Dementia Behaviors–Caregivers
Survival Guide
Simple, Proven Methods to Control
and Defuse the Situation Before It
Blows Up!
Grace Southerly
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Table of Contents
Introduction
Chapter 1: What is Dementia?
What Causes Dementia?
Types of Dementia and Their Diagnoses
Typical Behaviors in Dementia Patients
Empathizing With Someone Who Has Dementia
Chapter 2: Modifying Household Habits
Hoarding, Rummaging, and Hiding Things
Adapting the Household
Kitchen Safety
Bathroom Safety and Awkwardness
Chapter 3: Difficult Behaviors
Repetitive Questions
Chanting and Calling Out for Help
Chapter 4: Irrational Behaviors
Delusions and Paranoia
Hallucinations
Imposter Syndromes
Managing Accusations
Chapter 5: Unpredictable Behaviors
Wandering
Sundowning and Quality of Sleep
Chapter 6: Aggressive and Embarrassing Behaviors
Profanity
Disinhibited Behaviors
Agitation and Anxiety
Anger, Aggression, and Combativeness
Chapter 7: Hurtful Behaviors
Racial and Gender-Based Discrimination
Mean or Cruel Comments
Chapter 8: Finding Comfort and Support
Music Therapy
Music and Talking About Dementia
Laughter Therapy
Conclusion
References
Trigger warning: This book contains detailed information about the
realities of declining mental health of a loved one.
Introduction
In William Shakespeare’s “The Seven Ages of Man,” the Renaissance master
broke down the seven stages a person goes through from birth to death. And
while these beginning and ending stages of life are inevitable, it is interesting
to see how much some of the other stages have in common. Right after birth
comes infancy, about which Shakespeare writes, “At first the infant, Mewling
and puking in the nurse’s arms,” showing how helpless and in need of
constant care we are when we enter the world. Toward the end of life, we
enter old age and become a shadow of our former self. The voice loses its
impact, the posture becomes gaunt, and the physique grows weak till life
reaches the final stages of doting, when senility clouds the mind, and death
ultimately follows.
Shakespeare’s isn’t a unique concept. Aristotle and other philosophical
giants also touched upon it. In our modern-day, hectic, and robust lives, we
are so caught up in the hustle and bustle of how things are moving that we
overlook our own health. We never see ourselves moving toward the final
stages of our lives till things begin to slip out of control, both literally and
figuratively. We forget people’s names, we don’t remember important events,
and sooner or later, we become clueless about the most basic things.
At present, there are more than 6 million Americans afflicted with
Alzheimer’s disease, and this number is expected to swell to 13 million by
2050. Alzheimer’s, a form of dementia, kills one out of three senior citizens,
more than the combined total of breast cancer and prostate cancer deaths.
This number witnessed a sharp increase in 2020 when COVID-19 was at its
peak, with an added 17% of seniors falling victim to dementia-related deaths
(Alzheimer's Association, 2021).
Dementia is an unforgiving condition. It does not discriminate among racial,
economic, or social differences. Anyone entering their twilight years can be
afflicted, even as early as 45 years of age. It is the leading cause of disability
among seniors as it impacts their ability to think, rationalize, and remember.
Moreover, as dementia worsens over time, the brain is no longer able to
recognize reality. This creates a severe emotional imbalance in patients,
resulting in difficult, irrational, and sometimes dangerous behavior. To date,
there is no cure for dementia, and it continues to leave patients with a
debilitated lifestyle that requires constant care (Alzheimer's Disease
International, n.d.).
Care that is in short supply.
By the end of 2022, dementia-related diseases are estimated to cost the US
over $321 billion. This figure is expected to soar to $1 trillion by 2050. A
large part of dementia-related care comes down to live-in caregivers,
ordinary people who do extraordinary things and are often unrecognized and
underappreciated. There are more than 11 million people in the US tending to
people with dementia. They contributed approximately 16 billion hours of
unpaid care in 2021. This amount of time is estimated to cost around $272
billion, but most caregivers are never given their due in dollars and cents.
They are also underappreciated and often face harsh, frustrating, and
agonizing behaviors that make them question if the task is even worth it
(Alzheimer's Association, 2021).
Around 30% of caregivers are over the age of 65, most of them women who
not only care for a dementia patient but also tend to their own children and/or
grandchildren and are aptly called the “sandwich generation.” At least one
third of caregivers are daughters who either feel obligated to look after their
aging and vulnerable parents or cannot afford to get full-time caregivers.
They also have to deal with the demands of their own lives, such as families,
finances, and jobs. Caring for a dementia patient is a longstanding
commitment that requires constant presence throughout the day. They must be
there all day and every day while juggling obligations to their own priorities.
Around 66% of caregivers are presently living with their dementia patients
(Alzheimer's Association, 2021).
Though the intentions are noble, this is a huge undertaking. Most caregivers
have little to no financial support and no experience. They have to research
what it is like to live with a person with dementia for a prolonged period.
Several organizations specializing in dementia-related care offer workshops
and training opportunities, but the overwhelming nature of the life ahead can
make caregivers anxious, frustrated, and, at times, uncertain of their efforts.
Has your role as a caregiver left you hurt, devastated, and constantly on
edge? Have you been contemplating just how caring for a dementia patient
has affected you physically, mentally, emotionally, and financially? Do you
feel constantly underappreciated by the person you are caring for and have no
one to turn to? Do you find that you are not cut out for the role, and not just
because you have little to no geriatric training or experience?
It’s alright if you are, because you are not alone.
Dementia Behaviors–Caregivers Survival Guide helps you understand just
how debilitating and overwhelming the different kinds of dementia can be,
not just for the patients but also for the people caring for them. The chapters
herein focus on your new journey toward providing care for your loved ones
and will shed light on the behaviors you can expect from dementia patients,
help you understand why they take place, and encourage you to do your best
to manage them.
Grace Southerly has spent more than 40 years helping relatives and church
members. Growing up around senior citizens, relatives, and others, she has
gained a wealth of knowledge from enjoying their company and has learned
more of their histories and wisdom throughout life. She has witnessed firsthand what life as a caregiver for the elderly with dementia and other
geriatric diseases is like, as her grandmother suffered from dementia for
many years before dying at home at the age of 96. Similarly, her in-laws
were also dependent on not just their family but also wonderful caregivers
for many years before their deaths at 83 and 96 years of age. Presently, her
89-year-old mother is living in a care facility and receives excellent support
from the wonderful staff, Grace, and her husband.
Living a life among the elderly has given her deeper insight into the
challenges they face due to their physical and mental disabilities and the
amount of commitment and devotion caregivers show to them when they need
it the most. Her frequent visits to her mother have allowed her to meet
several residents with similar conditions and helped her empathize with their
plight. She has seen and heard the concerns and pain from many family
members of residents in care facilities and wants to share knowledge, hope,
and comfort with a tribe of caring, diligent, and devoted caregivers who
want nothing more than to offer the best quality of life to their patients and
loved ones as they can.
Chapter 1: What is Dementia?
Defining something as complicated as dementia in layman's terms isn’t that
straightforward. It’s a lot more important to understand what it is and how it
affects not just the people afflicted with it but also the people surrounding
them: family, friends, loved ones, neighbors, and even strangers they
encounter. Regardless, any loss of a person’s cognitive functioning to levels
that impair their everyday activities falls under dementia. This includes their
ability to think, reason, and remember things that they had no problem doing
before but now find challenging and even impossible. When this happens to a
person, when they find that what they considered to be normal just a short
time ago is alien to them physically and mentally, they start to feel their grip
on reality slipping, and they can’t help themselves anymore.
Imagine not being able to remember the simplest things, like where you left
your wallet or what hour of the day it is. When it happens a few times over
the course of a month, it doesn’t feel like too big of a deal, but when it keeps
happening every other day, it becomes concerning. What’s worse is that it
progresses, and the little things start getting bigger. You move on from the
wallet to important documents or files, and before you know it, you don’t
even know how you got where you are.
Infuriating, isn’t it? In such a situation, you start feeling cranky and begin to
question what’s real and what isn’t. Dementia can do that to a person. It can
severely challenge their sense of normality and make it worse by becoming
more daunting as time progresses, depending on the severity of the syndrome.
The emotional imbalance a person inflicted with dementia undergoes can
range from mild irritation upon the onset of the condition to directly
aggressive behavior and tone of speech in more severe cases. The latter is
due to the fact that such people have to rely on other people completely for
their day-to-day activities. These activities include helping them eat, walk,
converse with others, and use the bathroom.
An important aspect of dementia to keep in mind is that while it occurs in
people of older age groups—mostly people over 80—it is not a direct trait
of aging. Dementia usually occurs in a variety of diseases such as
Alzheimer’s, which is known to begin any time between the ages of 30 and
60. On the other hand, many people have lived considerably healthy lives all
the way through their 90s, even further, without any form of dementia. But for
those who do face it, dementia can afflict a person in diverse ways. No two
dementia patients will have the same symptoms, though early signs can
predict if a person is likely to develop it.
These symptoms may include memory loss, confusion of surroundings,
forgetting why you started doing something, losing your train of thought while
you are speaking, reading, or writing, not recognizing familiar people or
objects, having difficulty calculating amounts, asking the same questions over
and over, feeling bored in preferred hobbies, being paranoid and impulsive,
and not taking other people’s feelings into account. Having difficulty
walking, doing chores, cooking, driving, running errands, and gardening are
just some of the physical impairments brought upon by dementia.
What Causes Dementia?
The human brain is a complex organ bustling with an untold number of
neurons and neural pathways that perform all kinds of complex tasks,
including but not limited to managing muscular and motor control of the body,
responding to sensual stimuli, and regulating the inner workings of the
organs. But when dementia occurs, these healthy neurons begin to degenerate
and ultimately die, and brain cells lose active connections to each other. This
process is irreversible.
Still, there is no real cause as to why dementia happens. The fact is that some
neurons naturally age and die in human beings, but the frequency is far
greater in people with dementia. It could be due to rare genetic mutations or
natural changes in the brain, but these are only linked to certain ailments, and
those in small numbers. Suffering a stroke can also lead to the development
of dementia as can overconsumption of alcohol, physical injuries to the
brain, nutritional deficiencies, HIV, and various other disorders.
The underlying cause continues to be a mystery, and a cure remains out of
reach. The behavioral symptoms of Alzheimer’s and other different forms of
dementia make themselves evident as the disease progresses. The symptoms
mentioned earlier can be exacerbated due to the patient’s surrounding
environment, stressful lifestyles, anxiety, frustration, insecurity, and an
overwhelmed emotional state.
Types of Dementia and Their Diagnoses
The most common type of dementia is Alzheimer’s disease, which accounts
for around 60-70% of dementia patients, but there are other types, including
frontotemporal dementia, vascular dementia, and Lewy body dementia.
Alzheimer’s results from abnormal buildups of proteins commonly referred
to as amyloid plaques and tau tangles. These protein buildups lead to several
changes in the brain that form the foundation for the most commonly
diagnosed kind of dementia in older adults.
Frontotemporal dementia is a rare type that is caused by abnormal amounts of
the proteins tau and TDP-43. As it accounts for around 10-20% of all
dementia cases, frontotemporal dementia (FTD) is rare considering that it
usually occurs in people under the age of 60 (Association for Frontotemporal
Degeneration, 2009).
Vascular dementia (VaD) occurs as a result of damaged blood vessels in the
brain due to various conditions. These conditions may also interrupt blood
flow as well as oxygen supply to the brain, creating further degeneration.
Vascular dementia may cause stroke-like episodes among patients and is
more likely to develop in patients with cardiac arrhythmias, diabetes, high
cholesterol, hyperlipidemia, and hypertension, as well as habits such as
smoking (Querfurth & Lafera, 2010). Vascular dementia currently accounts
for around 15-20% of dementia cases in older adults (Putnam Ridge, 2018).
Another kind is Lewy body dementia (LBD), named after the abnormal
deposits of Lewy bodies. These Lewy bodies are made up of the protein
alpha-synuclein, which affects chemicals in the brain, resulting in problems
with behavior, movement, mood, and thinking. It accounts for nearly 5% of
all dementia cases in older adults (Medicine Plus, n.d.).
It is also important to mention that there are no set boundaries among the
different dementia types, and it is possible for a person to be afflicted with a
combination of two or more kinds. Autopsies of patients have revealed
which types of dementia they suffered as determined by the various changes
in the brain. It is crucial to get a diagnosis to determine the proper care.
Though dementia remains incurable, treatment can improve a patient’s quality
of life for the long term.
Once a person starts exhibiting signs and symptoms of dementia, i.e., changes
in behavior, movement, or thinking, the first step is to visit a primary care
physician (PCP). Though a PCP won’t make a diagnosis, they can make an
assessment and refer patients to other specialists that include neurologists,
geriatricians, neuropsychologists, and geriatric psychiatrists, who can
provide a diagnosis after they extensively evaluate the case.
Initially, a patient is assessed for any conditions related to cognitive
difficulties that may be treatable. This can be done through a physical exam
for vital signs as well as blood tests and fluid tests. These tests check the
levels of different chemicals, hormones, and vitamins in the body.
Nowadays, blood tests can also provide information about beta-amyloid
levels, a protein closely linked with the buildup that abnormally accumulates
in Alzheimer’s. Other blood tests, though in development, are not easily
available to most patients. Furthermore, physicians also review a patient’s
medical and family history for any prior cases of dementia or other
conditions related to cognitive difficulties. Genetic testing can also provide
further information about a family’s genetic history for any shared
abnormalities which can help physicians get to the bottom of the symptoms
and rule out other disorders or complications.
A patient may also undergo cognitive and neurological tests to evaluate their
physical and thinking abilities. The mental tests include language skills,
memory, mathematics, and problem solving, while physical tests evaluate a
person’s balance, reflexes, and sensory responses. Similarly, a psychiatric
evaluation can help doctors rule out depression, stress, anxiety, and other
mental health-related concerns before considering dementia.
Various brain scans can provide a detailed picture of the current condition of
the brain and provide valuable insight and clarity into diagnosing dementia.
Brain scans can chart the impact of different abnormalities such as strokes,
tumors, and other problems associated with dementia onset. These include
computed tomography (CT) scans, which provide images of the brain using
X-rays, and magnetic resonance imaging (MRI). MRIs perform a similar
function to CT scans but with more detailed images of the organs, nerves,
tissues, and bones using radio waves and magnetic fields. Positron emission
tomography (PET) scans also provide detailed images of brain activity using
radiation.
It is also possible that a patient may be afflicted with a condition that has
symptoms similar to dementia; however, these conditions could be slowed
down and even cured if diagnosed and treated in time. For instance, memory
problems can also be caused by alcohol abuse, anxiety, depression, delirium,
side effects of medications, and stress. Furthermore, the abnormal buildup of
cerebrospinal fluid in the brain, known as normal pressure hydrocephalus,
can be treated successfully.
Typical Behaviors in Dementia Patients
In most cases, dementia symptoms can help determine exactly how the
disease is affecting someone, but that doesn’t mean it affects everyone the
same way. A person’s medical history, lifestyle, cognitive abilities, health
conditions, and various other factors play an important part in disease
severity. Regardless, the most obvious symptoms of dementia can be broken
down into three stages: early, middle, and late. With early-stage dementia,
patients and their family members often overlook the symptoms as they
appear slowly and gradually. They may even be dismissed as signs of old
age. The most obvious symptom is forgetfulness, which could be for just
about anything. Examples of forgetfulness include forgetting to lock the door,
pick up keys, or turn off the lights before leaving a room. Other symptoms of
early-stage dementia also include finding yourself lost in familiar settings
like your house or neighborhood and losing track of time.
The middle stage of dementia makes it clearer that something is not right.
These symptoms, though not too worrying in the first instance, can cause
concern if they appear repeatedly. Forgetfulness gets worse in the middle
stage as the person has a hard time recalling a person’s name or any recent,
vivid memories. Not being able to recall a person’s name multiple times,
especially a loved one such as a child or spouse, can be very worrying both
for the patient and family members. If that weren’t enough, the symptoms can
worsen to a point at which the patient is confused in their own home, can’t
tell how they got from one room or another, are unable to take care of
themselves, have problems communicating, and are frustrated by not being as
capable as they used to be. Other symptoms include behavioral changes, like
asking the same questions over and over and wandering, which will be
discussed in more detail in the following chapters.
