Problems Family Caretakers Face When Caring for Loved Ones Suffering From Dementia

What can we learn when we reflect on these case studies of people who
suffer from dementia and their family caretakers?
Is dementia a disease that you catch, that one day may be magically
cured, or is dementia a condition that is an extreme case of the cognitive
decline we all experience as we approach our sixties and seventies?
Why are the dysfunctions of relationships between the dementia patient
and their family caretakers enhanced and aggravated by the cognitive
decline of the accompanying dementia?
Why do caretakers so often tussle with their loved ones who suffer from
dementia, when they know that their dementia has robbed them of their
short-term memory?

Please, we welcome interesting questions in the
comments. Let us learn and reflect together!
We will discuss the sources we used at the end of
the video.
Feel free to follow along in the PowerPoint script we
uploaded to SlideShare.

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Why is the book, Travelers To Unimaginable Lands, needed? Norman
Doidge, who wrote the forward, explains, “none of the mainstream drugs
for dementia disorders does much to reverse cognitive decline, except to
offer a few months of lessening symptoms.” There will be no magical
cures. His argument is that the idea that Alzheimer’s is caused by
excessive amyloid plaques in the brain “is woefully inadequate to explain
the disease,” it is more complicated than that. Although dementia cases
caused by drugs, dehydration, or a vitamin deficiency are sometimes
reversible, those dementia cases caused by cognitive decline are
irreversible. Usually, treatments for neurological conditions can only
delay the decline, they cannot reverse the decline.

Drawings of
patients with
dementia, 1896

For many of our videos on dementia we feature celebrities who
suffered from this condition. Margaret Thatcher and Sean
Connery were diagnosed a few years before their departure,
Thatcher died at eighty-seven, and Sean Connery died at ninety.
Ronald Reagan had a long and productive life; he was seventy
when his two terms in office began. Early in his Presidency he
survived an assassination attempt where he was shot in the lungs
and nearly died, whether this was one trigger for his eventual
Alzheimer’s is anyone’s guess. Five years after his Presidency he
was diagnosed with Alzheimer’s, he passed away ten years later.

Many of his political opponents speculate whether Reagan
displayed signs during his last years as President, all
attending physicians affirmatively deny this. But one
theme of the book we will be reviewing today paints a
different picture, a picture where dementia does not one
day just happen to the patient, but where rather
someone’s compromised demented behavior slowly
evolves and transitions from their normal behavior. So, it is
really pointless even to speculate on such questions, no
good can come from it.

To clarify, there are many types of dementia, but
Alzheimer's patients comprise over seventy percent of
dementia cases. Also, dementia first robs the patient of
their ability to remember recent events, even from five
minutes ago, but long-term memories are more durable.
Also, dementia robs the patient of their moral compass,
since they are not as able to regulate how their emotions
influenced their behavior. About seven percent of the
elderly over sixty will suffer from dementia in their
lifetimes.

Odds of Developing Dementia
What are the odds of
developing dementia? Over
65, one in fourteen; over
80, one in six, average of
seven percent over 65.

This book compares the dance between the
dementia patient and the loved ones who are
their caretakers where they seem to have the
same arguments over and over again, the
“Alzheimer’s patients seem unable to learn
from their mistakes. But it is also, because,
weirdly enough, caregivers experience the
same problem. In an uncanny mirroring, the
caregivers get pulled into a parallel process
with their charges, forgetting what happened
yesterday, repeating what didn’t work last
time, becoming ever more prone to agitation
and impatience, even as they are engaged in a
trial of devotion that pushes love to its limit.”
Eddie Albert of Green Acres suffered from Alzheimer’s

We saw this dance in Kim Campbell’s excellent biography
of the last years of Glen Campbell, her husband, who
suffered from Alzheimer's. Whenever the brain suffers
from any type of loss, it has amazing powers of self-healing
and rewiring to bypass the problem. The old personality
does not disappear, any dysfunctions in the relationship
simply morph into baffling new behaviors. The patient,
until the very end, does not lose the ability to push your
buttons.

This is a touching story, the last album Glen Campbell
recorded included lyrics that explored how frustrating it
was to live with Alzheimer's. They asked the doctor:
Should he embark on a last farewell tour? The doctor
encouraged him to tour as long as he was able, keeping
him active would slow down the progress of his dementia,
and music often calms the patient. They asked Glen what
would happen if he said or did something embarrassing:
How to respond? Glen simply said: “Tell everyone I have
Alzheimer’s,” then they will understand.

Like Glen Campbell, Tony Bennett insisted on touring
as long as he could, also cutting a farewell duet
album with his good friend, Lady Gaga. Rita
Hayworth was the first celebrity to admit to an
Alzheimer’s diagnosis, her daughter is a board
member and fundraiser for the Alzheimer’s
Association.

