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Primary Caregivers
Report of First Awareness
of an alteration of Behavior

of an elderly Faflfid§embgzmgizggosed with

DEBORAH OEGEMA

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PRIMARY CAREGIVERS
REPORT OF FIRST AWARENESS
OF AN ALTERATION IN BEHAVIOR
OF AN ELDERLY FAMILY MEMBER
DIAGNOSED WITH DEMENTIA

By
Deborah Oegema

A THESIS

Submitted to
Michigan State University
in partial fulfillment of the requirements
for the degree

MASTER OF SCIENCE IN NURSING

College of Nursing

1 997

ABSTRACT

PRIMARY CAREGIVERS
REPORT OF FIRST AWARENESS OF
AN ALTERATION IN BEHAVIOR OF AN
ELDERLY FAMILY MEMBER DIAGNOSED
WITH DEMENTIA

By

Deborah Oegema

With the increasing number of elderly, dementia is an expanding problem.
The most frequent cause of dementia is Alzheimer's Disease (AD). There is little
documentation about the beginning symptoms of this disease. Using secondary
analysis this study examines the first symptoms or awareness of AD as noted by
family caregivers of those who were diagnosed with AD. Two themes were
identified in the study: memory/cognitive changes, and personality changes.
Caregivers noted one to three first awareness symptoms. The Advanced
Practice Nurse can use this information to increase understanding of the disease

and it's manifestations. The study also suggests direction for future research.

ACKNOWLEDGMENTS

I would like to thank the members of my thesis committee, Dr. Sharon
King, Patricia Peek R.N., MS, and Brigid Warren R.N., M.S.N. for all the time
and assistance they spent with me on this thesis. With a special thanks to Dr.
King for the additional encouragement during the preparation of this thesis.

I would also like to thank my mother and father for their love and

encouragement though the entire educational process of going back to college.

TABLE OF CONTENTS

LIST OF TABLES ................................................................................ vii
LIST OF FIGURES ............................................................................... vii
INTRODUCTION .................................................................................. 1
BACKGROUND OF THE PROBLEM ................................................... 2
IMPORTANCE OF THIS STUDY ......................................................... 5
PURPOSE OF THIS STUDY ................................................................ 5
SCOPE OF THIS STUDY ..................................................................... 5
CONCEPTUAL FRAMEWORK ............................................................ 6
OVERVIEW ................................................................................... 6
ELDERLY ...................................................................................... 6
DEMENTIA .................................................................................... 6
CAREGIVER ................................................................................. 7
CONTINUITY THEORY: A CONCEPTUAL FRAMEWORK ......... 7
RATIONALE FOR USE OF THE CONTINUITY THEORY WITH
THIS STUDY ................................................................................. 12
IMPLICATIONS FOR ADVANCED PRACTICE NURSES ............. 12
REVIEW OF LITERATURE .................................................................. 13
RESEARCH AND ALZHEIMER’S DISEASE ................................. 13
ALZHEIMER’S DISEASE AND CONTINUITY THEORY ............... 13
CRITIQUE OF LITERATURE ........................................................ 13
METHODOLOGY AND PROCEDURES .............................................. 14
QUALITATIVE RESEARCH ASSUMPTIONS ............................... 14
PRIMARY RESEARCH PROJECT ................................................ 15
PRIMARY SAMPLE ....................................................................... 15
PROTECTION OF THE SUBJECTS ............................................. 15
DATA COLLECTION ..................................................................... 16
ANALYSIS ..................................................................................... 16
RELIABILITY AND VALIDITY ........................................................ 17

iv

SECONDARY RESEARCH SAMPLE ...........................................
SECONDARY DATA ANALYSIS ...................................................
VALIDITY AND RELIABILITY ........................................................
METHODOLOGICAL LIMITATIONS OF QUALITATIVE

RESEARCH ...................................................................................

PRESENTATION OF DATA AND ANALYSIS ......................................
SUBJECTS ....................................................................................
FINDINGS .....................................................................................
THEMES .......................................................................................
MEMORY/COGNITIVE CHANGES ..............................................
PERSONALITY CHANGES ...........................................................

DISCUSSION AND IMPLICATIONS ....................................................
CRITIQUE OF CONTINUITY THEORY AS A FRAMEWORK ......
LIMITATIONS AND STRENGTHS OF THE STUDY .....................
IMPLICATIONS FOR NURSING PRACTICE, EDUCATION, AND
RESEARCH ...................................................................................
SUMMARY ....................................................................................

APPENDICES
APPENDIX A: UCRIHS APPROVAL FOR ORIGINAL STUDY
APPENDIX B: UCRIHS APPROVAL FOR SECONDARY STUDY
APPENDIX C: INTERVIEW GUIDE
APPENDIX D: CODING CATEGORIES

LIST OF REFERENCES ......................................................................

17
17
18

18

19
19
20
22
23
24

26
26
27
28
30
32
33
38

41

LIST OF TABLES

Table 1: Description of Subjects ........................................................

Table 2: Categories of Identified Symptoms ......................................

vi

21

22

y;

LIST OF FIGURES

Figure 1: Relationship of Variables in the Continuity Theory .............

Figure 2: Relationship of Variables of Continuity Theory In the
presence of Alzheimer’s Disease. A theorized adaptation ..................

vii

10

11

INTRODUCTION

In this decade we have seen a steady increase in the number of elderly in
the United States and the aging population itself is getting older (A.A.R.P., 1991).
A corresponding increase is seen in the problems and illnesses associated with
this age group. Dementia is one of the increasing problems related to aging.

New cases of dementia are reported to occur as frequently as heart attacks and
more frequently than strokes (Katzman, 1986). Dementia is also noted to be
highest in the elderly, making it a markedly age-related disorder (Katzman,
1986). Dementia is caused by many disorders but 50 to 60% of dementia
patients suffer from (AD) Alzheimer's Disease (Katzman, 1986).

As the population of those over 65 rises so will the problems associated
with AD, along with the cost of taking care of those with this disease. In 1987 the
65 plus age group was only 12% of the population but the health care
expenditures for this group were 36% of total health care costs (A.A.R.P., 1991).
With the expanding numbers of elderly suffering from AD there is an increase in
financial, physical, and emotional stress on the family. This also increases the
costs for the health care system which is already struggling to cope with the
increasing number of elderly. Early diagnosis of AD will allow for an
improvement in the planning and management of care. This decreases the
stress on the family and health care system.

