Episode Transcript
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Lisa Skinner (00:00):
Hello to all of
you who have tuned in to listen
(00:03):
to this episode of the truth,lies and Alzheimer's show. I'm
Lisa Skinner, your host, and I'dlike to shout out a very warm
welcome to all of you who havejoined us here today. I really
appreciate you taking the timeto listen. The purpose of this
show is to talk about everyaspect of Alzheimer's disease
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and dementia that's going toinclude the good, the bad and,
yes, the ugly. My goal is to getto the truth, dispel the lies in
this and unveil what I call thesecret faces of Alzheimer's
disease. This way you'll have abetter understanding of what
(00:53):
it's truly like to live with abrain disease like Alzheimer's.
My hope is to zoom outside theparadigm of people believing
that it's exclusively a memoryloss condition, and to shift
their understanding of just howdramatically this disease
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impacts the lives of those whohave it, as well as their
caregivers and family members.Well, for that matter, anybody
who is involved in the life of aperson living with dementia. My
story started almost 50 yearsago when my grandmother began
displaying some very strangebehaviors. She insisted that
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there were birds living in hermattress, and that they would
come out at night and peck herface. She insisted that she saw
rats running along her walls andthat they were going to invade
her house. She talked about themen who were trying to break
into her home to not only stealher belongings, but they were
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there to harm her. Well, itturned out that this was the
beginning of our 20 year journeywith my grandmother and her
Alzheimer's disease. So fastforwarding, a few years I became
a behavioral specialist, and Ihave spent the last 30 years
helping family members andcaregivers understand the
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devastating effects of thisdisease so they too, could learn
how to best live with theunexpected surprises that emerge
day to day. That way, they canspend time focusing on what
truly matters, which, of course,is spending quality time with
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their loved ones. And I am herefor you now. I've also authored
several books on the subject,written a training program, and
believe it or not, havepainfully watched eight of my
own family members fall prey toone of the brain diseases that
causes dementia. I'm also acertified Dementia Care trainer
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through the Alzheimer'sAssociation, and I'm a certified
dementia practitioner. I havecome to realize, and you
probably do, too, if you're onthis Alzheimer's disease
journey, that there are so manyaspects of living with dementia
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that are unexpected and theysurface out of nowhere at any
time. Well, these are what Icall the hidden or secret faces
of Alzheimer's disease, and asmany of you know, they do show
up unannounced and arecompletely unpredictable, and
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that's why it's so important tobe prepared for anything that
emerges on this journey. Ibelieve that knowledge is power,
and I am here to arm you withthat knowledge, so you too will
have the power to negotiate themany challenges you will face
having a loved one or whilecaring for someone with
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dementia. You know, living withdementia is unlike anything
anybody could ever imagine.Think of it like falling into a
rabbit hole, like Alice inWonderland, and entering a world
unlike anything you've everknown, one that is completely
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unfamiliar to you. Well, thatsaid it's equally important to
not only understand what willoccur on a day to day basis, but
why these things occur, what ishappening to the person's
changing brain as they progressthrough the various stages of
Alzheimer's disease, and that iswhat I'm here. To offer you a
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better understanding about whatliving with Alzheimer's disease
is really like, and only thenwill you be prepared to for what
challenges lie ahead. And youknow what that is the key to
being prepared and to not beingcaught off guard. So on today's
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episode, I want to talk to youabout what is called the person
centered approach to care whatexactly is it and why is it
important? I've been practicingthe person centered approach to
care for decades now, and I wantto tell you that I feel very,
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very, very fortunate that I wasintroduced to it and learned
about it and implemented itearly on in my career as an
elder care counselor. It is soimportant, and it really, from
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what I've seen and personallywitnessed, it has made a huge
difference in the quality oflife that people experience
living with Alzheimer's diseaseand related dementia. So relax
and sit up in your chair, and Iam going to explain to you why I
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firmly believe in this approachto care and why it's important
what I've discovered practicingthe person centered approach to
care. So it means that knowingwhat is important to an
individual and working theirlife and care plan around the
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individual's wants and needs,instead of focusing exclusively
on the disease, in other words,just to focus exclusively on the
symptoms that they'redisplaying, but get to know the
individual person in a verydetailed and personal level.