Late-stage dementia is highlighted by how dependent a patient becomes on
others, particularly a caregiver. Aside from the degeneration of their mental
faculties, patients show less activity and have difficulty in the most basic
physical functions, like walking, picking up objects, making gestures, eating
meals, using the bathroom, and taking medications. Their mental abilities
degrade until they are unable to recognize close friends and relatives,
unaware of where they are or what time it is, or unable to recall pleasant
memories without visual stimulation.
Empathizing With Someone Who Has Dementia
When you start taking care of someone who has dementia, it can feel like you
are stuck in a situation you didn’t ask for. Most times, people are obligated to
look after loved ones who begin to exhibit symptoms of dementia and require
hands-on care, especially when they are unable to carry out their day-to-day
tasks like they used to. It could be a family member, a loved one, or someone
to whom you feel you owe a great debt. While taking care of someone with
dementia out of a sense of obligation isn’t necessarily wrong, there may
come a time when you feel too frustrated and angered to keep going.
Let’s face it, dementia is not an easy thing to comprehend if you are on the
outside. The people afflicted with it start unraveling at an alarming rate as
the symptoms progress, and they can undergo moderate to severe emotional
transformation. Not even they fully understand what they are going through,
so there is no way for them to explain it either. To make things worse, they
want their caregivers to understand what they are experiencing, but they don’t
have the right words to express it. In most situations, people want to
understand the problems someone is facing, and as a caregiver, it is essential
to communicate with the patient. When they can’t answer, though, you feel
like things are going nowhere.
Therefore, empathy is an essential component of caring for dementia patients.
Once you have some realization of what the other person is experiencing and
how it would feel if you were in their shoes, you can then take a more
deliberate approach to their needs and avoid being reactive. Dementia can
make people volatile and mercurial. They are never truly sure of what they
want or feel, and why. You can never predict how a situation or conversation
is going to go at any minute, so the mantra you have to remember is to let
them lead.
For starters, no matter how outlandish or irrational something they say is,
there is no use arguing about it. It could be something as simple as agreeing
that it’s night when it’s clearly day or that it’s hot even though it’s freezing.
You must remember that their red is red to them, even if in reality it is blue.
But if they say it is red, then that is what it is. Arguing with them is only
going to infuriate them further as they will feel you aren’t able to understand
their point. This could create a lot of frustration within you as you end up
agreeing with almost everything they say. Rather than let it boil up inside you,
look for an outlet to release those frustrations. It’s important for caregivers to
set some time aside for themselves to go running or hiking or do some
activity which helps them channel that negative energy positively. Talking to
someone, while maintaining discretion, can also help let off steam.
Just remember that dementia patients are unable to use their reasoning
abilities like they used to. The greater the progression of dementia, the less
reasonable a person becomes. You might assume you can be the voice of
reason and try to defuse a situation by using logic. But that is not how it will
work, and you will find yourself trying to rationalize your argument to
someone who won’t hear it. The best way to keep an argument from
escalating is to redirect it to something else. Depending on how quickly a
patient’s attention span withers, you should come up with a brand-new topic
to talk about, preferably something enjoyable. It could be about a fun memory
or a favorite pastime of theirs. The more enthusiastic you sound about it, the
better are your chances of successfully diverting their minds from the
previous argument.
Redirecting also helps when patients find themselves in embarrassing
situations. For instance, when they find themselves lost in a room or have
dropped something and made a mess, by redirecting their attention to
something else, such as a nearby distraction, you can keep them from feeling
ashamed about their previous action. Oftentimes, dementia patients feel
either ashamed or enraged at any mishap because of their lack of
coordination, and therefore, it is important to take their mind off it as soon as
possible.
Now, it’s very likely that you may not be there at the exact moment when it
happens, but no matter when you arrive at the scene, you have to treat it as if
it is nothing to be concerned about. No matter how embarrassed they may
feel, remember to keep a friendly and reassuring tone so that they do not feel
anything is amiss. Reassuring them that things are alright is a lot better than
pointing out their mistakes or making them feel like they don’t understand the
consequences of their actions. Even a stern tone can make them feel like they
are being lectured.
Another important point is to avoid using the word “remember.” Using this
word on a dementia patient is akin to rubbing salt in their wounds. Imagine if
they can’t recall their favorite meal on a certain day or any other habit or
preference. Telling them to remember it is going to shine a spotlight over the
fact that they aren’t able to remember as well as they used to. Instead of
reminding them of the obvious, take a more storytelling approach. If they
have Jell-O on Wednesdays and they have forgotten, talk about the last time
they had Jell-O. Make it sound like an incredible experience that will make
them excited about having it again. It also helps them connect the dots to a
previous memory and offers them a chance to reminisce about the good times
they had before.
Empathy is all about patience, and you will need to have a ton of it when
communicating with a dementia patient. As a rule, you are going to be
repeating things a lot. The key is to keep your tone friendly and calm all the
time. It’s a challenge, but it’s worthwhile considering that your patience will
help you form a much better bond with them. The best way to care for them is
to be ready to tell everything they need to know as if it were the first time
they were being told. If they want to know where they kept their newspaper,
even if it is right next to them, tell them in a friendly and helpful voice. If they
want to switch to a particular channel on TV, help them with the remote
without bluntly reminding them how to do it.
That’s another thing empathy requires: treating other people with dignity. At
times, it may feel like you are dealing with a child who needs to be told what
to do just like in school. Instead of taking a commanding tone, though, it’s a
lot better to encourage and urge them gently along to take action. The goal is
never to strictly tell them what to do. Involve them in a task and get their
permission before you start a task together. Using a strict and commanding
voice can make them feel as if they are being reprimanded. By the same
token, always be ready to make them feel appreciated whenever they do
something right, no matter how small it is. Praising them creates a feeling of
positive reinforcement, and it also makes you feel happy to see them gaining
some confidence in themselves.
Keep the following recommendations in mind:
● Agree with them instead of arguing.
● Redirect their attention instead of reasoning.
●
Distract them from embarrassing situations instead of letting them feel
ashamed.
● Reassure them instead of lecturing.
● Reminisce about the good times instead of telling them to remember.
● Repeat your point instead of saying, “I already told you.”
● Keep a can-do attitude instead of a can’t-do attitude.
● Ask instead of commanding.
●
Always encourage and praise them instead of condescending or
berating them.
● Reinforce instead of forcing.
Before we look at how dementia leads to the various difficult, irrational,
aggressive, and dangerous behaviors in a patient, it is also important to have
an overview of how you can make their lives considerably easier in the long
run. The next chapter will deal with preparing the house for a person with
dementia and making things as safe for them—and for you—as possible.
Chapter 2: Modifying Household Habits
Whether you are a live-in caregiver unrelated to the dementia patient or the
patient’s direct relative—most likely an offspring—you must remember that
su casa es mi casa. In other words, their house is your house. It’s the living
space you share, and, whether they want it or not, you are going to be a
constant feature in their daily lives. That includes making day-to-day
decisions, helping them where they need it the most, providing them with
their basic necessities, and being responsible for their well-being. But don’t
forget that it also means making the habitat a welcoming, clean, and safe
place, which means you will need to make a lot of changes that will impact
both of you.
Hoarding, Rummaging, and Hiding Things
Dementia patients start losing control of their mental faculties in the early
and middle stages of the condition, which is when they find themselves
losing their grip on thoughts and memories. Because they feel their hold on
their memories slipping, they want to do as much as possible to maintain that
hold. This leads them to hang on to a physical manifestation of those
memories in the form of associated objects. In the course of our lives, we
accumulate and put away many things, such as souvenirs, photographs,
clothing, awards, and collectible items based on our interests. To dementia
patients, however, these items can represent an entire memory, good or bad.
Looking at and holding them in their hands can trigger vivid recollections.
This is where hoarding comes in. Hoarding is the accumulation of different
kinds of items that don’t hold much monetary value, if any at all. Unlike
collecting, where people properly catalog and organize the items in their
collection, hoarding is done with no proper organization or system and is
driven purely by a desire to hold on to things instead of letting them go.
People hoard all kinds of things: old magazines and newspapers, furniture,
clothing, canned food, collector items, books, and even odd items like
welcome mats and old packaging. In extreme cases, hoarding is also a
disorder in which the number of items hoarded is unmanageable and
unorganized and interferes with a person’s daily life and movements.
With no telling how much of their memory dementia patients are unable to
recall, there is no limit to how many items they can hoard. However, it is
very possible that they hoard items that have some significant emotional
attachment that caregivers and others cannot see immediately. It could be a
bunch of letters from a loved one who is no longer in their lives, old school
yearbooks, photo albums, different packaging and boxes, or old clothes
belonging to their children.
These items must have had some meaning to their lives at some point and still
provide them comfort and happiness. Oftentimes, they like rummaging
through those old items on a whim or when they recall something from the
past. Because they have held on to these items in a haphazard manner, the
rummaging can be a challenging prospect which can irritate them even more.
It is highly possible that patients fear if they lose these items, they lose
whatever memory they have associated with it forever. In other cases, losing
items or having them taken away makes patients feel as if they are not able to
take care of these things, which further increases their thoughts of
helplessness. It can even serve as a metaphor for losing a relationship or
connection with another person once they lose a particular object. In other
cases, people with dementia also accuse others of taking away their things,
when, in fact, they may have hoarded them and then forgotten where they put
them. Couple that with any existing paranoia or hallucinations, and patients
can become very confrontational, agitated, and aggressive about it, making it
very hard to convince them to let these things go.
As mentioned earlier, hoarding can take on more extreme appearances,
especially when it interferes with a person’s day-to-day routine. If a person’s
living space is filled with hoarded items that aren’t properly organized, it
becomes quite hard for them to navigate their surroundings. With objects
lying around the floor, they could trip or step on sharp objects and ultimately
hurt themselves. For people with dementia, it can become even more
problematic considering that they already have difficulty moving. In worstcase scenarios, the material could even have environmental hazards.
Naturally occurring decomposition of different materials could lead to mold,
infestations, and fire hazards. Food is commonly hoarded to the point of
rotting, but dementia patients still try to hold on without acknowledging the
obvious health hazards. They may also hoard small items like heirlooms.
Caregivers will often find collectibles, family keepsakes, letters, and even
cans of food hidden between clothes in the patient’s closets and drawers.
It’s not easy for caregivers to convince people with dementia how harmful
hoarding can be. For one thing, they are living within their own property and
are therefore entitled to live how they want and keep what they want in
whatever manner they want. In ordinary cases, you might look at the extreme
mess and be tempted to consider the owner slovenly, but that isn’t how
dementia patients can be treated. Still, you will have to step in when you
notice their hoarding habits are getting out of control. In the case of rotting
food, the answer is obvious: It needs to go. Not only will it be unsafe to eat
or drink, it will also become a hotbed for flies, rats, and other pests and
foragers. Similarly, you should step in when hoarded items occupy floor
space. The floor space needs to be clear not just for movement but also for
proper cleaning. Boxes, piles of magazines, books, and newspapers, stacks
of clothing, baggage, and so on are tripping hazards and need to be cleared
out.
Speaking of papers, hoarding things uncontrollably can also cause you and
your patient to lose important documents like medical papers, bills, and mail.
Sorting through them is going to take a lot of effort, and you may face stiff
resistance from your patient, who is not going to appreciate anyone going
through their things. Ideally, you should create a system to store the important
papers, like in a drawer or a filing cabinet, as well as important personal
items, collectibles, family heirlooms, and keepsakes. Creating a designated
space for all these items can be a fun activity in which you involve the
patient and enable them to sort their things. The mantra both of you can
follow is “a place for everything, and everything in its place.”
This should solve the problem of smaller items like letters, mail, documents,
books, and files, but it still isn’t an answer for the larger items that are
scattered everywhere, especially on the floor. You will need to approach this
problem one step at a time so that the patient does not feel as if their space is
being intruded upon. Start by clearing up a floor path that can make walking
around easier and safer. If possible, get small, colorful flags to create a
walking trail. Be sure to tell your patient what you are doing so that they feel
involved and enjoy themselves. This way, you also let them know about the
new walking path through a fun activity that you can reminisce about if they
forget later. Besides, they should know about the changes you are making so
that they don’t end up in shock when they see it.
Once you get the ball rolling, you can then filter out the items you believe are
doing more harm than good. Rotting or rotten food needs to be disposed of
right away, but don’t throw it in a garbage can inside the house. Instead, get
such food out of the house without the patient noticing it, preferably when
they are asleep. They may start searching for it in the garbage cans in the
house, so it is best to be thorough when disposing of these things. You may be
thinking of asking their permission before you actually take such a step, but
they may not be ready to listen to reason or logic. This is where you have to
use your judgment and get rid of anything that is going to cause any health or
environmental hazards, including any leaky containers of paint, ink, glue, and
so on, as well as wood with mold on it.
Take it one step at a time. If you try to clean out the entire house or a room in
a single day, it not only alerts the patient to your actions and thus results in a
protest, but it also takes your attention away from caring for them. Remember
that these hoarding habits are a result of their dementia and are not within
their control. By getting rid of the unnecessary items, you create a safer and
cleaner environment for the patient while helping them hold on to the things
that have actual meaning in their life.
This also allows you to get to know your patient better by getting more
information about all the objects worth keeping. You can ask them about what
these items mean to them, how they got them, what people they remind them
of, and much more. If the patient has haphazardly collected stamps,
postcards, trading cards, figurines, toys, models, music records, video tapes,
or other collectibles, catalog them by either putting them in an album or
attaching labels to them. Make sure that labeling is large and legible for your
patient to see clearly. Don’t forget to involve them in this activity as well.
Dementia patients, in their desire to be protective of their things, will forget
where they hid them. What makes this worse is that they won’t believe that it
was they who hid those items in the first place, and they could start putting
the blame on others, specifically you. Not only could you be held responsible
for losing the item, but you could also end up looking for it. Before you feel
like the decks are stacked against you, remember to be empathetic and
considerate. Remember that they are going through a great ordeal that
includes sudden memory loss and that they aren’t at their peak. Their earlier
routines no longer apply, so you may end up finding their items in the most
unusual of places. Their keys might be in a refrigerator or the TV remote
control in the dumpster. Oftentimes, they may recall their earlier habits and
end up questioning why the items aren’t in their usual place.
Again, keeping the house organized with as much attention to detail about
their earlier habits as possible is the way to go. Make sure to identify and
mark permanent spots for keys, mail, remote controls, wallet, reading
glasses, bills, and other items around the house that are used regularly. You
should install a proper key hook near the front door and place a label clearly
saying so in large letters. Similarly, you could also get a small basket for
wallets and glasses and label them the same way. If handwritten labels aren’t
enough, then get some visual aids to help, such as a large printout of a key for
a key hook or a printout of letters and bills for the mail tray. Similar printouts
for glasses, wallets, bills, and other items can be used for making signs that
you can place at those designated spots. At the same time, make sure to get
duplicates made for keys and glasses so you have immediate replacements if
necessary.
If you and your patient have organized items in drawers, dividers can keep
things properly organized and reduce clutter. They come in all sizes and
colors and can be easily placed inside drawers. You can organize socks,
underwear, stationery, business cards, keys, watches, and other items of
importance. Just like with everything else, use a marker to label the areas
where you put things or stick small labels on the dividers.
Most importantly, no matter what happens, never give up. It can be frustrating
and agonizing to bear such behavior without being able to say how you are
really feeling. But don’t forget that your duty of care means empathizing with
your patients and always being prepared for anything, even if it means having
to swallow your pride and agree with their constantly fluctuating points. Your
end goal is to help them get a better quality of life as long as you don’t let it
affect you too much.
Adapting the Household
Hoarding and collecting items at an alarming rate can create a hazardous
living environment for people with dementia. Such hoarding with lack of
organization could lead to tripping, slipping, and other accidents and may
result in moderate to severe injuries which can set back a person’s health a
great deal. While organizing the house and all the items inside is essential to
reduce the clutter, you can make other simple changes at home to create a
cleaner, more minimalist lifestyle.
At the same time, these changes can reduce the risks of common household
items that people with dementia are not aware of or are no longer capable of
understanding. They don’t have to be major changes, just minor tweaks and
adaptations. Start by making adjustments to the appearances of the exit doors
to reduce the chances of wandering. Not only will you find that the changes
have created a cleaner and stress-free living space, but you will also notice
that the patients experience reduced anxiety, frustration, and stress in their
own homes.
