How
to
Communicate
with
Alzheimer's
A
practical guide and
workbook for families
How to connect with
loved ones
who have Alzheimer's, dementia,
confusion and memory
loss
By
Susan Kohler
MS, CCC-SLP
Granny's Rocker Publishing, Smashwords Edition
©2004 Susan Kohler
About this eBook edition:
This
eBook edition of "How to Communicate with Alzheimer's - a
practical guide and workbook for families" contains the same
excellent techniques, valuable information and charming black and
white photography of the original published print version. However,
the contents of "How to Communicate with Alzheimer's" are
designed to take you through a learning process, with time to absorb,
make notes and render practical application of the techniques and
activities. Should you desire more of a workbook experience, or need
an instant reference you can use or give to another person, we
recommend the original spiral-bound edition available at
grpublishing.com.
Copyright ©2004 by Susan
Kohler. All Rights Reserved.
No part of this book may be
reproduced, stored in a retrieval system, or transmitted by any
means, electronic, mechanical, photocopying, recording, or otherwise,
without written permission from the publisher.
e-mail:
clearance@grpublishing.com
Susan Kohler is
available to speak to your group or organization.
e-mail:
susankohler@grpublishing.com or contact:
Granny's Rocker
Publishing P.O. Box 1721 Venice, CA 90294
310-285-8110
http://www.grpublishing.com
First Print Edition: March
2004
First eBook Edition: June 2007
First Kindle Edition:
December 2009
First Smashwords Edition: March 2010
ISBN
0-9753165-0-8
Library of Congress Control Number:
2004104374
CREDITS:
Lori
Lackey, Photographer
— Since 1987 when her work first appeared in When
I Am an Old Woman I Shall Wear Purple,
Lori Burkhalter-Lackey has faithfully chronicled the theme of aging
in America. Her widely recognized photographic style has appeared in
nearly a dozen books and magazines such as Camera & Darkroom, as
well as exhibitions in galleries across every region of the United
States. A native of Los Angeles, where she attended Otis/Parsons Art
Institute, Lori continues to make her home in California with her
husband, David and their two children, Annie and Jackson.
Amanda
Jane Kohler, Graphic
Artist, studies graphic design at Burlington County College in New
Jersey, along with her passion for science, biology and music. Amanda
displays talents in many artistic venues and often assists her
mother, free-lance artist Pamela Kohler in local and national
exhibitions and shows.
Art direction, layout, design and
eBook conversion by Randy Tobin at
Theta Data Design
www.thetadata.com
Additional
Photography by A. Arvisu
Dedicated to my father,
a model of integrity and
grace.
You've always given me —
love in abundance
Table of Contents
Chapter
1:
What's So Important About Communication?
Chapter
2:
The Deterioration of Communication Skills in the
Progression
of Alzheimer's and Dementia
Chapter
3:
Communication Strengths of Persons with Alzheimer's
and
Dementia
Chapter
5:
Activities to Do with Persons Who Have
Alzheimer's and
Dementia
Chapter
6:
Troubleshooting Difficult Behavior
Chapter
7:
Understanding Your Role
Chapter
8:
Where to Go for Help
Appendix:
What
Will We Talk About? What Can We Do Together?
Keep
a Sample Biography
Holidays
and Celebrations
Topics
for Conversation
Jokes
and Riddles
Song
Lyrics
Things
to Do at Home
Dietary
Considerations
Bibliography
A
Prayer
About
the Author
Foreword
Alzheimer's Disease has, in the past decade,
become one of the most feared of diseases. It attacks not only the
individual who is diagnosed, but in fact, the entire circle of family
and friends. It eats away at the entire fabric of family love.
When
the names and faces of those held dearest no longer bring a smile,
when the stories and anecdotes of days past no longer register; the
pain felt cannot be measured. Those connections which can still be
made through appropriate and meaningful communications become all the
more treasured.
Statistics tell us that by the middle of the
century, 2050, over 14 million Americans will have A.D. unless a cure
or a prevention is found. We are further told that today nearly 4
million Americans have A.D. and 37 million claim to know someone with
Alzheimer's. More than 7 out of 10 people with Alzheimer's live at
home and at least 75% of their care comes from their circle of family
and friends.
The physical burden of Alzheimer's care, though
large, is not as devastating as the emotional. The key element of
easing the burden of those who care day after day — night after
night, I believe, are the abilities to keep the lines of
communication open as long as possible and to learn how to vary
communication between carer and loved one.
During the time
that I cared for my mother her inability to understand her confusion
at not being able to communicate her needs, her fears, her feelings
were a constant source of frustration for me. How I wished for some
help! This book will help to fill a void in the literature of
Alzheimer's caregiving. At a time when the world seems too complex to
deal with, How to Communicate with Alzheimer's offers a
positive, simple, easy to read format to develop much needed skills
which will, I know, help to ease the burden of caring and provide
much needed support.
