Citation
Effectiveness of training for Alzheimer's caregivers

Material Information

Title:
Effectiveness of training for Alzheimer's caregivers
Creator:
Huey, B. Jo McDonnell
Publication Date:
Language:
English
Physical Description:
viii, 77 leaves : ; 28 cm

Subjects

Subjects / Keywords:
Alzheimer's disease -- Patients -- Care -- Study and teaching ( lcsh )
Caregivers -- Training of ( lcsh )
Genre:
bibliography ( marcgt )
theses ( marcgt )
non-fiction ( marcgt )

Notes

Bibliography:
Includes bibliographical references (leaves 74-77).
General Note:
Department of Humanities and Social Sciences
Statement of Responsibility:
by B. Jo McDonnell Huey.

Record Information

Source Institution:
|University of Colorado Denver
Holding Location:
|Auraria Library
Rights Management:
All applicable rights reserved by the source institution and holding location.
Resource Identifier:
47103108 ( OCLC )
ocm47103108
Classification:
LD1190.L65 2000m .H83 ( lcc )

Full Text
EFFECTIVENESS OF TRAINING FOR ALZHEIMERS CAREGIVERS
by
B. Jo McDonnell Huey
B.A., University of Colorado, 1991
A thesis submitted to the
University of Colorado at Denver
in partial fulfillment
of the requirements for the degree of
Master of Social Science
2000


2000 by B. Jo McDonnell Huey
All rights reserved.


This thesis for the Masters of Social Science
degree by
B. Jo McDonnell Huey
has been approved
by


Huey, B. Jo McDonnell (M.S.S.)
EFFECTIVENESS OF TRAINING FOR ALZHEIMERS CAREGIVERS
Thesis directed by Professor Jana Everett
ABSTRACT
Alzheimers Disease is a degenerative progressive disease of the brain, identified as
the fourth leading cause of death in adults after heart disease, cancer and stroke.
Approximately 4 million Americans have this disease. Nineteen million Americans
say they have a family member with Alzheimers. It is predicted that there will be 14
million persons with this disease by the year 2040. It is estimated that over 5 million
caregivers are taking care of someone with Alzheimers Disease. A person will live
an average of 8 and as many as 20 years after the symptoms appear. Successful
management of the disease seems to depend on three things suitable environment,
appropriate approach and intervention techniques. This thesis investigates whether
caregivers can change their understanding of how to approach persons with
Alzheimers Disease, if they are: 1) presented with information that identifies the
behavioral symptoms as a legitimate involuntary manifestation of the disease, and 2)
offered some basic guidelines on how to respond to the behaviors in order to focus on
the desired outcome rather than the behavior. In 1999 four presentations discussing
the effective approaches to persons with Alzheimer's Disease, were given to
caregivers of persons with Alzheimer's Disease. Before and after the presentation,
questionnaires were given out to forty-nine participants who completed and returned
the questionnaires. The matrix section of both questionnaires had ten identical
questions. The first questionnaire had twelve additional identified questions.
Responses to the matrix section were analyzed using the Wilcoxon matched-pairs
IV


signed ranks test. Four questions were statistically significantly different, suggesting
that training can change the understanding of caregivers' of Alzheimer's Disease.
This abstract accurately represents the content of the candidates thesis. I recommend
its publication.
Signed
Jana Everett
v


CONTENTS
Tables ......... viii
CHAPTER
1. INTRODUCTION................................1
2. REVIEW OF THE LITERATURE 10
Disease Symptoms and Manifestations 10
Chemical and Physical Restraint . 13
Environment 16
Caregiver Impact . 17
3. METHODOLOGY................................22
Questionnaire Construction and Coding. .... 24
Specific Methodology ...... 30
Statistical Method 30
4. FINDINGS...................................32
5. CONCLUSION.................................39


APPENDIX
I
l
!
i
I
i
| A. QUESTIONNAIRES AND HANDOUT .... 43
! REFERENCES.................................................74
I
I
Vll


TABLES
Table
1 Tabulation of Questionnaire 1 52
2-A Results of matrix for question 1 54
2-B Results of matrix for question 2 56
2-C Results of matrix for question 3 58
2-D Results of matrix for question 4 60
2-E Results of matrix for question 5 62
2-F Results of matrix for question 6 64
2-G Results of matrix for question 7 66
2-H Results of matrix for question 8 68
2-1 Results of matrix for question 9 70
2-J Results of matrix for question 10 72
viii


CHAPTER 1
INTRODUCTION
Alzheimers Disease is identified as the fourth leading cause of death in adults
after heart disease, cancer and stroke. Many people find that statement questionable.
What is Alzheimers Disease? Isnt Alzheimers Disease a memory problem? Isnt it
relatively new? Do people really die from that disease?
Alzheimers Disease is a degenerative progressive disease of the brain; it is
the most common form of dementia. Dementia is a loss of intellectual functioning
(thinking, remembering and reasoning) so severe that it interferes with an individuals
daily functioning. The diagnostic criteria for Dementia of the Alzheimers Type
taken directly from the Diagnostic and statistical manual of mental disorders (DSM-
IV), (4th ed.), is as follows:
The development of multiple cognitive deficits manifested in both:
(1) memory impairment (impaired ability to learn new
information or to recall previously learned information) and
(2) one (or more) of the following cognitive disturbances,
(a) aphasia (language disturbance)
(b) apraxia (impaired ability to carry out motor activities
despite intact motor function)
(c) agnosia (failure to recognize or identify objects
despite intact sensory function)
(d) disturbance in executive functioning (i.e. planning,
organizing, sequencing, abstracting).
Alzheimer's Disease is obviously a memory problem or it would not receive
the diagnosis according to the criteria. The memory problem is defined as
1


impairment in which there is an inability to learn new information or to
recall previously learned information. That indicates something beyond
forgetfulness and is a starting place to understand the impact of such
impairment. However that is only part of the diagnosis, in addition they
must have at least one of the cognitive disturbances also mentioned. The
explanation of each of the disturbances is in parenthesis but is a description
that doesn't really take on much meaning without further explanation.
Aphasia, apraxia and agnosia are not generally understood terms. Executive
functioning may be a new use of a term but the explanation planning,
organizing, sequencing, abstracting are all commonly understood.
The dictionary definition according to Random House Webster's college
dictionary. (1991) of these cognitive disturbances are as follows:
Aphasia the loss of a previously held ability to speak or understand
spoken or written language due to disease or injury of the brain.
Apraxia a disorder of the nervous system characterized by an
inability to perform purposeful movements but not with paralysis or a
loss of feeling.
Agnosia partial or total inability to recognize objects by use of the
senses.
Learning new things, recalling previously learned information, speaking or
understanding spoken or written language, performing purposeful movements,
recognizing objects, planning, organizing, sequencing and abstracting are all very
necessary for any form of communication. They are all functions that are normally
taken for granted and seem to just happen unless some or all of them cease to
function. When some or all of these functions become impaired communication
becomes very difficult and frustrating for the one with the impairment and for the
ones with whom they are trying to communicate. This is the condition of a person
with Alzheimer's Disease, and it only gets worse because the process is degenerative
and regressive. That means that their brain is degenerating from the disease process
and their memory is disappearing in reverse order of how it was originally stored.
2


Consequently, in their mind they may reside several decades previous to the current
time. The impact of such impairment is so overwhelming that it is virtually
impossible to accept and understand especially when it happens to persons who were
always the epitome of intelligence.
The November 1994 announcement by former President Ronald Reagan that
he had been diagnosed with Alzheimers Disease, gave the disease national attention.
This disease is not new and it is not just for the elderly, it was first identified in 1906
and named for the person who described it, Dr. Alois Alzheimer. Some excerpts
from the original case study are as follows:
A woman, 51 years old, showed jealousy toward her husband
as the first noticeable sign of the disease. Soon a rapidly increasing
loss of memory could be noticed. She could not find her way around
in her own apartment. She carried objects back and forth and hid
them. At times she would think someone wanted to kill her and would
begin shrieking loudly.
Her ability to remember was severely disturbed. If one pointed
to objects, she named most of them correctly, but immediately
afterwards she would forget everything again. When reading, she
went from one line into another, reading the letters or reading with a
senseless emphasis. When writing, she repeated individual syllables
several times, left out others, and quickly became stranded. When
talking, she frequently used perplexing phrases and some paraphrastic
expressions (milk-pourer instead of cup). Some questions she
obviously did not comprehend. She seemed no longer to understand
the use of some objects.
In the Institution her entire behavior bore the stamp of utter
perplexity. She was totally disoriented in time and place and
occasionally stated that she could not understand and did not know her
way around. At times she greeted the doctor as a visitor and excused
herself for not having finished her work. At times she shrieked loudly
that he wanted to cut her or she sent him away in indignation, saying
that she suspected he had sexual designs on her. Periodically she was
totally delirious, dragged her bedding around, called her husband and
her daughter and seemed to have auditory hallucinations. Frequently
she shrieked in a dreadful voice for many hours.
The generalized dementia progressed however. After four and
one half years of the disease, death occurred. At the end, the patient
3


was completely stuporous; she lay in her bed with her legs drawn up
under her (Bums, Howard and Pettit, 1995).
Alzheimer's Disease is considered a terminal illness. However, the actual
cause of death is usually infection (pneumonia) according to the Administration on
Aging Fact Sheet on Alzheimer's Disease (1999).
In summary Alzheimer's Disease is a very debilitating degenerative brain
disease that is characterized by memory impairment resulting in the inability to leam
and store new information. This impairment is accompanied by additional problems
in speech, movement, understanding and functioning required for the routine of
living. It was first identified in 1906 but has only become generally recognized in the
1990's. The original case was identified in a person 51 years old and the course of
her disease lasted four and one-half years with virtually no treatment or understanding
of the disease. Alzheimer's Disease is a terminal illness, the significance of this
disease is outlined in this section.
The image created by the title of one of the first books written about
Alzheimers disease, The 36-Hour Day. (Mace & Rabins, 1981) makes evident the
reason for concern about this disease. It also introduces a serious complication of this
disease, its impact on the family and caregivers. The "36 hour day" is a very accurate
description of every day for the patient as well as the persons involved with the
patient.
Alzheimers Disease affects 19 million Americans who have a family member
with the disease (Gallup Poll, 1992). Approximately 4 million Americans have
Alzheimers Disease (Evans, 1990); the course of the disease from the onset of
symptoms to death averages 8 years, but can range from 3 to 20 years (National
Institutes on Aging & National Institutes on Health, 1997). Research suggests the
brain cells may begin to deteriorate 20 years before the symptoms of Alzheimers
appear (Snowden, D. et al., 1996). It is predicted that 14 million Americans will have
Alzheimers Disease by 2040 (Evans, 1990). The total cost of Alzheimers Disease
4


today is estimated at $100 billion making it the third most costly disease, after heart
disease and cancer (Ernst & Hay, 1994).
It is estimated that over 5 million caregivers are providing direct care for
someone with Alzheimers Disease or a related dementia. Reports state that 75% of
these caregivers have had to make work related adjustments and 3 in 10 have
experienced physical or mental health problems as a result of caregiving (Family
Caregiving, 1997).
The future impact of Alzheimers Disease is emphasized in the publication of
the National Public Policy Program to Conquer Alzheimers Disease (1998) as
follows:
Alzheimers Disease will be the epidemic of the 21st century. By
the time the babyboomers reach the age of greatest risk, as many as
14 million Americans will have the disease. Alzheimers will
overwhelm our health care system, bankrupt Medicare and
Medicaid, and destroy the personal and financial security of
millions of American familiesunless we act now to reverse its
course as we enter the new Millennium.
Caring for someone with Alzheimers Disease is often described as
complicated and overwhelming. What seems obvious from the statistics is that the
impact of this disease while already evident for the caregivers and victims of this
disease will become even more overwhelming. Nineteen million families are
somewhere in the 3 to 20 years of caregiving required for the course of this disease.
It is likely that many of them make frequent self-appraisals and nervous comments
each time they forget a word or misplace something. A way to express the concern
that they may already be in that 20 year prior to symptoms deterioration process of
their own brains.
With medical advances of the 1990s, it seems natural to assume that
appropriate care is available for the 4 million persons with Alzheimers Disease.
However, reports from many of the 37 million persons who know someone with
Alzheimers Disease (Gallup Poll, 1992) indicate that is often not true. A November
5