To begin with, the clutter has to go, whether it is due to rampant hoarding or
a lack of attention to organizing the living space. Clean out as much clutter as
possible. Whatever items are necessary should be properly organized in
drawers, shelves, racks, closets, and other storage containers with proper
labeling. For things neither you nor the patient need that are causing a
detriment to both your lifestyles, look for ways to dispose of them properly.
Old newspapers, magazines, and junk mail can be recycled, while old
clothes, furniture, DVDs, electronics, drapery, upholstery, and the like could
be given away to nonprofits and charities. You could even set up a yard sale
if you think the items could fetch a decent price.
Aside from the useless stuff cluttering up the living space, irons, hair dryers,
toasters, and other small electrical appliances need to be kept out of reach of
dementia patients, especially if they are plugged in. They may not be able to
use them well due to impaired motor skills, or they may not remember how to
use them properly. The same goes for box cutters, scissors, paper clips, and
other sharp objects, as well as any chemicals like cleaning liquids,
antiseptics, and insecticides. If the patient still prefers to use irons and
kettles themselves, consider replacing them with newer models that have an
automatic shutoff option. This feature is ideal for people with dementia as
they won’t have to worry whether they left it on or not. Most newer models
come standard with this feature, so they should not be too pricey.
As a caregiver, you will be responsible for managing and storing the
patient’s medications and first aid items. Get some pill organizers to
properly sort out the medications for each day. This will help any patients
who take their medication themselves to keep track of their dosage.
Moreover, it reduces the clutter caused by extra bottles out in the open, so
you can keep the supplies in another location. Set a time at the end of each
week to fill up the pill organizers.
Reducing the clutter also means getting rid of any tripping hazards. These
include electrical or telephone cords, uneven carpeting, rugs, or floorboards,
and low furniture. You can reduce the number of electrical extension cords
by getting new wall-mounted electrical outlets installed in places where they
are needed. Most people have had extension cords from before they were
diagnosed with dementia, which means that it is time to get rid of them for
their own safety.
As we reviewed in the previous chapter, keep all rooms well-lit so there are
no shadows or tricks of the light that could impair the patient’s visibility. If
the patient has problems maintaining their physical balance and footing, then
you need to be extra careful with the use of stairs. For starters, make sure that
you are with the patient every time they need to take the stairs, like in the
morning from the bedroom to the living room and back again. To keep them
from using the stairs themselves, install a stair gate and keep it properly
latched till you are available to help. At the same time, make sure the steps
and railings are secure.
Getting rid of the clutter is going to make it a lot easier for you to access
things you and your patient need regularly without worrying about any
injuries or mishaps. It will also allow you to display mementos that hold
great meaning for the patient, such as old photo frames, keepsakes,
knickknacks, and awards. Seeing these items can evoke positive memories in
the patient and give them a sense of belonging in the living space rather than
a feeling of dullness.
Moreover, look around the house and see how your color schemes are
affecting the environment. Apply contrasting colors to the house with your
use of wallpaper or paint, shelves, doors, tiles, carpet, and lighting.
Contrasting colors also help dementia patients identify useful items. For
instance, a dark-shaded wooden or brown bookshelf will look a lot more
prominent against a lighter color wall. The same works for light-colored
objects on dark surfaces, the most common example being white plates, cups,
and other crockery on brown tables. The bathroom is one such place where
keeping a steady color contrast can help dementia patients differentiate
between surfaces and items like shelves, sinks, and toilet seats, and so on.
Most conventional bathrooms are colored white or in lighter colors with
little to no contrast. This can confuse patients if they try to use the bathroom
themselves. If redoing the whole bathroom is too expensive, there are
cheaper add-ons available, including toilet lid covers and sink stickers.
These add-ons can help offset your sink and toilet bowl from the rest of the
bathroom. A wide variety of toilet seats and lids are available with
contrasting colors that can help patients find the toilet seat easily. Vibrant
colors like red, blue, green, yellow on plain white toilets can easily draw
anyone’s attention to it.
That said, it is also important to remember not to overdo color contrasts by
adding different darker colors to a particular setting. Adding more colors to
the scheme can leave people with dementia even more confused and also
make them anxious about which color means what. Therefore, stick to a
simple color scheme with two to three colors at the most and a healthy mix of
light and dark contrasts.
While people with dementia can be kept from wandering by locking the exit
doors, they should also not be made to feel like they are prisoners in their
own homes. Therefore, make sure that the interior doors of multiple rooms
are kept open to allow patients easy access to every corner of the house.
Moreover, keeping the doors open gives people with dementia a greater
sense of scale and they feel like they have more freedom of movement around
the living room, kitchen, study, and bedroom, and it also helps let light into
the house. Keep your own room, the basement, closet, storage space, and
other out-of-bounds rooms closed and locked, and try to draw attention away
from them just like you did with the exit doors.
Even by keeping the doors open, it is possible for people with dementia to
get disoriented. For this, put up signs with bold letters, symbols, and arrows
so they know where they are going or where they are. If they need even more
help, display a floor map at different locations in the house with a pin saying,
“You are here.” This can also help them get a better understanding of what
route to take next to get where they want to go.
You should also add more cognitive aids in the living room, bedroom, and
other areas where the patient spends most of their time. These aids should
include a user-friendly clock with large digits and large wall calendars with
space for writing down different events on specific dates. The basic color
schemes of black letters and digits on a white background are ideal, but some
calendars designed for patients with dementia could have other pleasant
colors and patterns, such as patterns of different seasons in different months.
You should get your patient’s opinion of what calendar they would prefer, but
make sure that they pick from options they can easily read. Calendars are a
great way to keep track of important events including doctor’s appointments,
get-togethers, family occasions, and favorite TV programs. Clocks, whether
they are wall-mounted or desk-based, should also be easily readable as they
offer patients with a better orientation of the time of day. Make sure that they
display a.m. and p.m. information.
Kitchen Safety
If the patient enters the kitchen frequently, be sure to keep that space clutterfree as well. This is particularly important with knives, forks, spatulas, and
other kitchen utensils that people with dementia could use to inadvertently
hurt themselves. Fortunately, kitchens benefit from plenty of drawers and
cabinets to keep such items out of sight, but that won’t completely prevent
anyone with a little bit of curiosity from rummaging around and opening those
drawers and cabinets. More often than not, they are looking for food bowls,
glasses, spoons, mugs, cups, and other items that they use on a regular basis,
so keep those front and center. If they have difficulty grasping those items,
replace them with adaptive ones with better grips. Alternatively, you can
also get foam tubing and place it around your existing cutlery and mug
handles.
The most important thing is to keep sharp and harmful objects out of their
sight. You can install a lock on one of the kitchen drawers and stash all sharp
kitchen utensils away. The same goes for frying pans, ladles, rolling pins, and
cleavers. You will notice that most of these items have handles, which means
that they are all potential weapons that could hurt both the patient and you.
Therefore, keep them completely out of sight so they also stay out of mind.
Another major risk in the kitchen is fire. Whether it is the stoves, ovens,
matches, or even the microwave, there are plenty of objects that are fire
hazards; therefore, dementia patients should have as little access to them as
possible. This can be done by removing the knobs from the stovetops. Keep
them in a convenient location that is out of the patient’s sight so you can put
them back on when you need to cook. Alternatively, you could get switches
or valves installed that shut off the gas supply to the stove or ovens and place
them out of sight of dementia patients or in a location that is difficult for them
to reach. For electric stoves and ovens, you can hire an electrical contractor
to set up a timer to ensure the stove or oven is not used for longer than a set
amount of time. Once that time has elapsed, the stove or oven will
automatically switch off. It will start working once it is switched on again.
As for the microwave, make sure the power cord is unplugged when not in
use and that there is no metal cutlery or aluminum foil in or around it.
Matches and kitchen gas lighters are the next obvious fire hazard. Make sure
they are also kept in the locked drawer or cabinet along with the knives.
Also, do a routine check of your patient’s belongings to make sure that they
aren’t stashing or hiding any such items from you. Furthermore, keep your
fire extinguishers in full working order and check the batteries of your smoke
alarms regularly.
Bathroom Safety and Awkwardness
A lot of things can go wrong in bathrooms. Leaky pipes or faucets could
create a slipping hazard, and ceramic fittings on toilet seats and sinks are
serious impact hazards. Bathroom surfaces are naturally slippery due to the
glossy tiles, and they stay wet for some time, especially after cleaning.
Therefore, make sure all pipes and fittings are checked for leakages and
repaired as necessary. Keep your bathrooms as drip-free as possible. Once
the bathroom is cleaned up, give it some time to dry before either you or the
patient uses it. Ideally, set a time for cleaning the bathroom when the patient
is asleep, like early in the morning or late at night.
A lot of times, dementia patients will need help with the toilet seat as they
may not be able to stand or sit by themselves. In this case, you can install a
raised toilet seat set on the existing toilet. These come with arms on both
sides to help patients to sit down and lift themselves up with ease. Plus, the
raised seat enables them to avoid putting too much pressure on knee and hip
joints.
Male patients may have difficulty standing up while trying to urinate and can
also miss the bowl itself, resulting in a lot of mess. To help with that,
consider sticking decals or target symbols inside the bowl with an arrow
pointing downward. These are available in bright colors which can contrast
with lighter colored toilet bowls. Additionally, get a metal grip handle or bar
installed on the side of the wall next to the toilet to help patients maintain
their balance. Place similar ones in the shower and bathtub.
It goes without saying, but be sure to wash your hands thoroughly with soap
or antibacterial handwash after you make all your changes to the bathroom.
Consider purchasing nylon or rubber anti-slip and anti-skid mats for the
bathroom. They are cut in standard shapes so that they can be placed around
a bathroom sink, toilet seat, bathtub, and shower. Rubber mats can also be
stuck well with suction cups inside bathtubs and showers. These mats
provide better footing and can help maintain balance while also reducing the
chances of slipping and tripping. They are also easily washable and
available in solid colors that can contrast well with lighter washrooms.
Depending on the progression of dementia within the patient, your role as a
caregiver will vary when it comes to helping them use the bathroom.
Moreover, patients will be resistant to having someone else help them use the
toilet or take a shower as they will feel it is an infringement of their privacy
and independence. The latter will also make them feel threatened that they
are no longer going to be able to manage such tasks on their own. In the case
of bathing or showering, for instance, people with dementia will either resist
or refuse right away even if they are asked to do it themselves. Plus, with the
condition their memories are in, they may even genuinely believe that they
have taken one only recently as they recall one from days before.
However, with a new sedentary lifestyle in which they don’t leave the house
on a regular basis, daily bathing or showering is no longer mandatory.
Depending on the weather, patients can be encouraged to bathe or shower
twice a week in the summers and once a week in the winters. But if the
patients suffer from incontinence and are unable to control urination or
defecation, then they need to take frequent showers.
In order to help them get over the fear of losing their independence, try not to
control too much of what they do when they are taking a bath. Instead, let
them do as much as they can while being nearby in case they need any help.
You can also praise them for what they do well as long as you don’t make it
sound too patronizing. Nevertheless, you should remind them of instructions
or steps if you feel that they are not sure what to do next. For instance, if they
get inside the shower and are simply standing there, tell them to turn on the
shower tap.
On that subject, make sure the knobs and valves are clearly labeled hot and
cold. You can stick waterproof decals with colored labels above the knobs
or shower mixer, as well as the bathroom sink, making it easier for the
patients to understand. It may be helpful to install shower gear, such as a
handheld showerhead, shower bench or bath bench, shower caddy, grip bars
or handles, and mats. These will provide the patients with more flexibility
and independence, and also make things easier for you.
It is also important to work on the attitude of the patient toward how they
choose to bathe or shower. Don’t force them to believe they can’t take care
of themselves in the bathroom. Let them have as much freedom as they can
while also being nearby whenever they need help. If patients are resistant to
taking a shower or a bath, encourage them by pairing it with an activity to
look forward to. This could be an outdoor excursion, a visit to a doctor, or
getting some ice cream or a treat.
The most obvious reason a person with dementia won’t want to take a bath is
because of the loss of dignity and independence. They will feel embarrassed
to be unclothed in front of you, but they may also be afraid of other things. In
some cases, people with dementia may fear falling in the bath or slipping in
the shower, water or drowning, feeling hot or cold, or swallowing chemicals
like shampoo and liquid soap. You can help them overcome these fears by
helping them adjust to different situations. For example, warm the bathroom
before they come in. Close the window or vent to let the steam from the hot
water warm up the room. Also, be sure to have everything in place from the
shampoo to the soap, towels, shower stool, and robe.
If they take baths but have become afraid of the water or drowning, start by
filling just enough water for them to be comfortable in while they are in the
tub. Make sure they hold on to the grip bars next to the bath so that they have
control over how deep they are in the tub. Once they feel comfortable
enough, and if they consent, you can slowly add more water. Another obvious
source of discomfort is the water temperature. It’s difficult to figure out
whether the water is too hot or cold for the patient, so look for visible signs
of discomfort. Ask them if the temperature is okay or if it needs adjusting and
make sure they aren’t shivering or showing signs of scalding. Some people
may even find the rush of shower water threatening, so be sure to keep the
shower speed at a tolerable level.
Not only may the patient feel comfortable around you when they are
undressed, but you may also feel the same. This applies to when you are
helping them into and out of the bath or shower or if they need help with the
toilet. First, let them know you are only helping them and are not going to
stare. Second, make sure they understand that this is nothing to be
embarrassed about and that you are there to help them when and as they need
it.
Similarly, don’t try to switch them from showering to using a bathtub or vice
versa. Always go with what they are comfortable with and used to rather than
forcing them to switch, especially if they are able to handle either situation.
As dementia worsens, they may have problems maintaining their balance in a
shower, which is when a shower bench will be useful. If they are still feeling
uncomfortable, suggest they switch to baths. In order to reduce the
awkwardness, suggest baths and showers at times when people have to
change or have their clothes partially off. Ideal times for this are after
returning from outdoors or after waking up in the morning. At the same time,
be mindful of your own schedule as baths can take some time if patients need
help.
To simplify things, get combinations of shampoo and conditioner or a
shampoo-conditioner-body wash combo in one bottle. Not only will you save
money, but you will also reduce the hassle of having to go for different
bottles. Liquid body wash and soap are also more convenient than soap bars
as you don’t have to deal with soap bars slipping away. This is also ideal for
patients who prefer to use soap themselves.
Once you are done, use a towel to pat dry the person instead of rubbing their
skin. At their advanced age, the skin will be delicate and prone to rashes. If
they prefer standing in the shower, make sure that they sit down for you to dry
them. This way, they will be safe from losing their balance and falling.
Now that you have made the house more accessible and safer for yourself
and your patient, we can now go into more detail about behaviors you can
expect in the different stages of dementia and what your best course of action
for them should be.
Chapter 3: Difficult Behaviors
To use the Shakespearean analogy of “The Seven Ages of Man” again, during
your time as a dementia patient caregiver, you may find that looking after
them is no different than looking after a newborn child. They require the
same amount of charm and adoration, the same amount of care and sensitivity,
and the same amount of devotion and attention. Even some of the measures
you take to modify your house, such as removing clutter, getting rid of wires,
fortifying electric outlets, and using devices like baby monitors, makes you
wonder whether you are looking after an infant or an adult.
The truth is not that far off, as this chapter will reveal. Like children,
dementia patients undergo a great behavioral transformation in which they
become more like infants. They become demanding, difficult, and frustrating
to care for, and can be completely helpless at times. The difference is that
this is a full-grown adult—a much older one—whom you may have known as
a different person in your life, perhaps a parent or a close relative. But now,
the wheel has turned, and instead of them caring for you as they did when you
were a child, it is your turn to take care of them. That means putting up with
behaviors that can be harmless at first but may grow irksome with constant
repetition over time.
Repetitive Questions
As a result of the deterioration of brain cells due to dementia and conditions
like Alzheimer’s, the person afflicted will have a hard time keeping track of
a lot of their short- and long-term activities. The memories they were once
easily able to recall will now feel miles away with an ocean in between.
Even recalling where they left an itemthey were holding just a few minutes
ago can seem challenging if not impossible. The only logical solution they
have for this is to ask about it, and they will ask over and over again.
The reason they ask questions repeatedly isn’t just related to the progression
of their dementia. Dementia patients also ask questions because they feel
concerned, anxious, and, at times, insecure about the problem they are facing.
Because they begin to lose their basic communication abilities and face
issues with their rudimentary motor functions, they are constantly in need of
help and require your urgent attention.
