccept are really best when somebody first has
multi or maybe moderate dementia to somedegree. Once you get to somebody with
(17:37):
that severe degree of dementia, thosemedicines actually have more risk than benefit.
So the earlier you can get thesethings implemented, the earlier you can get
help for patients and families so there'snot that isolation so that caregivers don't feel
isolated and end up getting burned out. I think that's the time when you
(18:03):
get supportive or palliative care involved.Awesome. With that said, and you've
brought up the fact about getting palliativecare 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 gobecause of the age, to a nursing
(18:25):
home. And you hear this termor this phrase, continuum of care can
you help the audience understand what thatmeans and how it also relates to the
hospital patient, excuse me, tothe dementia care patient. Sure, great,
(18:45):
thanks Perry. So, in medicine, continuum of care refers to the
delivery of healthcare over period of timeand the other piece that create a best
supportive care or palliative care. Alot of times these are delivered by our
organizations like ourselves, that are alsohospice organizations that are not for profits.
(19:10):
And so what we want is thatcontinuum to be continuity. And so we
want that provider that goes to seethat patient, that goes to see that
family, the one that continues toprovide care. The patient gets diagnosed with
say Alzheimer's dementia, they get supportivecare, palliative care in there early,
(19:36):
say just after. And again,as we talked earlier, on average these
patients live four to eight years.Let's say this patient is going to live
eight years. Let's say two yearsin the patients starts seeing palliative care,
and for those first five to fiveand a half years, the patient is
able, the patient family are ableto benefit from these interventions that supportive Garret
(20:00):
can provide, Like the guidance regardingsymptom management, the guidance regarding social work
identifying resources. Because as you knowthat these patients often do get hospitalized as
dementia progresses. Patients often do getdysphasia with a G which is difficulty swallowing.
(20:25):
And when they developed this difficulty swallowing, they all end up with something
we call aspiration pneumonia where they getfood that goes into the lung, developed
subsequent infections, and again we knowthat the risks of having a PEG tube
or feeding tube in place for thesepatients out. Again, the risk of
(20:45):
doing that outweighs the benefit with regardsof PEG two, So that's really not
an option. So how do youmodify somebody's diet so that it's safe,
make sure that you treat somebody's inspirationevents appropriately, but also know when it's
time. If somebody's had recurrent aspirationevents and they have moderate or severe dementia,
(21:14):
that that's the time where you reallyneed to look and say, hey,
this is the time for hospice wherewe can have you know, Dad
and Grandpa Grandma at home and hospicecan come in and provide that care at
home. There's twenty four to sevenaccess to care. If need be,
somebody can come out in the middleof the night. We are something troubleshoots
(21:37):
something again. We know that moreoften than not, as time change,
time goes on, patients will developthings like agitation that are very difficult to
control, and you really need thehealthcare expertise. So that that's what I
feel would be you know, mostOPTI most beneficial, and hopefully that's how
(22:00):
the continuum of care could be.The continuity of care where you have a
provider that starts out seeing the patientfor support of a palliative purposes and sees
them all the way through and isin there and able to provide eavement services
thereafter for the surviving family members.Oh that's awesome. I think it's it's
(22:26):
challenging sometimes where so many different individualsand caregivers touch this patient and making sure
that the communication is pretty fluid betweenall of those. But a lot of
times it gets to that endpoint.And I know the hospice word is the
scary h word that that floats aroundas a specter or ghoul in the night,
(22:49):
but it's it's it's actually a beautifulservice and I think you touched on
some of those points. Is thereanything else you would like to elaborate well
in regards to hospice care when itcomes to the dementia patient. Yeah,
(23:10):
so, I just think it's suchall encompassing care. With hospice care,
you get the medical care to alleviatesymptoms and pain and not just pain but
agitation. And again hopefully you havethe same provider. So some of those
patients that may get paranoid, orfamily members that you know have done such
(23:32):
a phenomenal job and invested so muchtime and have that relationship with a provider,
they're able to get you that allthe way through. But hospice also
provides counseling about emotional and spiritual impactof the end of life, not just
with social workers. But one ofthe things I strongly believe in is really
(23:55):
the power of chaplains. And Ithink when people think of say think of
you know, faith based and veryreligious, and it can be that for
people if they want it to be, but it's really there for spiritual support
and counseling support, because this isreally about you know, grieving for your
(24:18):
loved one and grieving for yourself andtime the lost and all that you've put
in and so it can be anothersupport. The other great thing about hospice
the hospice benefit. There are multipledifferent levels of hospice care that can be
provided, and that's a whole other, whole other talk to itself, as
(24:41):
you know, but one of thegreat benefits with hospice is something called respite
care, and respecer is a fiveday benefit where the patient can go to
a facility, either a skill nursingfacility or an organization like our where we
have inpatient care centers we take withpatients all the time. We have several
(25:06):
right now that I'm caring for atour impatient care center, and it allows
the family to get a much neededbreak. They get those five days,
or if you know, maybe thingshave gotten to the point where the family
needs to transition their loved one toa Skilton facility, they can come into
(25:27):
our inpatient care center initially for respiteand then transition a routine level of care
as placement is sought. Is justsuch a huge benefit and really gives caregivers,
especially that may have some degree ofburnout, you know, break much
needed break. And then the otherpoint with regards services that I can't over
(25:52):
emphasize. The benefit is really thegrief support for the family, bereavement services
and our Chesapeak Life Center and justthe tremendous job they do, whether it's
individual or group, and those servicesare provided you know, UM free.