Judy Wunsch, Former Caregiver Director of
Volunteers Alzheimer's Association
Los Angeles, Riverside, San
Bernardino Counties
Acknowledgements
I should like to acknowledge a number of hard working individuals who have influenced my training and thinking which have shaped my beliefs and the information in this book. They are in no particular order, for they are all equally important in my life.
To my peers who are working with this population—individuals with Alzheimer's, dementia, confusion and memory loss—for their commitment in helping the families and individuals in a changing and challenging health care system.
To Gwen Uman, research director at Vital Research, who encouraged me to write this book.
To my family and friends who never tire of hearing about my stories, my ideas, and my work. Thank you for always supporting what I do.
To my readers, who gave so much of their time and
terrific feedback to give the book life and breath.
To my dear
friend Kathleen, I miss you. You inspired me to take my ideas and
make them fly.
To you the reader because, good for you, you are taking the first step to help yourself and someone you love who has dementia.
To those I have met and worked with, struggling with Alzheimer's, dementia, confusion and memory loss, you all touched my life. You have made me appreciate life and I thank you for it. Especially to this elderly generation, who fought for a free society, and now fight the battle to age with dignity. Let us help you with the compassion and respect you deserve.
Preface
This book is written for families and friends
coping with the challenges of caring for loved ones with Alzheimer's,
dementia, confusion and memory loss. Working with this population for
many years, I have felt a strong urge from inside to share the
knowledge and insight I have accumulated. I wrote this book in order
to reach out to more people, especially families and friends, and to
provide them with the tools they need for caregiving.
The
foundation of this care, I believe, is communication. Communication
is at the heart of every human interaction. We must connect
with each other. Communication is required to meet our survival,
social and emotional needs. The isolation and deterioration that
result from persons unable to connect with others is painful to
observe.
My work with those who have Alzheimer's, dementia,
confusion and memory loss has evolved over the years. My training as
a speech pathologist has placed me in the trenches, honing my skills
as a clinician. My training as an actress has given me permission to
be creative in my therapy, using music, trying all and everything. My
colleagues strongly encouraged me to write this book, having watched
me work with this population—talking with them, singing with them,
improvising with them— doing whatever to facilitate communication
and human connection. My hope is that this book, by offering
reasonable and practical suggestions for communicating, will inspire
others to reach out to this population.
Introduction
The Goals of this Book
This book has three simple goals:
Provide families and friends with a "how-to" approach to facilitate the communication between themselves and their loved ones.
Provide families and friends with a solid base of knowledge and where to go for help in caring for these individuals.
Increase public awareness that the communication difficulties of persons who have Alzheimer's, dementia, confusion and memory loss can be greatly improved with facilitating techniques.
The Focus on Communication Skills
The phrase—Alzheimer's, dementia, confusion and memory loss—is meant to cover a number of conditions that can impair communication. Most often, the terms Alzheimer's and dementia will be used, and more often just the term dementia will be noted. Alzheimer's is the most prevalent form of dementia and probably the term we are most used to hearing. Now, since this is not a medical textbook, the technical and clinical information about the different conditions will not be included. If you desire to know more, however, check the resources in the last section of this book as to where you can access information. It is clearly intended that this book focus primarily on the communication issues in this population. It is, however, only the beginning of what you may desire to learn about. I encourage you to find out all you can.
The Conditions that Can Impair Communication
As previously mentioned, the terms Alzheimer's, dementia, confusion and memory loss will be repeated often, sometimes just as Alzheimer's and/or dementia. Each time all or any part of this phrase is mentioned, it will serve to be inclusive of a number of conditions that can impair communication. These conditions can include but are not limited to:
Alzheimer's
Dementia
Stroke
Depression
Head Injury
Parkinson's
AIDS Dementia Complex
Chronic Illnesses (heart conditions, diabetes, respiratory problems, cancer)
Sensory Deprivation (decreased vision & hearing)
Drugs and Medications
Problems with Nutrition
Alcohol and other Substance Abuse Problems
Balance and Movement Problems
Keep in mind that the person you are dealing with may have one or a combination of these conditions that can affect the communication process. Alzheimer's is very prevalent, but so are the other conditions listed above. All of them have the potential to manifest a dementia, confusion or memory loss problem. All of them have the potential to impair communication.
A Few Final Notes
About this symbol —
Anytime you see this symbol to the right of a
heading, it tells you that the following excerpt is a personal
experience. In sharing some personal stories from my years as a
therapist, I hope to illustrate different points in the book that
you, the reader, can relate to.
This is a How-To Book
The
book is carefully laid out to help you absorb the information. The
print edition (available at grpublishing.com and amazon.com) has a
strong ring binding so that you can lay it open on a table and read
the information.
The print edition chapter heading pages are
also thicker and slightly wider to help you find the sections more
easily.
At the end of each chapter, you will find a Quick
Reference Guide that summarizes the key points of that chapter. The
Quick Reference Guide is also easy to find as it is the last page
before the next chapter heading divider page.
Chapter 1
What's So Important About
Communication?