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This includes offering choicesand benefits as well as care
options and strategies based ona person's personal wants,
needs, likes and dislikes. Thisapproach has shown to fulfill a
patient's needs beyond theirdisability or ailment, as well
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as improve their quality oflife, and extremely important
when caring or communicatingwith a person living with
dementia, for them, itdemonstrates respect that they
have their own views on what'sbest for them, that they have
their own values and prioritiesin life, and that maintains
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familiarity that is such acrucial part of their everyday
lives, these care plans andstrategies are adapted to their
expectations and preferences andnot the other way around. By
doing so, it enables thepatients to retain their dignity
and autonomy during an alreadychallenging time. So these are
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the four principles of personcentered care, to treat people
with dignity, compassion andrespect.
The patients often lose theirindependence when they enter
care, which puts their dignityat risk. However, person
centered care enables a personto maintain their dignity by
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respecting their wishes andtreating them with compassion
and empathy. To fulfill thisprinciple, patients must be
allowed to own their ownthoughts, feelings, opinions,
beliefs and values, because theydon't just suddenly become
invalidated by their care needs.Respecting their personal
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qualities helps them feelvalidated and cared for much
more wholly, both physically andmentally. The second principle
is providing them withcoordinated care, support and
treatment. So it's veryimportant to record their
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personal information into ajournal or care plan and share
it with other caregivers, thecaregivers or family members
should communicate thisinformation with one another to
build a shared understanding ofhow to deliver this person
centered care. The thirdprinciple is to offer
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personalized care, support andtreatment. This. This principle
is truly at the heart of aperson centered approach to
care, and it will enablecaregivers to understand what
works for each individual personbased on specific situations.
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You've heard me say in previousepisodes that if you've met one
person with Alzheimer's disease.Guess what? You've met one
person with Alzheimer's disease,and as I've stated before, it's
because every single personexperiences the stages of the
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disease and progresses throughthe disease in a little
different way. So if we havedetailed information about the
people, we can avoid so manystressful situations by being
prepared with the tools in ourtoolbox that we will have ready
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based on their personalinformation. The last principle
is to enable caregivers torecognize and develop a person's
strengths and abilities so theycan live independent and
fulfilling lives. And trust me,I have seen this principle do
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exactly that, providing PersonCentered Care involved to
patients in decisions and helpsthem take action to support
themselves whenever possible.This helps them to develop their
own capabilities and anunderstanding of how to look
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after themselves and to stay asindependent as possible through
each stage of their disease. Nowthis definitely becomes a
challenging fine balancing actas they continue to decline, but
trying to force patients to domore on their own can surely
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cause anxiety and frustration.On the other hand, too much
involvement makes them feelirrelevant and useless and can
literally turn them into aninvalid so why is this important
in providing a more meaningfullife? Well, the people suffering
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from Alzheimer's disease andrelated dementia will feel more
comfortable and confident.They'll have more trust in you
that you're doing what's bestfor them, and therefore they
will be less resistant to yourhelp. This, of course, will make
any situation easier for both ofyou. You will meet their
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emotional their social andpractical needs, which ensures
that they maintain a higherquality of life. You can support
those who may not be able todirectly communicate their wants
and needs. Person Centered Carehelps you find suitable ways to
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communicate with them and tohelp them to communicate with
you, especially when they can nolonger articulate their wants
and their needs and that willmaximize their quality of care.