1998 article in the Wall Street Journal. A Daughters Odyssey, a Home for Dad,
accurately depicts a common plight of both the person with Alzheimers and their
loved ones. The gentleman in the article (Mr. Faulkner) had resources available to
him that are often not available to many persons in his age group. He had enough
retirement funds to finance his own care ($6,200 a month for life), and a family with
time, resources and persistence to continue to search for the right option.
Ellen Graham (1998) depicts Mr. Faulkners life from June to
October 1998. He wandered away from his home in Wisconsin on a
June afternoon and ended up in the middle of a school yard soccer
game he interpreted as a war. He was taken to an emergency room
and heavily dosed with Ativan. His daughter flew in from her home in
Connecticut determined to take him to live with her.
She quickly abandoned that notion. He didn't recognize her the
first day. In the middle of the night, he climbed onto the edge of the
bathtub, knocked down the shower rod and fell, screaming, into the
tub. Keeping him out of harm's way at home, she realized, would
entail following him around with her hand on his shoulder 24 hours a
day. She feared for his safety in their two-story townhouse in
Stamford, "I knew it would destroy my family." she says.
She met with her brother from Atlanta and they found their dad
a place near her home in Connecticut in a facility for memory impaired
people owned by the Marriott Corporation. The next day he attempted
to climb the fence, fell, and once again ended up in an emergency
room, this time strapped to a gurney and heavily sedated with Haldol
after scuffling with a hospital orderly.
He returned to the facility, was deemed unmanageable and
scheduled for a psychiatric evaluation. The psychiatrist found him too
disoriented to evaluate, which, by law, meant he had to leave the
facility, as he could not stay without a psychiatric evaluation.
He was transferred to a psychiatric hospital and within a month
was doing very well. However, since this was an acute care setting
and he no longer qualified to remain there, he had to be transferred.
The long term care portion of this facility had a waiting list of 1,000
for their already occupied capacity of 500.
He was moved to a Long Term Care Facility owned by Vencor,
Inc. (one of the largest nursing home chains in the U.S.). In a very
short period of time his daughter was appalled by his decline. He had
lost weight, and it was difficult to sort out the effect of drugs and
environment from the progression of the disease. She found him
6


incontinent, unable to speak or feed himself, tethered with canvas
restraints in a wheelchair, head down.
Overwhelmed but undaunted, she kept searching and found an
alternative placement back in Wisconsin that specialized in
Alzheimers Care. However, they required a face to face interview
before they would agree to take him. She decided to take the risk and
flew him back to Wisconsin. The trip was agonizing; he tried to
unbuckle his seat belt and get up every 30 seconds or so. She had to
lift him into a wheelchair at the airport herself before driving on to
Madison.
He was unresponsive and unable to stand by the time they
arrived at their destination. The house manager stated upon meeting
him, Time for a drug holiday". After examination by a geriatric
specialist it was decided to take him off all medicines except vitamins.
As the drugs wore off, he returned to his incessant pacing. Staff had to
feed him on the go, following him around because he refused to sit at
the dining table. From the beginning, there was absolutely no
aggression.
On his daughters most recent visit in October, he was seen
doing a bouncy little two-step to the beat of the swing music coming
from the living room stereo. This picture of his quality of life eased
the pain, somewhat, when he confided to his daughter that he realized
that the last vestiges of his reasoning were slipping away.
In looking at the first case of Alzheimers in 1906 and comparing this story in
1998 it seems that we have not come very far in the understanding and treatment of
this disease particularly in the area of care. The outcome for Mr. Faulkner was good
but would it have been without the financial and resource capabilities of his family?
As stated in Grahams (1998) article:
For patients and their families, one of the crudest ironies of
dementing illness is that its symptoms can themselves disqualify
patients from obtaining dignified care.
If the two hospital emergency rooms and the two long term care facilities
would have had staff trained to work effectively with Mr. Faulkner would the odyssey
have been nonexistent? If his daughter had been trained to work with him, would she
have been as reluctant to have him in her own home and would she have initially
made different choices regarding his care? The Wall Street Journal Article clearly
7


depicts the status of care available today for victims of Alzheimers Disease. Mr.
Faulkners daughter established within the first 24-hour period she spent with her
father that she was totally unprepared to care for him as she had originally planned.
According to the statistics in the Family Caregiving in the U.S. survey (1997)
over five million persons are caring for their loved ones, changing their work patterns
and negatively impacting their mental and physical health. Seven in 10 people with
Alzheimers disease live at home with 75% of home care provided by family and
friends. At least half of all nursing home residents have Alzheimers disease or
another dementia. There is an obvious need for appropriate care for this growing
population of persons. The burden for providing and selecting this care is clearly the
responsibility of the family. Some people are obviously successful in providing care.
The geriatric psychiatric hospital and the current home where Mr. Faulkner resides
manage his care. However, the inconsistency and lack of knowledge about providing
care for persons with this disease, even among professionals, make stories like the
Faulkners commonplace.
Why was Mr. Faulkners outcome so different in each setting, he was the
same person with the same disease. There are obviously many items to consider, a
few are: understanding the disease itself, medications, care options, living
environment, interaction with patient, and the impact on everyone involved. For the
purpose of this study these items were categorized as follows: disease symptoms and
manifestations, chemical and physical restraints, environment and caregiver impact.
More specifically the subject indicated to be studied was the caregiver.
Analyzing the considered items was instrumental in the determination to focus
on the caregiver. The two consistent variables in each situation, are the person with
Alzheimer's Disease and the person providing care (caregiver). It seemed logical to
approach a study from the care perspective by addressing the caregiver. To narrow
the subject further the emphasis was placed on the communication between the
caregiver and the person with Alzheimer's. The purpose and scope of the study was
8


to determine the effectiveness of teaching caregivers specific communication
approaches for interaction with persons with Alzheimers Disease. The object was to
measure the change in caregiver responses before and after the introduction of these
approaches.
This thesis investigates whether caregivers can change their method of
interacting with persons with Alzheimer's Disease to improve communication, if they
are: 1) presented with information that identifies the behavioral symptoms as a
legitimate involuntary manifestation of the disease, and 2) offered some basic
guidelines on how to respond to the behaviors in order to focus on the desired
outcome rather than on the behavior.
In an attempt to address this question, two questionnaires were developed.
The first given prior to a presentation for Alzheimers caregivers asks questions about
the symptoms of the disease and asks the subjects to indicate their agreement or
disagreement with ten scenarios of communicating with a person with Alzheimers
Disease. The second questionnaire given following the presentation includes the
same ten scenarios placed in different order and asks for basic demographic
information about the participants. The purpose was to examine the extent to which
caregivers answers changed after hearing the presentation.
The subjects for the study were caregivers who either directly or indirectly
interacted with persons with Alzheimers Disease. The selection of the participants
for the study depended on their attendance at an Alzheimers Caregivers presentation
in the spring of 1999 and their willingness to participate. The goal was to obtain
approximately 50 participants.
9


CHAPTER 2
REVIEW OF THE LITERATURE
According to the Alzheimers Association Annual Public Policy Forum
(1998), Alzheimers Disease if current trends continue, will become the epidemic of
the 21st. Century. This is obviously an attention getting statement which serves the
purpose of the Forum, so that current negative trends do not continue. The basis for
this attention getting statement is well documented in the literature about
Alzheimers Disease.
For the foundation of this study, effectiveness of training for Alzheimers
caregivers, the literature was researched and categorized regarding four subjects.
These four areas of concentration are disease symptoms and manifestations, chemical
and physical restraint, environment, and caregiver impact.
Disease Symptoms and Manifestations
Alzheimers Disease was first identified by Alois Alzheimer in 1906 and
seemed rare until the late 1970s (Jorm, 1987).
The diagnostic criteria as listed in the DSM-IV (1994)(see introduction)
is more than a diagnostic tool for physicians, it is a comprehensive list of the
symptoms associated with the Disease called Alzheimers. It is critically important as
a tool to verify that this is truly a disease process and not inappropriate or deviant
behavior over which someone has control. The importance of this disease emphasis
is to change the way the symptoms of the disease are viewed and treated.
Initially, literature addressed the disease in a manner that implied the patient
had suddenly developed a mental illness; thus it was treatable with antipsychotic
10


drugs and psychotherapy with an attempt to alter the behaviors. Some of the subjects
addressed were personality alterations, psychosis as the first manifestation,
psychopathology, nature of psychotic symptoms and agitated behaviors of the
cognitively deteriorated (Petry, S, Cummings, J.L, Hill, M.A., Shapira J., 1988;
Lesser, I.M., Miller, B.L., Boone, K.B., Hill-Gutierrez, E., Mena, I., 1989; Rubin,
E.H., Kinscherf, D.A., 1989, Drevets, W.C., Rubin, E.H., 1989; Choen-Mansfield, J.,
1986). The text in each of these articles was based on the key words in the titles, as if
finding a name for the behavior would bring solutions.
There seemed to be minimal, if any, references to, or understanding for, the
obvious fundamental restrictions that would be placed on simple tasks, when faced
with loss of memory and inability to learn and process new and current information.
The fact that the brain was degenerating seemed invisible.
Currently, literature seems to have changed and an attempt to identify and
address the underlying causes of behaviors emerges. The term secondary symptoms
appear and describe what has previously been referred to as behaviors. This change
of focus allows and accepts the fact that the brain is degenerating. With this in mind,
solutions external to the patient become apparent, or at least a consideration. Titles of
articles emphasize different words and connotation for example: functional disability,
relationship of aggressive behavior to other neuropsychiatric symptoms, and spectrum
of behavioral changes. One study examines gender difference in response to the
disease process (Gauthier, S. Gelinas, I, Gauthier, L., 1997; Ott, B.R., Tate, C.A.,
Gordon, N.M., Heindel, W.C., 1996, Aarsland, D., Cummings, J.L., Yenner, G.,
Miller, B., 1996; Mega, M., Cummings, J.L., Tara, F., Gorbein, J., 1996).
The indicator of functional impairment is identified as decline in the ability to
perform the activities of daily living (which include personal hygiene, eating
properly, sleeping patterns). Gauthier, et al (1997) suggests that Alzheimers patients
have a physical reason for being nonfunctional rather than being labeled lazy or non-
compliant. With that knowledge, creative ways to assist them in these tasks can be
11


designed and implemented increasing their functioning levels and thus their quality of
life. The findings from the gender study assign apathy and vegetative signs to males,
reclusiveness and emotional lability related to females, (Ott, et al, 1996). Once again
the emphasis shift seemed to be toward something the patient could not change. The
interests of the patients are taken into account and failure-free activities can be
created to provide purpose, social interaction, and flexibility for difficult days. This
in turn improves self-esteem and anticipation which diffuse apathy, reclusiveness and
emotional lability.
The spectrum of behavioral changes and the management of behavior
problems became the focus of studies addressing the care of persons with
Alzheimers Disease. It was determined that the behavioral changes often lead to
caregiver stress and ultimately to institutionalization. In a 1996 study by Mega,
Cummings, Fiorello and Gornbein the ten most common behaviors identified were
delusions, hallucinations, agitation, dysphoria, anxiety, euphoria, apathy disinhibition,
irritability and aberrant motor activity. Jonathan Stewart (1995) suggests that in a
very real sense the family (especially the primary caregiver) is more the patient than
is the demented person. It is the family that requires support and education. This is
illustrated with his description of the most common form of agitation among
demented persons the so-called catastrophic reaction defined as a substantive
emotional reaction precipitated by task failure.
According to Stewart (1995) catastrophic reactions generally
occur when a patient cannot answer a question, attempts a task that
cannot be successfully completed or is told that he or she is wrong.
Typical catastrophic reactions may include irritability, accusations,
tearfulness or even frank combativeness.
He continues to explain that the treatment for catastrophic reactions is to
provide extensive information to the family about when these reactions are likely to
occur and how to deal with them. The best intervention is the creation and imposition
of the no fail environment. However, what is missing in the article is what a no
12


fail environment consists of, where models currently exist and how they were
established. Stewart does not address caregivers other than family. There is an
apparent assumption that paid caregivers are not involved in catastrophic reactions,
the Faulkner's odyssey indicates otherwise.
Chemical and Physical Restraint
In the story of Mr. Faulkner, terms such as strapped to the gurney, tethered
with canvas restraints in a wheelchair, heavily dosed with Ativan, and sedated with
Haldol, introduce a subject that receives minimal attention and of which most people
are truly unaware, the practice of using restraints as a means of safety and/or behavior
control in long term care.
An article in April 1994 in Contemporary Long Term Care is titled
Unshackling the Elderly; it refers to the 1987 Omnibus Budget Reconciliation Act
(OBRA) which took effect in 1990. It was the vehicle that, supposedly, shifted
(because it was mandated) away from the use of restraints as routine nursing home
care. The article begins with very pictorial language:
Some were tied to their beds; others were strapped into wheelchairs.
In all, more than half of the 120 elderly residents at New Martinsville
Health Care Center in West Virginia were routinely restrained. It was
after all, a nationally accepted form of patient control considered both
safe and effective (Romano, 1994).
The front of this article shows leather ties around hands with Unshackling The
Elderly in large white letters. Each page has a center box 2 by 4 with the
following:
THE USE OF RESTRAINTS IS NOW POLITICALLY INCORRECT
RESTRAINTS MAY CAUSE HUNDREDS OF DEATHS EACH YEAR
IN EUROPE, CAREGIVERS HAVE RARELY USED RESTRAINTS
A DRIVE IS ON NOW TO REDUCE CHEMICAL RESTRAINTS.
Some excerpts from the article are as follows:
13