The Smile
An elderly woman sat in a wheelchair, being fed by a tube inserted into her stomach. She could no longer sustain herself by oral nutrition. Her face was expressionless. Her only form of verbal expression was, for the most part, babbled syllables, repeated over and over until she became restless and agitated. It was as if her behavior was a cry to have someone, anyone pay attention to her.
I happened to be charting at the nurses' station where, on this day, her wheelchair was positioned. Just like any other day, the babbling began. During the course of my writing, without thinking, I happened to look up for a moment. In this moment her eyes met my eyes and the babbling abruptly stopped. So immediate was our connection that I suddenly said to her, "Good Morning!"
The woman instantly broke into a smile. A broad, most appropriate "healthy" smile and effortlessly replied, "Thank you."
What's So Important About
Communication?
Human beings must communicate, relate and connect.
We are born with this drive. You see it in a newborn baby who quickly
learns to smile in response to human interaction.
We must
communicate, in fact, we cannot, not communicate. Verbal and
non-verbal behaviors signal our intent and purpose in reaching out to
others for basic needs, comfort, desires and information.
For the person with Alzheimer's, dementia, confusion or memory loss, the natural process of communication no longer functions in the style, efficacy and speed in which it could before the effect of the disease manifested. Take away a person's ability to "connect" with other human beings, and isolation, declining health, depression and rapid loss of ability and quality of life will quickly follow. People who were once living as fully functioning, independent members of a community become dependent, helpless, burdening members of society.
Wouldn't it make sense then, that in helping such a person maintain their ability to communicate, relate and connect, you would help their overall daily efforts in living and keep them functioning at the highest level possible for their well-being and the community?
The Importance of Communication
Communication is essential to the following:
Meeting our individual needs for food and shelter
Fulfilling basic social and emotional needs
Meeting our need for self-actualization
Extending power and control over others
Providing information, praise and support
Persons with Alzheimer's and related dementias exhibit deteriorating communication skills. As the disease progresses they experience declining ability in communicating and cannot get their emotional, physical and medical needs met.
However, this does not mean that they are incapable of communicating, incapable of essential and quality interaction, incapable of expressing needs and wants.
For people with dementia it is important to understand that their communication can be...
facilitated.
The facilitation of communication comes from us. We can change the way we communicate with them on a daily basis. It is clear that people with dementia are definitely living longer and so we need to learn to communicate with them. They have a great deal to tell us and they can if we make the adjustments that will help them express their desires.
You Can't Take the Communication
Process for
Granted
Our society takes the communication process for
granted. We can rush through our day, call out to one another across
rooms, walk past co-workers without even looking at them, bark out
six different orders, and they get it. The person with dementia,
however, can no longer respond to this style or at this pace of
verbal communication.
Even health care professionals ignore
the importance of communication in this population. They do not
understand that developing communicating skills with these
individuals should be first and most important in their care. Without
communication, you will not understand them, get them to dress, eat,
or get to doctors' appointments on time. In my experience as a speech
therapist, doctors have expressed to me that "nothing can be
done for these individuals," as if Alzheimer's and dementia are
a "death sentence." Likewise, nurses rarely get training in
communication techniques for patients who have specific communication
problems associated with dementia.
One of my biggest goals in
writing this book is to create a greater public awareness of the
importance of communication in caring for this population. It is so
critical to providing safe quality care. Yet it is usually neglected.
The result is caregiver (family and professional) stress and
frustration.
It doesn't have to be this way!
The Burden of the 36-Hour Day
Nancy L. Mace and Peter V. Rabins have written a
terrific book called The 36-Hour Day. It is a book devoted to
helping people understand how to care for persons with Alzheimer's,
dementia, confusion and memory loss. It is an excellent book and I
highly recommend it.
Think of the phrase "36-hour day."
Caring for someone with dementia can feel endless, draining, and
completely exacerbating. During this long seemingly 36-hour day, the
stress to the caregiver is often overwhelming.
It is
well-documented that caregivers report "communication
difficulties" contributed significantly to the stress and burden
of caregiving (Rau, 1995).
Stop a moment and think about this.
Think about your daily routine at work or at home. How important is
it that you communicate effectively with others? Now think how
tremendously more difficult it is to communicate effectively when you
are trying to get your message across to a person who has dementia.
Communicating well with co-workers is vital to the success of your
business. Communicating well at home to a person with dementia is
vital to the success of securing both you and your loved one's
emotional, physical and medical survival.
"We have a doctor's appointment at 10:00;
go and get dressed."
This seems like a very simple statement. But to a
person with Alzheimer's, or dementia, you have just given a very
complex, multi-tasked assignment. It is full of steps to figure out.
It is complicated enough to get dressed, and now it is compounded by
the concept of time and an upcoming event.
What makes this
even more confusing, is that it is also very possible you may have
said this entire statement without first getting the person's
attention. Therefore, he or she heard very little of it. The result,
you may think, is that they are becoming obstinate by not obeying
what you said.
This example illustrates how important
communicating becomes in caregiving. What was thought to be a simple
command can no longer be processed as a simple command by the person
with dementia. However, in using good communicating strategies, you
can help the person get through the process of dressing and getting
to the doctor's. Instead of an activity filled with stress and
frustration, the results will be positive and successful.