Now, family members, caregiversand people living with dementia
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deserve to live a fulfillinglife and feel positively despite
the challenges and stresses thataccompany living with this
disease. I want to go over a fewthings that would be helpful for
everybody to gather this type ofinformation. It's a behavioral
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history and social assessment.So obtaining this information,
you can provide very importantinformation. You can design
activities around what you knowthey like to do in the past
about each individual person,the history questions elicit
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information about their historyof such behaviors as wandering,
agitation, assault, sexualbehaviors, elopement, and many
others. The history can beobtained from the resident and
family at the same time youconduct your social assessment
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and gather requested informationfrom you know, hospitals and
nursing facilities, daycarecaregivers, spouses, family
members, friends, because everylittle nugget that you gather
about a person is going to come.Come in handy when different
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situations arise, and I willexplain that in detail over the
many episodes that we're goingto cover this information moving
forward. So a social assessmentprovides valuable information
about a person in their socialcontext, examples of information
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obtained in the socialassessment include their customs
and practices, their beliefs,their fears and joys, their
family history, things that theymay be attached to, and how well
they socialize and availabilityof family and friends to provide
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support. Now, obtaining detailedinformation about the person,
their background, theirpersonality, their likes, their
dislikes, etc, helps us provideoptimal care. It also helps us
to design appropriateactivities, and it enhances
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communication. So let's take alook in more detail about what
information you want to try togather from the social
assessment. Is the residentoutgoing? Are they social? Are
they quiet? Are they physicallyactive? Do they have a favorite
food, hobby or sport? How dothey respond to stimuli? How do
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they respond to assistance? Howdoes the resident relate to the
family? Do they have children?Do they practice a religion, and
if they do, what religion dothey practice? How do they like
to celebrate the variousholidays? What do they like to
wear? Are there any significantlife events that the family can
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share that might triggerbehaviors at any time. How do
they respond to stress? How dothey display their emotions?
What is their general demeanor?Or at least, what was their
general demeanor prior to theirbrain disease? How do they react
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to discomfort and pain? Whattype of entertainment Do they
like? What type of music do theyenjoy? What level of education
did they complete? That'sactually an important question.
How do they respond to animals?I'll give you an example. My
mother couldn't stand pet sothat's one thing I would never
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have introduced to her pettherapy. So that's an important
piece of information to gather.Would the resident strike in a
given situation? In other words,become combative and try to hit
or strike out. And are you awareof whether or not they're able
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to make their needs known? Theseare just a few of the very
important information or nuggetsfor you to gather, have ready in
your toolbox to you in many,many, many of the situations
that you will inevitablyencounter throughout this
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journey with your loved one.
And as we continue with theseinformational episodes, you will
understand why, in the storiesI'm going to tell you and the
examples I'm going to give you,and in the very detailed
information that I will provideso you will be able to connect
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all the dots and see the bigpicture of Just how this disease
impacts people who suffer fromit. Next, I want to just give
you a little background of howthings changed and have changed
and continue to change since mygrandmother's diagnosis 50 years
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ago, back then, when peoplestarted displaying the types of
symptoms that I described toyou, that she did with me,
people were medicated. Peoplewere over medicated. That was
customary, and to the pointwhere they were almost like a
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zombie or in a comatose state.This was very, very common. They
also used restraints on peoplewho suffered from well at that
time, I told you, they called itsenile dementia, but it is
synonymous. With today'sAlzheimer's disease and the
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other brain diseases that causedementia, then we move to what
was called reality therapy, orI'm going to explain to you what
that means, but it simply didnot work. Then a woman by the
name of Naomi file introducedwhat is currently called
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validation therapy, also knownas joining their reality
therapy, adapting our world totheirs, and also using
reminiscence therapy and lifestations, and I will explain all
of these to you between thisepisode and upcoming episodes.
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So let me start with what isreality orientation therapy?
Well, reality orientationtherapy also known as RO, is a
treatment strategy. Was atreatment strategy, but it is
still used. First described in1966 as a rehabilitation method
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for confused elderly patients.The therapist would present the
patient with continuousreminders about the date, where
they are, where they exist,personal details about them,
about their life, about theirlikes and dislikes. A therapist
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and a patient would discussrecent events and their daily
routine. The goal in this was toground the patient in the
presence, while also fosteringsocial interaction. For example,
if they were wondering wheretheir parents are because their
short term memory switch flippedoff, and they're now pulling
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from their lungs to memories andbelieve that they're a child
living with their parents, theywould be told under reality
orientation therapy that theirparents are no longer living if
they weren't or that they can'tgo home because they no longer
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live in that childhood home withreality orientation therapy, the
goal of the therapist was toreduce confusion and
disorientation in dementiapatients. They believed that the
patients would gain a strongerunderstanding of their
surroundings and their placewithin them, and would lead to a
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greater sense of control andincreased self esteem. But guess
what? It did not work. What itdid do was cause anxiety and
even scared people, especiallyif they didn't remember that a
loved one had passed away. Youknow, this could be like they
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were hearing it for the firsttime, and could be sent into a
panic. Also, arguing withsomeone who has dementia is
futile and will often escalateinto a more serious situation.