(26:12):
They're part of um our mandate fromCMS and we provide those for up to
thirteen months for loved ones of thedeceased thereafter, and again it's just a
way to help work through those feelings, with those emotions and try to process
(26:33):
that loss and you know, tryto heal as much as that as possible.
Oh, it's so beautiful, Sobeautiful. Then so what, uh,
doctor Bush? Um? You knowsome of the with all this great
information that you shared with us fromyour medical perspective, UM, what would
you want a person with dementia ortheir family to know that they may not
(26:59):
be aware of right now? Sure, UM, You're You're not out there
alone. There is a lot ofresources that are out there. UM.
There is Alzheimer's Association, which UMspeaks to supportive palliative care, neurologic care,
(27:21):
hospice care, you know, thewhole spectrum of care UM, which
is www dot alz dot org.UM. There is also get Palliativecare dot
org. We all have our ChesapeakeSupportivecare dot org for those that are in
our service area, which is midMaryland, so an Arundo County, Prince
(27:45):
George's County, Charles County, UM, all those areas and so there's a
lot of resources out there. Youdon't have to go it alone. UM
do definitely speak with your provide er, whether it's in the case of demand
saw, whether it's your neurologist,your primary care decision and ask them about
(28:08):
supportive or palliative care is a greatway to start off the conversation and ask
early. So if you've received thatdiagnosis, you know knowing that unfortunately,
on average the life expectancy is fourto eight years after diagnosis. There's nothing
wrong with getting supportive a palliative careinvolved early, whether it's for symptoms or
(28:33):
guidance or social support. And it'ssomething we can type the visit frequency as
time goes on and as a symptomsor disease progression worsens. Unfortunately, as
time goes on, we can increasethe intensity of care later on. But
it's just great to have our footin the door, so to speak,
(28:56):
and get a sense of that pagehow they are and form that bond with
the patient family so that we knowwe're doing everything we can in order to
make sure again to optimize both thatquality and quantity of life for the patient.
(29:17):
Wow. With that said, whata perfect way to summarize this discussion,
doctor Bush. Thank you for theinvaluable information that you share with us.
I am sure that you have touchedmany families and patients with this much
much needed information. We would liketo thank the John and Kathy Belcher Institute
(29:42):
for your generous support on hospitals ofthe Jessa Peaks endeavors in education and community
outreach as well. Thank you somuch for your time today. M. M.
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, doctor Eric Bush, chiefmedical officer for a Hospice of the Chesapeake.
(00:29):
Thank you so much, doctor Bushfor your time, and let's get
started. First of all, doctorBush, I'd like you to tell us
a little bit about yourself background andtell audience all about you. Sure,
thanks so much, Perry. Appreciate, appreciate, detinuity to be here and
(00:49):
educate always a good thing, somyself. My healthcare career started out back
in nineteen eighty eight, so alittle over thirty plus years ago, as
a medic in the Army Reserve.During my time in the service, I
was able to get my LPN,then decided to go on to pharmacy school.
