When Your Aging Parent Needs Help - Encore

We’re revisiting this episode because its insights remain as powerful and relevant today as when it first aired.

On today's episode of the Truth, Lies, & Alzheimer's Show, Lisa shares the advice of Dr. Leslie Kernisan, MD MPH, author of the book, "When Your Aging Parent Needs Help" about paranoid symptoms, delusions, hallucinations, and disorganized thoughts or speech, also known as psychosis. Dr. Kernisan is a gerontologist who specializes in the aged. Lisa explains Dr. Kernisan's definitions and symptoms of what to look for when symptoms of psychosis are occurring in our loved ones, some of the causes, and what you can do if you see this happening. Lisa also shares the opinion of Dr. Brittany Lamb, an ER Physician who specializes in dementia, as she answers the question, "Do people living with dementia feel pain?" So, please tune in...you won't want to miss this informative episode!

For more information: When Your Aging Parent Needs Help

About the Host:

Author Lisa Skinner is a behavioral specialist with expertise in Alzheimer’s disease and related dementia. In her 30+year career working with family members and caregivers, Lisa has taught them how to successfully navigate the many challenges that accompany this heartbreaking disease. Lisa is both a Certified Dementia Practitioner and is also a certified dementia care trainer through the Alzheimer’s Association. She also holds a degree in Human Behavior.

Her latest book, “Truth, Lies & Alzheimer’s – Its Secret Faces” continues Lisa’s quest of working with dementia-related illnesses and teaching families and caregivers how to better understand the daunting challenges of brain disease. Her #1 Best-seller book “Not All Who Wander Need Be Lost,” was written at their urging. As someone who has had eight family members diagnosed with dementia, Lisa Skinner has found her calling in helping others through the struggle so they can have a better-quality relationship with their loved ones through education and through her workshops on counter-intuitive solutions and tools to help people effectively manage the symptoms of brain disease. Lisa Skinner has appeared on many national and regional media broadcasts. Lisa helps explain behaviors caused by dementia, encourages those who feel burdened, and gives practical advice for how to respond.

So many people today are heavily impacted by Alzheimer's disease and related dementia. The Alzheimer's Association and the World Health Organization have projected that the number of people who will develop Alzheimer's disease by the year 2050 worldwide will triple if a treatment or cure is not found. Society is not prepared to care for the projected increase of people who will develop this devastating disease. In her 30 years of working with family members and caregivers who suffer from dementia, Lisa has recognized how little people really understand the complexities of what living with this disease is really like. For Lisa, it starts with knowledge, education, and training.

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Episode Transcript

Lisa Skinner (00:00):
Welcome to the show, everybody. I am so glad to

(00:04):
have you here with us foranother episode of the truth,
lies and Alzheimer's show. Andas you know, the purpose of this
show is to talk about everyaspect of Alzheimer's disease
and dementia and death. It doesinclude the good, the bad and

(00:26):
the ugly, but our goal is to getto the truth, dispel the lies in
this and unveil what I call thesecret faces of Alzheimer's
disease. In order for you tounderstand what it's truly like
to live with brain disease, myhope is to zoom outside the

(00:51):
paradigm of it exclusively beinga memory loss condition, and to
shift people's understanding ofjust how dramatically this
disease impacts the lives ofthose who have it, as well as
their caregivers and familymembers like you, and for that
matter, anybody who's involvedin the life of a person living

(01:15):
with Dementia. And it truly doesimpact everybody. So for today's
episode, I did some research. Iread a lot of Dr carnison
advice. He is a specialist ingerontology, so she specializes

(01:40):
in working with the aged andaging senior citizens, and she
also specializes in dementiacare and works with caregivers.
So I know we've talked aboutthis topic on previous episodes,
but I really thought it would bevaluable to share the

(02:01):
perspective of a medical doctor,which you know sometimes is a
little different. It varies alittle bit from the psychosocial
approaches, and that's what Ispecialize in, from an actual
scientific or medical approach.So she wrote this article in her

(02:26):
better health while aging, whichis practical information for
aging health and familycaregivers. So this is what I'm
going to share with you. So thequestion to Dr kernesen from a
patient was, my mother is 80years old. She's very active,

(02:47):
despite breaking her hip twoyears ago, and she says she's a
retired psych nurse and hasshown signs in the past of
paranoia. Lately, my mother hasheard voices of her
grandchildren in her home andcalled my sister. She also has

(03:10):
difficulty with getting theright words to say out, and has
her sleep pattern out of whack,and will call people at odd
times of the night with herindependence comes the fact that
she won't share any medicalinformation because she thinks
we are getting ready to commither so Dr carnesian says, as