These are what we callcatastrophic reactions to them.
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We might as well be calling thema liar and taking away any sense
of control they may have intelling their story. Keep in
mind, they believe 100% thatwhat they are telling you is not
true, even if it doesn't makesense to you, it makes perfect
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sense to them. Reality,orientation, therapy focused on
presenting patients with thecurrent facts about time, the
date and their currentenvironment, so patients who
lived in a dedicated facility,like a memory care unit or
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assisted living or a skillednursing facility couldn't
receive this therapy 24 hours aday. So this meant that during
every interaction, thehealthcare workers and
caregivers, when they wereinteracting with the residents,
those workers were emphaticabout reinforcing the current
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dates, times, locations andcurrent events with the
residents. The caregivers wouldeven read the newspaper and
watch TV with the patients toreinforce their reality. But
unfortunately, they werereinforcing their. Reality, the
reality of the caregivers withthe healthy brains, not the
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reality of the patients and theresidents who had the damage
changing brain. And that is thedifference. There may also be
signs declaring the date theywould have multiple clocks in
the room, they would emphasizecurrent events, seasonal
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festivals and other ways to dowhat they considered to be
grounding social interactionwith reality. The second therapy
that I talked about is calledvalidation therapy, also known
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as join their reality. And thatreally what it boils down to.
It's the opposite of realityorientation therapy. It is
literally adapting the world ofthe person with the healthy
brain to the world of the personwith the damaged brain. Instead
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of doing what realityorientation therapy tried to do
was force them to adapt to ours.And as I said, it did not work.
So validation therapy wasdeveloped by Naomi file after
relocating to Cleveland with herparents from Germany, where her
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father served as anadministrator and her mother as
the head of the social servicedepartment at the Montefiore
home for the aged. Naomifollowed in her parents
footsteps and began working withthe elderly after receiving her
master's degree in social workfrom Columbia University, after
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experiencing dissatisfaction andfrustration with traditional
treatment methods used withdisoriented elderly dementia
sufferers. File developed whatwe know today to be validation
therapy. She's written two bookson the subject and about the
techniques that she uses. Thefirst book was called validation
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the file method, and the secondis called the validation
breakthrough.
Validation therapy is a methodof therapeutic communication
which can be used to connectwith someone who has moderate to
late stage dementia. It placesmore emphasis on the emotional
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aspect of a conversation andless on their feelings and
beliefs. It is a centeredapproach to care around a
person's needs by employingempathy and respect validation,
therapy helps a person withdementia feel supported and
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understood and restores some ofthe dignity that dementia has
taken away from them. Thepractice of embracing the
reality of a person living withdementia has multiple uses and
benefits for those living withthe disease. It reduces stress.
It reduces pain of loss for boththe caregiver, the family
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members and the person receivingcare. People with dementia do
not need to be grounded inreality, and it does no good
anyway, adapting to theirreality, versus forcing them to
adapt to ours makes them feelmore safe and secure in the
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moment. You're acknowledgingthem, you're validating them. It
has been successful inredirecting them so they are no
longer concerned about thesafety and whereabouts of their
loved ones, so they can, inturn, enjoy the moments with
you. When we engage them intheir stories of the past, we
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learn and connect with them ontheir terms, not on ours. You
know, it's not uncommon forindividuals who are living with
dementia or Alzheimer's to oftenspeak of their younger years as
if it was their current reality.Think again about that light
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functionality that I'vedemonstrated to you in a
previous episode. They oftentell stories of their childhood
home, of their parents, and willeven feel the need to go home
and make dinner for their youngchildren. Sometimes the need for
this reality is so great thatthey become anxious and even
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angry when they can't find whatin their mind. Should be there.
So imagine how trapped andpowerless they must feel in
these moments. How would youfeel if you woke up one day and
everything you knew and lovedwere no longer there, or if your
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once routine and purposefullives was just a distant memory.