Use It or Lose It
You know the phrase "use it or lose it."
This most certainly can apply to using our communication skills. Many
of us have already experienced feeling "rusty" in social,
business, or even personal relationship situations. If we have been
"out of circulation" for a while and thrust into a new
situation, we may not communicate effectively, or at the very least,
we may feel nervous and uncomfortable.
This is so true for a
person experiencing declining communication abilities as with
dementia. Moreover, it is probably more accurate to say that for
these individuals, "use it or lose it faster."
As
the communication skills for the person with dementia decline, it
creates a learned helplessness that further burdens the family and
professional caregiver as they provide daily care and
interaction.
This is where we can help. Even in our daily
contact with this population we can:
Develop effective communication skills to use with them
Provide direct communicative opportunities on a regular basis so they can use their communication skills
Reduce the risk of isolation and depersonalization
Decrease the burden of daily care
Practice and Patience
Changing your communication skills will take some time. It will take practice. It will take patience.
This book is meant to be laid out on your kitchen
table, open to a page or two for you to digest during a morning cup
of coffee or a break at work. The information is kept short and sweet
for you to grab at a glance.
Don't try to implement the
techniques in this book all at once. Take a look at one or two each
day. See which ones speak to you. Spend the rest of the day finding
opportunities to use a selected technique or two.
Remember—It
will take time. Improvement in your communication will not happen
overnight, nor can you expect the person with Alzheimer's to respond
overnight. The building of rapport, consistency and effectiveness
will develop over time. And it will be worth it!
What
great rewards await you if you will only have the patience to try
each day to improve your skills and in turn help facilitate
the positive experiences of sharing, bonding, building self-esteem
and wellness in a person unable to easily express their thoughts and
feelings to you. Also, as the disease progresses, you will have
created a connection that will provide companionship in the later
stage, last days, and even the final hours for you and the person you
cared for.
quick reference guide
Summary Chapter 1
What's So Important About Communication?
Human beings must communicate
It meets our basic survival, social and emotional needs
When we are unable to communicate with others, isolation, depression, deterioration of health, rapid loss of abilities and quality of life result
Persons with Alzheimer's and dementia exhibit deteriorating communication abilities
To successfully communicate, we must help to facilitate a person's abilities to interact and connect
We can no longer take the communication process for granted when dealing with dementia
We can learn techniques that will facilitate their ability to relate and cooperate with us to bring positive experiences of sharing, bonding, building self-esteem and wellness
Learning these techniques will take PRACTICE and PATIENCE
Chapter 2
The Deterioration of
Communication Skills in
the
Progression of Alzheimer's
and Dementia
Stage I
In this early stage of Alzheimer's, communication changes may be subtle and their onset gradual. This is one of the reasons the disease can be difficult to detect. The subtle changes happen not only to persons with Alzheimer's but to those with related dementias, episodes of confusion and memory loss as well. No matter the diagnosis, the problems a person exhibits in communicating will follow similar patterns. Simply stated, in this early stage, a person may exhibit:
Changes in memory for recent events (short term memory difficulty)
A decreased ability to concentrate
Subtle changes in personality
Word finding problems
Difficulty attending and sustaining attention
Slowness in processing information
This early stage tends to be the longest, the changes gradual, so subtle changes can go on for quite a number of years before anyone suspects something may be wrong. Likewise, the person afflicted is usually in denial that any real problem exists. They often "cover" for themselves or make excuses. This makes it harder for family and friends to convince the person to seek a professional assessment because they'll say, "there is nothing wrong with me."
Stage II
In this stage communication problems become more frequent and severe and loss in memory and thinking become more obvious. A more noticeable change that will expose these problems is communicating in new or unfamiliar settings. In this sense the person is "working without a net." The ability to attend and develop new storage for recent events (short-term memory) is greatly affected. When something is familiar, you may not need to pay "attention" or create "new" memory because an established routine already exists. However, take away the "familiar" and you will have a person with no established "behavior" for what they are experiencing. The attention skill required to take in and process new information, in order to determine how to respond, is deteriorating and the person will have difficulty encoding this new experience. And yet in this stage, the ability to react to simple social exchanges is usually intact. So, in this middle stage the person will exhibit:
Difficulty understanding messages
Difficulty expressing and completing thoughts
Repetitious statements and questions
Decreased ability to keep a conversation going
Pronounced difficulty finding words
Decreased memory for the meaning of words leading to unusual substitutions
Long term memory difficulties as events may become fragmented or out of order
Stage III
In the final stage of dementia, communication is most impaired. Facial expression is very limited as the muscles for expression have been used less and less over time. Often what remains is an expressionless, flat affect. Since a significant part of our intent in sending and receiving messages is non-verbal, the individual may "look like" they are uninterested, unable to connect as you speak to them. In addition, a person will exhibit:
Content that is "empty" and "imprecise" in the few words or phrases that they can use
Frequent "babbling"
A few social, automatic or reflexive responses may exist, such as "thank you" and "how nice"
The significant deterioration of all functions at
this stage of the disease creates what is sometimes referred to as
the "shell" of the individual, because the ability to
express verbally and non-verbally is so markedly reduced. But there
is still a human being inside. Though the person may not be able to
express it, though they may seem very different, and though they may
not seem to remember exactly who you are to them, they will still
sense the familiarity, the companionship of what you bring to them
because there is an inherent connection.