In order to help them more effectively, you should carefully observe any
typical issues they face on a repeated basis. The most obvious signs will be
their inability to communicate as well as they did before, looking or feeling
lost in the middle of a routine habit, and seeking out help. Regular
observation of mealtimes, exercise routine, and medication timings will help
you expect what they need and be prepared beforehand. If you notice they
have a certain need at a particular time in the day and they tend to be more
repetitive about their requests around that time, make a checklist. This way,
you can give them some control over what they need and when they need it.
Remember to be empathetic when they ask questions or make requests. It’s
important to understand that while their behavior may feel frustrating and
confrontational, they are not able to control their emotions when making their
request. Instead of reacting to their behavior or actions stemming from it, stay
calm while you look deeper into how they are feeling. Your own attitude
must remain caring, patient, and reassuring rather than reactive and
confrontational. If it looks like they are unconsciously performing an action,
like tapping the desk repeatedly, encourage them with a few taps of your own
and make it a game like you are playing drums. Make it more exciting for
them with some form of musical drumming and see how they react. Music
itself is great for caregivers to create a positive atmosphere around them and
their patients, and it also helps people with dementia feel more relaxed. It
may even help them recall a music-related memory and get them to play a
song they remember.
By the same token, it is also possible your patient might be bored or agitated
because of a lack of activity. Staying idle can create listlessness among
dementia patients, which is why keeping them reasonably active can keep
their spirits high. As long as it isn’t too strenuous an activity for them, engage
them in a lively board or card game, read books together, do arts and crafts,
or collect stamps, stickers, or other items.
Patience will definitely be a virtue here, not to mention your standard
operating procedure when it comes to repeated questions. No matter how
many times they ask the same question, respond with a calm, gentle voice,
with no sign of irritation. Because of the havoc dementia plays with a
person’s memory, they won’t recall having asked the question. This is
another instance where using the word “remember” or trying to remind them
of it should be avoided. Instead, tell them what they want to know as many
times as they ask. You could also write the answer down for frequently asked
short questions, like where things are or what the schedule for the day is and
put it up in a place where the patients can read it. This depends on whether
they are still able to read and understand it, so make sure that you write these
answers clearly in large, bold letters.
Visual aids are also a great asset when it comes to caregiving. Some common
visual aids, including infographic posters, text-based notices and warnings,
and even Post-it Notes, can make things easier for both you and the patient. It
could be a wall planner or calendar where you can make a schedule for
upcoming special events, a timetable with all your activities neatly laid out,
infographic posters that remind people where to put things or what to do
before leaving a room, or warnings placed at specific places in a room or
house. It is also a good idea to make these visual aids large and easy to read
or see.
Large prints of old photographs, preferably those of the patient’s happiest
memories and activities, can also help them recall a lot of things, including
normal activities. If they have a photograph of them painting, then they can
reminisce about the time they used to paint and may want to pick up a brush
again. They can also be photographs or posters of other people walking in
the park, playing games, sitting at the bench and having a laugh with their
friends, and other wholesome activities. Looking at these photographs or
posters could trigger their desire to be involved.
Chanting and Calling Out for Help
One of the more common behaviors shown by dementia patients is a feeling
of helplessness that leads them to call out for help. Even in normal
circumstances, calling out for help automatically triggers an immediate
response. For one thing, a cry for help alerts the surrounding people that
something could have gone wrong. In the case of dementia patients,
caregivers may fear the worst if they are not in the immediate vicinity. It
could be a fall due to poor motor skills or a panic attack due to forgetfulness
or confusion.
Then again, it could also be something as trivial as a spoon falling on the
ground or getting out of place. Trivial to most people, but to dementia
patients, it is akin to losing their sense of control. Regardless, caregivers
have a responsibility to treat these with care and concern. The life of a
caregiver is fraught with tons of challenges, and there will be times when
they become frustrated over the littlest things. Empathy requires caregivers to
remember that their patients are no longer able to work at the same speed as
healthy people do.
The same applies to calls for help. No matter how trivial a problem seems,
caregivers need to treat the situation with just as much urgency and care as
they would a bigger problem. But, like the boy who cried wolf, caregivers
should not become affable and hostile when it comes to repeated calls for
help over seemingly less-important problems. Therefore, it is important to
understand what exactly triggers these calls for help and how you as a
caregiver can handle them with patience and care.
The most obvious reasons could be due to a physical pain or need. They
could be feeling hungry, needing to use the bathroom, or even undergoing
aches, pains, and restlessness. Patients could also feel overwhelmed due to a
noisy environment, poor air quality, a change in their routine, or other
surrounding factors. Furthermore, they may also feel emotionally
overwhelmed over how difficult it is to recall memories and how
challenging life has become for them that makes them reminisce about the
times when they were fit and healthy. Such recollections create a melancholy
feeling where they find this drastic change in their life too much to bear. They
become sad and distressed over how they have been dealt with a cruel hand
of fate and can’t help feeling they have lost so much control of their life,
resulting in depression and even ideas of self-harm or suicide.
This can lead to their crying out for help—literally by crying. Being under a
great deal of emotional stress, they will not be able to control how it all
pours out of them. This is not just when it comes to outbursts of anger. They
may also cry over helplessness. Over time, this habit can turn into a default
response for every little mishap rather than due to actual sadness, with no
way for you to distinguish between the two. In some cases, they may not even
be able to explain why they are crying or screaming for help. If it isn’t due to
a sad memory or depression, it could also be due to a delusion or paranoia.
In further chapters, we will go over how delusions, paranoia, and visual
hallucinations are also an initial and recurring symptom of dementia which
can invoke a great deal of fear in patients.
Patients with Lewy body dementia, frontotemporal dementia, and vascular
dementia are more prone to outbursts of crying and calling for help. Another
condition known as the pseudobulbar affect (PBA) is prevalent in around
29% of patients with Alzheimer’s (Tan, 2018). The symptoms of PBA are
sudden and uncontrollable bursts of laughter or crying for no reason and
which may not truly be indicative of how the person is feeling. The reactions
can also switch from laughter to crying and from crying to laughter without
any reason. Oftentimes, the outbursts are random, but other times they could
be exaggerated responses to simple triggers. These aren’t hard to miss, and
they could even be shocking, like when they start crying uncontrollably at
some small bit of bad news or laughing out loud at a serious or somber
setting such as a church sermon or in a hospital waiting room.
In the middle and latter stages of dementia, a phenomenon known as
sundowning is also known to create a feeling of sadness and helplessness in
patients. As the name suggests, sundowning occurs as evening starts rolling
in, creating a mood of confusion, restlessness, exhaustion, and irritability. As
daylight starts to dwindle, dementia patients may call out a lot more for help
and even start crying, which proves to be a unique challenge for caregivers
who may already be reeling from a tiring day. In this situation, there truly is
no rest for the weary.
When such behavior becomes common, caregivers can and do tend to label it
as usual and irrelevant behavior. Instead of looking for a root cause behind
the crying and calling out for help, caregivers may shrug it off as behavior
that can’t be helped. This can be a mistake because, by ignoring such
behavior, caregivers could miss signs of actual distress. Caregivers should
identify any times of the day that patients did not call out for help and cry
uncontrollably. It could be at a specific time of day or after a meal or
medication. It could also be while they are playing games, reading, watching
TV, or during any of the patient’s routine activities. With this knowledge, you
can then attempt to recreate the same scenario in which they felt happier. If
they felt more relaxed while playing a card game, then you should tell them
excitedly about playing it again to calm them back down. Watching their
favorite movie or TV show can also cheer them up, so make sure you have a
streaming service or collection of DVDs handy. You should also evaluate
whether or not they are crying out of pain or discomfort. It is very much
possible that they won’t be able to say if anything is bothering them, so give
them a once-over to make sure they aren’t in a physically uncomfortable
position and are not exhibiting any symptoms of pain. These include wincing,
fidgeting, grimacing, frowning, holding on to a part of the body, teeth
grinding, and more. If it is something that requires medical attention, take all
necessary steps to provide first aid or call emergency services.
Consult with the patient’s doctor or a pharmacist to see if any of their
existing prescriptions may be causing side effects such as depression,
anxiety, disorientation, or pain. It is also possible that a combination of
medications may be responsible for the above symptoms, so do make sure to
ask about this and get an alternative prescribed.
In the next chapter, we will examine just how much you can be affected by
behaviors that are far more irrational than you bargained for.
Chapter 4: Irrational Behaviors
In the previous chapter, we briefly touched upon how people with dementia
are prone to various kinds of delusions, paranoia, and hallucinations that
make them confrontational toward and untrusting of other people. As their
caregiver, that makes you the first person they will share these delusions
with, and most likely, the cause of these delusions as well. It’s important to
understand just why they feel so strongly about these delusions no matter how
far-fetched or untrue they might be.
Delusions and Paranoia
Let’s start with what delusions are. These are strongly held beliefs by people
with dementia that make them feel a certain way, but the beliefs themselves
are mostly false. These delusions occur during the middle-to-late stages of
Alzheimer’s and other dementia-related illnesses. They are produced by
confusion brought on by memory loss and make dementia patients feel
threatened by anything and everything. They may feel like someone is
watching them, out to get them, or trying to steal their possessions. Such
delusions can progress dangerously toward paranoia, which itself is
highlighted by delusions of being persecuted. To make matters worse, this
paranoia can create a fear of invisible and nonexistent forces that are
threatening the patient, which can make patients suspect everyone, especially
you.
Any small comment or action can trigger these delusions and heighten them to
full-scale paranoia. For instance, a public service announcement about a
spate of burglaries in the vicinity could make patients believe they are going
to be targeted next, and thus, they fret over the security of their home. Or a
news item that highlights water hygiene could make patients feel the need to
improve their water filtration system. In any case, most of these delusions
exaggerate the concern; however, people with dementia will remain adamant
about their point of view without any reason or evidence.
Much like the other mental symptoms of dementia such as memory loss and
difficulty recalling things, delusions can greatly affect the way people with
dementia perceive reality. If these delusions are telling them certain things,
then they consider them to be real, no matter how irrational they may sound.
Moreover, if other people, including caregivers, do not agree with their
delusions, then patients will view them as part of the problem as well. No
matter how much you don’t want to believe them, trying to convince them
otherwise is only going to make them consider you with suspicion and
distrust.
Aside from delusions about someone else threatening the patients, they could
also be about the fear of losing things or being abandoned. For instance, if a
person with dementia has a house, a piece of land, a motor vehicle or some
other form of movable or immovable property in their name, they may
become distrustful of others and believe they want to take the property away
from them. This could include family members, friends, and other close
relatives. Furthermore, they may also have delusions about their spouse or
partner leaving them likely due to the dementia diagnosis or having an affair.
Another common delusion is the impostor—or Capgras—syndrome in which
patients might believe that their spouse is not their spouse, or that they
themselves aren’t who they are supposed to be. In other cases, patients may
not recognize their own home despite having lived there for years.
Delusions are often caused by a patient’s inability to piece together their
memories and other details properly. This causes gaps to form between one
piece of information or memory and another which the patients are unable to
fill with anything credible. Due to this, they form false conclusions about
what those gaps should hold and believe them to be true when they are not.
Oftentimes, because of these delusions, the gaps are filled by negative details
that further heighten their paranoia and trick them into believing they are
being persecuted.
Hallucinations
A natural outcome of delusions is a more visual and even aural
representation that dementia patients may encounter from one moment to
another. To the patient’s eyes, they are able to see, hear, and interact with
things that are not truly there but to their senses feel just as real as anything
else. Patients hallucinate objects, people, locations, events, and more, and
believe everything happening in front of them is real even if no one else can
see it. This results from the changes in a patient’s brain due to dementia,
particularly in the later stages.
These hallucinations are normally benign but can put a patient on edge as
they are not expecting to see random objects or people appear out of the blue.
It could be an old friend that they haven’t seen in ages, a school bully taunting
them, an ex-partner with whom they had a rough falling out, a personal
possession that was taken away from them, or other unpleasantries. Usually,
these hallucinations are based on past memories that are returning to them,
but with the strange nature of how dementia affects the brain, the patient is
unable to piece them together properly. Instead, these memories project to
their senses in ways that frighten them and, coupled with delusions, impact
patients negatively.
Imposter Syndromes
Where delusions can lead to hallucinations, the latter can themselves create
the chances for impostor syndrome. Known also as the Capgras syndrome,
this occurs in Lewy body dementia as a correlated condition to
hallucinations. The dementia patient will start experiencing Capgras
delusions in which they accuse you of being someone else, or they may
accuse someone they have known for a long time of the same thing. The most
common target of such an accusation is a spouse or partner and children.
They may even believe that they aren’t who they are supposed to be either, or
at least feel that they shouldn’t be in the place they are at present. According
to the Lewy Body Dementia Association, Capgras syndrome is “temporary
but sometimes repeated belief that a caregiver, family member, or location
has been replaced by an identical imposter.” Capgras syndrome is common
in up to 17% of people with Lewy body dementia (Heerema, 2021).
Impostor syndrome has been observed in patients with Alzheimer’s and
Lewy body dementia. However, patients can also be at higher risk of
developing Capgras syndrome due to heightened anxiety. Patients with
Parkinson’s disease and frontotemporal dementia are also likely to
experience Capgras syndrome, as Parkinson’s and Lewy body dementia are
very closely linked. Other conditions such as strokes, schizophrenia, and
drug abuse can also result in impostor syndrome as all of them result in a
degradation of the brain. And as with delusions, paranoia, and hallucinations,
your role as a caregiver becomes even more difficult and frustrating when it
comes to dealing with impostor syndrome.
Managing Accusations
As a caregiver, the first thing you must remember is that you are in the direct
firing line of any accusations when it comes to delusions, hallucinations, and
being labeled an impostor. Since you are the person taking care of them and
managing their lifestyle, it isn’t a stretch for them to realize that if something
feels wrong, you are likely the cause. It also doesn’t help if your first
response to any accusations is to get on the defensive. Even if you know they
are experiencing a delusion, don’t forget that to them it is reality. This means
swallowing your pride and not reacting defensively if they lay the blame at
your feet.
Still, it doesn’t mean you can’t defuse the tension between you. It simply
means you need to find more subtle ways to take their mind off their
paranoia. You can start by getting them to open up about how they feel and
what makes them think something is wrong. Whether it is going through
impostor syndrome, believing their loved ones are out to get them, or having
suspicions of unfaithfulness, getting them to talk about it can not only help
your patient to unburden themselves, but it can also help you to listen and
find clues about what is prompting them to feel that way. For instance, they
might feel their spouse is unfaithful just because they notice them spending a
long time texting on their phone. Similarly, they could be under impostor
syndrome if the furniture in the house has been rearranged.
Once you get more details about what is triggering their delusions, the next
step is to acknowledge how they are feeling. This is an ideal response
instead of brushing off their concerns. Using expressions such as, “That’s
ridiculous,” “There is no way that’s possible,” “It just doesn’t make sense,”
or, “You’re being paranoid,” can fuel their delusions even more. Moreover,
they will also consider you part of the conspiracy against them, and you lose
their trust and confidence. At the same time, distracting them with something
else will take their mind off it for some time, but if the delusion is strong
enough, they can see through your ruse once they set their mind on something.
Instead, the best solution is to acknowledge how they feel. Use phrases like,
“I hear what you’re saying,” “That must be awful,” or, “I’m sure we can both
figure it out.”
From there, reassure them you will look into it. If they think someone is
stealing something from the house, let them know you will check it out. Don’t
just make a token gesture; show them you are taking it seriously. Try
searching for the missing items in their presence and make it look like you
are investigating the matter. There’s a good chance you will find the item
hidden somewhere they’ve forgotten, and you can readily put them at ease. If
they question where you got it, you can come up with a reasonable answer so
that their delusion breaks. In another instance, if they feel their family or
friends are poisoning their food, get them talking about alternative food
options from meal delivery services or ready-to-cook meals at home. This
can give them more control about making their own decisions.
Aside from the above, you should also make sure that there aren’t any
medical symptoms or issues that could be triggering the delusions. Dementia
patients are prone to sensory impairment such as vision and hearing, which is
why having regular eye and hearing tests is essential. Though delusions are
not very common in frontotemporal dementia, patients with Lewy body
dementia can experience them a lot more frequently. The same applies to
later-stage Alzheimer’s and vascular dementia. It’s also important to note if
these delusions have appeared completely out of the blue instead of slowly
developing. If so, it could actually be delirium and should be treated as an
emergency. Consult with the physician if a patient is feeling distressed due to
ongoing delusions and consider getting a medical prescription.