This study investigates: The report of first aware of an alteration in

behavior of an elderly family member diagnosed with dementia as noted by the

f .

primary caregiver. This was accomplished by secondary analysis of interviews
with a sample of family caregivers taking care of relatives with AD.
BACKGROUND OF PROBLEM

Alzheimer's Disease (AD) is a degenerative, progressive disease that
attacks the brain and results in impaired memory, thinking and behavior (US.
Health and Human Services, 1995). It affects over four million adults in America
and is the most common form of dementing illness (US. Department of Health
and Human Services, 1995). The disease was first described by Alois Alzheimer
in 1907, who found during an autopsy, changes in brain tissue called neuritic
plaques and neurofibrillary tangles. These have become the hallmarks of AD.
Unfortunately these hallmarks are only noted by brain biopsy. There are no
social or economic groups that are not affected by AD. AD is difficult to
diagnose because only symptoms and behavioral changes are used to make a
diagnosis. Although AD can strike in the 40's, most people who develop the
disease are over 65 (Chipps & Victor, 1992). It begins slowly with forgetfulness,
and impairment in judgment. Other symptoms may include problems handling
routine tasks, lack of spontaneity, lack of initiative, disorientation of time and
place, depression and terror (Severience,1994).

During the second stage, the AD patient develops an increase in
disorientation and forgetfulness. The patient may start to wander or become
agitated and restless, muscle twitching or seizures may develop, repetitive
actions can start and the AD patient has an increased difficulty with abstract
thinking (Severienoe, 1994).

During the final stage the AD patient becomes disorientated and
completely dependent. They are unable to recognize themselves and may have
various forms of severe speech impairment. The AD patient becomes

emaciated, looses control of body functions and wants to touch everything in

sight (Severience, 1994). These stages can overlap and vary from person to
person. AD is a devastating disease for the family, caregiver and patient.

Over 100,000 people die of AD annually (Katzman, 1986). The span of
AD is so different from person to person that after the onset of memory loss the
patient may live from two to 20 years (Gwyther, 1985). Early detection of those
with AD is needed, especially for those with a high risk for developing the
disease, such as individuals with a family history of AD (Azari, Pettigrew,
Schapiro, Haxby, Grady, Pietrini, Salerno, Heston, Rapoport, & HonNitz, 1993).
The earlier the diagnosis is made, the higher the quality of life may be for the
family and the patient who have an increased opportunity for planning. Not only
is the AD patient affected by the disease but the family may be considered
“hidden victims" (Given, Collins, & Given, 1988). It is the family who has to deal
with the patients loss of cognitive and mental capacities and alteration in
judgment (Given, Collins,& Given 1988).

There is no specific test for AD except on autopsy so it is difficult to
diagnose. In order to identify AD, other problems that might cause the same
symptoms must be ruled out. Depression, drug reactions, nutritional
deficiencies, stroke, head injury, and metabolic changes could mimic the
symptoms of AD (Alzheimer's Association, 1995).

It is usually the family that brings the family member to the health care
provider for a check-up (Gwyther, 1985). Multiple and different symptoms vary,
most symptoms seen in AD are the direct result of brain damage (Gwyther,
1985). A typical example of a first time office visit: A daughter brought her
mother to her health care provider for a check-up. The patient states she came
in because her daughter was "nagging me". The daughter states mother is

"failing", she is not the same person, she forgets simple things, gets angry easy

(Gwyther, 1985). In this patient's history, the patient has no history of depression
or alcoholism. The daughter noticed her mother was getting sloppy, had no
interest in her hobbies, couldn't balance her checkbook, was suspicious, slept
more, would get lost in a store and couldn't follow a recipe, thought Roosevelt
was the president, did not remember the year she was born, she had

no idea what pills she was taking or what they were for (Gwyther, 1985). This
was the patient's first trip to the office because she was "failing", but according to
Severience (1994) she is developing the symptoms of the second stage in AD as
evidenced, by her disorientation, forgetfulness, anger and getting lost.

Each person with suspected AD needs a complete work-up, complete
health history, physical exam, neurological and mental assessments, diagnostic
tests, possible CT and EEG, and psychiatric assessments. Many cities have an
Alzheimer's screening clinic available that will include a thorough evaluation so
that a diagnosis can be made (Alzheimer's Association, 1995).

Even though there is no cure for AD, a good plan of care and
understanding of the disease may ease the burden on the family and patient. An
optimum level of health maintenance can be maintained with proper
medications, diet, daily routines, physical activity and social activities. Tacrine, a
prescription drug may slow the development of AD and sometimes tranquilizers
and antidepressants can improve mood, decrease anxiety and control outbursts
(Alzheimer's, 1995). Knowledge of developing AD allows family members to
make plans for how to best cope with changes that occur as a result of the
disease.

As AD progresses the patient will need 24 hour care and supervision,
causing both financial and physical stress to the caregivers and their families
(Given, Collins, & Given 1988). The caregiver can develop chronic fatigue,

depression, anger or health problems of their own (Given, Collins, & Given,

1988). For these reasons it is extremely important for early detection to occur so
that a long-term plan of care can begin for the benefit of both the patient and
their family.
IMPORTANCE OF THIS STUDY

With early intervention and diagnosis the goal is to retard deterioration
allowing for a slower progression and a longer period of stability (Gelbart &
Schwarz, 1981). This will allow for reduction of stress, both financial and
physical, to the caregiver, patient and the health care system. It has also been
noted that up to 20% of dementia are reversible (Gelbart & Schwarz, 1981).
Entrance into the health-care system is essential to the diagnosis of AD and to
the treatment of reversible dementias. People have a tendency not to
acknowledge that there is a problem, making first awareness of a patient's
symptoms a key to diagnosis. If the symptoms associated with first awareness
can be isolated, then the APN can educate the public so that early
diagnosis and treatment can be started. This allows the families an increase in
time to adjust and plan.

PURPOSE OF THIS STUDY

The purpose of this study is to examine the reports of first awareness of a
alteration in behavior of a elderly family member by the primary caregiver of an
individual diagnosed with AD. Early first awareness of symptoms will be
examined and categorized to create a clearer focus of what was first noted by
the caregiver. This will create an expanded knowledge base for the APN.

SCOPE OF THE STUDY

This is a secondary data analysis from a qualitative study of family

caregivers of AD patients (King, 1989). Subjects were a non-random group of 34

caregivers who provided care to a family member with AD. They were a

convenience sample that was contacted through the Alzheimer's Association,
health agencies in southwest Michigan, and Adult Daycare Centers.

This analysis will be limited to those open-ended interview questions that
deal with when the caregiver noted first awareness of a problem. The change in
behavior or discontinuity that was noted by the caregiver will be based on the
conceptual framework. The Continuity Theory of aging will be used as a
framework to help identify and examine the caregivers awareness of change.