The impact of OBRA has contributed to a dramatic decrease in
restraint use throughout the US over the past two years down from
40% to 22% at most nursing homes.
OBRA guidelines allow the use of restraints only under
doctors orders to ensure the physical safety of the resident, or other
residents".
Safeguards That Kill- uncovered rampant abuse, injuries and
death as a result of the routine use of restraints on up to 500,000
elderly nursing-home residents around the country.
Pharmacological restraints-defined as regular use of a
neuroleptic, anxiolytic, or sedative-hypnotic agent to control behavior,
is used for anywhere from 11% to 58% on residents according to a
February 1992 article in American Family Physician.
Chemical restraints are used on about 32% of the 1.5 million
residents of US Nursing Homes according to HFCA. OBRA sets
equal standards for both types of restraints, requiring alternative
methods of care whenever possible to psychoactive drugs.
Psychoactive drugs are especially dangerous for older people, Every
drug, even when used appropriately, can have unwanted side effects.
Psychoactive drugs can also have life threatening side effects. We
know that certain psychoactive drugs increase a persons chances of
falling and fracturing a hip, being unable to urinate, developing
pressure sores (skin ulcers), or having infections.
There is probably more use of physical restraints in long term care than one
would like to imagine, but any documentation of that fact seems to be virtually
nonexistent. A visit to almost any long term care facility will reveal many persons
sitting in wheelchairs, on closer examination it is obvious that the pretty little plaid
vests and aprons are indeed tied to the wheelchairs at the back. Looking at any
medical supply catalog further evidences this; there is an entire section of safety
devices/restraints.
Chemical restraints were a standard response to subject such as psychotic
symptoms and psychosis and used widely in the initial treatment of Alzheimers
Disease (Lesser, I.M., Miller, B.L., Boone, K.B., Hill-Gutierrez, E., Mena, I., 1989;
Rubin, E.H., Kinscherf, D A. 1989, Drevets, W.C., Rubin, E.H., 1989). It seems that
14


along with a change in terminology and connotation when describing Alzheimers
Disease symptoms, there too has been a change in the use of chemical restraint.
Currently, Cantillon, M. De La Puente, A.M, & Palmer, B.W. in their 1998
article report that due to potential side effects from neuroleptic medications,
nonpharmacologic approaches to treatment should be considered, including
environmental and behavioral modification and caregiver education.
There are studies, such as the one done by Raskind (1998) showing that clinical trials
of antipsychotic drugs demonstrate modest efficacy for psychosis and agitation, but
adverse effects are common. He calls for further studies to provide guidelines for the
management of non-cognitive psychiatric and behavioral problems in Alzheimer
disease. This is a current follow-up to Corey-Bloom, & Galasko(1995) who report
that Psychotropic drugs, particularly antipsychotic (neuroleptics) have been a
mainstay in treating many of the symptoms of Alzheimers Disease, but carry a high
risk of adverse effects. It is stated in this article that at present, treating secondary
symptoms of Alzheimers Disease is more of an art than a science.
Feinberg, M.V., & Michocki, R.J. (1998) explain the role of the pharmacist in
managing Alzheimers Disease. Pharmacists in a long term care setting must know
and apply the federal regulations set forth in the Omnibus Budget Reconciliation Act
(OBRA) of 1987. They have an excellent opportunity to optimize pharmacotherapy
by carefully reviewing treatment regimes to identify potential drug-related problems.
In addition, they clearly state that when possible, psychiatric and behavioral
disturbances of persons with Alzheimers Disease must be managed with
nonpharmacologic strategies, such as environmental changes and behavior
modification.
The literature emphasizes that environmental change and behavioral
modifications are essential for the effective treatment of persons with Alzheimers
Disease. Several of the articles do include caregiver training as an important aspect
of care. What they do not clearly address is how this is accomplished; it is merely
I
15


identified as a potential solution. Definition or explanation of the term behavior
modification seems nonexistent. The research question for this thesis suggests that
the behavior that is actually modified is that of the caregiver not the person with
Alzheimers Disease.
Environment
There is an abundance of literature addressing the environmental aspects of
the treatment of Alzheimers Disease. The earliest information is in regard to safety
and is available from any local Alzheimers Association or the National Alzheimers
Association in Chicago (1990). The reason for addressing the safety of the
environment is to prevent injuries and secondary complications: from falling, to
becoming aware of using unsafe articles inappropriately (such as a safety razor for
brushing teeth) and to be alert to the possibility of accidental ingesting of items that
may be toxic. Reisbergs (1981) Global Deterioration Scale and subsequent analysis
of reverse development patterns provide an understanding of the childlike actions
often taken by a person with Alzheimers.
An entire company named IDEAS (Innovative Designs in Environments for
and Aging Society) out of Cleveland, Ohio was founded in response to the need to
assist with the environmental enhancement of Alzheimers Disease. President,
Margaret P. Calkins (1990) used studies for her Ph.D. dissertation in Architecture on
Alzheimers Environmental Design. One of the most interesting suggestions from
that study is the use of short walls to identify the toilet in rooms in long term care
settings and red toilet seats to identify exactly where the toilet is located.
Special facilities for persons with Alzheimers Disease have been designed
from 1986 through the present time. They include new stand-alone facilities, interior
design to include important color schemes, and the reconfiguring of existing special
16


units (Cape, R.D. & McKay, D., 1986, Hepburn, K., Petrie, M. Peterson, C. &
VanLoy, W. 1995).
Caregiver Impact
It is estimated that over 5 million caregivers are taking care of someone with
Alzheimers Disease or a related dementia as the primary or secondary illness or
condition. This statement and the information in the following paragraphs come from
a booklet published by The National Alliance for Caregiving and the American
Association of Retired Persons in 1997, Family Caregiving in the U S. Findings from
a National Survey.
The definition used for Caregiver is an unpaid person taking
care of a relative or friend who is aged 50 or older, and needs help to
take care of themselves.
The typical caregiver is: a married woman in her mid-forties,
works full-time, is a high school graduate, and has an annual
household income of $35,000.
Forty-one percent, of the caregivers have one or more children
under age 18 living in their household.
The average caregiver provides care for 18 hours per week;
close to 1 in 5 (18%) provide either constant care or at least 40 hrs.
of care per week.
Fifteen percent of all caregivers report they have suffered
physical or mental health problems as a result of caregiving.
Average duration of caregiving is 4.5 years (64% less than 5,
21% 5-9, 10% greater than 10).
The parameters for caregiving may include help with personal
needs or household chores. It might be taking care of a persons
finances, arranging for outside services, or visiting regularly to see
how they are doing. This person need not live with the patient.
A high percentage of caregivers interviewed in the study used
positive words to describe their feelings about caregiving, and
relatively few said they experience family conflict over caregiving.
However, the responsibilities involved in providing care do have an
impact on family life, leisure time, work life, personal finances and in
some cases on physical and mental health. It appears that persons
17


were somewhat reluctant to complain about the caregiver role, which
may even compound the overall impact for the caregiver.
The information from this report clearly described the caregiver burden and the
implied impact on the future of care for persons with Alzheimers. The relevance to
this study is to clarify the term caregiver and to determine through demographics if
the term caregiver is consistent from study to study.
In February 1999 the Alzheimer's Association and the National Alliance for
Caregiving released a Report Who Cares? Families caring for persons with
Alzheimer's Disease. This report presents the results of an analysis of the same data
used for the previously mentioned 1997 Family Caregiving in the U.S. Report. The
purpose for the more recent study was to develop a profile of those who care for
people with Alzheimer's Disease and to compare them to those who care for people
with other conditions.
The following is an overview of those results taken directly from the 1999
report:
Almost nine in ten Alzheimer's Caregivers are giving care to a
relative.
Three-quarters of Alzheimer's caregivers live close to their care
recipient either in the same household or within twenty minutes.
Alzheimer's caregivers are more likely to live in the same household as
their care recipient.
Alzheimer's caregivers report spending an average of 17.6
hours per week giving care compared to 11.8 hours for non-
Alzheimer's care.
Four in ten Alzheimer's caregivers say they provide most of the
care for their care recipient.
Nearly seven out of ten Alzheimer's caregivers help their care
recipient with at least one Activity of Daily Living.
Alzheimer's caregivers are twice as likely to have a highly
intense care experience based on the tasks they perform and the time
they spend giving care.
Older Alzheimer's caregivers those at least 65 years of age -
tend to spend more time giving care, and have more intense caregiving
experience.
18


Alzheimer's caregivers are more likely than non-Alzheimer's
caregivers to say their caregiving negatively affects the time they have
for family members, the amount of time they devote to vacations, their
own activities, and the physical or mental health problems they suffer.
The three most often mentioned difficulties of caregiving
reported by Alzheimer's caregivers are seeing the progressive
deterioration of the care recipient, having high demands on their time
and recipient's attitude or uncooperative manner.
The impact of the disease is best described in the title of the book often
described as the classic in the field of coping with Alzheimers Disease. The 36-
Hour Day, is a family guide to caring for persons with Alzheimers Disease, or other
related dementing illnesses, and memory loss in later life (Mace, N. & Rabins, P.,
1981). The foreword of this book, though written nearly two decades ago seems very
relevant today and can not be paraphrased more clearly than it is written, as follows:
The need for a practical and detailed reference book to assist
family members of patients with dementia has long been felt. Many of
these families would be prepared to continue caring for their relatives
at home is they understood some issues better and in that way could
manage their problems better. A more complete understanding of the
nature of the symptoms and some of the troublesome behaviors that
occasionally accompany these conditions would make the disorders
seem much less mysterious and the implications of symptoms much
less threatening.
In fact, the symptoms and accompanying troubles of demented
patients are much more straightforward than those of many other
patients with psychiatric disorders. And yet, patients suffering from
these various dementing illnesses have not been described, nor have
their families been helped. This deficiency, the result of longstanding
neglect of issues affecting the elderly, is now being corrected by
initiatives such as this one. The sense of pessimism and helplessness
that has characterized the care of these patients in the past is being
replaced by a new optimism derived from a special concern for
patients' well-being. The likely outcome is not only better care for
these patients but also an interest in their management that will
manifest itself in research and teaching. This book represents the first
step in these directions and can be read either as a means of providing
immediate direction on pressing problems or as an overall approach to
19


the care and treatment of the patient throughout the course of his or her
dementing condition.
This book written nearly two decades ago has not had a response to its plea.
There is no sequel and the odyssey or Mr. Faulkner and his daughter would have been
prevented if we had developed a consistent means of special concern for the patient's
well-being.
One article written as a follow-up to a project funded by the National Institute
of mental Health and Alzheimer's Disease and Related Disorders Association is
entitled Twelve steps for caregivers. The article was published in 1989 but has only
become a readily available reference in the past couple of years. It clearly focuses on
the needs of the caregiver and was proposed for the caregivers of persons with
dementia. It uses the twelve step originally developed as the heart of the Alcoholics
Anonymous Program. These twelve steps are adapted to encompass the needs of
caregivers, to provide a simple and complete guide to accepting Alzheimer's Disease,
and to provide a tool to get through the years of care. This appears to be a very useful
tool, though it is absent from the reference lists in the works of persons researching
Alzheimer's care.
One of the most useful books for caregivers was written by Robinson,
Spencer, & White (1991) Understanding Difficult Behaviors. The focus of the book,
as the title suggests, is to understand the behaviors, but it doesnt imply nor suggest
that they are symptoms of the disease. The following difficult behaviors serve as
chapter titles in that book: wandering, pacing, repetitive questions, uncontrollable
outbursts, insomnia, paranoia, delusions, aggressiveness, combativeness,
incontinence, and I want to go home (constant demands to go home even when
they are at home). This book was written a decade after The 36-Hour Day which
indicates that somehow the hopes for that book had not successfully addressed the
issues as intended.
20