Interestingly, hallucinations occur in conditions other than dementia, like
schizophrenia, eyesight or hearing impairments, side effects of different
medications, and physical conditions such as dehydration, bladder or kidney
infections, intense pain, or the aftermath of substance abuse. As with
delusions, getting a patient checked by a physician is important so that other
medical conditions can be ruled out. This includes evaluating the patient’s
medication as well as carrying out eyesight and hearing tests.
The best approach to deal with hallucinations is without antipsychotic
medications. Due to the age factor of the dementia patients, there is always
the risk of stroke and death with such medications, which is why it is
important to understand the benefits as well as the hazards any such
medications may have. Therefore, such medication must only be used after a
thorough discussion with the physician and only when the hallucinations are
severe.
Instead, do your best to determine whether or not the hallucination is a major
concern. Mostly, these hallucinations are going to cause a lot of distress to
the patients and trigger panic, fear, and arguments. When hallucinations
occur, remember to be comforting and reassuring. Rather than arguing with
patients that they are just seeing things, let them know that you are there and
that they are safe from whatever it is they are seeing. You can use phrases
like, “It’s all right,” “I’m here now; there’s nothing to worry about,” or, “I
won’t let anyone hurt you.” Let them tell you what it is they are seeing and
assure them you will take care of it. By being reassuring, you can redirect
their attention to you instead of the hallucination.
As long as you are not patronizing them or pretending to shoo away the
hallucinations, your efforts at calming them down can have a great effect. On
the other hand, there is also a chance they might wizen up to your approach.
This is why you shouldn’t indulge them in their hallucination by agreeing to
what they see. Being honest, on the other hand, is a better approach. Rather
than saying you can see the hallucination, tell them honestly that you believe
them, but you don’t see what they’re seeing. Take them out of the room,
preferably to a well-lit room, so that they can get a change of scenery and
possibly stop seeing the hallucination. If it doesn’t help, get them outdoors.
Daylight itself should make them feel better. This approach also works at
night as it still shifts them from one place to another. Stay outdoors for a little
while till they start to calm down. Offer to check back inside promptly o
make sure that there is nothing there before you bring them back inside.
Be prepared to handle the varying intensities of the hallucination. Whether it
is a threatening figure from their past or even a perceived supernatural
creature, if it is something that is genuinely scaring them, make sure the
hallucinations don’t threaten them physically. Most importantly, be sure the
dementia patient does not have access to any objects that could be used as
weapons. Not only guns, but knives or blunt objects they can use to harm
someone should be kept well out of their reach. If they use a walking cane,
then approach them with caution.
You can also take some preventive measures by checking the rooms and
surroundings so that there aren’t any objects that could trigger a
hallucination. For instance, some shadows could look frightening, and if the
patient has a habit of hoarding, there are a lot of possibilities there. Be sure
to have proper lighting in the room to reduce suspicious shadows. The same
goes for reflections or distortions. If the room has a TV or a mirror, check for
strange reflections that could be visible from the patient’s line of sight.
Speaking of electronics, strange noises could come from TVs, speakers, or
the air conditioner. Have a professional check them out before they become a
continuous trigger or irritant for your patient.
Approach the situation in a similar way as how you handle delusions and
hallucinations. For starters, remain calm, patient, and understanding of what
they are going through. They may resort to physical aggression in addition to
verbal aggression especially if they believe you are an impostor. Fighting
fire with fire will not help either one of you, so there is no point in arguing
with them. If they believe you are an impostor, don’t argue with them about it.
Instead, tell them you are there to help, whether you are their caregiver or
not.
If the patient is adamant, they do not recognize you and become verbally or
physically threatening, it doesn’t hurt—pun intended—to remove yourself
from the situation. Simply exit the room and wait for a little while. Stay
within earshot so you can determine when the coast is clear. Additionally,
using a baby monitor to listen to what is happening inside can also help you
to be aware of what they are doing when you aren’t in the same room. When
you feel things have simmered down, take a deep breath, shake off the vibes
of the earlier encounter, and walk back inside with a smile and a cheery
disposition as if nothing has happened. Greet them like you normally do with
a loving voice and ask about how they are.
Usually, they will be able to recognize your voice and feel reassured, if their
brain isn’t too damaged to forget about you. But a loving, caring voice can be
a relaxing solution that puts them at ease and helps them come out of the
delusion. The same goes for any familiar sights and sounds, whether it is a
favorite song, piece of music, movie, sport program, or TV show. Playing
any of those or even humming a tune that they recognize can provide them
comfort and help them recognize you as a familiar person.
Much like hallucinations, be careful when using medications like
antipsychotics for treating impostor syndrome. The medications will be
similar to those for the treatment of delusions, paranoia, and hallucination,
but they also run similar risks as mentioned above, with greater risk for
people with Lewy body dementia. Before starting any medication, it is
important to inform the physician that the patient appears to have impostor or
Capgras syndrome so that it can be assessed.
If these delusions or hallucinations are properly managed and you are able to
keep your attitude positive, you can ensure a healthier quality of life for the
patient and yourself. However, there are also situations in which the
disconnect in their mind from reality can veer them into unpredictable,
hazardous, and even life-threatening territory, which is what will be
discussed in the next chapter.
Chapter 5: Unpredictable Behaviors
One of the most common priorities all caregivers have is assuring the safety
and well-being of their patients with dementia. While they are undoubtedly
working toward providing them the best quality of life possible, it becomes
all the more difficult when caregivers must also protect them from all the
dangers around them. As if clearing out the house of unwanted items and
creating a calm and soothing environment wasn’t difficult enough, caregivers
must ensure that their patients don’t find themselves in situations where they
become a potential threat to themselves, whether physically or mentally.
Sadly, the disconnect caused by dementia can, and will unfortunately, put
their lives in danger.
Wandering
So far, you have gotten an idea of what to expect in people with dementia,
including the various recurring and irrational behaviors they do not–and
cannot– have a lot of control over. Getting the patient under control and
calming them down is itself a challenging proposition as long as you can get
them to listen to reason. But what if you take your eyes off them for a
moment? What if you are taking care of a random chore, such as preparing a
meal or cleaning the house, when you realize the patient isn’t where they are
supposed to be? You look around their common places but see no sign. That’s
when it occurs to you the patient is no longer in the building.
Due to the deterioration of the brain caused by dementia, patients are no
longer certain what aspects of their life are real. Moreover, the disconnect
between their various memories can lead them to believe they are in an
earlier time and doing something else entirely. For instance, an 80-year-old
dementia patient can suddenly believe they are in their 40s and should be
heading out to work. They could follow their past routine of getting dressed,
picking up their bag, taking a bus, or starting up their car and be well on their
way to work before they realize something isn’t right. As for you, the
caregiver, you will be on pins and needles trying to find them with little to no
idea where they’ve gone.
In this episode of wandering, the patient unconsciously or even consciously
decides to leave their house or premises and makes their way toward a place
only they know and remember. It could be their old high school, their
previous job, or a regular haunt they used to visit with their friends. If they
are still living in the same town and the same house, it shouldn’t be too hard
for them to hone in on those locations either by walking or picking up public
transport. In any case, they can undertake this journey as if they were their
previous selves, oblivious to what has happened in all the years since their
dementia began. All they can think about is getting to their destination to
fulfill their goal, get to work, make it to class on time, or catch up with their
friends.
Alternatively, wandering can also occur without them even realizing that they
have drifted outside their present routine. For instance, they might be at the
park with you when you may get distracted or become involved in a
conversation with another person. In the meantime, the patient could start
looking around till something catches their attention. It could be a small
animal scurrying around or a passing vehicle. Something in their mind clicks
and they want to follow the object of their attention to where it goes, mostly
out of curiosity than anything else. In another instance, patients may be in a
hospital, an office, a supermarket, or any sort of building where they could
get lost while trying to find the water cooler or a bathroom.
Whether patients wander consciously or unconsciously, they always have a
set goal in their mind which can lead to serious consequences. To begin with,
pursuing a set goal means they act with a kind of tunnel vision in which they
become unaware of what is happening around them. The only thing they can
see is what they are after, which can lead them to harmful situations. What if
chasing an interesting animal or a bird leads them to a road with traffic and
they face an accident? The threat to their well-being while wandering is very
real.
Wandering does not typically occur during the initial stages of dementia.
While it may appear they are not sure where they are going, that is because
they are lost. For instance, they may be off to an appointment with a
physician but may have gotten confused about the route to take. Within earlystage dementia, patients face more instances of disorientation rather than
having a set destination in their mind. That normally occurs in later stages of
dementia.
Because dementia affects patients in different ways, it’s hard to tell just what
the reason behind their wandering is. In most cases, caregivers only get to
see the aftermath when dementia patients are located. The most likely place
they will be found is on the way to some destination, but their confusion over
where they are makes it difficult for them to tell you why they went out there
in the first place. While it isn’t a huge mystery for you to solve, it does help
you to gain more insights about why they are acting the way they are.
Furthermore, you can make a note of such behavior and compile a list of
possible places they could wind up if they wander off again. These include
places they are familiar with. It is possible those places no longer exist,
particularly restaurants, cafes, bars, offices, and libraries they used to
frequent. If you find your patient has made their way to any of those
locations, try to build a rapport with the proprietor or staff and let them know
about your patient’s situation. They should be able to understand and, if
nothing else, offer to text you if your patient is there again.
Ultimately, it is your responsibility to limit their wandering and reduce their
chances of getting lost. For starters, make sure that the exits of the residence
are locked. If you want to keep your patient safe, have a keyed deadbolt
installed in the exits and remember to properly lock them while you are
inside. You can also install an additional latch at either the the top of the door
or the bottom, as long as it isn’t easy for the patient to access. And while
you’re at it, you can also put in a door chain. The important thing to
remember here is that you need to lock the door whenever you enter the
house. If you have doorknobs, you can get some loose-fitting doorknob
covers that will turn instead of the knob. Moreover, be sure to keep the keys
of the locks on your person or out of the patient’s sight. These precautions
should be in place while you are also present in the house, as you are the
only person who can unlock the doors in the event of a fire, an earthquake, or
any other emergency.
There are other, subtler ways to keep your patient within the confines of the
house. A door chime or bell that rings whenever a door is opened—like in
stores—is a great low-budget alarm, but you can also get an electronic
sensor-based buzzer installed on the doors. At the same time, make your exits
look less like exits by decorating them with curtains, blinds, wall posters,
and so on. The goal here is to make the exit doors look like they were walls
rather than ways out. If possible, you can also stick wallpaper on the door
that matches the rest of the walls. These can be good distractions for people
with dementia, and they would instead head for doors that do look like doors,
leading into the bathroom or bedroom. It also won’t hurt to put up bright red
signs on the doors with the words “Stop,” “Closed,” “No Admittance,” or
similar infographics in case patients aren’t able to read well.
Doors aren’t the only ways a dementia patient, or anyone for that matter, can
exit a house. Windows, especially those on the ground level, should also be
properly shut and latched. Childproof locks, window security bars, sliding
glass door security bars, door jammers, and other door and window safety
devices are available in most hardware stores and are easy to install. Most
of these can be custom set to open up to a certain point if you like, but ideally
keep them closed completely. If the house or property has a fence, have it
checked and secured and keep the gate locked. If you live in an apartment
building or a condominium, let your doorman or attendant know about your
patient’s situation so that they can keep an eye out. Much like how you cover
up the door, you should also reduce other visible triggers for dementia
patients to try and leave the house. This can be done by removing any keys,
hats, coats, bags, wallets, carry-ons, suitcases, shoes, coat racks, and other
similar items people associate with going outside away from view.
If your patient has wandered out of the house previously without your
knowledge, make sure you stay as close to them as you can and keep an eye
on them. Even so, you will have to leave them unattended occasionally. This
is where baby monitors can be very useful. Though they are mostly targeted
for parents of newborns, there is no reason baby monitors cannot be used for
elderly care. The modern ones come with a host of features, such as video
cameras and motion detection, along with the traditional audio transmission.
There is also a sensor-equipped floor mat that you can place in front of their
living room chair or next to their bed. This mat is equipped with a pressure
sensor and notifies you if your patient has stepped on it. It’s also very useful
if your patient experiences a fall. Similarly, a pull-cord alarm system can be
placed where patients are seated or lying down. These are pretty portable
and don’t need a lot of fuss to set up. With all these electronic devices, make
sure that they are properly charged or that their batteries are up to date.
Another important and basic solution is to have the patient wear a medical
bracelet or carry some kind of ID. A simple medical alert bracelet with the
person’s name and an emergency contact number clearly written on it will
help other people to call you in case the patient is found wandering outdoors.
It should also include the patient’s address in case you aren’t reachable on
your phone, as well as any medical information including, but not limited to,
allergies, conditions, and special instructions. You can also get custom dog
tags made with the same information for your patient, which might feel
familiar to them if they are military veterans.
If money isn’t an object, then you can also get portable GPS trackers. They
are used to keep track of luggage, wallets, and other items the patient is
prone to lose, and they can also be used to keep track of a person with
dementia. Additionally, sew labels inside the patient’s clothes that contain ID
and emergency information, and keep some of their unwashed clothes in a
bag in case you need a police dog to locate them by scent.
Speaking of the police, let your local police and neighborhood watch
committees know about your patient’s wandering habits. This way, your
neighbors and local authorities will know to get in touch with you right away
if your patient is found rambling. Also, make sure you have several copies of
a recent photograph to help organize a search.
Sundowning and Quality of Sleep
In an earlier chapter, we briefly touched upon the phenomenon of
sundowning. Once the sun starts to set, patients undergo a depressive change
in their mood, which results in sadness and helplessness. This also makes
them seek assistance more by calling or crying out for help. In countries and
regions where sunlight penetration is scarce, even those not afflicted with
dementia can undergo similar feelings when they don’t get enough sunlight or
notice the days are gloomy. This usually happens during winter and cloudy or
rainy weather and is also categorized in some cases as seasonal affective
disorder (SAD). In SAD, people start feeling depressed for a prolonged
period till they gradually start to recover, and this recurs the same time each
year. The most common periods of SAD are from fall to winter with a
recovery period beginning around spring.
Sundowning, on the other hand, isn’t seasonal. This occurs to people
suffering from various forms of dementia including Alzheimer’s; however, it
is also a general symptom of aging. Symptoms of sundowning include
confusion, restlessness, exhaustion, and irritability. The exact cause of
sundowning is unknown, but some explanations link them with common
behaviors in dementia. Most of the time, it is due to the general confusion
prevalent in patients that makes them unsure whether it is night or day, but it
could also be due to a mix-up in a patient’s internal body clock. Furthermore,
it could also be brought on by dim lighting and an increase of shadows which
makes them feel as if it is getting dark, even though it may be just after noon.
Another reason could be due to a change in their quality of sleep. As most
older patients find that they are sleeping less than they used to, dementia may
be creating exhaustion from which they cannot recuperate with the amount of
sleep they are getting. Moreover, they may also be unable to distinguish
between reality and what they see in their dreams. Due to this, they will be
worried if their dreams could manifest into reality, which is another reason
why they may be afraid of the approaching dusk. There is also the possibility
of how patients perceive the behaviors of others, especially their nonverbal
behaviors. Even if other people do not outright say it, dementia patients may
feel as if they are being judged by others, and this can also heighten their
stress levels, making them even more depressed.
Ideally, you can try to reduce sundowning by managing the atmosphere for
them. This should be a livelier and more positive atmosphere for the patient
during the day and a calm and relaxing one during the evening. Start the day
with a proper routine of getting dressed, having breakfast, going out for
exercise and fresh air, and taking care of any errands that they like to do. This
way, they will get plenty of sun and a sufficient amount of outdoor activity
before they retire indoors. It’s also the time when they would be at their most
alert, so make the most of it. Be sure to keep set mealtimes so they are getting
proper nutrition and energy.
By the time the evening rolls around, let them have a more relaxing
environment with little to no background noise. This includes loud music,
social gatherings, chores, TV shows, and so on. It will help them to
understand how their internal clock should be working so that they can
distinguish between day and night.