CONCEPTUAL FRAMEWORK
Overview

Concepts used for this study are defined in the following section.
Following are a description of the elderly, dementia, caregiver, the Continuity
Theory, rationale for the use of the Continuity theory, the relationship of the
study question to the continuity theory, and implications for the APN.

@16le

Atchley (1983) describes an older person as "an individual in the later
maturity or old age stages of life cycle. Socially, people are usually classified as
old when they are chronologically sixty-five or older" (p.294). Sixty-five also
defines eligibility for medicare benefits, retirement, and is commonly used in
research to describe the elderly (Tsuji, Minami, Keyl, Hisamichi, Asano, Sato, &
Shinoda, 1994). Therefore, for the purpose of this study "elderly family
member" will be a related person who is chronologically age sixty-five or older.
Dementia

Dementia is a syndrome characterized by intellectual deterioration of an
adult that changes or interferes with social or occupational performance
(Katzman, 1986). AD accounts for 50 to 60 percent of the dementia patients
(Katzman, 1986).

7

The Alzheimer's Association describes AD as a medical condition that
disrupts the way the brain works involving thought, memory and language
(1995). For the purpose of this study, AD will be described as a progressive
neuropsychiatric disease affecting brain matter and is characterized by the loss
of cognitive function as well as affective and behavioral disturbances (Butler,

1 990).
Caregiver

Webster's dictionary (1988) defines to take care of as "to have charge of
or be responsible for: to look after; attend to; to provide for; protect against
trouble, want" (p.212). For the purpose of this study, this definition will be used
but the caregiver will be the self-acknowledged family caregiver who is
responsible for care and/or supervision of the AD patient. The majority of care
for the AD patient is provided by the spouses and by the adult children of the
patient (Given, Collins, & Given, 1988).
may Theory: A Concemgl Framework

The Continuity Theory was developed in the late 1960's and 1970‘s
(Vander Zyl, 1979). It holds that in the process of developing into an adult, a
person develops individual habits, preferences, and dispositions that become
part of their personality (Vander Zyl, 1979). These dispositions continue and are
maintained into old age. Continuity Theory is a psychosocial theory and infers
that personality type will remain consistent as persons grow older and their
behaviors and habits will be consistent throughout their life span (Burbank,
1986)

"Continuity Theory assumes evolution, not homeostasis, and this
assumption allows change to be integrated into one's prior history without
necessary causing upheaval or disequilibrium" (Atchley, 1989, p. 183). The

Continuity Theory helps to explain how adults use concepts from the past to

structure how they will respond to changes in the future that occur in the normal
aging process (Atchley, 1989). Normal aging refers to an aging pattern common
to all people that does not include physical or mental disease (Atchley, 1989).

The Continuity Theory is described in terms of both internal and external
structures. Internal structure requires memory and deals with experiences,
preferences, dispositions, a psychic structure of ideas (Atchley 1989).

The internal continuity is instrumental in decision making, ego integrity, self-
esteem, and is used to meet the important needs of social interaction and social
support (Atchley, 1989).

The external structure determines behavior. People have an expectation
of how a person will react that is a result of how they reacted in past roles
(Atchley, 1989). External continuity is determining of predictable social support,
self-concept, coping with the aging process, and decreases the ambiguity of
personal goals that come with changes such as retirement (Atchley 1989).

The Continuity Theory consists of four major concepts: age, role activity,
personality type, and life satisfaction. Age is defined as the chronological age of
the person. Role activity will be different for each person but many experience
common basic roles in their lives: spouse, parent, grandparent, worker,
homemaker, citizen, neighbor, group member, church member (Neugarten,
Havighurst, & Tobin, 1968).

The third concept is personality. Personality, depending on the author or
measuring tool, is categorized differently by various researchers and is
multidimensional. The basic assumption in this concept is that one's personality
does not usually change as one gets older. Personality influences role activity
and maintaining relationships with others. Personality type by definition is "the
extent to which the individual is able to integrate emotional and rational elements

of the personality" (Burbank, 1986).

The fourth concept in the Continuity Theory is life satisfaction which has
been operationalized in terms of psychological well-being. Depending on the
researchers the measures are different for different studies. Neugarten,
Havighurst, and Tobin (1968), indicated that life satisfaction reflects how one
feels about one's life; was it meaningful?, did one achieve their life goals?, do
they have a positive self-image?, are their maintaining a happy and optimistic
attitudes and moods. Bearon (1989) indicated that there was a relationship
between achievement and aspirations and situation factors. These concepts
interrelate with each other to form the theory of continuity.

Normal continuity is seen in Figure 1. Age, personality, and role activity
all affect life satisfaction. Life satisfaction is a subjective perception and is linked
to each persons personal history.

"Discontinuity involves change seen by the individual as sharply
diminishing her or his capacity for coherence in some aspect of his or her
identity" (Atchley, 1989, p.187). Discontinuity alters identity, so that the person
has no standard to assess life's integrity creating internal discontinuity (Atchley,
1989). This can lead to depression, anxiety, lack of hope and can be seen in
people with dementia or illness with serious outcomes (Atchley, 1989).

Discontinuity is seen in Figure 2. As one gets older the incidence of
dementia increases. Dementia will alter the personality type changing the
patient’s continuity. The patient no longer can remember previously established
patterns in relationship with their social environment for decision making and

how to act.

10

Age Personality Type Role Activity

 

Life Satisfaction

 

Figure 1 Relationship of Variables in the Continuity Theory. Adapted from
Neugarten, Havighurst, 8. Tobin, (1968)

11

Age Increases

Dementia Increases

 

Discontinuity
Role L \ Personality
Altered \ 7 Altered
\ /
\ /

Life Satisfaction
Decreased

 

Figure 2 Relationship of Variables of Continuity Theory in the Presence of

Alzheimer’s Disease. A theorized adaptation. Neugarten, Havighurst, 8: Tobin,
(1968)

12

Changes in personality will affects the patient's roles and increase
discontinuity. The patient may have changes in or alteration of his role function.
A sense of predictability is present with normal role activity and is often a major
goal with older people (Atchley, 1989). A loss of continuity affects life
satisfaction.