How did I first become aware of dementia? When I
intervened to stop the foreclosure of a destitute owner so
he could be appointed a guardian by the court. The
guardian placed him in a compassionate lock-down facility
for Alzheimer's patients, and then sold his unit and paid his
debts. Many in the community were fed up with his
demented behavior, his only family was an estranged
sister. That is all I know, perhaps they were estranged for
decades, but I just cannot help but wonder: Did his
demented behavior also drive her away?

Stories: Travelers To Unimaginable Lands
British PM Margaret Thatcher and Ronald Reagan suffered from Alzheimer’s

When we think of dementia as a disease, we picture it as something that
the elderly person catches that makes them different than they were
before. When you view dementia in this manner, you tend to assume that
their puzzling behavior is totally new behavior.
But the overriding theme of this book is that this behavior is not totally
new behavior, the baffling behavior is their old irritating behaviors that
carry forward and evolve into more extreme forms as the condition
progresses. All of us have irritating quirks that irritate those around us.
Whatever dysfunctions exist in the relationship between patient and
caretaker, especially when the caretaker is a loved one, become more
pronounced and intractable as the condition progresses.

We all suffer cognitive decline, many become more forgetful as they get
older. For those of us who have always been forgetful, this transition may
be less noticeable. Psychologists have proven that everyone’s response
time, or the time taken to solve puzzles, also known as executive
functioning, slows considerably in our retirement age in our sixties and
seventies and beyond.
What is often new behavior is the anger that many dementia patients
feel that often causes them to lash out at their caretakers and those
around them. These angry emotions are caused by the frustrations of the
disease or may be caused by the patient not being able to take care of
themselves: maybe they haven’t eaten, maybe they are not feeling well,
maybe they have a urinary tract infection from not drinking enough, and
often they have not been to the doctor lately.

The author, Dasha Piper,
notes that the narratives
between the patient and
the caregiver caused by
these dysfunctions “can be
surprisingly resilient even
in the face of neurological
damage. The ‘personality
knowledge’ that forms our
self-image is not easily
damaged by dementia.
What is affected, however,
is the ability to update this
self-image.”
Estelle Getty, who played Sophia in Golden Girls, suffered from Alzheimer’s

This means that the dementia patient remembers himself as he
used to be, but he does not remember how he was yesterday or
this morning. Often, he loses both his short-term memory and his
moral compass, guided only by his raw emotions. When his
caretaker is a loved one, they remember the patient as they were
before, and often become angry at their behavior, forgetting that
they are at the mercy of their dementia, that they little control
over their behavior, as their emotions now govern their behavior
directly. Then the caretakers feel guilty about their anger.

Sometimes caregivers blame
themselves for not spotting
dementia earlier. But, as the
author notes, “although clear-cut
signs of Alzheimer’s: incoherence,
sexual inappropriateness, getting
lost in familiar places, paranoid
delusions, even physical violence,
are often present, family members
still hesitate to make the leap to a
neurological diagnosis.”
Casey Kasem, the American Top 40 DJ, suffered from Alzheimer’s

Miami Beach Holocaust Memorial
Dementia Patients and Family Caregivers

These patterns are seen in the first chapter, where
Mr Kessler, the patient, was a survivor of the Nazi
concentration camps. This patient the author had
helped care for earlier. This traumatic experience
made him obstinate, and overinvested in and over-
critical of his musician son Sam.

Our author says that
“Mr Kessler didn’t mind
Sam ‘making noise’ in
the house, but playing
music was no way of
making a living. Sam
needed to get a job first
and play music second.”
As Mr Kessler’s
dementia advanced,
their roles reversed, and
Sam became more
demanding, becoming
angry in response to his
father’s needling.
Miami Beach Holocaust Memorial

The second chapter described Mila, a dementia
patient who lived in poverty in Soviet Russia before
moving to America. Mila was obsessed with her
possessions, even before her dementia she would
barge into her daughter Lara’s room demanding that
she help her look for her stockings or towels.

Soviet Kulak women in a forest cutting, 1933

The author stated that
“Mila turned her
daughter into a secure
base that she had been
deprived of. For Mila,
the world was a chaotic,
scary place, and Lara
was her lifeline.” As
Mila developed
dementia, her
insecurities worsened,
and her behavior
became more erratic. Starved peasants in Kharkiv, Ukraine, during Stalin induced famine, 1933

In the fourth chapter, we meet Elizabeth and her husband Mitch.
When they were dating, after work they would meet often in a
Greenwich Village restaurant for dinner and a cocktail. They were
married, and after many happy years Mitch developed symptoms
of Alzheimer’s. He would then leave their apartment for the
Greenwich restaurant, and Elizabeth would follow and meet him
there as they did so many years before, like they were dating, and
when dinner was over, she would rush ahead so she could meet
him when he arrived home. But often when he arrived home, he
would not know who she was! One time he even called the police
to report the supposed intruder.