There is literature in support of the research question for this thesis. Difficult
Behaviors consistently associated with Alzheimer's Disease from the first case study
are now commonly referred to as secondary symptoms. This provides a basis for
caregivers to identify and accept the behaviors as symptoms and thus involuntary
manifestations of the disease. It is apparent that physical and chemical restraint while
not defined as inhumane are deemed ineffective and the cause of additional problems.
Environment, and the necessity of altering it for persons with Alzheimer's Disease, is
well documented. The caregiver impact is statistically significant, for the burden is
obvious and is predicted to increase substantially over the next two decades. The
evidence seems consistent that effective training for caregivers is needed. This
training provides a viable solution to support and maintain some quality of life for
persons with Alzheimers Disease, and their families (most often the caregivers).
21


CHAPTER 3
METHODOLOGY
This thesis investigates whether caregivers can change their method of
interacting with persons with Alzheimers Disease to improve communication, if the
caregivers are: 1) presented with information that identifies the behavioral symptoms
as a legitimate involuntary manifestation of the disease, and 2) offered some basic
guidelines on how to respond to the behaviors in order to focus on the desired
outcome rather than the behavior.
For the purpose of investigation, two questionnaires were developed (see
Appendix A). The first given prior to a presentation, attempts to define the caregiver
and caregiver role, asks questions about the symptoms of the disease and asks
subjects to indicate their agreement or disagreement with ten scenarios describing
how to treat persons with Alzheimers. The second questionnaire given following the
presentation includes the same ten scenarios placed in different order and asks for
basic demographic information about the participants. This study examines the extent
to which caregivers answers change after hearing the presentation.
The subjects are attendees at educational and support group presentations.
The presentations are targeted towards caregivers that either directly or indirectly
work with persons with Alzheimers Disease. Attendance at one of the presentations
given in April 1999 and a willingness to participate was the selection process. The
goal was to obtain approximately 50 participants.
Permission to incorporate the questionnaires as a part of the presentation was
obtained at the time that the presentations were scheduled. The presentations were all
titled Alzheimer's Disease Activities of daily living: dos, don'ts and how-tos. The
meetings consisted of: 1) an educational series usually attended by family members of
22


a person diagnosed with Alzheimers, 2) a support group sponsored by the lzheimers
Association for family members of persons with Alzheimers Disease, 3) a mandatory
in-service for a home health agency that provides care for persons with Alzheimers
Disease and 4) a lecture series sponsored by an Alzheimers Day Care Center.
Voluntary participation was clearly emphasized and all potential participants were
requested to complete a consent form prior to the completion of the second
questionnaire. This thesis was designed to measure the effect of training by
comparing answers before and after the presentation.
Each set of two questionnaires and two consent forms were distributed at the
beginning of the meeting. All attendees were asked to complete the first
questionnaire and hand it in when finished. The consent form and the second
questionnaire were in a sealed envelope labeled do not open until the completion of
the presentation". The two questionnaires were marked so they could be matched
after the data was collected.
Following the presentation, subjects if they wished to participate in the
research project, were asked to open the envelope. Since participation was strictly
voluntary, they were reminded that if they did not wish to participate they were free
to go. If they did not wish to participate, but were interested in the process they were
welcome to stay and submit blank forms. The consent form was explained with
instructions to keep the extra copy for their records, and then the completed consent
forms were collected. Participants then completed the second questionnaire. The
first questionnaire took from 5-15 minutes to complete, the second 5-10 minutes.
There was no compensation for participating in the research. The consent
form provided the phone number of the Greater New Orleans Alzheimers
Association Helpline as a resource for any discomfort a participant might feel or for
answering additional questions regarding the disease process. This phone number
was pointed out to participants and they were encouraged to keep the copy of the
consent form provided for their records.
23


All forms were gathered and taken to the researchers home and sorted. Blank
and unmatched questionnaires were retained in a file and matched questionnaires
were processed for evaluation. A respondent number was assigned for each matched
set of questionnaires. Consents were kept in a separate file to maintain
confidentiality.
Questionnaire Construction & Coding
Historical Information
Empathy for caregivers and their overwhelming burden in caring for a loved
one with Alzheimers Disease was developed by experience. In 1969 a very
significant loved one, to me, Ike, was having problems. The Doctor diagnosed him
with hardening of the arteries. Generally, he was just considered to be old, mean
and cantankerous. He no longer seemed to be able to function in his usual capacity.
This created a particular hardship for his wife, Tirza, as she didnt drive and they
lived 12 miles from the nearest grocery store. In addition, he usually refused to get
into a car (other than driving his own) and could not be left alone as he would wander
away and become lost. Fortunately, I moved back to that area and assisted his wife
with his care the last year of his life. I was very successful in working with him,
because of our lifelong unconditional rapport. His last 6 weeks of life (following a
stroke and ending with a stroke) were in a nursing home. He was tied either into a
chair or in his bed because he was difficult, violent and impossible to manage. I
would go to the home three times a day, untie him, clean him up and feed him and
would then have to retie him before I could leave. Each time as I prepared to leave,
he would beg me to take him and I would cry as I tied him to his chair, I would exit to
the sounds of his calling out kid, kid, please dont leave me kid. His wife was
equally sad, as he never acknowledged her again; he would ask me for her when she
was in the room. For the remainder of her life she believed that he was mad at her for
24


putting him in a nursing home. I was never successful in convincing her that was not
the case.
He died December 1, 1972 and I vowed that one day I would find out what
was wrong with him and I would do something about it. In 1985 on a bulletin board
in the building where I worked there was an advertisement for respite care providers.
This advertisement was of particular interest to me because it was by a newly formed
organization A.D.R.D.A. which stood for Alzheimers Disease and Related Disorders
Association. I had decided that Ike probably had Alzheimers complicated by his
strokes and this seemed like the opportunity to address my vow.
I was trained as a respite care provider, which truly consisted of how to
complete paperwork for the grant requirements. I was then sent out on cases to
provide respite for the families of Alzheimers persons by staying with the
Alzheimers person for a set number of hours. I discovered quickly how little I knew
about the disease and how little unconditional rapport I had with these persons.
However, I was determined and I soon became known as the person who could
handle the toughest cases. Two of those cases played an important role in the
development of my experience, and ultimately the questionnaires for this research.
Both ladies, named Helen, were instrumental in the development and understanding
of the techniques I use in working and communicating effectively with persons with
Alzheimers Disease. I worked with Helen H.(every Saturday for 10 hours in her
own home,) from early 1986 until her death in February 1992.
I worked with Helen N. by agreeing to move her into my home in 1988 where
she resided until her death December 1990. Her family provided the funds and I
hired and trained persons to work with her for 12 hours per day, 7 days a week and I
took care of her the other 12 hours. It became very necessary to develop a list of do's
and donts before leaving someone to care for Helen N. and unfortunately they often
greeted me with I am not coming back mail my check.
25


In 1988 studying Alzheimers from the caregiver perspective became my
impetus. I started working in a nursing home and enrolled in a university with a quest
to find out as much about this disease as possible. That was the basis and continues
to be the motivation behind everything I do professionally. My two Helens taught
me quickly what to do and what not to do to maintain quality of life for both of us. I
made a concerted effort to analyze what was effective and to determine why.
Written instructions were the most effective means of communication for
anyone hired to stay with Helen N. There was little time for training and even less
time to read instructions, so efficiency and necessity resulted in the formation of a
brief list of items to avoid at all costs. At the top of the list I wrote "Absolutely
Never." The use of this list became effective but incomplete; they needed to know
what to do instead. This list over a period of six years was developed into the
handout for the Ten Absolutes (see Appendix A). The list serves as a quick guide
for effectively communicating with someone who has Alzheimer's. In addition, it
became a useful tool and became my outline for teaching someone how to work with
a person with Alzheimer's Disease. It has served as an effective handout for a brief
in-service and has also been useful in training seminars that include a day on each of
the ten subjects. The simplicity and relevance of the list is enhanced by providing
examples of typical situations one encounters when working with Alzheimer's
patients when addressing each of the ten subjects.
Development
Two questionnaires were developed specifically to measure the differences in
responses before and after a presentation titled, "Alzheimer's Disease Activities of
daily living: dos, don'ts and how-tos!" The "Absolutely Never" list was the outline
for the presentation and given to the participants after the questionnaires were
completed.
26


The first questionnaire given prior to a presentation was developed to
accomplish three tasks: 1) define caregiver for this study, 2) analyze participants
perception of disease symptoms and 3) establish their response to ten scenarios that
depict the ten items on the list.
The second questionnaire given following the presentation includes the same
ten scenarios placed in different order and asks for basic demographic information
about the participants. The purpose of this questionnaire was designed to measure the
extent to which caregivers answers change after hearing the presentation.
Both questionnaires include a couple of special interest "feelings" questions.
The object was to put the participant at ease and to provide a prospective correlation
for future studies.
In the caregiver impact and burden section of the literature review, the term
for Caregiver, taken from the 1997, Family caregiving in the U.S. findings from a
National Survey, was defined. It stated that a typical caregiver was a person who
provides unpaid care to a relative or friend who is aged 50 or older. One task of the
caregiver was to help the Person with Alzheimer's Disease take care of themselves.
Caregiving was further defined as helping with personal needs, household chores,
personal finances, arranging for outside services or visiting regularly to see how the
care receivers are doing.
For the purposes of this study and its usefulness for future studies, the
definition of caregiver was expanded to include paid and unrelated persons. This
expansion was addressed through the first questionnaire in questions 1 -6 (see
Appendix A).
One of the assumptions in the question addressed in this thesis is identification
of the behavioral symptoms of this disease as actual manifestations of the disease.
Question seven of the first Questionnaire identifies to what extent the participant feels
they understood the symptoms of the disease. Question eight of the first
questionnaire asks the participants to list two symptoms of the disease. These two
27


questions were designed to provide a comparable perception of the disease symptoms
from the participant's perspective. (See Table 1)
The Ten Scenarios were developed by using each of the items on the
"Absolutely Never" handout and then making a statement to illustrate that item. For
example, the first item on matrix section of the questionnaires is never argue instead
agree. The first question in the matrix section states when the person with
Alzheimers disease makes a mistake they should be corrected. This statement is then
followed by an example in parenthesis and a reference as to what they should do
instead. Example number one states, (if they said they haven't eaten for days and they
have just eaten they should be reminded that they ate and what they ate.) The
participant then decides if he/she agrees or not.
A complaint often expressed by caregivers is that Alzheimer's persons always
want to argue. Apparently, correcting by the caregiver is not seen as causing
arguments. In the presentation the notion that correcting the person creates
arguments is introduced. This is the basis for teaching caregivers to focus on what
they want (outcome), which in this case is to not have arguments. The subtle
message is to identify how they can reach the outcome (not arguing) by changing
their own behavior (not correcting) rather than attempting to change the behavior of
the person with Alzheimer's.
A matrix question design was chosen using Agree/Disagree in response to the
statement made about each of the ten items. Respondents were given the opportunity
to state if they agreed or disagreed and if they felt strongly about either statement. In
an attempt to capture all possible responses don't know was included as the fifth
category on the matrix.
The second questionnaire asks basic demographic information for
comparisons and for a more accurate ability to further analyze data. The
demographics chosen were patterned after the identified typical caregiver as
28


discussed in the impact and burden section of the literature review. These questions
were placed following the matrix questions 6-10.
In working with caregivers through the years there seems to be a sense of their
being overwhelmed though this is rarely expressed verbally. What is often expressed
is frustration sometimes directed at unavailable resources. These resources are
difficult to pinpoint. This notion is supported by the 1997, Family caregiving in the
U S. findings from a National Survey summary and conclusions section as follows:
While a high percentage of caregivers use positive words to
describe their feelings about caregiving, and relatively few say they
experience family conflict over caregiving, the responsibilities
involved in providing care do have an impact on family life, leisure
time, work life, personal finances and in some cases on physical and
mental health.
Utilization of supportive services available in the community
such as home delivered meals, adult day care, or personal care/nursing
services is correlated with need. Very few caregivers cited cost or
"bureaucracy" as a barrier to service utilization. When asked what
kinds of help, information or support they would use, or would have
used, a high percentage (38%) said they didn't know, and 19 percent
said they didn't need any (additional) help. The most frequently cited
need, however, was for free time, a "break" from caregiving, or time
for oneself- particularly those caring for someone with dementia, and
primary caregivers.
In an attempt to put the participants at ease and to create a basis for future
studies some special interest questions were placed in both questionnaires. These
questions were designed to capture a sense of what seems to be the most generally
expressed areas of resource and frustration by caregivers. Both of these subjects were
addressed in the caregiver studies cited in the review of the literature section of this
thesis. In the first questionnaire questions 9, 10, 11, 12 give the participants an
opportunity to express some feelings and to identify the areas of frustration and
resources; question 14 is designed to identify if their experience, over time, changed
their perspective. In The second questionnaire, questions 1 and 2 were designed to
indirectly address the need for a "break".
29