R_ationaJe For Use Of The Continuity Theorv With This Strgy

The purpose of this study was to look at first awareness of behavior
changes as noted by the family caregiver of a patient with AD. Therefore, an
internal or external discontinuity occurred indicating something was wrong as
Atchley (1989) noted was seen in those with dementia.
muons for Advances Practice Ngrses

The APN needs to be knowledgeable in all aspects of care of the AD
patient as well as the financial, physical, and mental stress to the patient and
caregiver. The additional knowledge obtained from this study will assist in earlier
detection of AD. Emphasis needs to be based on early detection and getting the
patient into the health care system. Prevention of health and psychosocial
problems needs to be stressed for the patient and all of the family members in
addition to the treatment of pathology (Vander Zyl 1979). Using the Continuity
Theory as a basis for understanding the aging process the public and health care
system can reject stereotyping the elderly and look at each person with
their needs and preferences, lifestyles and personalities when assessing and

planning (Vander Zyl 1979).

 

13

The APN working in a primary care setting has the unique opportunity of
directly working with the caregiver, family and patient. The APN can enhance
the AD patient and families lifestyle with increased understanding of the disease

process.

REVIEW OF LITERATURE

Reseagh aanAlzheimer's Disease

The research on AD has many different focuses but this researcher could
not find any research based studies that dealt with early detection of AD.
Current available studies focus on genetics, changes in brain chemistry, impact
on memory, language abnormalities, degenerating nerve cells, and ways to
improve the quality of life for the AD patient (Alzheimer's Association, 1989).
Al_zheimer's Disease and Continuity Theory

This researcher could not find any studies on AD and the Continuity
Theory. The theory itself is alluded to in AD by the family noting a change or
discontinuity in behavior, memory, personality, orjudgment capabilities (Gwyther,
1985). The family is unknowingly using the Continuity Theory by noting a non-
typical reaction or response to the stimuli that the AD patient would normally
give. Atchley (1989) indicated that a person with dementia would not have
access to continuity strategies to deal with changes and adapt to new situations
since they have impaired memory which would alter their internal continuity but
no studies are available.
Critigge of Literature

The majority of the literature falls into four categories: studies being
conducted on the cause of the disease, definition of the disease, care of patient,
and the caregiver. The Alzheimer's Association has a large and very informative

set of publications about the disease and it's symptoms. They are also funding a

 

14

large variety of research studies related to Alzheimer's disease. Many books are
available on strategies for the care of the Alzheimer's patient both at home and
in the nursing home with different strategies related to stages of the disease
process. Little exists, however, to aid in understanding how the disease is
identified during it's early stages.

Many articles are available on the diagnosis of the disease and what
tests to do to assist in the diagnosis of the disease but the area not being
addressed is the first symptoms of the disease. With early detection, treatment
can start earlier and may result in a longer, more productive life for the patient
and a less stressful life for the family.

No articles that this researcher could find dealt with the combination of the
Continuity Theory and AD. There are only limited articles available on the theory
itself. Most research on AD relates to the cause of the disease. None looked at
the specific first symptoms.

METHODOLOGY AND PROCEDURES
@alitative Research Assumptions

Content analysis of interview responses was used by the researcher as a
qualitative method. The content analysis method is used with narrative
communications for quantifying the content (Polit & Hungler, 1991 ). Polit and
Hungler (1991) describe content analysis as "a procedure for analyzing written or
verbal communication in a systematic and objective fashion, typically with the
goal of quantitatively measuring variables" (p.642). Analysis begins with a
search for themes that embody a common concept or idea. When the themes
are identified then classification takes place so that categories are developed.
The concepts are compared against each other to include similar phenomenon

and grouped into categories (Strauss & Corbin, 1990). The coded date can then

15

be analyzed using the qualitative method of content analysis (Polit & Hungler,
1991)
Primary Research Proiect

The primary project was a qualitative study by Dr. Sharon King
"Perceptions of Community Services by Alzheimer's caregivers". The project
was funded by the Alzheimer's Association. The objective of the study was to
understand caregiver's use of and response to a set of specific community
services. Additional data were obtained on caregiver patterns of help-seeking
behavior, state of patient's disease and behavioral symptomotology (King, 1989).
Primam Sample

In the primary sample 34 caregivers of family members with AD were
interviewed. The sample was a non-random, convenience sample of self-
acknowledged caregivers of a family member over 55 who had a diagnosis of
AD. The convenience sample was obtained through the mailing distributed to
the Michigan Association of Adult Day Care, the local Alzheimer's Association
and southwest Michigan health agencies. Contact was made by telephone and
subjects were asked if they would participate in an interview on community
services.
Protection of the SLLbiects

The caregivers, who were interviewed, gave written permission for the
interview and were allowed to stop the interview at any time. Confidentiality was
assured by the interviewer and anonymity was kept by giving the subjects
numbers instead of references by name. All research was approved by
University Committee on Research Involving Human Subjects (UCHIHS). The
protection of human rights for subjects was achieved by adherence to the rules
and regulations of the UCRIHS. Protection of human subjects rights and welfare

was maintained when reviewed by the 20 member committee (IRB #89-278).

16

The project was reviewed and approved by the committee for primary study
June, 1989 (see Appendix A). The regulations were followed for the secondary
analysis and confidentiality was achieved through nondisclosure of names.
Refer to Appendix B for the UCRIHS letter for approval of the secondary
analysis.
Data Collection

The 34 subjects responded to questions in a semi-structured face to face
interview. The Interview Guide is shown in Appendix C. Interviews were tape-
recorded and were transcribed verbatim onto an ethnographic computer
program. Open ended questions were used to explore first awareness of AD,
chronology of the disease and response of the caregiver, current view of the
caregiver, future views, and help seeking behavior (King, 1989). The Ethnograph
program was used because the program was especially designed for analysis of

qualitative data.

Analysis

Content analysis was used to analyze the data. Themes were identified
allowing for category development. Coding was then possible for a systematic
way for measuring the information.

Four groups of question were asked pertaining to: first awareness,
information on the disease course, current information, and specific services.
These were then broken down by the researcher to coding categories of: prior to
illness, initial symptoms, and community services. Three nurse researchers in
the area of caregiving developed the coding scheme (Appendix D) and entered
the data in the ethnographic computer program. The principal investigator,
graduate assistant and the researchers independently coded the interviews and

reviewed for coding discrepancies.