Had a little twenties life crisis,did my MBA, got lost in
(01:12):
the pharmaceutical industry, went back tomed school at thirty, spent a lot
of time working at local regional CancerInstitute in Buffalo Roswell Park. It's really
what got me back into it,and completed my med school. Ended up
here in the Maryland area for afellowship at nih Maryland has been great to
(01:38):
me. Met met my wife inmedical school. As I said, you
know then she was the boss,still the boss now and I am boarded
an internal medicine hospice in pallid Tomedicine, addiction medicine. I've been doing
hospice in pallid To for the lastfifteen years, seeing tens of thousands of
(02:00):
patients at this point in time.Been very blessed to have the opportunity to
work for a series of not forprofit organizations, many of the community based,
some hospital to some not. AndI've been here with Hospites at Chesspeak
Chestspeak support of care as the chiefmedical officer for the last approximately six years.
(02:24):
Great organization, great heart, greatmission. And that's me in a
nutshell. It's awesome and thank youfor your service. Thank you, fellow
Army vet exactly, fellow army absolutelyYouTube. I said, So, what
(02:45):
we would like to delve into isthe journey with dementia. As we know,
we're seeing more and more of arise in dementia cases and particularly on
the end of life spectrum. Ithink as medicine starts to dive into it,
whereas hospice has primarily been focused aroundcancer and maybe cardiovascular disease. Dementia's
(03:13):
probably I wouldn't say a new diagnosis, but something that hasn't been looked at
as the forefront. So before weget started with the audience, could you
tell us what is dementia? Sure? So, dementia is a general term
for loss of memory, language,problem solving, and other thinking abilities that
(03:36):
are severe enough to enter daily life. Often, when people think of dementia,
they think of Alzheimer's dementia, whichis the most common cause of dementia.
Awesome, and many times we hearabout dementia, we think of an
older person kind of sputtering along andforgetting certain things. Who is most at
(03:57):
risk of developing this particular dementia diagnosis? Yeah, sure, it's a great
question. That's a little more complicated. There are some genetic links with certain
types of dementia. There are actuallyfive different types of dementia. There's Alzheimer's
disease, which again is the mostcommonly known and most common type, the
(04:20):
consequence of an abnormal shrink to thebrain. There's also dementia with Lewis bodies,
vascular dementia, and so vascular dementia, for example, is one where
if you have a lot of timesdiffernic progressive medical issues that affect the body's
(04:41):
cardiovascular system. So say have someheart disease, some hypertension, diabetes,
kidney disease, perfer arterial disease,purfl vascular disease, So those comorbidities would
exacerbate or accelerate the progression of adementia. There's also frontal temporal dementia as
(05:02):
well as mixed dementias, And theseare things that I've seen, and so
there are things that can accelerate,you know, or instigate progression of these
diseases. And so trying to livea health life, healthy lifestyle, healthy
diet, avoid smoking, tobacco,cigarettes, alcohol, things of that nature.
(05:30):
Those are things that in addition todiet and exercise, can help prevent
to some degree these dementias. Now, I truly appreciate that that overview,
because I think many times individuals thinkof dementia is just more of a mental
(05:51):
disease that it's not affecting the totalbody, and it seems like the total
body is still obviously it's linked tothe brain, but there's some some other
issues with physical debilitation. Would youagree with that? Oh? Absolutely,
And so, you know, oneof the statistics to keep in mind is
(06:13):
that the average patient after being diagnosedwith dementia has life expectancy of four to
eight years. Now can be longer. Some patient dementia may live up to
twenty. But again you have toremember that average of four to eight.