Specific Methodology
The data was sorted, coded and placed on tables for comparison and
analysis. This process used is called statistical inference, drawing conclusions
about number of events on the observations of a portion of them. The common
use of statistical inference is to determine, in terms of probability, whether
observed differences between two samples signify that the populations sampled
are themselves really different. The object is to determine whether observed
differences are merely due to chance. For integrity of data in research it is
important that a method is selected that accurately interprets the results of the data
collected. The method for analyzing the data collected for this thesis comes from
techniques of inference which do not make stringent assumptions about parameters
and are thus called nonparametric techniques, they are also referred to as "ranking
tests" or "order tests".
Specifically Table 2 (A-J) were devised to compare the before and after
answers to each of the ten questions on the matrix presented in the questionnaires.
The questionnaires matrix of 10 comparison questions used data of an ordinal
scale of 5 items: strongly agree, agree, disagree, strongly disagree, dont know.
For the purpose of data interpretation a number was assigned to each item strongly
agree=l, agree=2, dont know=3, disagree=4, strongly disagree=5.
The numbers were recorded on Table 2 and the letter (A-J) assigned for
each of the ten respective questions (see Tables).
Once the data was entered on the table then the difference in the two
numbers was recorded in the difference column. The data was then ready to
analyze statistically and to measure significant difference in the response to
questions before and after the presentation.
Statistical Method
Because the data included two related samples of ordinal data, using
Siegels (1956) Nonparametric statistics for the behavioral scientist text and the
chart inside the front cover, it was determined that the Wilcoxon matched-pairs
30


signed-ranks test was the most appropriate to analyze the data for this thesis
recorded from the questionnaires on Table 2 (A-J).
Summary of procedure. These are the steps in the use of
the Wilcoxon matched-pairs signed-ranks test:
1. For each matched pair, determine the signed difference
(di) between the two scores.
2. Rank these dis without respect to sign. With tied ds,
assign the average of the tied ranks.
3. Affix to each rank the sign (+ or -) of the d which it
represents.
4. Determine T = to the smaller of the sums of the like-
signed ranks.
5. By counting determine N = the total number of ds
having a sign.
6. The procedure for determining the significance of the
observed value of T depends on the side of N:
a. If N is 25 or less, Table G shows critical
values of T for various sizes of N. If the
observed value of T is equal to or less
than that given in the table for a
particular significance level and a
particular N, Ho may be rejected at that
level of significance.
b. If N is larger than 25, compute the value
of z as defined by formula (5.5).
Determine its associated probability
under Ho by referring to Table A. For a
two-tailed test, double the p shown.
If the p thus obtained is equal to or less than
a, reject Ho.
Wilcoxon matched-pairs signed-ranks test is a nonparametric statistical evaluation
of ordinal data designed to determine whether there is a significant difference in
scores from the same individuals under two different circumstances. The purpose
of this study was to determine if there was a significant change in understanding
before and after the presentation.
31


CHAPTER 4
FINDINGS
The demographics of the participants in this study were gathered at the end of
the second questionnaire (questions six through ten) with the results as follows:
This study was comprised of forty-nine participants, forty-two females and seven
males.
Age group:
Data were divided into ten year age increments with the outside parameters of under
twenty and ninety or older. One person was in the 20-29 range, nine in the 30-39
range, five in the 40-49 range, eighteen in the 50-59 range, seven in the 60-69 range,
six in the 70-79 range and three in the 80-89 age groups.
Education level:
All participants had completed high school and all but eight had more than high
school including ten with graduate level education.
Socioeconomic status:
Six persons were in the below $20,000 range, two in the $80,000-399,999 range,
three were in the over $100,000 and the remainder evenly distributed in the $20,000
to $79,000 range.
Ethnicity:
The respondents were comprised of forty-two Caucasians, six African Americans and
one Hispanic person.
The first six questions of the first questionnaire were designed to define
caregiver for this study:
Question one:
Thirty five of the forty nine participants provided care for someone with
Alzheimer's Disease, four indicated that they did not provide care but
answered the remainder of the questions as if they did provide care.
32


The responses of those thirty nine participants on the next questions were as follows
Question two:
Relationship of person with Alzheimer's Disease to participant:
five spouses, fourteen parents, seven in-laws, one grandparent, one
sibling, one significant other and ten non-related paid caregivers.
Question three:
Living situation of person with Alzheimer's Disease in relation to the
participant:
four in own home alone, two in own home with paid assistance,
sixteen in the home of a family member, ten in participants home, two
in participants home but with paid assistance, two in personal care
homes, one in assisted living, one in a nursing home, one in the
hospital.
Question four:
Participants perception of their role as primary caregiver:
Twenty of the thirty nine participants considered themselves the
primary caregiver of the person with Alzheimer's Disease.
Question five:
Role in relationship of the participant to the person with Alzheimer's
Disease:
three managed 24-hour care performed by someone else
eleven managed part time care performed by someone else
eight provided direct care 24-hours a day
seven professional caregivers (2 direct care, 2 management, 3
volunteers)
three had no role at all only interested in the disease
thirteen marked other listed as follows:
-Live in another state
-Assist mom with care
-Review and supplement care
-2 home health aide
-2 still early signs don't need care
-Relieve father-in-law twice a week
-Daughter-in-law
-Have help 5 days per week
-Provide care 3 days per week
-Occasionally help neighbor with her mother
-Deceased
-Haven't started care yet
33


Question six:
Number of hours spent per day was varied as follows:
four
nineteen
1-4 hours
5-8 hours
9-12 hours
13-15 hours
16-23 hours
24 hours
0 hours
four
three
two
three
six
Combining the demographic information and the information designed to define
caregiver identifies the respondents as follows:
Caucasian female, age 50-59 with at least a high school education,
with a family income between $20,000 and $80,000 who cares for a
family member, primarily in the home at least 1-4 hours a day and as
much as 24 hours per day.
One of the assumptions in the question addressed in this thesis is that caregivers need
to identify the behavioral symptoms of this disease as an actual manifestation of the
disease. One of the purposes of the first questionnaire was to analyze participant's
perception of the symptoms of Alzheimer's Disease. They were first asked if they
understood Alzheimer's Disease Symptoms. One said always and the others were
divided evenly between most of the time and some of the time. Question eight asks
them to list two of the symptoms of the disease (see Table 1). While there is some
similarity in the answers there are many different symptoms, which might indicate
that they understand the disease very differently. The most common listed symptoms
were forgetfulness, memory loss and confusion. Behavioral symptomatology was
mentioned but not with consistency or large numbers. This is a basis for further study
but not an adequate measure for this thesis.
In the first questionnaire questions nine, ten, eleven, and twelve give the
participants an opportunity to express some feelings and determine their perception of
available resources. In the second questionnaire, questions one and two were
34


designed to express feelings and indirectly address the need for a "break". The
purpose as stated in the methods section is to put the participants at ease and provide
a prospective correlation for future studies.
Question thirteen of the first questionnaire and question three of the second
questionnaire provided the matrix of the same ten questions, arranged in different
order. These were the questions used for comparison for this thesis.
The matrix of ten comparison questions used data of an ordinal scale of five:
strongly agree, agree, disagree, strongly disagree, dont know. For the purpose of
data interpretation a number was assigned to each item strongly agree=l, agree=2,
dont know=3, disagree=4, strongly disagree=5.
The numbers were recorded on Table 2 and the letter (A-J) assigned for each
of the ten respective questions (see Tables).
Once the data was entered on the table then the difference in the two numbers
was recorded in the difference column. The data was then analyzed statistically to
measure significant difference in the response to questions before and after the
presentation. The ten questions and significant difference result for each question is
as follows:
Question 1:
When they make a mistake they should be corrected (for example, if they said they
havent eaten for days and they have just eaten they should be reminded that they ate
and what they ate).
Responses to question one were statistically significantly different before
versus after the presentation. (T=l, N=26,p<, 0001)
Question 2:
They must understand the reason for everything we want them to do (for example,
they must hurry and eat and take a shower and get ready because we have an
appointment and we dont want to be late like we were last time because they didnt
hurry).
35


Responses to question two were not statistically significantly different before
versus after the presentation. (T=59.5, N=16,/?> .05)
Question 3:
They need to be made aware of their mistakes (for example, remind them that they
just asked the same question in a conversation with friends).
Responses to question three were statistically significantly different before
versus after the presentation. (T= 19.5, N= 14, p < .01)
Question 4:
They need detailed explanations of what is expected of them (for example, when
Mrs. Jones comes to stay with you today you need to help her, dont get angry, dont
ask her the same questions over and over, and be sure to eat. We need her to be
willing to come back again or I wont be able to go to important appointments).
Responses to question four were not statistically significantly different before
versus after the presentation. (T=50.5, N=15,/? >. 05)
Question 5:
It is acceptable to ask them if they remember (for example, what did you do today,
what did you have for lunch today, do you remember who this is?).
Responses to question five were statistically significantly different before
versus after the presentation. (T=20.5, N=29, p < 0001)
Question 6:
They need to be reminded that they are being repetitive, (for example, I just told
you we are not going out today, how many times do I have to tell you we just had
lunch, you just called Jane and we cant call her again this soon.)
Responses to question six were statistically significantly different before
versus after the presentation. (T= 18, N= 12, p < .01)
Question 7:
They must do what is proper, even if what they prefer to do isnt harmful (for
example, you cant wear your clothes to bed, you cant wear two shirts at the same
36


time, you cant eat again you just ate, you cant keep walking back and forth, you
need to sit down.).
Responses to question seven were not statistically significantly different
before versus after the presentation. (T=37, N=15, p > .05)
Question 8:
Constant demands must be made to keep them from being an embarrassment (for
example, they must be told to pay attention, stop making incorrect responses in
conversation, insist they do what they are asked to do, stop making inappropriate
remarks, not take things that belong to others).
Responses to question eight were not statistically significantly different before
versus after the presentation. (T=25, N=9, p > .05)
Question 9:
Because they are confused they wont really understand if you talk about them in
their presence (for example, "did you have any problems with her today, be sure she
takes her medicine she spit it out this morning, I hope you dont have trouble today it
took me 20 minutes just to get him into the car, he has been looking for his mother all
morning").
Responses to question nine were not statistically significantly different before
versus after the presentation. (T=42.5, N=15, p > .05)
Question 10:
Aggressiveness and Combativeness are a part of the disease, not a response to what is
happening (for example, if they are soiled they must take a shower even if it takes
several people to get them into the shower, they understand exactly what they are
doing and they are just trying to get even and that cannot be allowed, they are taking
other people things they know better and they should apologize.)
Responses to question were not statistically significantly different before
versus after the presentation. (T=53.5, N=14, p > .05)
37