This is
especially true if you continue to develop your communication
techniques with them as they progress through the disease.
Samples and Definitions of Communication Changes and Problems
Stereotyped Language: Listen for
phrases in everyday exchanges such as "well, that's easier said
than done," or "you got me!" These phrases are often
used to cover their inability to formulate an original expression in
the demands of a normal conversational flow. An example: a common
cover I frequently hear my patients with dementia say is the response
to an orientation question such as, "do you know what today
is?"; to which I hear the reply, "well, no, you see I don't
bother myself with such things."
Paraphrased
Language: Listen for substitutions in words that are the
opposite or errors in category or class (the right group of words,
but the incorrect choice). A person may say "pass the sugar"
when they mean to say "salt." Another common class error is
using the wrong relationship title such as "my mother is coming"
when they meant to say "daughter." On a cold day, "Oh,
no! I want to stay outside," could very well mean, "I want
to stay inside."
Generalized Language: This
is also called Empty Speech. Proper labels of items are
missing, general and vague words are used instead. Persons with
dementia may point or look in a particular direction and say "that
thing, put here." Standing next to a closet, the person may
point to their shoulders, saying "this is here," which may
very well indicate their need to put on their sweater.
Repeating
Statements and Stories: Many people who have Alzheimer's and
dementia retain the ability to tell events of their past or highly
familiar events. They will retain the ability for quite a while into
their disease process. This will become something they are good at,
something they can count on, especially when they want to make
contact with someone. It takes tremendous patience to listen, as if
for the first time, to these statements and stories and not to
criticize or walk away saying "you've already told me!"
Think about it. They may not remember that they've already told you!
Perhaps, too, it is one of the few stories they can successfully talk
about in order to reach out and simply have a conversation with
you.
Repeating Questions: This is probably the
most frustrating of all common behaviors of those afflicted with
dementia. Remember, the ability to "attend" and process new
information is first slowed down and then becomes much worse. Asking
for information over and over is usually because they do not have the
"working attention" to retain the new information. Once
again, it is also sometimes another way to reach out and make contact
with people. This is further complicated by diminishing abilities in
vison and hearing, moreover, increasing the need to seek out and
connect with others.
Inappropriate Responses:
Often times a person with dementia will respond inappropriately. This
can appear as if they are seemingly "rude." They may turn
and walk away suddenly, be blunt, egocentric. They may cry or even
swear (even if they never or rarely did before). It can be shocking,
but not to be taken personally. The person is losing the ability to
attend to the learned "social graces" of
conversation.
Moments of Lucidity: These moments
are when the person with dementia suddenly makes sense, remembers, or
speaks with great clarity. These "windows" often give false
hope to families thinking that the person is getting better. In
general, it is the exception to their responses, not an indication of
recovery. It is best to acknowledge and enjoy these moments as
wonderful exchanges in conversation.
quick reference guide
Summary Chapter 2
The Deterioration of Communication Skills in the Progression of Alzheimer's and Dementia
Stage I
Communication changes are subtle
Difficulty remembering recent events
Difficulty concentrating
Difficulty finding words
Slowness in processing information
Stage II
Communication problems more frequent and severe
Difficulty understanding
Difficulty finishing thoughts, finding and pronouncing words, remembering their meanings
Statements and questions frequently repeated
Long term memory becomes fragmented
Stage III
Communication is severely impaired
Little or no facial expression
A few social words "how nice," "yes"
Despite the severe decline of communication abilities, there is still a human being inside that can experience your companionship
Samples of Communication Behaviors
Stereotyped language: common phrases and idioms—"well, you got me!"
Paraphrased language: substitutions—"pass the salt" when they mean to say "sugar"
Generalized language: empty speech, no labels or names—"put that thing in over it"
Repeating: repeating stories and questions
Inappropriate responses: rude, abrupt behaviors, unable to follow conversational etiquette
Moments of lucidity: windows of surprising clarity, memory and communicative efficacy
Chapter 3
Communication Strengths of
Persons with
Alzheimer's
and Dementia
Working With the Brain That Remains
There used to be a wonderful publication in print
called Wiser Now. The publication was devoted to providing
families and professionals with information and sources of activities
for those who care about people with Alzheimer's. In every issue
there was an article entitled "Working with the brain that
remains." In spite of the deteriorating skills of those with
dementia, there are clearly skills that remain somewhat intact, even
until the later stages. These skills or STRENGTHS, as we shall
call them, can be excellent sources for strategies that can
facilitate communication. Remember the importance of facilitating
communication as mentioned in the first chapter.