17

Regapility aid Validity

A consultant, who is a qualitative researcher and familiar with
ethnographic research methodology, was asked to assist in the identification of
the themes in the interview transcripts and to assist in determining validity and
reliability (King, 1989). Pilot interviews were used to develop and refine the
interview questions. The interviewer asked probing questions until all responses
were achieved and clarified. After the interview, two trained research members
independently coded the information and reviewed transcripts for coding
discrepancies.
Secondary Research Samjle

The secondary analysis data was taken from the same 34 transcripts from
the primary study. The primary bulk of information was taken from those
questions under "first awareness".
Secondaerata Analysis

The transcripts in the primary study were analyzed for those references by
caregivers of first awareness of patient symptoms. The bulk of the information
were responses to the question under the title "first awareness" but many
references were identified throughout the transcripts. References to the first
awareness of symptoms were collected and information was reviewed for
themes. The Continuity Theory was used to help identify the themes using age,
roles, personality changes and behavior changes as a beginning outline. A
matrix was developed to aid in analysis of the interview information.

This researcher also reviewed who made the statements in terms of
relationship to patient. Statements of first awareness of behavior changes were

categorized by relationship of wife, daughter, son, and other.

18

Validy' and Reliabilig

The methods assuring the validity and reliability in the primary study were
stated earlier. To assure validity, only the data contained in the segments code
with first awareness symptoms were used: Patient Symptoms (PATSYMPT),
Obtaining Diagnosis (OBTDX), Diagnosis confirmation (DXCONF IX). To assure
reliability the transcripts were reviewed to make sure the statements are
complete and all first awareness statements were identified from the transcripts.

To assure that all pertinent data was being considered, related to first
awareness, a random recoding was done. Using a research staff member
familiar with the coding process, three random transcripts were selected and
recoded to validate the reliability of the original coding.
Methodolggical Limitations of Qualitative Research

One of the drawbacks of qualitative research is the volume of data that is
produced. To combat this limitation the data collected is coded to condense the
qualitative materials. Polit and Hungler stated (1991) "We believe that an
understanding of human behavior, problems, and characteristics is best
advanced by the judicious use of both qualitative and quantitative data (p.500).

Qualitative research can give insight into an aspect of a human
experience. It can not show a cause-and-effect relationship, testing for research
hypotheses, determining opinions of practice or attitudes of a large group (Polit,
Hungler, 1991).

Due to the large amount of narrative material for analysis only a small
sample is used. The analysis is very time consuming, making a larger sample
unfeasible. This makes generalizing of findings inappropriate (Polit & Hungler,

1991).

19

A limitation of secondary analysis is the difficulty attempting to glean
information from interviews that have already been completed, frequently for a
different purpose. Additional questions pertaining to this research investigation
could have been asked to probe the problem more fully or clarify, but are not
possible with secondary analysis. The subjects were also asked to recall events
that have already occurred. Therefore, limitations also exist related to the
subjects memory and the passage of time.

PRESENTATION OF DATA AND ANALYSIS

The analysis of the coded segments: PATSYMPT, OBTDX, DXCONF IR,
contained information regarding initial awareness of AD. PATSYMPT (patient
symptoms) was the category that was supposed to be coded for any comments
that were relative to the caregiver's description of the initial awareness but often
included later symptoms in the answers. DXCONFIR (confirmation of diagnosis)
was found in a few interviews to contain early symptoms of AD in the transcripts.
OBTDX (obtaining diagnosis) contained the coded statements the caregivers
made about the experience in obtaining the diagnosis of the disease but some
statements also contained some symptoms.

Subjects

The 34 caregivers represented in this sample of transcripts were primarily
women: 11 spouses, 13 daughters, two daughter-in laws, and one sister. Only
seven of the caregivers were male and they were all spouses.

The AD patients were fairly evenly divided between females and males.

Of the 34 patients 18 were female and 16 were male. The relationships of the

20

female patients to the caregiver included: ten who were mothers of the caregiver,
seven who were wives, and one who was a sister. The male patients consisted
of three who were fathers to the caregiver, 11 who were husbands, and two who
were father-in-laws. See Table 1 for demographics.

Findings

The analysis of the data was based on the code segments OBTDX,
DXCONFIR, and PATSYMPT from the transcribed interviews. The responses
from these segments were sorted to obtain only those comments regarding initial
symptoms. Many caregivers described symptoms occurring later in the disease
when asked to respond to questions regarding initial symptoms. The Continuity
Theory of aging was used as a guide to try to identify themes when analyzing the
data.

Many of the caregivers when talking about the initial symptoms noticed
one to three symptoms. Fourteen (41.2%) were able to identity only one
symptom, twelve (35.3%) noted two, and eight (23.5%) of the caregivers
identified three initial symptoms.

Seven categories were observed in the breakdown of the initial symptoms:
a change in visual-spatial skills, a change in arithmetic skills, a language
disturbance, some type of psychiatric symptoms, forgetfulness, a change in
judgment skills, and a gait change.

Of the 34 caregivers in the study, twenty-three (67.6%) listed forgetfulness
as 3 initial symptom. Twenty (58.8%) noted a psychiatric symptom, this

included: mood changes, anxiety and phobias, social withdrawal, behavioral

21

Table 1

Descmtion of su_biects (n=34).

 

VARIABLE %
fl
FEMALE 79.4%
MALE 20.5%

FEMALE CAREGIVER RELATIONSIHIP
TO PATIENT (n=27)

WIFE 40.7%
DAUGHTER AND/OR

DAUGHTER-IN LAW 55.5%
SISTER 3.7%

MALE REI:ATIONSHIP
TO PATIENT (n=7)

 

HUSBAND 100%
g Of Patient
FEMALE 52.9%

MALE 47.0%

(n)

27

11

15

18
16

22

disturbances, paranoia and delusions, self neglect, and depression. Five
(14.7%) noted a problem with arithmetic skills. Four (11.7%) noted a visual-
spatial skill change. Four (11.7%) noted a gait change, most included falls. Four
(11.7%) noted a language disturbance. Two (5.8%) noted a cognitive skill
change. Zero noted no behavior change. See Table 2 for a summary of
symptoms categories.
IDGLGS.

After segments of the transcriptions were sorted into categories of the
different symptoms noted as first awareness the Continuity Theory was used to

help identify themes from the information collected. From the study findings

Table 2

Categories of Identified Smetoms

VARIABLE % (n)
Forgetful 67.6% 23
Psychiatric symptoms 58.8% 20
Arithmetic skill change 14.7% 5
Visual-Spatial change 1 1.7% 4
Gait change 1 1.7% 4
Language disturbance 11.7% 4
Judgment change 5.8% 2

No behavior change 0% 0

23

several recurrent themes emerged; memory/cognitive changes and personality
changes.
Memory/Cognitive Chflqgs

A major theme was the memory/cognitive change. In the Continuity
Theory, Atchley (1989) states "internal continuity is defined by the individual in
relation to remembered inner structure, such as the persistence of a psychic
structure of ideas, temperament, affect, experiences, preferences, dispositions,
and skills" (p. 184). According to Atchley (1989), internal continuity requires
memory. Atchley indicates that people use internal continuity as a foundation for
decision making and cognitive knowledge is an large element of the persons
capacity to anticipate and interpret events. Atchley indicated that without
cognitive knowledge there is no predictability in the world, and without
predictability competence and mastery are not possible.