It is one of those disease processeswhere I've seen great caregiving can help amplify
(06:41):
or help maintain quality as well asquantity of life. But you I want
to pick up on something you saidearlier with regards to you know, and
cancer, dementia and non cancer diseasesare definitely different than cancer, and so
(07:01):
I think of something like cancer asa catastrophic disease, right. It's a
catastrophicness often unfortunately, because there's someout there, like pancreatic where there are
not good screening tools, and sopatients tend to get diagnosed late. Alternatively,
sometimes with dementia, you see patientsget diagnosed late because there's people out
(07:28):
there who have been very educated prettilyand are able to kind of hide some
of their symptoms, or they havea spouse who still has you know,
full capacity and is able to kindof hide or cover for them their symptoms
as they have memory loss, asthey tend to have physical decline. But
that being said, whether you havea catastrophic illness cancer or a chronic progressive
(07:53):
illness like dementia, heart failure,COPD, kidney disease, they're both fatal,
just at different time frames. Andso again, how do we as
a society, especially given the silverwave that's occurring and large swath of patients
(08:15):
that are coming on, and thestaffing challenges that we have, how do
we make sure to educate people andmaintain 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.Oh that's awesome. So you talked about
(08:39):
the progression of certain diseases. Howdo you see dementia or I guess in
your experience, once somebody has beendiagnosed, how fast do you start to
see decline? Is it as slowdescent or is it something where it varies
(09:00):
patient to patient in terms of declaim. Yeah, so it can vary from
patient to patient. Before we getmore into the medical stratification, I just
wanted to delve in a little bitfirst into what makes the journey with dementia
so challenging, and one of thosepieces is that it can have a lot
(09:24):
of individual twists and turns, andwithin 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 Louisbodies vascular or front to temporal tend to
be more accelerated and sure front totemporal sometimes as well as Louie body can
(09:50):
have more behavioral disturbances which are verychallenging. But regardless, the practical challenges
is tendy fairly universal, and thechallenges overall, including practical which include safety
and security, there's dealing with finances, legal issues. A lot of times
(10:13):
to see couples where I know,even my wife and I we delegate certain
tasks to another, so dealing withthings like finances, and as somebody with
dementia loses that quote unquote executive functionability to balance the checkbook, sometimes they
run into financial issues which their spouseisn't aware of. And then there's also
(10:39):
in this day and age, ofmaking sure that we all have protection can
get into legal issues with regards towho can be the medical power of attorney
financial power of attorney if that hasn'tbeen delineated as of yet. Patients with
dementia sometimes, especially what we justwent through and are still coming out of
(11:01):
with the COVID pandemic, can beisolated and get bored, which then can
leachanges in behavior such as agitation.Then there's some of the physical challenges of
dementia, which include dealing with incontinenceboth urinary and fecal, which each have
(11:22):
their own challenges, manage having anddressing, as well as other activities daily
living such as eating, which tendsto then restrict mobility both for the patient
and caregiver and impacts on sleep andrest. And then there's the emotional challenges
(11:46):
first for the patient. Again,some patients sometimes do have aggression. Some
patients get paranoid or suspicious and canhave hallucinations. Patients with Lewis body dementia
tend to have more hallucinations at times, and part of the challenges the medications
(12:07):
that we use intervening When somebody hasaggression, paranoia, or suspicion, they
have their own set of risks andwe know that the majority of those medications
actually have a negative mortality benefit,that they can cause someone to die sooner.
So then you look at non pharmacologicinterventions, which can be very challenging
(12:31):
as somebody has behavior that's escalating,or if you have, you know,
a caregiver who is much more diminutivein nature than the patient themselves, and
so this often leads to challenges forthe caregiver. Those providing care, they
(12:52):
take care of themselves, but oftenthey don't have somebody to give them a
rest. And then you know,fine events actually once the disease takes its
course and the neurologic progression leads tophysical progression where the patient is no longer
able to bathe themselves, comb theirown air, put on their own clothes,
(13:16):
toilet themselves, feed themselves, andtheir vocabulary has diminished to a degree
and the patient isn't able to situp or smile. UM. You know,
but deciding one to let go andwhen to bring in UM, you
know, hospice care hopefully for thatsupport of or palliative care UM. So
(13:37):
that there's there's a lot that's wrappedup in this UM. And the numbers
are you know, very very largewith regards to concern about you know,
the next twenty to thirty years inthis country, and that inversion of the
pyramid. And how do you haveenough givers both in the healthcare communities as
(14:00):
lay people to care for patients thatare likely to suffer from any type of
dementia? Wow? Wow, greatinformation. Um. You brought up hospice
and piotive care because UM, youknow we are talking about UM kind of
more the end of life spectrum.UM. What is the role of piotive
(14:22):
care or supportive care as we liketo call it UM when in regards to
dementia? UM? And and andand how does that affect the patients?
Sure? Great question, Perry.Care. Supportive care is really appropriate anytime
(14:43):
after a dementia diagnosis and some tangibledecline. UM. There's some varying recommendations.
There's something called the Global Deterioration ScaleUM. And if you look at
that, some people recommend stage two, which is a little bit early.
(15:07):
But probably if you don't have delineateadvance directives, if you don't have a
power of attorney, if there's complicatedfeeling dynamics, that would be a good
time. But I think for mostof the people. When you get to
(15:28):
global deterioration scale of what we callstage four, where the patient has reduced
ability to count finds travel difficult.This includes doctors offices. Right used to
be able to take Grandpa to gosee doctor Smith who is about ten minutes
(15:50):
away, and now instead of takingyou know, twenty minutes to get him
ready, it takes two hours justto figure out how to get him us
get him in the car. Andyou have a patient who can know or
manage their own affairs. I thinkthat's a good time to at least have
(16:10):
an initial palliative or support or consultationbecause there's so much that can be done.