Inside the Caffe Reggio, Greenwich Village, established 1927

Cathy and Frank, Every Day Is Sunday
In the sixth chapter we meet Cathy and Frank,
who, after dementia overtook him, thought
every day was Sunday. Before he was skeptical,
but “as his memory began to fail, the prudish,
rule-bound side of him emerged. Dementia,
Cathy said wryly, had brought out his ‘inner
Catholic boy.’”
“Frank began to fixate on ritual, insisting they
attend church every Sunday. This would have
been fine, but for Frank, every day was Sunday.”

Sometimes she tried to reason with him, she had the
priest try to reason with him, but how can you
reason with someone with dementia?

Our author notes that sometimes dementia
patients “compensate for their illness and
vulnerabilities with a kind of extreme piety
that makes it hard to see the condition.” This
aggravated Cathy, who thought this was his
way of showing off, that this was just for show.
Unfortunately, “as the disease progressed,
Frank gradually stopped seeing Cathy as a
complete person. She became a prop, a vessel
into which he poured his fixations. So, while
Frank was able to sublimate his internal chaos
by turning to ritual, Cathy had no one and
nothing to turn to. Instead, she found herself
living with a humorless stranger.”

Frank also constantly watched ball games and movies
on the television. He would get absorbed, he would
yell at the ballplayers, he would yell at the characters
in the movies, he would shake his fist at the
television. This drove Cathy crazy, once she went into
the bathroom to escape. She even thought about
leaving him for a fleeting moment; but snapped out
of it and returned to the blaring TV living room.

Baseball Game,
Henry Sandham,
Boston Public
Library, 1890's

She confided to our author,
“Know what made it even
worse?” she asked. “As soon as
he saw me, his face broke into a
huge smile. God, he’s always so
happy when he sees me, telling
me how much he loves me
even though he barely knows
who I am anymore. But I can’t
bring myself to say it back.
What’s wrong with me?
Shouldn’t I want to be with
him, take care of him?”
Alzheimer's or dissociative disorder or brain fog

Frank got worse. He became convinced that thieves
were stalking the house, so he locked all the doors
and closed all the windows. Cathy lived with this
loneliness, caring for Frank for six long years.
Cathy blamed herself for trying to correct Frank,
telling him that today is not Sunday, telling him that
Doris Day is not taking anything off, that Clint
Eastwood really didn’t shoot anybody, in real life.

The author reassured her, her feelings were not her
fault. It can be tough caring for someone with
dementia. The author notes, “Humans are ultra-
social and require others to see the world as they
do. This need for a shared reality not only creates a
connection to others but also validates feelings,
judgments, and sense of self. Without such
validation, we become both physically agitated and
cognitively uncertain about what we know and how
we are. Moreover, this need for a mutually agreed-
upon reality is so strong that we naturally
overestimate the degree to which others, especially
loved ones, share our thoughts and perceptions.”
Sugar Ray Robinson, Boxer, suffered from Alzheimer's

“So, when a spouse or a
parent suddenly sees the
world very differently from
us, we might intellectually
register this as a symptom
but unconsciously feel that
an implicit social promise
has been broken.” We find
it difficult to truly believe
that loved ones suffering
from dementia have lost
their free will along with
their memory, they are
hostages to their
emotions.
Rosa Parks, Civil Rights Leader, suffered from Alzheimer’s

James Doohan, Scotty on Star Trek, suffered from Alzheimer’s
Henry & Ida, Who Talks to Photos & Books

In the seventh chapter we meet Henry and Ida, they
loved music, they loved novels, Henry was an
architect. When she was in her mid-seventies, Ida
succumbed to Alzheimer’s. Ida started talking to the
many photographs of family and acquaintances
hanging in the hall of their apartment. Then she
started talking to the books they owned.

The author remembers, “as
Henry ruefully observed to
me during one of our last
meetings,
‘I suppose I should be happy
that she’s happy. She has her
books and her pictures, and
when I play music for her,
she’s in heaven. She doesn’t
really need anything else.’”
“He then fell silent for a
moment. ‘But how do I get
used to the fact that she has
no use for me?’”
Göttweig Abbey library, Austria.