Both memory and cognitive knowledge are necessary for internal
continuity. When these factors are altered, Atchley (1989) indicates that a
change in internal continuity will affect ego integrity, self-esteem, alter the
motivation for meeting important needs, and maintenance of social interaction
and social support.

Of the 34 caregivers used in the study, 23 noted a change in memory.
Some transcripts included statement about behaviors such as forgetting food
was on the stove, how to dress, how to add up numbers or figure out the
checkbook. One caregiver noted that her mother's memory was getting worse
and worse and she would forget about money, paying bills, medicine and meals.
Many mistakenly assumed that this behavior was a normal part of the aging
process until the symptoms were quite pronounced. Some even indicated that
even when they took their family member to the health care provider, the

provider didn't think anything was wrong and attributed behavior to aging. An

24

example of a physician's attitude on one transcript was " he just lumped it as
growing old and everyone goes through this one way or another". The care
provider had just taken two classes on dementia and decided her mother needed
an assessment done and took her to the Geriatric Assessment Center. When
the assessment was completed her mother was diagnosed "in mid to late stage
of the middle phase of dementia".

ln nine of the transcripts a notable change in memory and/or behavior
occurred following a traumatic experience. This involved a death or accident of
spouse or an accident or surgery of the patient. Many of the caregivers used
these experiences to rationalize the change in behavior. An example of this
rationalization as stated by a care provider: "She was well, after she had broken
her hip the first time, it started then. I could tell, she was losing her memory.
Slow but sure". Another care provider stated about her mother dealing with her
father's illness: "She was really unable to adapt to some of those changes. We
thought it was just his condition and having to many things to remember."
Personality Changg

Twenty caregivers noted a change in personality as the first awareness of
the disease. Atchley (1989) states "people are expected by others to present
themselves in a way that is obviously tied and connected with their past role
performance" (p.185). Atchley (1989) also stated that "self and identity are
terms that refer to interrelated intrapsychic structures" (p.186). Atchley (1989)
felt "self concept is what we think we are like: our appearance, abilities,
preferences, emotionality, personal goals, level of performance, attitudes, roles,
and so on..." (p.186). Identity refers to self and personality that are part of the
person (Atchley, 1989). Both internal and external continuity are needed for a

healthy adult.

25

In some of the transcripts, the caregiver just noted a change in
personality. Others were more specific with their answers. Noted changes were
mood, social withdrawal, behavioral disturbances, self neglect, anxiety or
fearfulness. One caregiver noticed "she would do things totally alien to her
personality". "She gave up all social activities". One caregiver noted her family
member used to be a meticulous housekeeper, now dust was on things and
disarray was evident. Another caregiver noted pacing behavior and
repetitiveness. Nearly all subjects noted a change in the patient's personality but
some were later symptoms in the disease process.

Caregivers have been providing care for their family member from one to
nine years. Some patients needed assistance with grooming or dressing and
were fairly independent while other were totally dependent at the time the
interviews were conducted. Caregivers described a gradual development of
forgetfulness that was so insidious in nature that it was difficult for them to
describe the beginning.

Personality changes occurred, and in some cases arithmetic skills and
visual-spatial orientation were the first symptoms. Some noted a change in their
families members roles. Some patients had been very family oriented and now
thought only about themselves and some patients limited or eliminated social
connections. Some caregivers noted a gradual change in their family member
that resulted in a change of life satisfaction. One patient stated to their family
member "I'm no good, I want to shoot myself like this". Many didn't even
remember how much they had changed and it was the caregiver who became
aware of changes in the AD patient's level of life satisfaction. One caregiver
noted a change in her mother's speech, "she used to be an extemporaneous
talker, but now she only listens. She used to help at the Alpha Center but she

changed."

26

DISCUSSION AND IMPLICATIONS

Over two-thirds (67.6%) noted memory problems as a initial first
awareness symptoms, and/or a personality change. Interestingly, the first
symptoms were usually so insidious that the family blamed the behavior changes
to other factors occurring in their families lives. Adams and Victor (1990)
indicated that the development of forgetfulness is a major symptom of AD that
was also a major symptom noted in this study. Staab and Lyles (1990) stated "In
a normal elderly person there should be no drastic change in general
appearance, and behavior, level of consciousness, stream of mental activity,
thought content, emotional reaction, and self image" (p. 521). Staab and Lyles
(1990) indicated that there is a very gradual failing of short-term memory but in a
normal adult a forgotten item will be remembered later but in a AD adult it will
remain forgotten.

The two major themes of memory/cognitive changes and personality
changes indicated that the behavioral changes noted by the caregivers were
typical behavior changes as described in the literature on AD. However, the
caregiver sometimes did not consider the change as abnormal for an
aging adult. In some cases even when the families noted a change or
discontinuity the care provider did not see a problem. One caregiver stated, " It
was simply an exaggeration of idiosyncrasies. And I thought well he's 71, I
thought well he's just getting, you know, more of the way he's always been."
Critigge of Continuity Theory as a Fmework

Continuity Theory was used as a guide for this study. The theory helped
to categorize and develop themes. This allowed for easier analysis of the
information presented. The researcher hoped to show how the concepts related
to each other in normal aging, and make it easier to see abnormal or

discontinuity behavior. One of the concepts on the Continuity Theory is role. In

27

some cases a change of role was noted by the caregiver but this researcher
initially hoped to use role change as a theme in the study. This did not occur.
The role changes were mostly implied, such as being active in social events

to limited involvement, or a change in roles from being a caregiver of children
and grandchildren to being the one receiving care. The role changes were not an
initial behavior change but the behavior changes did result in a change of role.
Role change questions were not included in the initial study and would have
been helpful with this study.

Using the Continuity Theory of aging made it easy to see how age, an
alteration in roles, and change in personality affected life satisfaction with AD
patients. It was helpful to see how discontinuity in one area affected the others.
LimitatLons and Strengths of the StL_Id_y

The first limitation of the study was subjects were not randomly procured.
The caregivers were volunteers who consented to the interview process. The
study was a secondary study, conducted from transcripts obtained from
a longitudinal study with the primary focus on community services. The study
sample was small and limited to a specific area so the result might not be the
same if a broader study were obtained.