Paliative or supportive care can see youat your home if there are those
mobility difficulties. There is often eithera physician or a nurse practitioner a medical
(16:30):
provider that will come see you athome to address any physical symptoms, to
address progression of disease. But inaddition to that, there is social work
help as well as nursing help thatcan come and see triage. Again,
(16:51):
it's not twenty four seven care,but it is an additional layer of support
and a layer of support that canhelp guide decision making with regards to risk
benefit, and again trying to figureout how you optimize that quality as well
as quantity of life. Because walMen has gotten better technologically, everything we
(17:15):
do still comes down to risk versusbenefit. And even the medicines that are
commonly used for dementia nemenda and aaraccept are really best when somebody first has
multi or maybe moderate dementia to somedegree. Once you get to somebody with
(17:37):
that severe degree of dementia, thosemedicines actually have more risk than benefit.
So the earlier you can get thesethings implemented, the earlier you can get
help for patients and families so there'snot that isolation so that caregivers don't feel
isolated and end up getting burned out. I think that's the time when you
(18:03):
get supportive or palliative care involved.Awesome. With that said, and you've
brought up the fact about getting palliativecare 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 gobecause of the age, to a nursing
(18:25):
home. And you hear this termor this phrase, continuum of care can
you help the audience understand what thatmeans and how it also relates to the
hospital patient, excuse me, tothe dementia care patient. Sure, great,
(18:45):
thanks Perry. So, in medicine, continuum of care refers to the
delivery of healthcare over period of timeand the other piece that create a best
supportive care or palliative care. Alot of times these are delivered by our
organizations like ourselves, that are alsohospice organizations that are not for profits.
(19:10):
And so what we want is thatcontinuum to be continuity. And so we
want that provider that goes to seethat patient, that goes to see that
family, the one that continues toprovide care. The patient gets diagnosed with
say Alzheimer's dementia, they get supportivecare, palliative care in there early,
(19:36):
say just after. And again,as we talked earlier, on average these
patients live four to eight years.Let's say this patient is going to live
eight years. Let's say two yearsin the patients starts seeing palliative care,
and for those first five to fiveand a half years, the patient is
able, the patient family are ableto benefit from these interventions that supportive Garret
(20:00):
can provide, Like the guidance regardingsymptom management, the guidance regarding social work
identifying resources. Because as you knowthat these patients often do get hospitalized as
dementia progresses. Patients often do getdysphasia with a G which is difficulty swallowing.
(20:25):
And when they developed this difficulty swallowing, they all end up with something
we call aspiration pneumonia where they getfood that goes into the lung, developed
subsequent infections, and again we knowthat the risks of having a PEG tube
or feeding tube in place for thesepatients out. Again, the risk of
(20:45):
doing that outweighs the benefit with regardsof PEG two, So that's really not
an option. So how do youmodify somebody's diet so that it's safe,
make sure that you treat somebody's inspirationevents appropriately, but also know when it's
time. If somebody's had recurrent aspirationevents and they have moderate or severe dementia,
(21:14):
that that's the time where you reallyneed to look and say, hey,
this is the time for hospice wherewe can have you know, Dad
and Grandpa Grandma at home and hospicecan come in and provide that care at
home. There's twenty four to sevenaccess to care. If need be,
somebody can come out in the middleof the night. We are something troubleshoots
(21:37):
something again. We know that moreoften than not, as time change,
time goes on, patients will developthings like agitation that are very difficult to
control, and you really need thehealthcare expertise. So that that's what I
feel would be you know, mostOPTI most beneficial, and hopefully that's how
(22:00):
the continuum of care could be.The continuity of care where you have a
provider that starts out seeing the patientfor support of a palliative purposes and sees
them all the way through and isin there and able to provide eavement services
thereafter for the surviving family members.Oh that's awesome. I think it's it's
(22:26):
challenging sometimes where so many different individualsand caregivers touch this patient and making sure
that the communication is pretty fluid betweenall of those. But a lot of
times it gets to that endpoint.And I know the hospice word is the
scary h word that that floats aroundas a specter or ghoul in the night,
(22:49):
but it's it's it's actually a beautifulservice and I think you touched on
some of those points. Is thereanything else you would like to elaborate well
in regards to hospice care when itcomes to the dementia patient. Yeah,