(03:36):
many of you know, It's fairlycommon for aging adults to
develop problems like the onesyou are describing. Some older
adults will also start levelinga lot of false accusations. So
understandably, these problemsare frustrating and worrying for
adult children. You areabsolutely right to be concerned

(04:00):
about your mom's safety. Andthen she she says, I'm going to
share some ideas for how you canget started assessing her, but
she first wants to explain themost common causes of this type
of behavior in older adults,because one of the things you
must do is help your mother oryour loved one and the doctors

(04:24):
figure out why she's developedthese behavior changes and other
symptoms such as Alzheimer'sdisease, which is true about 40%
of the time, and in My previousdiscussions with you about these
same typical and common symptomsthat we're going to go over,

(04:45):
delusion, hallucinations,disorganized thoughts or speech
and paranoia, we have addressedthose as very common. The
occurrences, signs and symptomsof people living with
Alzheimer's disease and relateddementia now can happen

(05:08):
regardless of whether or not aperson's living with Alzheimer's
and dementia, according to Drcarnison, so what she says is
it's often hard to get aresistant older parent medically
evaluated, but still, it isworth persisting in this,

(05:30):
because many causes of paranoiaor other odd behavior in older
treatments can be treatedparanoid symptoms, for example,
believing that someone is out toget you or is taking your stuff
or is in the house at night,falls into a category of mental

(05:53):
symptoms that is technicallycalled psychosis. Symptoms of
psychosis can include delusions.Again, that means believing
things that aren't true or real,which can include false
accusations, hallucinations,which means seeing or hearing

(06:16):
things that aren't there,disorganized thoughts or speech,
meaning saying or thinkingthings that seem illogical or
bizarre to others. Psychosis isuncommon in the younger people,
because much more common aspeople get older, and that's
because any of these symptomscan emerge when people's brains

(06:41):
aren't working properly for somereason, like brain disease, that
is changing the brain anddamaging the brain. But it's not
limited to Alzheimer's diseaseand dementia. A 2015 review
article on late life psychosis,according to Dr carnison,

(07:06):
estimates that 23% of peoplewill develop symptoms of
psychosis in late life, and thisis not again, not limited to
people suffering from dementia.And let me remind you that I

(07:26):
know I told you the story of mygrandmother. She was my very
first experience withAlzheimer's disease and
dementia, and I was absolutelyshocked and taken aback the day
I went to visit her andcompletely taken off guard when
we were sitting in her livingroom, and she started telling me

(07:49):
about the birds that were livingin her mattress and coming out
at night and pecking at herface. And she also told me about
the men who were constantlytrying to break into her home to
harm her, and the rats that wereproceeding to invade her home.

(08:10):
And she even pointed to her wallin her living room. Said, Oh
yeah, I see them running acrossthe wall all the time. So that
was my first introduction toAlzheimer's disease and a
related dementia caused bydamage to the brain and

(08:30):
experiencing somebody definitelyHaving delusions, hallucinations
and paranoia, paranoid symptoms.Dr carnison liked to review this
article because the authorsorganized the causes of late
life psychosis into six ds, andhere they are. So the first D is

(08:56):
delirium. About 10% of thepeople suffer from delirium. And
she says this is a very commoncondition of worse than usual
mental function, often broughton by the stress of severe
illness, surgery orhospitalization. The second D

(09:20):
affects about 11% of the peopleare drugs, alcohol and other
toxins. The abuse of drugs,alcohol or other toxins, or
withdrawal from alcohol or othersubstances can also cause
psychotic symptoms, diseaseaccounts for about 10%

(09:45):
and the article that she'squoting from says many physical
health problems can interferewith brain function. These
include electrolyte problems,such as abnormal levels of
sodium, potassium. Calcium ormagnesium in the blood, low
levels of vitamin B, 12 orfolate, thyroid problems, severe

(10:11):
liver or kidney dysfunction.Infections and neurological
diseases. Brain damage fromminor strokes can also cause
psychosis, symptoms, braindamage from minor strokes, and
this is me talking is what weattribute vascular dementia to,

(10:31):
but it is very common to seethose same behaviors and
symptoms in people with vasculardementia. Depression is the next
B and accounts for about 33% andother mood disorders, including
bipolar disease, about 15% ofpeople with major depression may

(10:56):
experience a psychotic symptom,delusions of guilt or deserved
punishment are especiallycommon, and then we have
dementia, another D thatincludes About 40% and also

(11:18):
includes Alzheimer's disease,Lewy body dementia and others.
And I have mentioned thisbefore, but there are actually
over 100 brain diseases thatcause dementia. So a lot of
illnesses out there, delusionsare extremely common in