That's what it's like for them.So understand that going along
with their current belief offersthem comfort, security and peace
of mind. We know that there isnothing we can say that will
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alter that current belief untilthat short term memory switch is
flipped back on. So if they askyou where their mother or father
is, a suggestion is to tell themthey're at the store and we'll
be right back. If they ask youor tell you that they need to go
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home. Perhaps you can redirectthem in that thought by saying
something like, Well, right nowit's too cold to go outside. Or
you can ask where their childrenare, and you can tell them that
they're still at school.Understand that as humans, one
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of our very basic needs is to beloved, accepted and to feel
validated. It's an innate needthat does not diminish with
dementia. On the contrary, thatneed for acceptance may be
increased since their worldshave been turned upside down,
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and validation therapy has beenproven to be successful in being
able to provide a higher qualityof life in the lives of those
living with Alzheimer's diseaseand dementia. Let me share with
you now a real life situationalstory from my book truth, lies
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and Alzheimer's at secret facesthat illustrate this concept of
what I have just explained toyou. This is the Mary Ann story.
Quite often, people withAlzheimer's disease display
repetitive behavior, such asrepeating a word the same
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question, a story or anactivity, they repeat it over
and over and over again, orthey'll do something and then
undo what they just completedand started over and over and
over again. In most cases, theyare more than likely looking for
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comfort, security, familiarity,or they're just plain bored.
Repetitive behaviors aredemonstrated by people with
dementia because they may beunable to remember recent events
or actions due to their shortterm memory loss. Remember the
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short term memory switch iseither flipped on or flipped
off. They may also repeat wordsor gestures as a means to soothe
themselves. The behaviors thatyou see may also be an attempt
to communicate an unmet need oralert you to a physical
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discomfort. Well, Mary Annhappened to be my mother in law,
and she loved to fidget withtissues. She would meticulously
fold those tissues into neatlittle squares and then put them
in her purse, and then she'dclose her purse. Moments later,
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she would take out the foldedtissue. She would unravel it,
fold it again, and tuck it backinto her purse. Fold, tuck,
repeat, fold, tuck, repeat, overand over again. But this
activity would keep her occupiedfor hours, and she seemed
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perfectly content doing it, butone weekend, when it was our
turn to look after my mother inlaw, she was sitting on the sofa
with me in our living room, andwe were watching the nostalgic
Andy Griffith Show. She lookedpeaceful for a time, folding her
tissues and tucking them awayinto her purse. But then all of
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a sudden, on the turn of a dime,her whole entire demeanor
changed. All of a sudden, sheanxiously stood up from her
seated position on the sofa anddemanded that I take her home.
She asked me Stern. Me, doesMarty know where I am? He's
going to want his dinner. I'vegot to get home to him. I'm
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thinking in my head, did shereally just ask me where Marty
was? Oh, my goodness, you see,Marty had passed away four years
earlier. Well, my initial kneejerk response was that I wanted
to remind her that Marty hadpassed away, and to pull her
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back into my reality. After all,she was my mother in law, and I
wanted to correct her falsebelief because I wanted to make
her better, but I knew betterthan to react that way. So
joining her reality was reallymy only option in this scenario.