A significant limitation of the study was the limited number of questions
that dealt with first awareness. It would have been beneficial to have additional
questions that focused on this area. Often it was very difficult, since it was a
retrospective study, to identity the FIRST AWARENESS behavior the caregiver
noted. The caregivers tended to ramble, lumping initial symptoms and later
symptoms in one answer making it very difficult to identify what the first
awareness symptom were. Additional probing questions would have been
helpful to try to pin down what were the first awareness of symptoms.

A strength of the study was that in using a qualitative approach it did allow

28

for the answers expressed to show what the caregiver actually thought and not
try to pin them down to yes or no answers. Concepts could have been lost in a
multiple choice response, or yes or no answers.

melications for Ndrsing Practice, Edtfltion, and Research

The results of the study suggest implications for nursing practice,
education, and research. With the advanced roles in which nurses are presently
employed and the new expanding roles that are being created, the need for a
highly skilled APN will only continue. An APN in a primary health care role
functions as a health care generalist "delivering primary care place emphasis on
wellness, or promoting the client's and families' ability to cope with illness, to
adjust and adapt to disability and incapacitating illness" (Nursing 501 syllabus
p.24). With AD, the APN needs to be knowledgeable in all aspects of care.
Emphasis needs to be based on early detection and getting the patient into the
health care system. Prevention of health and psychosocial problems needs to
be stressed for the AD patient when an assessment is completed by the APN.
Family members and the health care system need additional education on the
prevent of problems with AD in addition to the treatment of pathology (VanderZyl,
1979)

The APN should conduct a thorough assessment of his/her patients
especially when a behavior/personality change is noted or if there is a problem
with forgetfulness. Forgetfulness should be a question explored on the history
and physical to see if normal aging is present or the beginning of AD. It would
be beneficial to have a family member with the patient when the history is done.
Many elderly are afraid that if they are forgetful, then they are showing the first
signs of senility. This fear causes many patients to hide their symptoms. With a
family member present it would be easier to detect any memory changes. It is

important to pick-up early symptoms to rule out reversible conditions, such as

29

fever, poor nutrition, reaction to medication, emotional problems or a head injury
(US. Department of Health and Human Services, 1993).

AD is irreversible and can not be cured but with early intervention by the
APN there is still a lot that can be done the treat the patient and help the family
to cope with the present situation. Clearly, more exploration is needed with
identification of early AD for the prevention of health and psychosocial problems
and stress on the families. The APN has the unique opportunity to enhance the
lifestyle of the AD patient and family with early detection of the disease process.

In many of the transcripts a lack of knowledge was noted from the
caregiver and in some cases the primary care provider. Education needs to start
in the medical and nursing school. Not only should normal aging be included
in the course work, abnormal aging should also be included. This will allow for a
better understanding of the life and aging process and what is considered
abnormal aging so that early intervention can be started with the first symptoms
of AD.

This study indicates that more research needs to be done with AD and an
increase of education in the health care system and public. A recommendation
from this study is to use the Continuity Theory with a longitudinal study of AD
patients. This would provide a comparison of the AD patient with the individual
themselves as they age. This research design allows for looking at a specific
segment and/or a different point in the subjects life of the disease. This
accounts for the personality and lifestyles of the people in the study which
does not occur in a cross sectional method or using a different theory as a basis
for the study (Vander Zyl, 1979). It will also eliminate many of the problems
dealing with a caregiver having to remember events from years prior to the study.
With the lack of education within both the health care system and families, the

need for community education is vital. The transcripts indicated that

30
forgetfulness and a personality chance were some the first changes noted by the

caregiver. The caregivers, at times, indicated that caregivers thought
forgetfulness was normal when getting older. The concept of what is normal
aging and abnormal is not well understood.

In the Continuity Theory the concept of old age is part of the life cycle and
not a terminal end of life (Vander Zyl, 1979). With the assumption in the
Continuity Theory that as one grows older their predisposition towards
maintaining continuity continues, the caregiver can note when the family
members behavior alter or attitudes change from their normal pattern. With the
pattern changes the caregiver should be concerned with this first awareness and
begin medical evaluation. With the increase of an aging population the age
prevalent disease of AD will only increase. The public and the health care
system need to be aware of what is considered a change from normal, such as
forgetting a name but remembering it later, unlike the forgetfulness noted in AD
(Gwyther, 1985). This type of misconception points out the lack of knowledge
that is present today. The APN can use the information in this study to built
upon for research, education, and in the primary healthcare setting.

Summam

The purpose of this study was to examine reports of first awareness of AD
as reported by the family caregiver. The Continuity Theory was used to help
identify the discontinuity behavior noted. The findings of this study showed that
forgetfulness and personality changes were the two major symptoms that the

caregiver noted. Present literature on AD indicates that forgetfulness is often

31
the first symptom noted (Adams & Victor, 1985). Personality changes occur later

in the disease process (Adams & Victor, 1985). The caregivers in some
transcripts showed lack of knowledge about what was going on with their family
member. Many could have been evaluated earlier in the disease process if the
discontinuity behavior was recognized.

The APN needs to be aware of the subtle changes of AD when evaluating
their patients. Additional research needs to occur on the first awareness
symptoms, so that prevention of health and psychosocial problem of AD will
occur, resulting in an enhancement of lifestyle for the AD family and patient.

No research is available with AD and the Continuity Theory. This would be
a unique opportunity to expand the knowledge base of nursing using these two
concepts. As the population ages the problems dealing with AD will only
continue. The time is now to understand and use the information acquired to

better the lives of the AD patient and their family.

APPENDICES

APPENDIX A

32

MICHIGAN STATE UNIVERSITY

 

WIT? COMMITTEE ON RESEARCH INVOLVING EAST LANSING ° MICHIGAN ¢ auzmm
HUMAN SUBJECTS (UCRIHS)

206 am HALL

(517) 353-9733

June 5, L990 IFIB# 89-278

Sharon King, Ph.D., RN.
College of Nursing
A230 Life Sciences

Dear Dr. lfing:

RE: 'PERCEIVED BARRIERS TO THE USE OF COMMUNITY SERVICES BY
ALZHEIMER'S CAREGIVERS IRB# 89-278'

UCRIHS' review of the above referenced project has now been completed. I am pleased

to advise that the rights and welfare or‘ the human subjects appear to be adequately

protected and the Committee, therefore, approved this project at its meeting on June 4,
. |990.

You are reminded that UCRIHS approval is valid for one calendar year. If you plan to
continue this project beyond one year, please make provisions for obtaining appropriate
UCRIHS approval one month prior to June 4, l99l.