!
In addition to finding statistical significance of difference before versus after
the presentation the results were sorted to determine if there was a difference in these
responses for caregivers versus non-caregivers. This was done with question 1 and
question 2 with the following results. Finding for chi square was non-significant
which indicate that there was no statistically different knowledge between caregivers
and non-caregivers.
Questions 3-10 were sorted using the basis of Questionnaire 1, Question 7
which asks if they feel they understand Alzheimers disease and the response had
been affirmative, l=always, 23=most of the time and 24=some of the time. For the
three questions that had shown statistically significant differences in response before
versus after the presentation (3,5, & 6) it was tested to see if there was a statistically
significant difference in those who understood Alzheimers most of the time versus
those who understood it some of the time. While there was some visible fluctuation,
there were not statistically significant differences in the pattern of responses of those
who perceived they understood the disease most of the time and those that understood
it some of the time.
The result of the analysis of the matrix data shows that four of the ten
questions measured a significant difference in responses after the presentation. This
suggests a positive answer to the thesis question whether caregivers can change their
method of interacting with persons with Alzheimer's Disease to improve
communication, if they are: 1) presented with information that identifies the
behavioral symptoms as a legitimate involuntary manifestation of the disease, and 2)
offered some basic guidelines on how to respond to the behaviors in order to focus on
the desired outcome rather than on the behavior.
38


CHAPTER 5
CONCLUSION
In summary Alzheimer's Disease is a very debilitating degenerative brain
disease that is characterized by memory impairment resulting in the inability to learn
and store new information. This impairment is accompanied by additional problems
in speech, movement, understanding and general functioning required for routine
living. It was first identified in 1906 but has only become generally recognized in the
1990's. The original case was identified in a person 51 years old and the course of
her disease lasted four and one-half years with virtually no treatment or understanding
of the disease.
Alzheimers Disease affects 19 million Americans who have a family member
with the disease (Gallup Poll, 1992). Approximately 4 million Americans have
Alzheimers Disease (Evans, 1990); the course of the disease from the onset of
symptoms to death averages 8 years, but can range from 3 to 20 years (National
Institutes on Aging & National Institutes on Health, 1997).
It is predicted that 14 million Americans will have Alzheimers Disease by
2040 (Evans, 1990). The total cost of Alzheimers Disease today is estimated at $100
billion making it the third most costly disease, after heart disease and cancer (Ernst &
Hay, 1994).
It is estimated that over 5 million caregivers are providing direct care for
someone with either Alzheimers Disease or a related dementia. Reports state that
75% of these caregivers have had to make work related adjustments and 3 in 10 have
experienced physical or mental health problems as a result of caregiving (Family
Caregiving, 1997). With this information in mind, this thesis investigates whether
caregivers can change their method of interacting with persons with Alzheimer's
39


Disease to improve communication, if they are: 1) presented with information that
identifies the behavioral symptoms as a legitimate involuntary manifestation of the
disease, and 2) offered some basic guidelines on how to respond to the behaviors in
order to focus on the desired outcome rather than on the behavior.
This question was addressed through the administration of two questionnaires.
These two questionnaires were developed specifically to measure the differences in
responses before and after a presentation given in April 1999 to four groups of
persons who identified themselves as Caregivers of persons with Alzheimer's Disease
The presentations were titled, "Alzheimer's Disease Activities of daily living: dos,
don'ts and how-tos."
The data derived from these two questionnaires was sorted, coded and placed
on tables for comparison and analysis. This process used is called statistical
inference, drawing conclusions about a number of events on the observations of a
portion of them. The common use of statistical inference is to determine, in terms of
probability, whether observed differences between two samples signify that the
populations sampled are themselves really different. The object is to determine
whether observed differences are merely due to chance. For integrity of data in
research it is important that a method is selected that accurately interprets the results
of the data collected. The method for analyzing the data collected for this thesis
comes from techniques of inference which do not make stringent assumptions about
parameters and are thus called nonparametric techniques, they are also referred to as
"ranking tests" or "order tests". The result of the analysis of the matrix data shows
that four of the ten questions measured a significant difference in responses after the
presentation.
This indicates that the training was effective in changing the caregivers
understanding of how to approach a person with Alzheimer's Disease. The questions
that measured this significance were as follows:
40


Question 1:
When they make a mistake they should be corrected (for example, if they said they
havent eaten for days and they have just eaten they should be reminded that they just
ate and what they ate).
Question 3:
They need to be made aware of their mistakes (for example, remind them that they
just asked the same question in a conversation).
Question 5:
It is acceptable to ask them if they remember (for example, what did you do today,
what did you have for lunch today, do you remember who this is?).
Question 6:
They need to be reminded that they are being repetitive, (for example, I just told
you we are not going out today, how many times do I have to tell you we just had
lunch, you just called Jane and we cant call her again this soon.)
Summarizing the questions of significance as changed is as follows: pointing
out their mistakes, correcting them when they make a mistake, asking them to
remember and reminding them that they have forgotten.
On questionnaire one given prior to the presentation, questions seven and
eight were about understanding the disease and its symptoms. The responses to
question seven indicate that the respondents feel they understand the disease, all of
the time or most of the time. The participants' responses to question eight (see Table
1), identify the most common symptoms of the disease as forgetfulness, memory loss
and confusion.
There appears to be a correlation between the questions that showed
significance change and the listed symptoms. The thesis question suggests that if the
caregiver accepts the behavioral symptoms as legitimate involuntary manifestation of
the disease and is then offered guidelines on how to respond, they will be able to
focus on the desired outcome rather than the behavior. The presentation was given,
41


explaining the symptoms of the disease in detail and providing guidelines for each of
the scenarios as well as many other scenarios that are familiar to most caregivers.
Following this presentation the answers to the scenarios in questions 1, 3, 5, and 6
showed a statistically significant difference. This only proves a measurable
significant difference in the response to the questions. However, there is no scientific
measure that indicates the reason for that change in response. Further studies would
be required to prove that premise and thus actually determine the effectiveness of
training.
The sample size was very small and it appears to be worthwhile to conduct
additional studies to compare the results in a larger sample. There is a possibility that
some bias could have been introduced through the effort to be precise and exact in the
scenarios. Assuring that everyone clearly understands the scenario in the same
manner could offset this margin for error.
Because of the statistical projections of the magnitude of Alzheimer's Disease
in the next two decades, there is an obvious need for more effective caregivers. This
clearly warrants an urgency to develop accurate studies and tools to measure this
effectiveness of caregiver training. The ultimate goal is to develop effective training
programs that can be made available to many caregivers. This in turn is designed to
ease the caregiver burden as well as to provide better care for persons with
Alzheimer's Disease.
42


APPENDIX A
QUESTIONNAIRES AND HANDOUT
43


Questionnaire 1
1. Do you care for someone diagnosed with Alzheimers Disease (related dementia)?
Yes
________No (proceed to question 5)
2. Relationship to you:
_______Spouse
_______Parent
_______In Law
_______Grandparent
_______Aunt or Uncle
_______Brother or Sister
_______Child
_______Significant Other (family role/not related by blood /marriage)
_______Friend
_______Customer, Client, Patient, Resident
_______Other (please describe)____________________________________________
3. Which best describes their current living situation?
_______Alone in their home
_______With family in their home
_______With paid assistance in their home
_______Your home
_______With paid assistance in your home
j______With another member of the family
_______With a friend
_______Personal Care Home
_______Assisted Living
_______Health Care Facility (Nursing Home)
_______Other (please describe)____________________________________________
4. Do you consider yourself the primary caregiver of this person?
_______Yes
_______No
5. What is your role in relationship to a person/s with Alzheimers Disease?
_______Manage 24-hr care performed by someone else.
_______Manage the care performed by someone else a portion of the day.
_______Provide direct daily-care for the person 24-hrs per day.
_______Provide direct daily-care for a portion of the day.
_______Position in the field of Alzheimers Disease
___Direct care_____Management_______Volunteer
_______Student
_______No role at all, interested in the disease (proceed to question 7)
_______Other (please describe)____________________________________________
44


6. What is your estimation of the average number of hours per day you spend with and/or in
connection with a person with Alzheimers Disease (related dementia)?
0 1-4 ______5-8______9-12______13-15 16-23________24
7. Do you feel that you understand Alzheimers Disease (related dementia) Symptoms?
____Always_____Most of the Time_____Some of the Time______Rarely_____Never
8. List two of the symptoms that first come to mind when thinking of a person with Alzheimers
Disease (related dementia).
1.___________________________________________________
2.___________________________________________________
9. Do you feel that there is useful information available for caregivers of persons with
Alzheimers Disease?
____Always_____Most of the Time_____Some of the Time______Rarely_____Never
10. What are two of the resources that have been most helpful for dealing with a person with
Alzheimers?
1. _________________________________________________________
2. ________________________________________________________
11. Do you feel, or have you felt, frustrated (helpless, overwhelmed, angry) when dealing with a
person with Alzheimers Disease?
___Always______Most of the Time____Some of the Time______Rarely____Never
12. Do you have a resource available when you are feeling frustrated?
___Always______Most of the Time____Some of the Time______Rarely____Never
13. Based on your experience working with a person with Alzheimers please respond to the
following:
l>W*t
!§§§§
When they make a mistake they should be
corrected, (for example, if they said they
havent eaten for days and they have just
eaten they should be reminded that they ate
and what they ate )
They must nodep&md th$ R>r
everything we want them to
example, they must harry and eat and take a
shower and get ready heoanse hto# ah
appointment and we dont want to fee late
like we were last time because they didnt
lllllllllll llllmll ll^Pllfl f^nnill mini
Asm
Agree IXtsagree

45


Question
*'<
Agree DUaRirc
SUvngJj lJon'i
Disagree know
They need to be made aware of their
mistakes, (for example, remind them that
they just asked the same question in a
conversation with friends)
llicy need detailed explanations of what is
expected of ihem (for example, "when Mis
Ames comes to stay with you today you
need to help hot. dont get angry, don't ask
her the same questions over and oxer, and
be sure to eat Wc need her to be willing to
come back again oi 1 won't be able to go to
important appointments")
It is acceptable tD ask them if they
remember, (for example, what did you do
today, what did you haw for lunch today,
do you remember who this is?)
Iliey need to be reminded that they ai c
being repetitive, (for example," 1 j ust told
y on wc are not going out today, how many
times do 1 luve to tell you we just had
lunch, youjust called Jane and we can't call
hei again this soon ')
They must do what is proper; even if what
they prefer to do isnt harmful, (for
example, you cant wear your clothes to
bed, you cant wear two shirts at the same
time, you cant eat again youjust ate, you
cant keep walking back and forth, you need
to sit down.)
Constant demands must be made to keep
them fi om being an embarrassment (foi
example they must be told to pay attention,
stop making incorrect responses in
conversation, must tliey do wlial tliev are
asked to do, stop making inappropriate
remarks, not take things, that belong to
others)
Because they are confused they wont really
understand if you talk about them in their
presence, {for example, did you have any
problems with her today, be sure she takes
hei medicine she spit it out this morning, I
hope you dont have trouble today it took
me 20 minutes just to get him into the car, :
he has been looking for his mother all
morning)
46



Aftt* ******
*&**
Sftrengly
BlMgref
area
part of the disease, not a response ta what is
happening {for example, if they arc sotted
they mast take & shower even if it Jakes
cannot be allowed, they aw taking other
14 Would your answers to these questions have been different six-months ago?
Always Most of the Time________________Some of the Time_____Rarely----Ne
Thank you very much for completing this questionnaire.
Don't
iili
47


Questionnaire 2
1. Do you often feel that individuals give you advice about what to do with a person with
Alzheimers Disease, without understanding the real problem?
___Always______Most of the Time____Some of the Time______Rarely____Never
2. Do you wish persons would offer to take over and give you a few hours for free time rather
than so much advice?
___Always______Most of the Time____Some of the Time______Rarely Never
3. Based on your experience working with a person with Alzheimers please respond to the
following:
Question Stwmgly Agree Disagree Strongly Don't
AgW* Know
Because they are confused they wont really
understand if you talk about them in their
presence, (for example, did you have any
problems with her today, be sure she takes her
medicine she spit it out this morning, I hope
you dont have trouble today it took me 20
minutes just to get him into the car, he has
been looking for his mother all morning)
they need detailed ekplanuttoSsOfwhat &
expected of them, f &r example, Mts.
Jones comes to stay with you today you need
to help ha, don't get angry, dont ask her the
same questions over and ova, and he sure to
eat. Weneedhertobewilijng to come back
again orl won't be able to goto important
appointments)
It is acceptable to ask them if they remember.
(for example, what did you do today, what
did you have for lunch today, do you
remember who this is?)
When they make a mistake they should he
corrected (for example, if they $a?d they
havent eaten for days and they have just eaten
they should he reminded of what they ate,)
They must understand the reason for
everything we want them to do. (for example,
they must hurry and eat: and take a shower and
get ready because we have an appointment and
we dont want to be late like we were last time
because they didnt hurry.)
They need to be reminded dial they are being
repetitive; (for example,w i just told you we
are not going out today, ho^ many times do I .
have to tell yon we Just had lunch, you just,
called lane and we cant call her again this
iipiii! iiiiiipiiii iiiiiiii
48