Once again,
the necessary adjustments that need to be made to help the person use
their STRENGTHS, must come from you. These STRENGTHS, thank
goodness, are easy to identify and in time, you will know just what
they are and how effective they can be to facilitate interactions,
understanding and social enjoyment.
The following pages
include brief definitions and descriptions of some STRENGTHS that
typically remain in the dementia patient. Take note, and see how many
apply to the person in your care. Can any of these STRENGTHS be
useful in your daily interactions in caring, instructing or just
talking to your loved one?
Routine
Everyone likes a "routine." There is
security in the familiar, knowing the what, where and when
of things to happen. This is so true for the elderly. They have
established routines of daily rituals in personal care, which include
grooming, dressing and eating meals, for example; to social
activities like going to the park, sitting on the same bench with the
same group of folks for a daily chat. These routines have been
embedded in their days for many years. They can do their routines
without really thinking about them too much, and they don't have to
make any "new" decisions. They are secure in their
day, feeling safe that they know what is going to happen.
Take
away what is routine and familiar and you have a person who is
"working without a net," (see page 19). You have now
placed them in a situation that requires new attention, new memory
and mostly "uncertainty."
Helping to establish and
keep a "routine" will facilitate success in their daily
activities.
Helping to establish and keep a "routine"
will facilitate their orientation. They will become more successful
tracking the time of day and day of the week when they have a
"routine."
Helping to establish and keep a "routine"
reduces restlessness and creates serenity.
Jasper the Dog
Every Friday, Jasper the dog came with his master
to Autumn Hills Healthcare Center, a nursing facility in Glendale,
California. His master volunteered every Friday to lecture to the
residents and show videotapes of travels to different states and
countries. During the lecture, the Activity Director would take
Jasper up and down the hallway, stopping in rooms of patients who
were unable to get out of their beds to attend. These bed-bound
patients would rely heavily upon others to help them stay
"connected," know about the day, the weather, and what's
happening in their world.
Jasper provided so much of this
"connection." As he was escorted up and down the hallway
(which is an understatement because Jasper didn't need much
"escorting," for it seemed he knew his job) you could hear
voices from the rooms exclaim, "Jasper's here, it's Friday!"
Recognition
Recognition creates routine and familiarity. It is
important to us in that it also brings security. For the person with
dementia, recognition reduces their anxiety, helps them to interact
with others and feel safe in taking instructions. This is so
important in daily activities, for a fearful person is unlikely to
get up and get dressed with someone who is trying to help them, that
they sense they do not know.
Building recognition takes time.
Just like establishing a routine, it takes repetition and
consistency. It also takes a little bit of small talk.
Taking
the time to engage in the social routine of small talk will
help develop recognition. When placed in a new situation or with a
new individual, taking the time to talk like good old friends will
build familiarity that will quickly establish a source of recognition
for the person with dementia.
You can see recognition on
someone's face. They may not be able to shout out your name, they may
even call you by the wrong name, but they can express comfort with
something familiar. Often, I'm called a cousin or daughter when
approaching my patients. Whether I'm labeled accurately or not is not
the point. The fact that I am recognized creates an immediate
connection.
Consistency
One of the best ways to capitalize on the
strengths of persons with dementia is to use consistency.
People respond so quickly to consistency. They may not have the
ability to learn new procedures as much as they have the ability to
be conditioned to use new procedures with your help. This
comes from the use of consistency in your daily interactions
and activities with them.
Building consistency takes
planning and organization. If part of your life involves
taking care of, living with or managing a family member or friend
with dementia, you will need to get organized. You will need
to sit down with the daily planner and figure out where and when you
can create consistency out of your schedule to help establish a
routine and build recognition for the person with dementia. This may
involve other people, family and even support organizations (check
Where to Go for Help on page 99).
Go ahead. Get your
schedule arranged. Once your routine is established, it will
be much easier. You will benefit from consistency as well. It
will reduce the burden of guesswork and guilt from your days and
weeks.
Procedural Memory
Procedural memory is a wonderful asset.
This is the memory system that acts like a computer. It stores the
programs of how to do different functions such as brushing our teeth,
driving a car, making coffee and even playing the piano.
This
is the memory that helps the person with Alzheimer's, or dementia,
know how to walk, even if they forget where they are going.
Helping
to facilitate tasks and activities that use procedural memory will
maintain function. They will sustain a sense of independence for the
person. They will create success in daily activities.
It is
even possible to establish new procedural memories or simplify
procedural tasks as the disease progresses. Here again, consistency
to develop a routine is very important. For example, you may
have reached the point where your loved one may not be able to
complete fixing and preparing an entire meal, but you could modify
the task by letting them stir the batter, layer a sandwich or set
plates and silverware on the table.
Long Term Memory
For the person with dementia, retrieval of
long-term memory events—earlier childhood, adult and very important
events—brings success in communicating and great satisfaction in
human interactions.