(11:41):
dementia, especially delusionson theft, spousal infidelity,
abandonment and persecution.Hallucinations, especially
visual hallucinations, are verycommon, and that's especially in
Lewy body dementia. And then thelast D is called delusional

(12:09):
disorder, and that pertains toabout 2% and schizophrenia
Spectrum Disorders about 1% nowthese two conditions have many
symptoms that overlap with thoseof dementia, deliria or other
conditions affecting thinking,doctors must exclude these more

(12:30):
common conditions beforediagnosing a person with
schizophrenia or delusionaldisorder. Schizophrenia affects
an estimated 0.1 to 0.5% ofpeople over age 65 many were
diagnosed earlier in life, butsome people can develop the

(12:51):
condition later in life.Delusional disorder affects an
estimated 0.03% of older adults.So as you can see, when older
adults experience delusions,hallucinations and paranoid
thoughts, there is almost alwayssomething more going on with

(13:13):
their help, figuring out what isbeneath the crazy or irrational
or paranoid behavior is key. Soaccording to Dr carneson, if you
are witnessing these types ofoccurrences and signs and
symptoms in your loved one, itmight be Alzheimer's disease, it

(13:39):
might be frontotemporal lobedisease, it might be Lewy body
dementia, but it might also be amental health period situation
going on. So what's the bestthing to do? The best thing to
do, obviously, is to take yourloved one to their primary care

(14:04):
physician and let them know yourconcerns, your experiences, what
is going on. I thought that wasreally an invaluable perspective
to share with you the articlethat I was reading from was
first published in 2016 then itwas reviewed with minor updates,

(14:28):
and those were made in Septemberof 2023 if you're interested in
reading more about Dr carnezon,you can look her up. Her website
is www.betterhealthwilaging.netI read a lot of the information

(14:54):
that she publishes. I've readher book, and I think she is a.
An excellent, excellent resourcefor such that wants more insight
and information into our agingparents, or anybody with living
with Alzheimer's disease anddementia, and then the second

(15:16):
doctor that I'm going to shareher insight with you. Her name
is Dr Brittany lamb, and I reada lot of her insights as well.
Now she is an ER physicianhelping dementia family
caregivers, but she's peace ofmind in their decision, she's an

(15:42):
educator, maker and advocate.And in this particular piece,
somebody wrote in and said, Hey,Doc, meaning Dr lamb, do people
living with dementia feel pain?And I wanted to address this
because I am asked that questionall the time, and of course, I

(16:07):
give my answer, and it's basedon my research, my experiences,
and what I've seen from apsychosocial perspective, she's
answering this question from ascientific and medical
perspective, and the answer is100% yes, they do feel pain. And

(16:33):
the reason why I think this isreally important is because I
have a friend whose husband wasdiagnosed with early onset
dementia, and when it finallycame to the end of his disease,
he told his wife that he wasexperiencing headaches, and the

(16:56):
hospice nurse told my friend,that's impossible. People with
dementia don't feel pain, and Iknew that was not correct, and
he would not believe it, becauseshe could tell that he was in
tremendous pain. So anyway, ifany of you have ever wondered,

(17:20):
yes, you're hearing it straightfrom the medical doctor's mouth.
They do absolutely feel pain.Now, she also says they may
struggle to tell us where theyare feeling it, but they do feel
it, and we've talked a lot aboutthat, how to recognize their

(17:43):
unmet needs and to recognize ifthey are uncomfortable or in
pain or just, you know, needsomething. So one tip that she
has for caregivers and carepartners is to pay attention to
the person's nonverbal cues. Youstart learning them now, and
I've gone over this as well,dementia or not, people do some

(18:07):
of the same things, nonverbally, and she says, and
they're the same things Idescribed in another episode, We
grimace, we breathe heavily, wehold our breath, rub the area,
we let out moan, we sweat, wevomit, and we roll around so we

(18:32):
want to recognize and treat painwhen it is the cause of a change
in someone's behavior, becauseuntreated, it can increase the
risk of delirium. So that is Drlamb's perspective on whether

(18:52):
people living with dementia dofeel pain. And I'm glad that I
found a reference to justreinforce that this is
absolutely true. They feel a lotof things that some of us are
not actually even aware of. Theythey may it may not be obvious

(19:14):
to us, but it's absolutely true.So that is the information for
today's episode I am going tonow share with you my what news
and the title of this chair
is excess dementia relateddeaths declined in second year

(19:38):
of covid 19 pandemic. I knowthat kind of we're at the tail
end of the pandemic, but youknow, you are hearing a lot
about it in the news these daysbecause we're expecting a
resurgence of a wave of it. So Ithink this is really. Really