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Yes, he knows you're here. Itold her. I just called him, and
he knows I'll bring be bringingyou home very soon. Are you
sure? She replied, Yes, MaryAnn, I'm certain. Well, okay, if
you're sure, I just don't wantthem to be worried about me or
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to be hungry. So she sat backdown on the sofa, refocused her
attention on the Andy GriffithShow, and within a few minutes,
she was back to
fold, tuck, repeat, fold, tuck,repeat, opening and closing that
purse. But she looked very calmand peaceful again, and although
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I felt conflicted by joining herreality and feeling compelled to
reassure her that Marty was okayand waiting for her at home, I
knew that correcting her couldhave caused her a lot more pain
and grief in her mind, knowingthat her husband was okay with
her being over at our house,relieved her concern at the
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moment and brought her therelief that she desperately
needed to hear. After all, shebelieved that what she was
telling me was true at thatmoment in time, and there was
nothing I could have done thatwould have relieved that anxiety
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she was feeling in response tothe false belief she was having
of him still being alive andwell and waiting for her at
their home, choosing the otheroption of trying to correct her
false belief surely could havebackfired. And hearing me tell
her that he was no longer livingcould have shocked her. It could
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have been like he didn't knowthat he had passed on and that
nobody had told her and they hadkept it from her. I mean, just
all these ideas going throughher mind and creating a panic
for her, seeing her calmnessafter telling her what I did,
definitely reassured me that Idid the right thing. Well, I
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knew Mary Ann would never be hernormal self again, but at least
the way I knew her before herAlzheimer's disease, this was
her new normal, but somehow Idid find comfort in knowing that
she'd never be normal again, butthat she would be Okay, as we
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heard in our story. Mary Ann,people with dementia can seem
perfectly fine one moment and inthe next out of nowhere, they
can be anxious and detached fromreality. This can be one of the
most troubling behaviors forfamilies and caregivers to deal,
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to deal with. The difficultystems in part, from not wanting
to see our loved onesuncomfortable, from not knowing
how to handle a problem thatonly exists in their mind,
watching them lose touch withreality that is a normal
progression of the disease, andagain, this is due to the short
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term memory diminishingthroughout the course of the
illness. Mary Ann believed thather husband was still alive.
Your loved one will likely havea different false belief.
Remember that no matter what youcannot dissuade the person from
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the belief that they're havingin that moment, therefore,
exploring joining their realityis the most effective approach
to that occurrence. Right? Theessence of the approach is to
acknowledge their reality andthen divert their concern. In
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Mary Ann's case, this meantacknowledging that her husband
was at home, but explaining whythere was no reason for her to
be worried. The situation withyour loved one may be different,
but you can use the acknowledgeand divert approach for many
similar situations.Additionally, what you heard was
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Mary Ann exhibited repetitivebehaviors, which are also
extremely common with dementia.Hers was fold, tuck and repeat.
Now your loved one may repeatwords, activities, questions or
stories in the sameconversation. They may also pace
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around a room. These types ofbehaviors are often a coping
mechanism for dealing withstress or fear, but it certainly
can be annoying for caregiversand family members, so do what
you can to redirect them, but aslong as the behavior is safe,
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eliminating it is not missioncritical. Our brains process
information in different ways.We do this through abstract
thought or through concretethought, and we rely on these
thought processes every day. Nowthis ability is lost in this
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Alzheimer's disease and otherrelated dementia. This means
that the many concepts that werely on to live in this world no
longer have meaning for a personliving with dementia. So in
future episodes, I'm going todiscuss ways in which we as
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caregivers and family memberscan help our loved ones make
better sense of the world thatthey are living in. According to
the Alzheimer's Association, thepast and the future are held in
order by the power ofabstraction. Time is abstract,
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being able to think about thewhat ifs in our lives relies on
abstraction. How much is a partof abstraction and the
connection among family membersand friends are abstract. Like
the other powers of thought,abstraction declines with the
progression of the dementingdisease, disability is lost
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early in the disease. So thismeans that many of the concepts
we rely on to live in this worldno longer have any meaning for a
person living with dementia. Isure hope you've enjoyed the
information that I've sharedwith you today, I want to thank
you again for listening. We haveso much to cover in our upcoming
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episodes, and I do want toprovide you with information
that you will find helpful andvaluable throughout your
journey. Remember, dementiaawareness is every day, and
kindness is the ability to speakwith love, listen with
compassion and act withpatience. These are all very
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necessary attributes to have inorder to outlash Alzheimer's
disease. One last note, thisshow is about you and how my
experiences, expertise andstrategies will be able to help
you and your loved one have aneasier time while struggling
(43:53):
through this disease. I know howdifficult it is, therefore, I'd
love it if you would send meyour comments and suggestions on
what topics you'd like me tocover on this weekly show. You
can send them to dementiawhisperer one@gmail.com if
(44:15):
you're listening to this onYouTube or if you got here
through our social media page,please leave your comments or
questions, and I promise I willdo my best to address them. I
genuinely look forward toreceiving your thoughts and
ideas, and in the meantime,always take care of you. Talk to
(44:35):
you next week.