These memories are somewhat "hard-wired"
and are easily accessed. They may not remember the name of their
spouse, but they can tell you all about their wedding day with
excitement. These long-term memory events are usually the stories we
hear our loved ones repeat quite often. The trick is to stay
interested and listen as if for the first time. The tendency in our
busy lives is to say "you already told me that!" It's
important to remember: words do hurt, and why make the person
feel bad when all it takes is a few minutes to let them feel good and
tell you a story—again.
Over time, the telling of long-term
events can become fragmented, and may not be entirely accurate (see
page 19). The human urge is to correct these inaccuracies. I
encourage you not to do so. Instead...
Relax. Enjoy the
positive experience you have facilitated by listening and validating
the person's effort in communicating with you.
Reciting and Singing
The ability to recite old sayings, poems and songs
stays intact for quite a while for persons with dementia. It brings
tremendous joy and comfort to these individuals. It creates a shared
experience for speaker and listener, stimulates emotion and awakens
expression.
I cannot count the number of times I have
personally worked with individuals who, it seemed, could not utter a
word, but could easily break into a familiar song. That ease of
responding would facilitate more responses and soon, a wonderful
conversation developed. I have also noticed when I approach people
who seem to be expressionless, getting them involved in a few songs
or funny poems leaves them smiling and feeling positive from the
experience.
They respond to the "rhythm and rhyme"
of song lyrics and poems. They love to hear, recite or read
limericks. Jokes that make a pun out of language are definite
favorites. And as silly as they are, "knock, knock" jokes
are very popular:
"Knock, knock" . . . . . . . "Who's
there?"
"Amos" . . . . . . . . . . . . . . "Amos
who?"
"Amos-behaving, saving my love for you."
How about a clever riddle:
"What did the light bulb say to the
lampshade?"
"You stay here, I'm going out for the
night!"
quick reference guide
Summary Chapter 3
Communication Strengths of Persons with Alzheimer's and Dementia
It is important to work with the "brain that remains."
Routine: creates security
Recognition: develops routine and familiarity
Consistency: helps to condition new routines and behaviors
Procedural memory: stored memories of how-to programs for activities
Long-term memory: earlier and important events
Reciting and singing: creates positive experiences
Chapter 4
Communication Strategies
Effective in
Communicating with
Persons Who Have Alzheimer's
and Dementia
Communication Strategies
Now that we've looked at —
Chapter 1: The Importance of Communication
Chapter 2: The Deterioration of Communication
Chapter 3: The Strengths in Communication
Let's look at the strategies you can learn and use
to facilitate communication with persons who have Alzheimer's,
dementia, confusion and memory loss.
Although there are
differences in the conditions listed above, there are many
similarities, especially in the way the conditions affect
communication. Also, you may know someone with a complex medical
profile in which many conditions contribute to their deteriorating
communication abilities. The strategies listed will be effective with
virtually everyone. There will always be exceptions, however, and so
you must develop the ones that work best for you and the person in
your care.
Open this book on the kitchen table. Read one or
two strategies. Try them later. Read and reread the
strategies.Try some more. Learn which ones work best.
Keep rereading the strategies, because as the disease
progresses over time, you may find different and perhaps even better
ways to facilitate communication.
Strategy #1
Get Their Attention
It probably seems silly to include this as a
strategy and list it as the #1 strategy, but, IT IS SO IMPORTANT and
yet it is the one we take the most for granted.
We
automatically assume that just by opening our mouths to speak, people
are ready to listen to us. The healthy individual will adapt very
quickly to having someone speak to them. Almost instantaneously the
person is changing focus to receive your message.
A person
with dementia, however, cannot do this (see page 18). Already in the
first stage of dementia, the person will have trouble concentrating
and will process information more slowly. They may also have vision
and hearing deficits that further impair their ability to receive
input.
You cannot make a "connection" with somebody
until you "GET THEIR ATTENTION."
Strategy #1 – Get Their Attention
The Do's and Don'ts
Make eye contact and keep it
Stand in front of the person
Do not shout from another room
Turn off the TV
Remove environmental distractions and background noise
Take the person to a quieter room
Use their name, a social greeting or phrase to help the person "get ready" to listen
Give extra time for processing, do not rush the encounter
Keep encounters face to face
Direct and redirect their attention often
Strategy #2
Speak in a Calm Tone of Voice
This strategy will go a long way. It is so much easier for anyone to listen to someone who speaks in a calm, reassuring manner. For a person with dementia, who is usually feeling uncertain, a soothing voice is one of the most calming procedures you can use in speaking to them. A person who is already somewhat anxious will pick up on emotional tones and often misinterpret your intent if you shout or speak condescendingly. Remember words do hurt, so be careful how you speak.
Strategy #2
–
Speak in a Calm Tone of Voice
The Do's and Don'ts
Be close enough to the person to use a calm reassuring voice
Do not shout! If the person has a hearing loss, simply direct your voice to the better ear
Do not speak rapidly
Keep your cool! Remember your body language must remain cool, calm and reassuring
Strategy #3
Watch Your Language
What you say is just as important as how you say
it. Improving your communication style will do a lot to help you
communicate successfully with a person who has dementia.