QhPStldtt Strongly Apw SSSSStrongly Wt
Ag*** JJtsagree Know
Aggressiveness and Combativeness are a part
of the disease, not a response to what is
happening (for example, if they are soiled they
must take a shower even if it takes several
people to get them into the shower, they
understand exactly what they are doing and
they are just trying to get even and that cannot
be allowed, they are taking other peoples
things they know better and they should
apologize)
They must they prefer to do isn^baunfeh {tor example.
you stuff wear ymn efefheg to bed, ymtcgjft
wear two shirts at the same time, you. can't eat
again you just ate. you can't keep walking
back d forth, you need to 1 down,")
Constant demands must be made to keep them
from being an embarrassment, (for example,
they must be told to pay attention, stop
making incorrect responses in conversation,
insist they do what they are asked to do, stop
making inappropriate remarks, not take things
that belong to others)
They need to be made uware of their
mistakes.{for example, remind them that they
just naked the same tgnes&m in a conversation
:ij|^E||;|i|||^i|l!!!!!!!f|!!!^!ii!!i||!!!i^|!|!!|||i|i^^ lllMp|llt Kllpl g|||||||||| lll||lll
Will you please provide the following information about yourself?
4. Gender
____Female__________Male
5. Age
_ Under 20, _20-29, _30-39, _40-49, _50-59, _60-69, _70-79, _80-89_90 or above
6. Education Completed
____less than high school (G.E.D.),__High School,______Vocational/Technical,_____some college
____Associates Degree,_______Bachelors Degree_____Masters Degree,_____M.D., Ph.D., JD
____Other (please describe)______________
7. Socioeconomic Status (Annual Income for household)
____less than$20,000____$20,000-$39,999_____$40,000-$59,999_____$60,000-$79,999
____$80,000-599,999_____$100,000 or greater
8. Ethnicity
____Caucasian, _____African American _______Hispanic _____American Indian______Asian American
____Other (please describe)_________________
49


TEN ABSOLUTES
ABSOLUTELY NEVER!!!!!!!!
1. ARGUE instead AGREE
2. REASON instead DIVERT
3. SHAME instead DISTRACT
4. LECTURE instead REASSURE
5. SAY REMEMBER instead REMINISCE
6. SAY, I TOLD YOU instead REPEAT, REGROUP
7. SAY, YOU CANT instead DO WHAT THEY CAN
8. COMMAND/DEMAND instead ASK/MODEL
9. CONDESCEND instead ENCOURAGE/P RAISE
10. FORCE instead REINFORCE
Detailed Information, Speeches, Training Seminars, and soon a book published on these
Communication Tools. For more information contact Jo Huey, Director, Alzheimers Residential Care
Homes 504-539-9460. Huey 1996
50


TABLES
51


TABLE 1 Questionnaire 1
Respondent SYM PTOMS
001 Word Substitution in speech Perception Problems
002 Forgetfulness Lose ability to reason
003 Failure to reason; lack of reality
004 Lack of Sleep Diapers
005 Confusion Forgetfulness
006 Memory loss Aphasia
007 Forgetting Becoming lost
008 Forgetfulness Impatience
009
010 Loss of Memory Loss of integrated thinking
Oil Lack of Attention to details Forgetfulness
012 Confusion Forgetfulness
013 Short-term memory loss Neg. behav. To hygiene and eating
014 Memory loss Night wandering
015 Wandering Pacing
016 Loss of Memory Out of character behavior
017 Confusion Forgetful
018 Forgetfulness Disoriented
019 Memory loss and anger b/c of memory loss Staring into space
020 Forgetful Misplaced
021 Forget Sleep a lot
022
023 Forgetful
024 Forgetful Confusion
025 Forgetfulness Combative
026 Inability to function independently Loss of mental capacity
027 Dementia Mood swings
028 Memory loss Frustration
029 Forgetful Angry
030 Loss of memory Confusion
031 Short-term memory loss losing the ability to calculate, do complex problems
52


TABLE 1 (coi Questionnaire Vt)
032 Gradual cognitive loss Short-term memory impairment
033 Short term memory loss Dysfunction in daily living
034 Forgetfulness Incontinence
035 Forgetfulness; loss of short term memory Sleeplessness
036 Loss of memory Anxiety
037 Forgetfulness Wandering
038 Confusion; forgetfulness Blank stare
039 Communicating, Understanding Recall
040 Persistent inability to remember recent events Irritability
041 Short term memory loss Confusion
042 Memory loss Behavior problems
043 Forgetfulness Wandering
044 Repetitive questions Memory loss
045 Confusion Switching between times
046 Memory loss Confusion
047 Forgetfulness Anger : outbursts
048 No short term memory Careless of appearance
049 Memory loss Confusion
53


TABLE 2A
Question 1: When they make a mistake they should be corrected (for example, if they said
they havent eaten for days and they have just eaten they should be reminded of what they
ate.
Respondents Questionnaire 1 Score Questionnaire 2 Score Difference
006 5 5 0
007 5 5 0
013 5 5 0
015 1 5 4
016 4 5 1
018 5 5 0
023 2 4 2
028 2 5 3
031 4 5 1
038 5 5 0
040 2 Blank
041 4 5 1
045 2 5 3
025 1 2 1
049 4 4 0
048 5 4 -1
047 4 4 0
046 4 5 1
044 4 5 1
043 4 4 0
042 4 4 0
039 4 4 0
037 5 5 0
036 4 4 0
035 4 4 0
034 4 5 1
033 4 4 0
032 5 5 0
030 2 2 0
029 3 5 2
027 4 5 1
026 4 5 1
54


TABLE 2A (con't)
Respondents Questionnaire 1 Score Questionnaire Score Difference
024 Blank 5
022 1 5 4
021 2 4 2
020 1 4 3
019 1 5 4
017 4 5 1
014 4 5 1
012 3 5 2
Oil 1 5 4
010 2 5 3
008 4 4 0
001 2 4 2
002 4 4 0
003 4 4 0
004 5 5 0
005 4 5 1
009 4 4 0



















55


TEN ABSOLUTES
ABSOLUTELY NEVER!!!!!!!!
1. ARGUE instead AGREE
2. REASON instead DIVERT
3. SHAME instead DISTRACT
4. LECTURE instead REASSURE
5. SAY REMEMBER instead REMINISCE
6. SAY, I TOLD YOU instead REPEAT, REGROUP
7. SAY, YOU CANT instead DO WHAT THEY CAN
8. COMMAND/DEMAND instead ASK/MODEL
9. CONDESCEND instead ENCOURAGE/PRMSE
10. FORCE instead REINFORCE
Huev 1996
56


TABLE 2B (cont)
Respondents Questionnaire 1 Score Questionnaire 2 Score Difference
021 5 3 -2
022 5 5 0
024 5 5 0
026 4 4 0
027 4 4 0
029 3 2 -1
030 4 4 0
032 5 5 0
034 4 4 0
035 4 4 0
036 4 4 0
037 5 5 0
039 4 4 0
042 4 4 0
043 4 4 0
044 5 4 -1
025 4 2 -2
049 4 4 0
048 5 4 -1
047 4 4 0
046 5 4 -1










57


TABLE 2C
Question 3: They need to be made aware of their mistakes (for example, remind them that
they just asked the same question in a conversation with friends) .
Respondents Questionnaire 1 Score Questionnaire 2 Score Difference
006 5 5 0
007 5 5 0
013 5 5 0
018 5 5 0
023 4 4 0
028 Blank Blank Blank
038 5 5 0
004 5 5 0
003 4 4 0
002 4 4 0
001 5 5 0
008 4 4 0
010 5 5 0
017 4 5 1
019 5 5 0
021 4 4 0
029 Blank 5 Blank
032 5 5 0
033 4 4 0
037 5 5 0
039 4 4 0
042 4 4 0
043 4 4 0
049 4 4 0
048 5 4 -1
047 4 4 0
046 5 5 0
025 2 4 2
044 5 5 0
036 4 4 0
035 4 4 0
034 4 5 1
58


TABLE 2C (cont)
Respondents Questionnaire 1 Score Questionnaire 2 Score Difference
030 4 4 0
027 4 5 1
026 5 4 -1
024 4 5 1
022 4 5 1
020 Blank 4 0
014 4 5 1
012 5 5 0
Oil 2 4 2
005 4 5 1
045 4 5 1
041 5 4 -1
040 Blank 5 Blank
031 Blank 5 Blank
016 4 5 1
015 5 5 0
009 4 4 0

















59


TABLE 2D
Question 4: They need detailed explanations of what is expected of them (for example, when
Mrs. Jones comes to stay with you today you need to help her, dont get angry, dont ask her
the same questions over and over, and be sure to eat. We need her to be willing to come back
again or I wont be able to go to important appointments).
Respondents Questionnaire 1 Score Questionnaire 2 Score Difference
006 5 5 0
007 5 5 0
013 5 5 0
018 5 5 0
023 4 4 0
028 5 1 -4
038 4 5 1
004 5 5 0
003 4 4 0
002 5 4 0
001 5 5 0
008 4 4 0
010 5 5 0
017 4 5 1
019 5 5 0
021 Blank 4 Blank
029 3 4 1
032 5 5 0
033 4 4 0
037 5 5 0
039 4 4 0
042 4 4 0
043 4 2 -2
049 4 4 0
048 5 4 -1
047 4 4 0
046 5 4 -1
60


TABLE 2D (cont)
Respondents Questionnaire 1 Score Questionnaire 2 Score Difference
025 4 4 0
044 5 5 0
036 5 Blank Blank
035 2 4 2
034 2 5 3
030 5 5 0
027 4 4 0
026 4 4 0
024 1 3 2
022 5 5 0
020 2 4 2
014 5 5 0
012 5 5 0
Oil 4 1 -3
005 5 5 0
045 3 5 2
041 5 5 0
040 5 5 0
031 5 4 -1
016 4 5 1
015 5 5 0
009 4 4 0












61


TABLE 2E
Question 5: It is acceptable to ask them if they remember (for example, what did you do
today, what did you have for lunch today, do you remember who this is?).
Respondents Questionnaire 1 Score Questionnaire 2 Score Difference
006 4 5 1
007 2 5 3
013 4 5 1
018 5 5 0
023 2 4 2
028 5 5 0
038 3 5 2
004 5 5 0
003 4 4 0
002 4 4 0
001 2 4 2
008 4 4 0
010 2 5 3
017 1 5 4
019 2 5 3
021 2 2 0
029 Blank 5 Blank
032 4 5 1
033 4 4 0
037 4 5 1
039 2 2 0
042 4 4 0
043 2 2 0
049 4 4 0
048 2 4 2
047 4 4 0
046 4 5 1
025 1 5 4
044 3 3 0
036 5 2 -3
035 2 2 0
034 Blank 4 Blank
030 4 5 1
62


TABLE 2E (cont)
Respondents Questionnaire 1 Score Questionnaire 2 Score Difference
027 4 4 0
026 4 4 0
024 1 5 4
022 2 5 3
020 1 4 3
014 4 5 1
012 2 5 3
Oil 2 5 3
005 1 5 4
045 1 4 3
041 2 4 2
040 2 4 2
031 2 2 0
016 4 5 1
015 2 5 3
009 2 4 2




















63


TABLE 2F
Question 6: They need to be reminded that they are being repetitive, (for example, I just
told you we are not going out today, how many times do I have to tell you we just had lunch,
you just called Jane and we cant call her again this soon.)
Respondents Questionnaire 1 Score Questionnaire 2 Score Difference
006 5 5 0
007 5 5 0
013 5 5 0
018 5 5 0
023 1 4 3
028 5 4 -1
038 5 5 0
004 5 5 0
003 4 4 0
002 5 4 -1
001 5 5 0
008 2 4 2
010 5 5 0
017 Blank 5 Blank
019 5 5 0
021 4 4 0
029 3 5 2
032 5 5 0
033 4 4 0
037 5 5 0
039 4 4 0
042 4 4 0
043 4 4 0
049 4 4 0
048 5 4 -1
047 4 4 0
046 5 5 0
025 4 4 0
044 5 5 0
64