Also, be sure to observe any patterns and behaviors that may trigger their
sundowning. Look at what happens right before a patient goes into sundown
mode. It could be due to seeing something, interacting with someone, pacing
around a particular part of the house, or doing a specific task. If they get too
restless, suggest playing a game, looking at photo albums, watching a movie
they like, listening to soothing music, or doing an activity together. Make sure
they are getting plenty of rest so that they can replenish their energy for the
next day.
As discussed earlier, keep the house well-lit after sunset so that they do not
get depressed due to a gloomy atmosphere. Moreover, it will also eliminate
any fears they may have due to any perceived threats hiding in the shadows
cast by bad lighting. Also, adjust their eating habits with a large lunch and a
light dinner. Eating light before sleeping improves the quality of sleep and,
also, reduces the unease of a full stomach. In the same vein, keep a check on
their caffeine or nicotine intake and avoid alcohol at night to reduce any
impairments. It is best to eliminate those completely if possible. Higher
levels of caffeine and alcohol can also affect a person’s quality of sleep,
more so in older people. If the patient has a habit of taking naps in the
daytime, limit them so that they can get more time to sleep at night.
There is only so much you can do to help a person with dementia manage
sundowning. Nevertheless, if any changes in the environment and habits
aren’t having an ideal effect, it is best to consult with the physician in case
medical conditions like infections, incontinence, restless leg syndrome
(RLS), or sleep apnea are causing the sundowning. Doctors will do their best
to recommend solutions that do not rely on medications, but they may be
prescribed in case those solutions do not pan out.
If you notice the patient becoming more agitated due to sundowning,
remember to stay calm and approach them in a friendly and helpful manner.
Even if it is later in the day and you are exhausted, keep your tone and
attitude polite, relaxed, and empathetic. This is especially important if they
wake up in the middle of the night, and in the process, so do you. Keep a
glass of water handy and ask them if they need anything or if something is
bothering them. If they are willing to talk, let them tell you how they are
feeling. But if they do not respond, let them know it is late and they should be
resting. Stay with them till they drift off, so they feel safe.
Do your best not to be confrontational. In their agitated state, the last thing
they need is for you to be argumentative, particularly if they are seeing things
that aren’t there. Reassure them that everything is alright and gently pat them
or hold their hand to make them feel safe. However, be sure never to force
them to calm down or restrain them physically as that can worsen their
agitation. Tell them everything is alright and that you are there to keep them
safe. If they are off the bed, let them pace around the room till they simmer
down without leaving them alone. If this becomes recurring behavior, consult
the physician for treatment and medications.
In the next chapter, we will examine how the damage brought on by dementia
can eradicate all kinds of inhibitions within a person, making them more
likely to lash out at the slightest provocation.
Chapter
6:
Aggressive
and
Embarrassing
Behaviors
Even if you are not directly related to the dementia patient you are caring for,
you may have known them from before they were diagnosed. In most closeknit communities, caregivers often find themselves looking after people they
have known all their lives and watched age. It could be a teacher, a next-door
neighbor, a post office clerk, a convenience store cashier, or the local pastor.
They may have been mild-mannered, kind, considerate, and inspiring when
you knew them before, but dementia can utterly change a person; not by
appearance, but from their behavior, outlook, personality, habits—the
possibilities are endless.
The moment they start using profanity in your presence, you cannot help but
be aghast. Several thoughts run through your head, like, “I can’t believe he
said that” “I didn’t even know she knew that language,” “I’d have gotten a
good amount of scolding if I ever used language like that,” or, “This is so
unlike them.” Indeed, it is unlike them to behave this way, but don’t forget
that they are not the same person you knew all those years ago.
That’s just one aspect of embarrassing and aggressive behavior. Since they
aren’t as docile as you remember them, dementia can cause people to exhibit
hurtful, aggressive, and disinhibited behaviors that you never thought they
were capable of. These behaviors can also cause you massive
embarrassment whether they take place in the private setting of the house or
in public places like a supermarket, mall, restaurant, or hospital.
Profanity
Profanity can be a mixed bag in everyday life. On the one hand, the people
using profanity—including the dreaded four-letter words and their variations
—find that they gain a linguistic and emotional freedom to express
themselves with more clarity and intensity and leave a lasting impact on their
audience. If you are on the receiving end, on the other hand, listening to
profanity is not only awkward and embarrassing, but if done enough times,
can also be hurtful and threatening. In dementia, there is no telling how often
a patient will resort to using profanity, nor can anyone determine at first how
intense their use of profanity will be. They could use it as exclamations when
things go wrong, like when they drop something in public or face difficulty in
basic physical activity. Most of these will be limited to four-letter words that
they either mutter under their breath or say outright. If they are really
frustrated, they won’t hesitate to yell it out either, which can be alarming and
awkward in a public place. It becomes even more challenging for caregivers
to put on a straight face and control the situation when a patient cries out with
profanity in public.
Things can start to heat up, though, when a person with dementia directs their
profanity at another person. This could be someone in the crowd, someone
passing by, someone on TV, or someone in the room. Because they have
trouble recognizing who those people are, they will either take out their
frustration on anyone, believing them to be someone else, i.e., impostor
syndrome, or they will let out some deep-seated feelings they had bottled up
for a long time against a particular family member, friend, or even you. This
is where their volume is raised, their tone is confrontational, and the rate of
swear words feels as if each sentence is punctuated with them.
If you find yourself in their line of fire when they start shooting off profanity,
then it is very likely that these words have a much deeper meaning than you
realize. It might be because of their inability to take care of something basic,
but it is possible that they are directing their anger at you for something you
or someone else has done. Either way, profanity is yet another way in which
you may feel underappreciated and taken for granted.
Nevertheless, it is important to understand that this happens because the
capability to hold back true sentiments about something or someone begins to
wane as dementia wreaks havoc in a person’s brain. Using profanity more
often is an obvious sign of the behavioral changes patients undergo as they
find themselves unable to control such brash and negative behavior. Even if
they are referring to you directly or using you as an outlet for someone else,
remember that they can no longer help themselves.
Still, there is no denying that it is going to hurt. But that comes part and
parcel with the territory of being a caregiver, which is why there are certain
tips for you to cope when you find that profanity is becoming a regular
occurrence. One that you will get to hear a lot about is to develop a thicker
skin or build up an emotional shield. Instead of taking whatever they say
personally, look beyond the profanity and try to find the true message they
want to convey. Oftentimes, it is something they are feeling frustrated with or
is bothering them. It is even possible that they could be reacting defensively
to a hallucination or a fear. In any case, look at the use of profanity as another
call for help and try to desensitize yourself to the swear words themselves.
Next, make every attempt to defuse the situation. It might take some effort to
divert their attention from what is bothering them and replace it with
something they might find enjoyable, such as a snack or a dessert that they
like. Keep your tone calm and do not respond to them with a similar tone of
voice, as replying with a loud or harsh tone of voice can escalate the
situation further. You can even use laughter to calm things down and bring
about a cheery atmosphere. Alternatively, sometimes taking no action is the
best action. Why not let them express what they are holding inside and give
them a chance to bring everything out into the open? It might even provide
you with insights about what they are thinking as well as the memories that
they are recalling and help you see if any past experiences are the cause of
their agitation.
The most important thing to remember, much like with everything else, is not
to let profanity get to you.
Disinhibited Behaviors
Profanity isn’t the only sign the patient is losing their grip on their behavior,
and it certainly isn’t the most offensive, no matter how crass it is. Since
people with dementia have little to no understanding of how their behavior is
making them appear in public, or they do not care about it, the social rules
that everyone abides by no longer apply to them. That isn’t a privilege but an
unavoidable consequence of the stage of dementia the patient is experiencing
at that time. It starts with profanity and can deviate to rude, tactless,
embarrassing, and downright offensive behavior that one does not expect to
see in a private setting, let alone in public. Once such disinhibited behavior
does occur, however, it not only shocks and embarrasses caregivers and
families, but it also worries them as to what could happen next.
An unfortunate disinhibited behavior that is both shocking and threatening is
a dementia patient’s sudden and brazen display of hypersexuality. While
other symptoms of dementia impair a great deal of a person’s physical and
mental capabilities, it is rather surprising to discover that their sexual desire
does not seem to have waned at all. If anything, their lack of physical and
mental activity at the level they were used to before they were diagnosed
with dementia may result in their inner sexuality asserting itself more than
usual. And with their minds already unable to fully comprehend or control
their actions, it is very likely that elderly people with dementia may make
sexually inappropriate remarks and even resort to physical acts of sexual
misconduct.
Regardless of age or gender, sexual appetite does not diminish for everyone
as they get older. If they had an active sex life before, they may retain the
same vigor toward sexual desire that they did before, if not see an increase.
But with dementia, a person begins to lose the restraint that they had over
their sexual inhibitions which kept their behaviors in check and maintained
social decency. When that restraint begins to degenerate, all bets are off, and
all social decency is tossed aside.
In the case of elderly citizens who are not diagnosed with dementia, it is
possible that they no longer care about maintaining a social contract which
requires them to behave appropriately and not cross the line of decency.
However, in the case of people with dementia, they may not know what they
are doing nor are they able to control their actions. This applies to major
neurodegenerative diseases, including Alzheimer’s, frontotemporal dementia,
and Parkinson’s disease. Unfortunately, as with most things that fall onto a
caregiver’s shoulder, so too does the fallout of any sexually suggestive or
inappropriate behavior that takes place in public. Worse still, caregivers may
also be the victims of such sexually inappropriate behavior that leaves them
feeling shocked, violated, and frightened.
There are different ways that sexually inappropriate behavior can take place.
It could start with simple flirting that borders on inappropriate or sexually
suggestive comments about people around them. It doesn’t matter if they are a
neighbor, stranger, family member, or even the caregiver, the person with
dementia will not be able to make any distinction if they find themselves
disinhibited. From there, it could escalate to light touching that may feel
innocuous at first but could soon move toward sexually inappropriate,
involving gentle pats that turn into caresses or deliberate touching of
someone’s sexual parts. If unchecked, the person may feel disinhibited
enough to attempt to grope someone and, should they be able, try to force
themselves on someone else. This may or may not include a direct offer or
request to the other person to let them perform sexual acts.
Aside from these actions, a person with dementia may also remove their
clothes without any warning and in any place: restaurants, malls, hospitals,
and home. They won’t know the difference. It could be because they may
have lost all track of time or sense of location, making them believe that they
are getting undressed to take a shower, or just changing their clothes. If that is
genuinely the case, then the ultimate realization of their actions is likely to
make them frightened and vulnerable, which is no doubt a cause to empathize
with them. But it could just as easily be due to their sexuality getting the
better of their impulses, and there would be no way of knowing it. The same
also applies to touching themselves in public, particularly their genitalia or
erogenous zones, in an effort to stimulate themselves.
With everything else that we try to understand about dementia, it is also
important to realize these behaviors could be due to other more plausible
reasons. For instance, patients may want to act sexually because they mistake
someone for their spouse or partner. It could be a caregiver, someone in
public, or even their own child who may look like their spouse. Similarly,
they might believe that it is time for a bath and start removing their clothes,
or they may feel uncomfortable in a particular item of clothing. Sometimes
they may sit in a way that their clothes could run up and become itchy. Other
times, it may be due to the weather making them feel too hot. They may also
touch their genital areas due to itching or other medical problems such as a
urinary tract infection.
Unfortunately, such behavior does not recognize conventional boundaries.
Due to the degeneration of the brain because of dementia, the person does not
distinguish between what is appropriate and what isn’t. Caregivers may
initially be tempted to seek out an alternative caregiver, preferably one of the
same gender as the patient, but the patient’s state of mind and sexuality will
not consider that an obstacle. In some reported cases, caregivers have
reported incidents of their patients of the same gender where they received
sexually inappropriate offers (Carroll, 2017).
There are certain preventive measures that you can take if you experience
such behavior. For starters, get them clothing that isn’t easy to take off. See if
you can get them pants with buttons instead of zippers. This way, they won’t
be able to take them off or expose their genitalia inappropriately in public.
Also, review the different kinds of physical contact you make with your
patient and maintain an appropriate touch. Patting, hugging, holding hands,
and stroking hair should be done carefully and at a reasonable frequency so
as to not give off any mixed signals.
Don’t forget the nature of your patient’s condition and remain as patient as
possible. If you feel that they are deliberately performing a sexually
inappropriate act, let them know that their actions or gestures are not okay
and that they should stop. Be assertive but not aggressive, and don’t forget
the value of distracting and redirecting their attention to something else.
If nothing else seems to be working, consult with their physician to check for
any illness or side effects of medication that may be triggering such
heightened sexual behavior. They may also prescribe antidepressants that
could lower the patient’s libido; however, this should be the last resort and
only after careful consideration of any further side effects.
Agitation and Anxiety
People with dementia face agitation and anxiety in most normal and
extraordinary situations for various inherent reasons. While their age and
medical condition play a huge role, not to mention the effects of any
medication they are taking, a core reason is because patients find it difficult
to accept that they can no longer process new information, memories, and
stimuli in the same way as they used to.
This is why many common situations could heighten their anxiety and make
them wary of what they can expect. These situations include renovating a
living space, moving to a new house, meeting new people at a care facility or
nursing home, experiencing a change in their environment due to
hospitalization or traveling, removing clutter and organizing the house, and
even getting a new caretaker. People with dementia often mistake such
changes as threats.
When you notice such behavioral symptoms, the first course of action is to
get the patient properly checked. The diagnosis will help you and the
physician determine the best course of action and any changes that need to be
made to the patient’s environment to reduce their anxiety and agitation.
As reviewed in the chapter related to delusions, paranoia, and hallucinations,
the most obvious changes you can make to the environment are to reduce
surrounding triggers that could add extra stress to the patient. Look for any
signs of discomfort, including bright lights, shadows, glares, background
noise from electrical appliances and household installations such as
plumbing and air conditioning. If there are any triggers that you don’t have a
solution to, like noise from traffic or construction outside, consider moving
the patient’s usual sitting and resting areas to quieter places or rooms. Just
make sure that you ease them into it as they may not respond with immediate
enthusiasm to a sudden change.
You should also consider getting a security object for your patient that they
can hold close to them whenever they feel agitated or anxious. This could be
a keepsake or memento that they have a fond attachment to or even something
new like a toy or fidget tool. There are several options to choose from,
including fidget spinners or silicone pop-its that come in different colors and
are fun to use over extended periods. Incorporate different rituals that can
help both of you reduce anxiety. It could be anything: laughter therapy,
listening to music, taking a stroll outside, and taking deep breaths. Moreover,
check their health to see if they are being bothered by a skin rash, infection,
exhaustion, hunger, thirst, abdominal issues, bladder problems, or other
health issues. In such cases, consult with a physician about what to do next.
And as an added side tip, try to curb their consumption of caffeine if they
consume a lot of it.
As for how to deal with situations where patients become overly anxious and
agitated, take a moment to let them have some space so that they can vent
about how they are feeling. Keep a positive and upright posture as well as a
reassuring tone. Use phrases such as, “I’m here,” “Let me know what you
need,” “I’m sorry you’re so upset,” “I can’t imagine what you’re going
through,” “I want to help you get through this,” and, “Everything will be
fine.” Listen to them carefully and pick out the points that are making them
most uncomfortable. Offer reassurance as well as options about what they
would like to do or what would make them feel better. Be sure not to raise
your voice or become agitated yourself, as they may pick up on it and
respond with even greater agitation.
Anger, Aggression, and Combativeness
When you consider all the above aggressive behaviors, be it the unchecked
use of profanity, the feeling of agitation and anxiety, or the resorting to
embarrassing sexually suggestive and inappropriate behavior, it’s a clear
sign that the patient’s dementia has progressed. Their mental state has
declined so much that when they are told or confronted about how they have
behaved, they react aggressively. They may not just be verbally aggressive,
but they may even act out physically as they start to take things personally and
prepare to take out their frustration on whoever is in front of them.
When it comes to being verbally aggressive, a patient might start using
profanity and swear words and quickly intensify to shouting and screaming.
This can be further heightened if the person in front of them, particularly one
who is a stranger and unaware of their condition, is exacerbating the situation
by engaging them in a shouting match. The anger will be apparent on the
patient’s face as they look red with veins standing out. It gets worse if the
patient starts making threats against the other party, and it can escalate right
there if either of them starts pushing or shoving. This is when it gets physical
and, depending on how strong a patient is, can start with slaps, punches, or
kicks. They can also throw nearby objects if they cannot hit others
themselves. They could also be nimble in their motions and even resort to
pinching, hair pulling, and scratching with their nails. It can get worse if they
get their hands on sharp objects such as knives, forks, box cutters, and potato
peelers, as well as heavier objects like tools.