Conclusion Our author concludes: “Indeed, the more I
listened to caregivers and the more I read
about the brain, the more it occurred to me
that the ‘healthy’ brain’s ingrained biases
and proclivities make it unequipped in many
ways to deal with the cognitively impaired
brain. Because of such neurological
constraints, I wanted caregivers to
understand that it was not character flaws
that made caregiving so fraught, but rather
their own brain’s intrinsic workings. And
naturally I hoped they would accord
themselves the same forgiveness that
they’re encouraged to offer their patients.”

My condominium association now actively seeks to
assist those dementia patients in our community. But
their initial opposition illustrates how difficult it is for
people to accept that those who suffer from
dementia are really not responsible for their actions,
nor are they responsible for their neglect in handling
their financial affairs.

We discussed several, but not all, case studies from the medical
practice of Dr Dasha Piper from this excellent book, Travelers to
Unimaginable Lands. This is one of those rare books that is
accessible to the layman and useful to the clinician. Scan the
footnotes, he has excellent references to many additional sources
and observations, these apply both to dementia in particular, and
to how our brain functions in general. Many tendencies in a
normally functioning brain are greatly exaggerated in the
compromised dementia brain.

Page xxi footnote refers to The Man Who
Mistook His Wife for a Hat and Other
Clinical Tales by Oliver Sacks. Some of these
cases are related to dementia, plus other
puzzling neurological disorders and their
baffling manifestations. These cases cannot
be cured, the family and physician must
learn to manage them as best they can.
Page 127 footnote: Our author is referring
to the book Learning to Speak Alzheimer’s.
We plan to do a video on these two books
in the near future.

footnote refers to Lawrence Kohlberg’s
book, State and Sequence: The Cognitive-
Developmental Approach to Socialization. This book
“was heavily influenced by the work of Jean Piaget,”
“a prominent developmental psychologist”
specializing in the psychology of children. This
particular book is not readily available, but there is a
similar book summarizing the views of these two
psychologists.
Page 174 footnote: “Nietzsche touches on how the
popular mind is primed to impose intentions even on
mindless phenomena and how language reinforces
this tendency” in his Genealogy of Morals and Ecce
Homo. You should read and study Nietzsche with
caution and skepticism.

Page xxii footnote: One type of cognitive reserve
is the brain reserve model, where “some people
have a larger brain with more neurons and
synapses, which allows the brain to withstand
pathology better,” including dementia.
Page 32-33 footnote: “We tend to feel and
overestimate conscious will when we act and
make decisions.” This makes sense because “our
lack of awareness is a defining feature of our
unconscious.”
Page 38 footnote: “Our brain has been
characterized as lazy,” “or fast and frugal,”
“favoring habit over difficult change.”

footnote: “We have a tendency to
believe that our perceptions of the world
reflect how it actually looks. As a result, we
overestimate our accuracy and objectivity.
This bias, called naïve realism, holds true for
our visual perceptions as well as our day-to-
day world views.” This is especially true for
those who value research into conspiracy
theories on the internet over credible sources.
Page 80-81 footnote: “Benjamin Libet
measured consciousness’ role in behavior.” In
this much debated study, “Libet did not
believe his study showed there is no free will.”

footnote: “Humans tend to use their
knowledge, beliefs, and expertise as a proxy for
what others feel and behave,” which is a side
effect of “our natural egocentricity in our
perspectives. One example is the false consensus
effect,” “which leads us to think that others share
our point of view more than they actually do.”
“The curse of knowledge leads us to overestimate
the degree to which people know about
something we have learned or are experts in.”
“The illusion of transparency leads us to
overestimate how much people share in knowing
about how we are feeling.” In other words, ladies,
us men cannot read your minds.

footnote: When “dealing with someone’s
delusions,” we sometimes lose patience and
cannot resist the urge to correct a delusion when
we are tired and in a state of “ego depletion.” “We
need self-control when accepting or adjusting to
another person’s reality because it means
overcoming our inherent egocentric perspective.”
Page 108 footnote: “Some argue that the reason
our brains grew is from the pressures of managing
increasingly complex social structures. Our large
brains help us navigate the social world.” It really is
challenging to read people’s minds.

footnote: Our brains are “wired to
believe or accept things as fact” even when
they are nonsense that “our mind tries to
make sense of.”
Page 137 footnote: “Putting yourself in
other people’s shoes often decreases the
accuracy” of your perceptions. Rather than
trying to imagine what is going on in the
head of those with dementia, you “should
simply ask them directly about their state
of mind.” However, this is impractical when
they are in an advanced state of dementia.

We must also mention the excellent website for the
Alzheimer’s Association at www.alz.org, which we
feature in many of our other videos on dementia.

To find the source of any direct
quotes in this blog, please type in
the phrase to the search box in
my blog to see the referenced
footnote.
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Problems Family Caretakers Face When Caring for Loved Ones Suffering From Dementia

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