TABLE 2F (cont)
Respondents Questionnaire 1 Score Questionnaire 2 Score Difference
36 5 4 -1
35 4 4 0
034 4 5 1
030 5 5 0
027 5 5 0
026 5 5 0
024 5 5 0
022 2 5 3
020 2 4 2
014 5 5 0
012 5 5 0
Oil 4 4 0
005 5 5 0
045 5 5 0
041 4 5 1
040 5 4 -1
031 5 5 0
016 4 4 0
015 5 5 0
009 4 4 0


















65


TABLE 2G
Question 7: They must do what is proper, even if what they prefer to do isnt harmful (for
example, you cant wear your clothes to bed, you cant wear two shirts at the same time, you
cant eat again you just ate, you cant keep walking back and forth, you need to sit down.).
Respondents Questionnaire 1 Score Questionnaire 2 Score Difference
006 5 5 0
007 5 5 0
013 4 4 0
018 5 5 0
023 4 4 0
028 5 Blank Blank
038 5 5 0
004 5 5 0
003 2 2 0
002 4 4 0
001 5 5 0
008 4 4 0
010 4 5 1
017 Blank 5 Blank
019 5 5 0
021 4 2 -2
029 Blank 5 Blank
032 4 5 1
033 4 4 0
037 5 5 0
039 4 4 0
042 4 4 0
043 4 4 0
049 4 4 0
048 5 4 -1
047 4 4 0
046 4 4 0
025 2 4 2
044 5 5 0
66


TABLE 2G (cont)
Respondents Questionnaire 1 Score Questionnaire 2 Score Difference
036 5 4 -1
035 2 4 2
034 Blank 5 Blank
030 4 4 0
027 5 5 0
026 5 4 -1
024 Blank 5 Blank
022 1 5 4
020 4 4 0
014 5 5 0
012 5 5 0
Oil 3 4 1
005 5 4 -1
045 5 5 0
041 4 5 1
040 4 4 0
031 4 5 1
016 4 5 1
015 5 5 0
009 4 5 1
















67


TABLE 2H
Question 8: Constant demands must be made to keep them from being an embarrassment (for
example, they must be told to pay attention, stop making incorrect responses in conversation,
insist they do what they are asked to do, stop making inappropriate remarks, not take things
that belong to others).
Respondents Questionnaire 1 Score Questionnaire 2 Score Difference
006 5 5 0
007 5 5 0
013 5 5 0
018 5 5 0
023 4 4 0
028 5 Blank Blank
038 5 5 0
004 5 5 0
003 4 4 0
002 4 4 0
001 5 5 0
008 4 4 0
010 5 5 0
017 Blank 5 Blank
019 5 5 0
021 4 4 0
029 3 5 2
032 5 5 0
033 4 4 0
037 5 5 0
039 4 4 0
042 4 4 0
043 4 4 0
049 4 4 0
048 5 4 -1
047 4 4 0
046 5 4 -1
025 4 4 0
044 5 5 0
68


TABLE 2H (cont)
Respondents Questionnaire 1 Score Questionnaire 2 Score Difference
036 5 4
035 4 4 0
034 Blank 4 Blank
030 4 4 0
027 5 5 0
026 4 4 0
024 Blank 5 Blank
022 2 5 3
020 5 4 -1
014 5 5 0
012 5 5 0
Oil 4 4 0
005 5 5 0
045 5 5 0
041 4 5 1
040 5 4 -1
031 5 5 0
016 5 5 0
015 5 5 0
009 4 5 1















69


TABLE 21
Question 9: Because they are confused they wont really understand if you talk about them in
their presence (for example, did you have any problems with her today, be sure she takes her
medicine she spit it out this morning, I hope you dont have trouble today it took me 20
minutes just to get him into the car, he has been looking for his mother all morning).
Respondents Questionnaire 1 Score Questionnaire 2 Score Difference
006 5 5 0
007 5 5 0
013 4 5 1
018 5 5 0
023 4 1 -3
028 5 5 0
038 5 5 0
004 5 5 0
003 5 4 -1
002 4 4 0
001 5 5 0
008 4 4 0
010 5 5 0
017 Blank 5 Blank
019 5 5 0
021 4 4 0
029 Blank 5 Blank
032 5 5 0
033 4 5 1
037 5 5 0
039 5 5 0
042 4 4 0
043 4 2 -2
049 4 4 0
048 4 4 0
047 4 4 0
046 5 4 -1
025 4 5 1
70


TABLE 21 (cont)
Respondents Questionnaire 1 Score Questionnaire 2 Score Difference
044 5 5 0
036 5 4 -1
035 4 4 0
034 4 5 1
030 5 5 0
027 5 4 -1
026 3 5 2
024 Blank 4 Blank
022 5 5 0
020 5 5 0
014 5 5 0
012 5 5 0
Oil 5 4 -1
005 5 1 -4
045 5 5 0
041 5 5 0
040 4 4 0
031 4 5 1
016 5 5 0
015 5 5 0
009 5 4 -1















71


TABLE 2J
Question 10: Aggressiveness and Combativeness are a part of the disease, not a response to
what is happening (for example, if they are soiled they must take a shower even if it takes
several people to get them into the shower, they understand exactly what they are doing and
they are just trying to get even and that cannot be allowed, they are taking other people things
they know better and they should apologize.)
Respondents Questionnaire 1 Score Questionnaire 2 Score Difference
006 5 5 0
007 5 5 0
013 4 4 0
018 5 5 0
023 4 4 0
028 5 Blank Blank
038 5 5 0
004 5 5 0
003 5 4 -1
002 4 4 0
001 5 5 0
008 4 4 0
010 2 2 0
017 Blank 5 Blank
019 4 5 1
021 2 2 0
029 5 4 -1
032 4 4 0
033 4 4 0
037 5 5 0
039 5 4 -1
042 4 4 0
043 4 2 -2
049 4 4 0
048 4 4 0
047 4 4 0
046 5 4 -1
72


TABLE 2J (cont)
Respondents Questionnaire 1 Score Questionnaire 2 Score Difference
025 Blank 5 Blank
044 5 5 0
036 5 4 -1
035 4 4 0
034 4 4 0
030 4 4 0
027 5 5 0
026 3 4 1
024 Blank 5 Blank
022 5 5 0
020 5 4 -1
014 5 5 0
012 5 5 0
Oil 5 2 -3
005 5 5 0
045 5 5 0
041 4 5 1
040 5 5 0
031 1 5 4
016 2 5 3
015 5 5 0
009 1 5 4














73


References
Aarsland, D., Cummings, J.L., Yenner, G., Miller, B. (1996). Relationship of
aggressive behavior to other neuropsychiatric symptoms in patients with Alzheimers
disease. American Journal of Psychiatry. 153. (2), 243-247.
Administration on Aging (1999). Alzheimer's Disease: administration on
aging fact sheet. Washington, D C.
Alzheimers Association (1990). Guide to home safety for caregivers of
persons with Alzheimers disease. Chicago.
Alzheimers Association. (1992, December). Gallup Poll. Chicago.
Alzheimers Association. (1998, March). 1998 National public policy
program to conquer Alzheimers disease. Washington, DC.
American Psychiatric Association. (1994). Diagnostic and statistical manual
of mental disorders (4th. Ed.). Washington, DC: Author.
Burns, A., Howard, R., & Pettit, W. (1995). Alzheimers disease a medical
companion. Cambridge, MA: Blackwell Science.
Calkins, Margaret P. (1988). Design for dementia: planning environments for
the elderly and the confused. Ohio, Cleveland: IDEAS.
Cantillon, M. De La Puente, A.M., Palmer, B.W. (1998). Psychosis in
Alzheimers disease. Semin Clin Neuropsychiatry. 3. (1). 34-40.
Cape, R.D., McKay, D. (1986). Special facilities for patients with
Alzheimers disease. CMAJ. 135. (5), 434-435.
Choen-Mansfield, J. (1986). Agitated behaviors in the elderly. II.
Preliminary results in the cognitively deteriorated. American geriatric Society, 34.
722-727.
Cory-Bloom, J. & Galasko, D. (1995). Adjunctive therapy in patients with
Alzheimers Disease. A practical approach. Drugs Aging, 7. (2), 79-87.
74


Drevets, W.C., Rubin. E.H., (1989), Psychotic symptoms and the longitudinal
course of senile dementia of the Alzheimers Type, Biological Psychiatry, 39-48.
Ernst, R.L. & Hay, J.W. (1994,August). The US economic and social costs of
Alzheimers disease revisited. American Journal of Public Health. 84 (8). 1262-1264.
Evans, D A. (1990). Estimated prevalence of Alzheimers disease in the
United States. Milbank Quarterly, 68 (2), 267-289.
Farran, C.J. & Kene-Hagerty, Eleanora. (1989) Twelve steps for caregivers.
The American Journal of Alzheimer's Care and Related Disorders & Research.
Nov/Dec.
Feinberg, M.V., & Michocki, R.J. (1998). Clinical and regulatory concerns in
Alzheimers disease management: role of the pharmacist. American Journal Health
Systems Pharmacist. 55. (Suppl 2), S26-31.
Gauthier, S. Gelinas, I, Gauthier, L. (1997). Functional disability in
Alzheimers disease. International Psychogeriatrics. 9. fSuppl. 1), 163-165.
Graham, E., (1998, November 16). A daughters odyssey, a home for dad.
The Wall Street Journal, pp. Bl, B8.
Hepburn, K. Petrie, M, Peterson, C, & VanLoy, W. (1995). A moving
experience: reconfiguring a special care unit for Alzheimers patients. Gerontologist.
35, 831-835.
Lesser, I.M., Miller, B.L., Boone K.B., Hi 11-Gutierrez, E., Mena IL, (1989).
Psychosis as the first manifestation of degenerative dementia. Bulletin of Clinical
Neuroscience. 54. 59-63.
Mace, N.L., & Rabins,P.V., (1981). The 36-Hour Day. Baltimore: Warner
Books.
Mega, M.S., Cummings, J.L., Fiorello, T & Gombein, J. (1996). The
spectrum of behavioral changes in Alzheimers Disease. Neurology, 46. 130-135.
National Alliance for Caregiving and the Alzheimer's Association (1999).
Who Cares? Families caring for Persons with Alzheimer's Disease. Bethesda, MD,
Washington, DC.
75


National Alliance for Caregiving and the American Association of Retired
Persons (1997). Family caregiving in the U.S. findings from a National Survey.
Bethesda, MD, Washington, DC.
National Institute on Aging & National Institutes of Health (1997). Progress
report on Alzheimers disease. Silver Springs, Md.
Ott, R.R., Tate, C.A., Gordon, N.M., & Heindel, W.C. (1996). Gender
differences in the behavioral manifestations of Alzheimers Disease. Journal of the
American Geriatric Society. 44. (5), 583-587.
Petry, S., Cummings, J.L., Hill, M.A., Shapira, J. (1988). Personality
alterations in dementia of the Alzheimer type. Arch Neurology, 45. 1187-1190.
Random House Webster's college dictionary. (1991). New York: McGraw-
Hill Edition.
Raskind, M.A. (1998). Psychopharmacology of noncognitive abnormal
behaviors in Alzheimers disease. Journal of Clinical Psychiatry, 59. (Suppl 9), 28-
32.
Reisberg, Barry. 09811. A Guide to Alzheimers Disease, for families,
spouses and friends. New York: First Free Press.
Robinson, A, Spencer, B., & White, L. (1991). Understanding Difficult
Behaviors. (2nd. ed.). Ypsilanti, MI.: Eastern Michigan University.
Romano, Michael, (1994, April), Unshackling the elderly, Contemporary
Long Term Care. 36-42.
Rubin, E.H., Knscherf, D.A. (1989). Psychopathology of very mild dementia
of the Alzheimers type. American Journal Psychiatry. 146. 1017-1021,
Siegel, S. (1956). Nonparametric statistics for the behavioral sciences. New
York:McGraw-Hill.
Snowden, d., Kemper, S.J. Mortimer, J.A., Grenier, L.H., Weekstein, D.R. &
Markesbery, W.R. (1996, February) Linguistic ability in early life and cognitive
function and Alzheimers disease in late life. JAMA. 528-532.
Stewart, J.T., (1995). Management of behavior problems in the demented
patient. American Family Physician. 52. (8), 2311-2317.
76


United States Congress. Office of Technology Assessment. (1987). Losing a
million minds: confronting the trudge of Alzheimers disease and other dementias.
U S. Government Printing Office.
77