(20:00):
invaluable information to knowdementia related deaths rose
substantially during the firstyear of the covid 19 pandemic,
but still in the second year,the decline during year two
appears to largely be due todecrease the covid in nursing

(20:23):
home and long term caresettings, according to an Nia
funded study published in theJama neurology research from the
University of California SanFrancisco and other
institutions, analyzed deathcertificates of more than 2

(20:43):
million adults 65 years old andolder that mention Alzheimer's
disease or a related dementiafrom the National Center for
Health Statistics mortalitysurveillance system. Next they
analyze the US Census Bureaupopulation estimates program

(21:06):
data from January 2014 toFebruary 2020 to estimate the
number of dementia relateddeaths that would have been
expected had the pandemic nothappened, the difference between
expected and actual death duringthe first year, which was March

(21:26):
2020, to February of 2021, andthe second year, which was March
2021, to February of 2022, ofthe pandemic were considered
excess deaths. Now to understandhow the availability of vaccines
influence excess mortality, theresearchers analyzed covid 19

(21:51):
vaccination data from the USCenters for Disease Control and
Prevention covid data tracker,in addition to examining the
overall population, theresearchers analyzed data on
age, race, ethnicity and placeof death. In the first pandemic

(22:11):
year, there were nearly 95,000excess dominance related deaths,
and then the number declined by77% in the second year to
approximately 22,000 excessdeaths. So in the first year, it

(22:33):
went from 95,000 to 22,000 inthe second year, significant
year two declines occurred forall demographic groups and was
associated with the vaccinerollout. In states with faster
vaccine rollout and greatercoverage, there were larger

(22:56):
reductions in excess dementiarelated deaths, so all groups
experienced declines in yeartwo, not everyone experienced
the same level of decline.Nursing Home and long term care
residents experienced thelargest decrease in year two,

(23:18):
excess deaths, while thoseliving at home only experienced
modest declines. This maysuggest that older adults with
Alzheimer's or a relateddementia living in the
community, rather than innursing and long term care
facilities, may not have equallybenefited from covid 19

(23:42):
prevention efforts, racial andethnic disparities in death were
also apparent throughout thepandemic. Now, to conclude this,
they say, examining the numberof additional deaths related to
dementia during the pandemic,and observing any fluctuations

(24:06):
can offer valuable insight intothe effectiveness of covid 19
prevention and treatmentsdeveloped in the initial Year of
the pandemic, particularly insafeguarding older adults. Now a
limitation of the study was theuse of death certificate data

(24:28):
from 2022 that had not yet beenfinalized. So the next step may
involve investigating thereasons behind the persistently
high number of excess deathsamong older adults with dementia
who lived at home throughout thepandemic. Additionally, these
findings highlight the need toidentify measures that can help

(24:51):
reduce disparities in excessdeaths among various groups. So
there you have it. I think. Thatstudy definitely supports the
value of the vaccines. A lot ofpeople, I think, are still under

(25:13):
the misconception that theyreally were ineffective because
people still get covid. This istrue, people do still get covid.
The difference is, before thevaccine, the death rates were
out of control. After thevaccine, the people who were

(25:36):
vaccinated were less seriouslyill and survived, had a very
high survival rate, and there'syour difference. Okay, so the
reference for that study is ChenR et al, excess mortality with

(25:57):
Alzheimer's disease and relateddementias as an underlying or
contributing cause during thecovid 19 pandemic in the US Jama
neurology 2023, if you want tolook that up and read that for
yourself, okay, well, that isgoing to conclude this episode

(26:21):
for the truth, lies andAlzheimer's Show. I'm your host,
Lisa Skinner. I will be backnext week with another new and
informative episode andhopefully information that you
will find worthwhile andvaluable. And I want to thank

(26:41):
all of you again for taking thetime to listen today. And you
know, I've said this many times,there is so much to cover, and
I'm going to share everythingthat I can find, to share with
you through my experience, myknowledge and my research to
keep you updated on the latestinformation pertaining to living

(27:07):
with Alzheimer's disease andrelated dementia, if you as a
family member or caregiver aregoing through this journey now,
I hope that the tips andstrategies and insights that I'm
able to share with you does makeyour world a little easier to

(27:30):
live in, and I hope that ithelps you provide a high
quality, purposeful andmeaningful life for your loved
one living with Alzheimer'sdisease. So again, remember what
I like to say, dementiaawareness is every day, and the

(27:53):
kindness is the ability to speakwith love, listen with
compassion and act withpatients, all very necessary
attributes to have in order tooutlast Alzheimer's disease.
Thanks again for being with us,and we'll be back next week with

(28:14):
another new episode of truthlies in Alzheimer's show.
Thanks.