When
possible use simple, highly familiar words. Remember, the more
"familiar" things are to a person with dementia, the
greater the "recognition" and the greater the cooperation
in their response.
Use short phrases and sentences when
it comes to the specific information. It is definitely good to use
social banter initially to secure their attention and warm up their
processing, but once you need to say what you've got to say, keep it
short and sweet.
Repeat the information a few times.
Rephrase with key words emphasized by a slight increase in tone or
stress.
Remember, simple, direct communication is the best.
Use concrete language and simple, one-step instructions. Abstract
ideas are much harder to process. Also, the use of adult language is
more effective in communicating. This means do not talk to the person
like you might a child. Be positive, reassuring and do not talk about
them as if they were not present. Remember, words do hurt, so
be careful what you say.
Strategy #3 – Watch Your Language
The Do's and Don'ts
Use simple, highly familiar words
Keep messages short and sweet
Repeat the information a few times
Use concrete language
Use direct communication once you have the person's attention
Use adult language; do not talk to the person as if they were a child
Use positive, reassuring statements
Do not talk about the person as if they were not present
Strategy #4
Use "Yes" or "No" Questions
Using questions that can be answered with a "yes"
or a "no" are extremely helpful. This also holds true for
any two-choice question such as "do you want (water) or
(juice)?" For a person who has difficulty finding words,
giving opportunities to answer in this easy format will improve
interaction and success in the person's responses.
It is also
helpful in later stages when communication is more severely impaired
because often the person is unable to make simple needs known. This
can result in the person expressing himself or herself through
frustration or fear. By using a few simple "yes," "no,"
or two-choice questions, you can facilitate their ability to give you
the information they need to express.
This strategy is
extremely useful if the person is experiencing pain or discomfort. It
gives you, the caregiver, information about a potential or chronic
medical condition that the person cannot readily bring forth. This
strategy can also help you verify the information, so ask the "yes"
or "no" questions a few different ways to ensure accuracy.
Strategy #4 –Use "Yes" or "No" Questions
The Do's and Don'ts
Get the person's attention
Use "yes," "no," or two-choice questions to facilitate interaction and get specific information when communicating
Use when a person has difficulty speaking, especially in the later stages
Repeat the "yes," "no" questions a few different ways to verify accuracy
Use when you need to determine specific needs or location of pain, especially when a person's behavior indicates they are unable to find the words to tell you
Strategy #5
Repeat, Rephrase and Repair
This is a useful strategy that will take time to
develop. It is a way of keeping a conversation going and filling in
the missing information a person with dementia often omits as they
speak.
Repeating is a gentle way to affirm the
action of communicating. It tells the person, "I hear what
you're saying." It also helps the person continue when they have
been unable to complete their own thought. For example, they may say,
"I want a cup of—" You can repeat it as a
fill-in-the-blank with a rise in vocal pitch at the end: "I
want a cup of ______?" This will facilitate the word "coffee,"
"tea" or "juice."
Rephrasing
helps the person with dementia hear a corrected response of what they
have just said, without pointing out a mistake. For example, if a
person says, "water in—the glass," pointing towards the
kitchen sink, you can rephrase and say, "I want a glass of
water."
Repairing uses repeating and
rephrasing in your response along with necessary changes and filling
in of missing information to help the person's response make sense.
"Look at there, that," pointing to a closet on a cold
morning, can be repaired. "Yes, your sweater is in the closet."
You may have to guess sometimes, but with practice you'll get very
good at discovering the person's intent.
Strategy #5 – Repeat, Rephrase and Repair
The Do's and Don'ts
Give this strategy time to develop as you practice your communication skills
Use it to keep the conversation going
Use it to fill in missing information
Use it to correct the person's response without pointing out mistakes
Fill in and correct information as best you can, you may have to guess sometimes
Strategy #6
Orient and Re-orient Frequently
Recalling information of new and recent events is very difficult for the person with dementia. It is sometimes hard for any of us with busy schedules. To combat this we carry our own source of "visual aids," our Day Planners, post-it notes, scraps of whatevers to keep our new information handy and our lives up and running. It makes us feel secure to know where we are, why and what's next.
Just as the Day Planner helps orient us, so must we help orient the person with dementia. We can do this with the use of many visual aids. Large calendars, hand written or typed notes and labels on specific items of importance are all useful in keeping the visual aids very current, especially in the latter stages of the disease. The person has lost the initiative to write down pertinent information and keep it available but can usually read simple messages. Think how you can facilitate their orientation if you help them create a way to use and read calendars or some kind of message center. You may have to do most of it for them, but you will facilitate their orientation and help to promote success in their day.
Another way to orient the person is to use orienting phrases when speaking to them. "Do you like this lovely June summer day?" or "It's 3:00 in the afternoon, would you like some tea?" are examples of using orienting language during verbal interactions.
Strategy #6 – Orient and Re-orient Frequently
The Do's and Don'ts
Keep visual aids up-to-date for the person with items such as calendars, notes, white dry erase boards
Keep the visual aids in sight and easy to locate