These behaviors are just as likely to happen in the house as they are in public
or outdoors, which can distress the caregiver and the people nearby. But
remember, the other people will not be able to fully grasp just what the
patient is going through. Most people may have some knowledge or
awareness of dementia but lack the in-depth understanding of what is going
on the patient’s mind or why they are behaving that way, regardless of what
triggered it. Once the matter escalates to full-on aggression and
combativeness, the question of what external situation triggered it becomes
moot. The important thing to do now is to process their emotions and work to
de-escalate the situation.
The causes behind such aggressive behavior varies. More than likely, it has
to do with the prevailing hardships patients face during dementia. It could be
due to being unable to recall memories, having difficulty communicating, or
feeling disoriented. They could also be feeling discomfort or pain, as seen in
earlier parts of this chapter, due to a medical condition, tight clothing, or a
loud, noisy, and polluted atmosphere around them. Similarly, if the
environment around them is too dark or too bright, they can feel very
confused and disoriented, and they can lash out as part of their fight-or-flight
response.
It is also important to consider what a person’s behavior used to be like
before they were diagnosed with dementia. So far, we have assumed people
to have been mild-mannered, kind, caring, and respectful before dementia
afflicted them. However, they could have had more aggressive personalities
even before they were diagnosed. They may have been in the military and
seen active combat or participated in contact sports, i.e., football, wrestling,
martial arts, and the like, where aggression is the norm. Furthermore, people
may have some history with violence that isn’t openly discussed. The most
common example of this could be domestic violence against a spouse which
has either never been reported or simply been kept quiet. One might expect
that with dementia, their aggressive tendencies from the past should mellow.
In reality, this may not be the case. If anything, the onset of dementia could
make such behaviors worse.
A similar case can also be made for people who have remained quiet and
docile most of their lives. From school to the workplace, people are
reminded to remain agreeable and not to be assertive or confrontational
about the things that bother them. It could be a disagreement with a manager,
a boss, a teacher, or spouse about work, school, and domestic concerns. This
leads to a lot of pent-up aggression that has no outlet and, by the time
dementia arrives, remains inside. Sooner or later, the person will no longer
be able to hold back that buildup of aggression because of the symptoms of
dementia, and it can flow out in unpredictable quantities. Oftentimes, people
believed that if they kept their head down and didn’t make too much of a fuss,
they would end up unscathed and have a better quality of life. So, when they
find that, in the end, they are diagnosed with dementia, there could be a
feeling of bitterness even if they don’t understand it.
In such situations, remember that it doesn’t help if you respond to them in the
same way. Instead, remain calm and see what exactly is it that has gotten their
temper flared. It could be due to an uncomfortable environment, a physical
discomfort, or a personal annoyance. In such a scenario, focus on remedying
the situation. Remind them that you are there to help and fix whatever it is
that is bothering them. If the room is too bright, turn the lights down. If the
surroundings are too noisy, take them somewhere quiet. If they feel like they
can’t breathe indoors, take them outdoors. If another person’s behavior is
annoying them, tell them that you will take care of it and then take them away,
while also telling the other person calmly about your patient’s conditions and
needs.
It is also possible that they may feel lonely or bored due to being cooped up
in the house with little to no human contact. This is likely because their past
life may have been highly sociable and they had a great deal of social
interaction, whether at work or with friends. Once they are taken out of that
social hustle and bustle, they will feel like fish out of water and start
withering. This becomes obvious from their loss of confidence or social
skills, which can anger them greatly as they feel they are wasting away
inside. The same could also be due to having little to no mental stimulation.
Playing games or watching new TV programs about topics which they might
be fascinated by like science and culture can provide ample mental
stimulation and pique their curiosity about wanting to learn something new.
Do your best to fill in that void they feel by engaging them in new activities.
The next time the two of you go shopping, pick up some new board games or
card games. Bookstores also have collections of different picture books
geared toward seniors with or without dementia that can also stimulate their
curiosity and make them feel excited about something new. Look for
opportunities to take them to be part of social groups for dementia patients
where they might interact and feel like they aren’t alone. Most of this
stimulation can help to put their aggressive impulses at bay. However, you
should also keep professional psychiatric treatment as an option in case
things don’t change.
With the level of disinhibited behavior discussed in this chapter, one hopes
that it is the end of it. But the unpredictability of dementia doesn’t stop there.
The next chapter will review how anger, aggression, and confrontation can
trigger some of the darkest, and possibly unknown or deeply buried
personality traits that can shock and horrify people in the immediate area as
well as the patient’s loved ones.
Chapter 7: Hurtful Behaviors
Being a caregiver is a hard job. More often than not, it is also a lonely job.
You fret about the person you are caring for and look after their well-being
while also trying to maintain your own physical and mental health. But what
can really get to you is the solitude that you believe is part and parcel of the
life of a caregiver. When you become an island like that and have only the
patient to interact with, you find that you don’t have a support system that
actively motivates you to do your best and carry on. The benefits of having a
great support system will be reviewed in the following pages, but it is also
important to understand what happens when you limit yourself to interacting
with only your patient and no one else.
For one thing, you can never be sure what your patient is going to say to you,
if they speak at all. They may appear indifferent or distant, and, as we have
reviewed before, view you with suspicion, fear, and anger. In some moments
of lucidity that they do respond to you, it may be at the most inopportune
times when they are feeling frustrated to the point of aggravation. This is
when they can lash out with profanity and other hurtful responses such as
insults and general disdain for you and your efforts. The negativity permeates
your relationship, and there is no antidote to it. Even if you manage to
redirect their focus from the hurtful comments, they will remain with you for
a long time as they target the very role you are fulfilling: being a great
caregiver.
In the absence of genuine appreciation while you face criticism after
criticism, it is natural to foster a negative and cynical attitude. This negativity
has several short-term and long-term effects on your personality and your
health. It makes your attitude and behavior toward your patient indifferent
and impatient, and it makes you feel like it is nothing more than an obligation.
You start feeling bitter at not just every hurtful comment they make but also at
the lack of any comments at all, making you wonder if doing what you are
doing is even worth it. In the long-term, this cynicism can also have health
effects like heart disease or even the possibility of developing dementia
yourself. One study published in the 2014 edition of Neurology by the
American Academy of Neurology (AAN) determined that cynics, due to their
lack of trust in others and belief that everyone is motivated by selfish
interests, are more likely to develop dementia (Neuvonen et al., 2014).
Ultimately, having a negative outlook does no one any good and can
negatively impact health. The level of cynicism may also make people wary
about following doctor’s advice about looking after themselves, and they
instead brush off such concerns. They may even throw caution to the wind
and take up self-destructive habits, the easiest and most obvious being
smoking, consuming alcohol, eating unhealthy food, being physically
inactive, and expressing negative opinions in public. For dementia
caregivers, such behavior can result in a poor work ethic and a lack of
responsibility toward their patient, for which they may blame the patients
themselves.
This is why it’s important not to fall into the trap of negativity that can derail
all your efforts at being an awesome caregiver. Let’s take a closer look at
some points that will help you understand what kind of behaviors foster
cynicism and how best to avoid or minimize them.
Racial and Gender-Based Discrimination
The world is a lot different than it was 20-30 years ago. It is certainly a lot
different from the times during which most dementia patients spent their
childhoods and adult lives. Having grown up in the 1930s through the 1950s
and spent much of their active adult lives from the 1960s to the early 2000s,
the social fabric of society looked a lot different with racial, ethnic, and
gender-based diversity not completely visible in most urban populations, not
to mention what it must have been like in rural or small-town communities.
Political correctness is now a focal point of most compassionate and modern
societies, which is why it is being taught to children at an early age. But what
about a generation that doesn’t even know what the term “political
correctness” even means?
Living in close-knit communities that were likely settled by people from a
particular background, a lot of people with dementia may have gone all their
lives without interacting with anyone from diverse backgrounds. It is also
very possible that their communities, towns, and states may be known for
prejudice and intolerance toward people from diverse backgrounds.
Similarly, their attitudes toward gender equality, feminism, and sexual
orientation may not have changed from what they learned growing up. In the
case of dementia, these people would no longer have the necessary filters to
keep these inherent prejudices in check, and they may not hesitate to say
something whenever they see something or someone that offends them.
This becomes particularly obvious when they have a caregiver who is from a
racially diverse background, of a different orientation, or a woman taking
care of a man. Some patients may use quips that veer toward offense, but it is
also likely that they could use disrespectful language against people of
diversity. It could be a hurtful or condescending comment about a person’s
race or ethnic background that could escalate to a racial slur, a chauvinistic
opinion toward a female caregiver, a criticism of someone's attire, jewelry,
piercings, tattoos, and much more. Most caregivers may be willing to sweep
it under the rug considering that it is coming from a dementia patient who
cannot control their inhibitions, but such comments on a continuous basis
over time can make caregivers of diverse backgrounds worry for their mental
health, if not their safety. Add to that the threat of sexually inappropriate
behavior toward female caregivers simply because the patients grew up in a
time or society when they did not realize how such actions against women
could be constituted as assault.
Such discriminatory behavior suggests two things. One, the person with
dementia has inherent prejudices that they were actively vocal about in their
youth and middle ages, largely because of the influence of society during
their upbringing. Two, they may have had prejudices but kept it to themselves
by internalizing any hateful remarks or chauvinistic and sexually
inappropriate comments against women in particular. Either way, they are no
longer able to control these discriminatory or inappropriate remarks due to
the devastating effects dementia has on their brains.
This is where you, the caregiver, have to tread carefully. It’s alright if you are
willing to overlook such hurtful comments at the first or second instance, but
they can be very hurtful if they carry on regularly. This applies to whether
you are a caregiver from a racially diverse background or if you notice that
the patient expresses such comments to other people of different races and
ethnicities. In order to stop them before they really get going, keep your ears
peeled for any particular points they make about a person’s accent, skin
color, hairstyles, clothing, weight, level of attractiveness, and more. It could
be an offhand comment such as, “I’ve never seen many of your kind around
here,” or, “You look like you aren’t from around here.” They may ask
questions like the following: “Where did you really come from?” “What
language do they speak in your country?” “What kind of clothes are these?”
“Are you supposed to be doing this kind of work?” “Are you sure you can
handle this?”
The above comments are just the tip of the iceberg. They can go from rude to
inappropriate to offensive pretty fast especially if the patients don’t see any
resistance. Your first reaction may be to rebuke them for such comments, but
it may not be as effective as you think. It could even make things worse if
they take offense to it. In the same vein, trying to tell them about being
respectful and politically correct might smooth things over short-term, but
they are unlikely to retain the information depending on how the dementia is
affecting them. Trying to redirect the conversation to a different topic or
distracting them should be your go-to strategy to make sure it doesn’t escalate
or happen again.
Additionally, acknowledge their comment but give it a positive twist. For
instance, turn a racially insensitive remark from a patient such as, “There are
a lot of these people around here,” to, “Yes, it’s amazing how you get to see
so many people from all walks of life coming together.” This way, their
remark finds a kind of closure which should put an end to the conversation. If
the patient feels you are changing the subject or redirecting, the thought may
linger in their head for some time and prompt them to expand upon it some
more to the point of obsession. Acknowledging their remark or thought does
not mean you agree with their point of view, but it does help you end the
conversation there before redirecting it to a different topic.
Furthermore, if their comments were directed at someone else of a diverse
background or gender, apologize to that person and let them know about the
patient’s condition and how they are not in complete control of their
behavior. More than likely, they will empathize with the person’s condition,
even though the remark was hurtful. Most people’s attitude toward the elderly
is primarily restrained and compassionate, which could work to your
advantage. Nevertheless, it isn’t something that can be easily forgotten by
everyone involved.
Mean or Cruel Comments
As if insults weren’t bad enough, people with dementia may also resort to
using mean, cruel, hurtful, and spiteful words that only frustrate you more.
Oftentimes, the things they refer to may not be true, but that doesn’t lessen the
cruelty of those comments. While you rationalize that they are only saying
these things because they can’t help themselves, they don’t realize how
hurtful their comments are, or they have such damage to their brain, you feel
devastated, disheartened, and dejected. You feel as if your value to your
patient is only as a metaphorical punching bag they unload on whenever
something upsets them.
With mean and cruel comments, the focus of their offense is on you, even
though it may not be about you. Because they might be suffering from
impostor syndrome, hallucinations, or delusions, the chances are high that
they believe you are someone else entirely. On the other hand, the comments
could indeed be about you, though they may have gotten their wires crossed
and believe they need to respond with the opposite. For instance, if they
actually mean to be appreciative, their behavioral changes could make them
say mean and hurtful comments, nitpicking on different issues and putting you
on the defensive. Even the way they say it, perhaps sarcastically or angrily,
will be in sync with the content of the comments, making you feel belittled
and upset.
It goes without saying that you cannot take these comments personally, no
matter how cruel or spiteful they might be. Regardless of what they say and
how they say it, i.e., by yelling or sneering at you, you have to remember that
they don’t mean what they say and instead are doing so due to the impact of
dementia on their brains. Nevertheless, just because they don’t mean it or it
isn’t true doesn’t mean it won’t hurt. As a caregiver, hearing that your efforts
are not appreciated or are ridiculed by the one person whose opinion and
validation should matter is going to leave you open to negativity and
cynicism.
Rather than giving in to the negativity, it is important that you not let the mean
and cruel comments get to you. Again, this will require you to stay calm and
de-escalate the situation. The calmer you are, the more likely the patient will
calm down as well. If the comment was particularly cruel, don’t react. Take
a few deep breaths or count to 10 to maintain your composure while also
reminding yourself that they are only saying this because of their dementia
and don’t have control. Read the room and minimize the distractions by
turning off the TV or music. If people are visiting, ask them to move to a
different room or leave.
The patient’s comments could also be because they are frightened of
something, most likely a hallucination. This is where you need to sound
reassuring and protective. Let them know you are there to keep them safe and
that they have nothing to fear. Keep your voice calm and soothing and use
slow, short sentences to reassure them. Tell them you will see what is wrong,
and in the meantime, convince them to come out of the room with you. Offer a
comforting shoulder rub or massage to help calm them down or play some
soft music that they enjoy. This will give you some time to evaluate whether
there is anything in the room that is causing them discomfort or scaring them.
The former could be due to any kind of pain or from wearing clothes too tight
as well as any overstimulation from exercise, while the latter could be due to
the surroundings and people nearby.
It’s also possible that they become agitated due to a tough challenge. Playing
games, working puzzles, and doing other similar activities can make them
feel like they aren’t good enough, especially if they are losing or finding it
difficult. Organizing the closet or drawers and other chores might be simple
on the face of it, but for dementia patients, it can get complicated and
overwhelming quickly. Before you know it, they may get mean about how
easy it is for you or someone else to do it while they can’t due to their
present state. This is when you should avoid being patronizing and instead try
to distract them from the problem. Don’t solve the problem for them and
instead work on something else. Let them have a moment, and then try to get
them working on the first issue again. Also, focus more on their emotions
instead of their words or actions. This will give you an idea about what is
going on inside and not take too much stock into what they say or do.
If the behavior is recurring, make a note of what possibly triggers it. Keep a
journal or notepad to jot down all the observations you make about any time
they make cruel comments. Include the time it happened, the task they were
doing just before it happened, the words used, the emotions displayed, and so
on. This way, you will have a sort of reference book for what kind of
behaviors they exhibit and what kind of language or words they resort to.
Reading it again later can also help you reflect on any better course of action
if it happens again. For instance, if you notice a recurring pattern in the
afternoon when they start using hurtful words for something, look at the tasks
you normally do at the time and see what could be triggering it. It could be
because they haven’t had lunch, or they need to play a game at the time, and
they are upset that you haven’t gotten to it yet.
Take care of yourself on a regular basis. When it all feels like it is too much,
deep breaths are going to be your friend. The more you take care of yourself,
the better you will feel mentally and physically to take care of your patient
with dementia. Meditation, walking outdoors, connecting with nature, and
being fully aware and present of your surroundings and identity rather than
being reactive, can improve your outlook a great deal.