(23:10):
so, I just think it's suchall encompassing care. With hospice care,
you get the medical care to alleviatesymptoms and pain and not just pain but
agitation. And again hopefully you havethe same provider. So some of those
patients that may get paranoid, orfamily members that you know have done such
(23:32):
a phenomenal job and invested so muchtime and have that relationship with a provider,
they're able to get you that allthe way through. But hospice also
provides counseling about emotional and spiritual impactof the end of life, not just
with social workers. But one ofthe things I strongly believe in is really
(23:55):
the power of chaplains. And Ithink when people think of say think of
you know, faith based and veryreligious, and it can be that for
people if they want it to be, but it's really there for spiritual support
and counseling support, because this isreally about you know, grieving for your
(24:18):
loved one and grieving for yourself andtime the lost and all that you've put
in and so it can be anothersupport. The other great thing about hospice
the hospice benefit. There are multipledifferent levels of hospice care that can be
provided, and that's a whole other, whole other talk to itself, as
(24:41):
you know, but one of thegreat benefits with hospice is something called respite
care, and respecer is a fiveday benefit where the patient can go to
a facility, either a skill nursingfacility or an organization like our where we
have inpatient care centers we take withpatients all the time. We have several
(25:06):
right now that I'm caring for atour impatient care center, and it allows
the family to get a much neededbreak. They get those five days,
or if you know, maybe thingshave gotten to the point where the family
needs to transition their loved one toa Skilton facility, they can come into
(25:27):
our inpatient care center initially for respiteand then transition a routine level of care
as placement is sought. Is justsuch a huge benefit and really gives caregivers,
especially that may have some degree ofburnout, you know, break much
needed break. And then the otherpoint with regards services that I can't over
(25:52):
emphasize. The benefit is really thegrief support for the family, bereavement services
and our Chesapeak Life Center and justthe tremendous job they do, whether it's
individual or group, and those servicesare provided you know, UM free.
(26:12):
They're part of um our mandate fromCMS and we provide those for up to
thirteen months for loved ones of thedeceased thereafter, and again it's just a
way to help work through those feelings, with those emotions and try to process
(26:33):
that loss and you know, tryto heal as much as that as possible.
Oh, it's so beautiful, Sobeautiful. Then so what, uh,
doctor Bush? Um? You knowsome of the with all this great
information that you shared with us fromyour medical perspective, UM, what would
you want a person with dementia ortheir family to know that they may not
(26:59):
be aware of right now? Sure, UM, You're You're not out there
alone. There is a lot ofresources that are out there. UM.
There is Alzheimer's Association, which UMspeaks to supportive palliative care, neurologic care,
(27:21):
hospice care, you know, thewhole spectrum of care UM, which
is www dot alz dot org.UM. There is also get Palliativecare dot
org. We all have our ChesapeakeSupportivecare dot org for those that are in
our service area, which is midMaryland, so an Arundo County, Prince
(27:45):
George's County, Charles County, UM, all those areas and so there's a
lot of resources out there. Youdon't have to go it alone. UM
do definitely speak with your provide er, whether it's in the case of demand
saw, whether it's your neurologist,your primary care decision and ask them about
(28:08):
supportive or palliative care is a greatway to start off the conversation and ask
early. So if you've received thatdiagnosis, you know knowing that unfortunately,
on average the life expectancy is fourto eight years after diagnosis. There's nothing
wrong with getting supportive a palliative careinvolved early, whether it's for symptoms or
(28:33):
guidance or social support. And it'ssomething we can type the visit frequency as
time goes on and as a symptomsor disease progression worsens. Unfortunately, as
time goes on, we can increasethe intensity of care later on. But
it's just great to have our footin the door, so to speak,
(28:56):
and get a sense of that pagehow they are and form that bond with
the patient family so that we knowwe're doing everything we can in order to
make sure again to optimize both thatquality and quantity of life for the patient.
(29:17):
Wow. With that said, whata perfect way to summarize this discussion,
doctor Bush. Thank you for theinvaluable information that you share with us.
I am sure that you have touchedmany families and patients with this much
much needed information. We would liketo thank the John and Kathy Belcher Institute
(29:42):
for your generous support on hospitals ofthe Jessa Peaks endeavors in education and community
outreach as well. Thank you somuch for your time today. M. M.
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