Chapter 8: Finding Comfort and Support
Music Therapy
Listening to music has a significant impact on a person’s mood and can alter
it to varying degrees. When people drive to work, they listen to upbeat,
motivational music in the car that helps them remain optimistic. People listen
to anthem-like rock ballads during their workouts or exercise routines that
make them feel pumped up and ready to take on the world. Children find
music to be both uplifting, relaxing, and educational. Even sad and dark
music can help someone feeling lonely and angry let out their emotions.
For centuries, music has been an uplifting and therapeutic device that has
entertained and soothed people in power, such as kings, emperors, and
ministers. Even in battles, the use of music as a rallying cry to unify and
motivate soldiers is a practice that continues to this day. The field of music
therapy has been around since 1945 when it was used by the US military in
Army hospitals. This kind of therapy helped service members a great deal
through occupational therapy as well as recreation, education, and
reconditioning. Major universities in the US offer music therapy as a
program as it helps students understand its benefits on a person’s spiritual,
emotional, psychological, mental, social, and cognitive health, all of which
have a direct effect on their physical well-being. Music therapy has shown
fascinating results in people with various health conditions, particularly high
blood pressure, muscle tension, depression, memory problems, lack of
communication and social skills, and sleep issues. Music therapy continues
to be used to help military veterans cope with trauma.
As music therapy aids people with conditions like autism, mental health
disorders, and chronic pain, it can provide a great deal of relief for people
with Alzheimer’s and other forms of dementia. With music therapy, patients
can correlate different kinds of music with their own experiences and
memories, providing them with feelings of familiarity, predictability, and
security. Certain kinds of music may also trigger happy memories or feelings
and help them feel much better about themselves. Moreover, multiple studies
including those done by the University of Miami and University College
London suggest that music can be therapeutic for people with dementia. One
study suggests that music therapy created an upsurge of melatonin, prolactin,
and serotonin, aka the brain’s “feel-good” chemicals, which can contribute to
an improved mood in a person with dementia and also improve some
cognitive function (NPR, 2019).
Most importantly, music therapy can help people with dementia recall old
memories that they have difficulty doing otherwise. An old childhood song
like a nursery rhyme or a TV jingle could remind them of the time they were
kids and used to listen to the song, as well as the memories associated with
it. Listening to a TV theme tune could evoke memories of TV shows they
used to watch either at their homes or at a friend’s house, which can then
trigger another memory of how much fun they had with their friends.
Similarly, listening to old romantic songs could remind them of how they met
their partner or spouse and the kind of emotions it evoked back then. They
may even remember dancing to the tune and either voluntarily or
involuntarily want to break into dance again, which is a sign of enthusiasm
that is always welcome in someone who usually remains quiet and
depressed. Listening to such songs can help them connect with other people
who find their joy for the song or piece of music to be delightful. Even if they
are not fully physically capable of dancing, they can show their enthusiasm
by tapping their fingers, clapping their hands, tapping their feet, waving their
hands, and swaying their heads, all synchronized to the beat of the music or
song.
You can use different kinds of music to create different environs for your
patient. For instance, you can play a soft and relaxing piece of classical
music when they are having meals, taking a bath, or getting ready to sleep. On
the other hand, a fast and upbeat song can help them become more physically
active. If you see them feeling down and quiet, play a gentle, relaxing song to
lift up their spirits and feel a change in their mood. Some songs or pieces of
music can also help them express their thoughts, ideas, and feelings, and it
can also reduce loneliness.
When using music therapy, always go for the kind of music that the person
with dementia prefers. If they have a collection of audio tapes or old records,
they should clue you in about their tastes, or you could ask about their
musical tastes from their family. Most internet services such as Spotify have
custom lists that show popular music from the time when the patient was
young. If possible, get a premium subscription so you don’t have to hear ads
in the middle and break the flow of the music. Not only will the patient find it
irritating, but the loud and vivid ads could make them react as if something
has gone wrong. A custom music streaming app known as Sing-Fit is tailormade for elderly people with dementia and features various songs that they
can enjoy. It also provides information to caregivers about body movements
the patient can do along with the song as mentioned above, which makes it an
enjoyable experience for both the patient and the caregiver.
Also, pay attention to how the patient is responding to the music, especially
if they look uncomfortable. If it looks like they are getting into the groove,
join in and start tapping your fingers or humming to the beat. If, on the other
hand, you notice their discomfort increasing, turn the music off and ask them
if they are alright. Don’t play the same song the next time and wait awhile
before trying another one. Keep in mind that some music can also trigger
negative or unpleasant emotions and memories.
While most songs are available online on a streaming service app, patients
may be familiar with a specific method of how they listen to music, like with
an audio tape or a record player. They may also feel an attachment to those
tapes and records which could evoke certain memories with the song. This
means dusting off the old record player or stereo and playing those songs,
preferably in front of them so that they can see you are getting it right. Start
with some slow, quiet, soothing music at a moderate volume. Avoid going for
a loud, upbeat jazz number right off the bat, or they may jump right out of
their seat in panic.
Music and Talking About Dementia
Music can also help you, the caregiver, to maintain your own emotions and
feel relaxed when things get tough. Let’s not forget that looking after yourself
is essential, not just for your patient’s well-being but also your own. Over the
years, many famous musicians and bands have contributed by writing songs
that raise awareness about dementia and its many forms, and some are even
based on their own experiences of having a loved one who has struggled
with and succumbed to the ailment. The country genre has some thoughtprovoking songs that talk about dementia, such as the moving 2014 song by
celebrated country artist Glen Campbell titled “I’m Not Gonna Miss You.”
Campbell was diagnosed with Alzheimer’s in 2011, which was confirmed to
be in its late stages in 2016. He produced this song in 2014 to express how
the condition had affected him with lyrics that touched upon the feelings of
how he was coping with the symptoms of Alzheimer’s. Campbell passed
away in 2017 at the age of 71.
Even more thought-provoking is the 2003 song by Reba McEntire titled
“Moving Oleta.” A slow number that shifts gears toward the end, “Moving
Oleta” recounts the life of an older woman as seen from the eyes of her
partner. The woman, now infirm and weak, no longer remembers who the
man is, whereas the man cannot forget. The song was written by Barry Dean
after watching his grandfather move his wife (Dean’s grandmother) to a
nursing home after her Alzheimer’s diagnosis and take care of her till the
end.
Kenny Chesney’s 2012 song, “While He Still Knows Who I Am,” is a
heartwarming and energetic song about a son who wants his father, a man
diagnosed with Alzheimer’s, to remember him while he still can.
Carrie Underwood’s 2012 song titled “Forever Changed” charts the life of a
young woman who passes through all stages of life, from growing up to
getting married, having children, getting old, and being diagnosed with
Alzheimer’s toward the end of her life. Written by Hillary Lindsey, James
Slater, and Tom Douglas, Underwood said that it was based on the mother of
one of the writers who was diagnosed with Alzheimer’s, reminding her of
her own grandmother’s death. An important message this song sends out is
that no matter what the changes in life are, a person’s life cannot be defined
by any of these changes.
While country music seems like the go-to genre to talk about something as
difficult as Alzheimer’s, other genres such as rock, hip-hop, and pop also
have contributions by artists who understand the devastating effects of
dementia on the lives of their loved ones. An upbeat song is the 1989 rock
number “Veronica,” by Elvis Costello, that recounts the time he spent with
his grandmother who was later diagnosed with Alzheimer’s. He particularly
mentions in a VH1 interview how she had some “terrifying moments of
lucidity,” which were the source of his inspiration to write the song
(Costello, 2015).
Marc Anthony Thompson, aka Chocolate Genius, recounts the experience of
returning to his childhood home in the 1998 song “My Mom” and how, though
the house itself oozes with memories, following her dementia diagnosis, his
mother no longer remembers his name. It recounts the hurt felt when someone
as close as a parent is no longer able to remember their own children.
Brian Asselin captures similar emotions in the 2010 pop song “I Will
Remind You” of a child now grown-up going through photographs of a loved
one who has been diagnosed with dementia and of the bond they both share
that will help them see through the hardships. Asselin has also committed
half of the proceeds of this song to the Alzheimer’s Society of Canada to
further their research efforts.
Ed Sheeran’s “Afire Love” from 2014 captures the singer’s pain of losing his
grandfather to Alzheimer’s.
A tragic yet inspiring song in the guise of a pop-rock number is Fastball’s
1998 “The Way,” which is based on the true story of Lela and Raymond
Howard. Hailing from Texas, the Howards were an elderly couple who took
a road trip to a nearby festival but never made it due to an accident. It
emerged that Lela was fighting Alzheimer’s while Raymond had had recent
brain surgery and was recovering. The trip becomes a metaphor for the
couple to leave the world behind and transition into an afterlife together.
While it is hard to say exactly what effect the above songs have, if any, on the
patients, they do offer some comfort to the people close to them, especially
you, the caregiver. These songs help us understand the kind of lives these
people led before and how much love they had for their families. If you are a
caregiver who is also a direct relation to a person with dementia, the songs
can bring forward a wave of memories, emotions, nostalgia, and a sense of
happiness over a life well-lived. This is a far more optimistic and endearing
state to be in than one where you feel regret over the person’s current
physical and mental condition. Through these songs, we can travel back in
time to the memorable moments we shared with them and realize they haven’t
really changed at all.
Laughter Therapy
Laughter is the best medicine in more ways than one. Not only does it
physically make a person feel better, as breathing in during laughter means
taking in more oxygen that is good for your heart, lungs, and other muscles,
but it also helps you reduce stress and forget about anything that is bothering
you by releasing endorphins from the brain to improve your well-being.
There are many avenues through which one can engage in laughter. Websites
dedicated to jokes, one-liners, limericks, and gags are frequented all the time
by casual visitors and regulars alike who want a moment to break through the
monotony of their life and enjoy a good laugh. Comedy clubs host several
veteran and budding comedians who want nothing more than to make people
laugh and be happy. Sitcoms, late night talk shows, comedy specials, and
more, air nonstop on different channels and poke fun at society in general,
and typical households in particular. Aside from comedy channels, streaming
networks such as Netflix have a treasure trove of comedy programs available
for all ages and preferences.
There are even laughter therapy programs that help people rediscover the joy
of laughter in a safe and relaxed environment, far from the rigors of their
daily lives and routines. Through these programs and by engaging with other
like-minded people looking for a laugh, you can find what you have been
missing due to the demands of your role as a caregiver. It helps people with
their confidence, creativity, and enthusiasm, while also pushing away their
sense of self-doubt and criticism brought about by being under pressure due
to professional commitments. Instead of going home, watching a sitcom, and
laughing by yourself, you can be with a group of people and truly reset
through a sense of community and togetherness.
Since being a caregiver is an exhausting responsibility which requires you to
make the most of your time, getting a couple of good quick laughs a day are
important to keep the doctor away and delve yourself into more positive and
upbeat feelings. When you wake up every morning and get ready, look at
yourself in the mirror and laugh as a self-affirming act. Even a smile can lift
your mood. You can laugh while you are making breakfast or on the way to
the supermarket. Subscribe to some YouTube channels that provide short
clips of comedy shows and programs if you can’t find the time to watch full
episodes or specials. In the UK, comedy shows on the radio have a universal
following. You can listen to these shows with the BBC Sounds app and enjoy
some culture from across the pond.
Furthermore, laughter is also an essential ingredient in stimulating the minds
of people with dementia. Watching comedy shows and video clips with
dementia patients is a fun activity you can do together to elevate your mood
and attitude. Laughter can also help your physical health by thoroughly
oxygenating the different parts of your body, especially the brain. This is very
important for people with dementia as such activities will keep their minds
fresh and cheerful. Laughter also works wonders to reduce a patient’s levels
of anxiety, confusion, depression, and frustration. Caregivers can also use
laughter to redirect a conversation or a scenario from an unpleasant to a
pleasant one.
Classic comedy shows have cleaner humor compared to the more brash,
profanity-and sex-gag-filled modern comedy shows. If you look back at
black-and-white comedy shows from the 1950s and later, such as I Love
Lucy, Dennis the Menace, The Addams Family, The Munsters, M*A*S*H,
Bewitched, I Dream of Jeannie, The Brady Bunch, Lassie, and so on, you
will find they are filled with clean-cut jokes as well as an old-fashioned
charm that people with dementia find relatable. Even shows from the 1970s,
1980s, and 1990s, including The Golden Girls, Diff ’rent Strokes, Cheers,
Who’s The Boss, Taxi, Alf, Small Wonder, Three’s Company, Friends,
Seinfeld, Frasier, and many more, though filled with romance and sexual
innuendo, provide tons of laughter for both you and the patient.
Remember, people that laugh together stay together, and this laughter helps
improve the bond between patient and caregiver. It breaks down barriers,
overcomes hardships, eliminates conflict, and reminds you that you are both
in this life together. Why not make it a fun one?
Conclusion
The pages in this book may have concluded, but the journey you are on is a
long and arduous one. Though the behaviors discussed in this book and the
intensity of the dementia vary from person to person, you can only be
prepared to a certain extent for what is to come. You might be wondering
how overwhelming and demoralizing this all must be, and you may even
consider giving up and looking for alternative care options for your loved
one. Or, if you are embarking on the journey of a caregiver for another
family, you may feel like you have taken upon more than you bargained for.
Don’t fear! You aren’t alone. All those statistics and numbers we looked at in
the introduction weren’t meant to dazzle you with figures. The truth is that
taking care of a person with dementia is not a one-person job, certainly not in
the very beginning. Caregivers often reach out to established networks of
other caregivers in the different stages of a person’s dementia, depending on
what challenges they are facing. And so can you, because there is nothing
embarrassing about seeking out help.
Your first lifeline can come in the form of family members and friends of the
patient or people from your own support group who may be ready to lend a
hand. Dividing certain responsibilities among each other or getting someone
to fill in for you if you have something unavoidable to take care of shouldn’t
be too difficult. Think of all the things, big or small, that you could ask others
to help you with, such as taking the patient out for a walk a few days in the
week or helping them with their meals. You could also ask them to pick up
the groceries, do laundry, help clean up the house, fix a leaky faucet, or take
care of other errands and chores. The possibilities are endless.
Reaching out to other members of the family also helps you keep in touch
with everyone and let them know how you and your patient are doing. All of
you are in the battle together and should be able to count on one another for
advice, assistance, and emotional support. Relatives can offer you
suggestions for any problems you are facing, and even if they don’t offer you
great ideas, they can at least listen to what you are going through and offer
some comfort. They may not have a firsthand idea of what the person with
dementia is going through, but you do. Sharing will not only help them find
out more about the debilitating effects dementia has, but it will also let them
know what it is putting you through. Through you, relatives can empathize
with the pain and suffering both you and the patient are facing in this uphill
battle.
At the same time, don’t shy away from staying in touch with your own
friends. Maintaining your own emotional well-being is essential if you plan
on being in the right frame of mind to take care of your patient. Take some
time out to have a break, meet up with friends for coffee or lunch, and just
talk about what you would like to talk about, even if it isn’t about your
patient. After all, your life doesn’t begin and end with your patient, even if it
feels like it sometimes. You are your own person with your own identity and
being a caregiver doesn’t change that.
You also need to look after your health. That’s right! You need to look after
your own health. While taking care of a dementia patient is going to have
you on your toes most of the time, you should also try to break out of your
regular chores and become more physically active to focus on yourself. If
you notice that your patient has certain times in the morning when they sleep,
take the opportunity to go out for a walk or a run. Take stock of what you eat
and drink and make sure you follow a balanced, nutritional diet for yourself.
Stay hydrated and get plenty of sleep. If you find that getting a good night’s
sleep is difficult, especially with patients who have trouble sleeping as well,
consider speaking with a physician about it. Moreover, don’t forget to get
yourself screened and vaccinated regularly. Taking care of the elderly is a
highly taxing job that can lead to stress, depression, and burnout.
Then comes the second line of help in the form of support groups for
caregivers. Start by seeking out your local chapter of the Alzheimer’s
Association, a non-profit association that is dedicated to providing
caregivers and families with care and support and continuing to make further
advancement in the treatment of dementia through scientific research. From
there, you can also seek out local support groups where you can connect with
other caregivers, share stories, seek comfort, and find validation and
strength. Most caregivers form a unique bond when they meet and share about
what they are going through, and they provide as much assistance as they can.
In the same vein, local community programs to make things easier for patients
and caregivers, such as meal services, housekeeping, and transportation, can
prove to be just the thing you need.
It is hoped that through understanding the life both you and your patient are
looking at, you can not only prepare for it but also take it head on. Stay
blessed, now and forever.
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