Any changes in proceduresinvolving human subjects must be reviewed by the UCRIHS
prior to initiation of the change. UCRIHS must also be notified promptly of any problems.

(unexpected side effects, complaints, etc.) involving human subjects during the course of
the work.

Thank you for bringing this project to our attention. If we can be of any future help,
please do not hesitate to let us know.

Sincerely,

Jo n K Hudzik, Ph.D.
Chair, UCRIHS

JKH/sar

APPENDIX B

 

OFFICE or
RESEARCH
AND
GRADUATE
STUDIES

lhhudhihnmflheol
flmuuunmnhhg

517355-2180
FAX 517/432-1171

mums-m
nuanmwmuanmm
Enunanaun

IGUdndflmmrmwa
adaunnwmmnn

   

33

MICHIGAN STATE

UNIVERSITY

 

May 24, 1996

To: Deborah Oegema
1319 Madison St.
Muskegon, MI 49442

RE: IREfi: 96-364 _
TITLE: WHAT TO PRIMARY CAREGIVERS IS THE REPORT OF
FIRST AWARENESS OF AN ALTERATION IN BEHAVIOR OF
AN ELDERLY FAMILY MEMBER DIAGNOSED WITH

DEMENTIA?
REVISION REQUESTED: N/A
CATEGORY: Z-H
APPROVAL DATE: 05/23/96

The University Committee on Research Involving Human Subjects'lUCRIHSl
review of this prOJect is complete,. I am pleased to advise that the
rights and welfare of the human subjects appear to be adequately
protected and methods to obtain inrormed consent are appropriate.
Therefore, the UCRIHS approved this project and any reVisions listed
above.

RENEWAL: UCRIHS approval is valid for one calendar year, beginning with
the approval date shown above. Investigators planning to
continue a project be ond one year must use the green renewal
form (enclosed with t.e original agproval letter or when a
prOject is renewed) to seek u date certification. There is a
maXimum of four such expedite renewals pOSSible. Investigators
wishing to continue a project beyond that time need to submit it
again ror complete reView.

REVISIONS: UCRIHS must review any changes in grocedures involving human
subjects. rior to initiation of t e change. If this is done at
the time o renewal, please use the green renewal form. To
reVise an approved protocol at an other time during the year,
send your written request to the CRIHS Chair, requesting revised
approval and referenting the project's IRB # and title. Include
in your requesc a description of the change and any revised
instruments. consent forms or advertisements that are applicable.

PROBLEMS/

CXANGESz Should either of the following arise during the course of the
work. investigators must notir UCRIHS promptly: (1) problems
(unexpected Side effects. comp aints. etc.) involving human
subjects or (2) changes in the research environment or new
information indicating greater risk to the human sub ects than ,
eXisted when the protocol was preViously reviewed an approved.

If we can be of any future help, lease do not hesitate to contact us
at (517)355-2180 or FAX (Sl7l4 2- 171.

Sincerely, .
, ' x, E.
id 8. Wright. Ph.D. '
CRIBS Chair ’,,«~

'

DEW:bed

cc: Sharon King

APPENDIX C

34
INTERVIEW GUIDE

Use Of Commurnity Services BLAlzheimer's Caregivers

The reason for this interview is to get a detailed picture of your experience
taking care of a person with Alzheimer's Disease. We would like to know as
much as possible about what kinds of help you need now or may have needed at
times in the past. I'm interested in knowing what experiences you may have had
in looking for help and what things are important for service providers to know
when they are planning services for people in situations like yours.

A. FIRST AWARENESS: I would like to start out by talking about the history of
your relative's Alzheimer's Disease and the events leading up to your awareness
of the disease.

1. Describe yourself and your relationship with the
patient before the problem with Alzheimer's Disease
began.

2. Describe the situation when you first noted
difficulties or what you think was the beginning
of the Alzheimer's Disease.

a. How were you spending time? What was happening
in your life at the time?

b. How did you first suspect that something was
wrong?

c. What did you do before going to the doctor?
Did you ask for or receive advice from friends
of family?

d. Tell me about the experience you had getting
a diagnosis for you (Parent/spouse). Was
Slhe diagnosed as having Alzheimer's Disease
the first time that you went to the doctor?

e. What was your reaction to finding out that
(parent/spouse) had Alzheimer's Disease?

35

What did you know about Alzheimer's Disease
at the time (parent/spouse) was diagnosed?
Had you ever know anyone else who had it?

. What did you need in the way of help when you

@rent/spouse) was diagnosed?
What help did you seek at that time?

What help did you think about seeking but
didn't? What prevented you?

3. Help-seeking patterns. I am interested in knowing
about the ways that you have gotten the kind of
help for other problems that you may have had in
the past.

Over time, has it been easy for you to ask for
for help from others?

What kind to help can you ask for?

What kind of help can you not ask for?

How does it make you feed when you face a
situation that is so difficult to handle that
you need to seek help from other?

B. THOUGH THE COURSE OF THE DISEASE: People with
Alzheimer's Disease go through a lot of changes. I'm
interested in knowing more about what those changes

have been for your (parent/spouse) and how they have
affected you.

a.

As time processed, what changes occurred in you

(parent/spouse) as a result of the Alzheimer's
Disease?

How did the demands of caregiving change for you
as the disease progressed?

How did your life change as the Alzheimer's

Disease became more severe?

What else was going on in your life at the same

(besides taking care of the patient)?

36

e. Describe the feelings you had as your patient d
developed different symptoms of Alzheimer's
Disease. Were there times that you felt
embarrassed? Inadequate? Afraid?

I. Did you first seek some kind of assistance with
the care of your (parent/spouse)?

9. When did you first seek some kind of assistance
with the care of your (parent/spouse)?

h. What kind of assistance was that? How did you
know about that particular service? What did
it cost for you to use it?

i. What prompted you to look for assistance at
that time?

j. What did you get out of the service you used?

How did they help your (parent/spouse)? How
did they help?

k. What did you lose in the process?

I. Tell me all of the good things and the bad things
about the services that you used to help you take

care of your (parent/spouse).

C. VIEW FROM THE CURRENT MOMENT: You told me about what
it was like when your (parent/spouse) first developed
Alzheimer's Disease and the things that have taken
place since that time. I'm also interested in what it
is like for you right now and how you think things
may change in the future.

1. What services are you using to help you take care
of you (parent/spouse) right now?

a. How much help are those services to you?
b. What would make them better?
c. How did you locate these services?

2. Looking back, if you could have found just what
you needed to make this whole experience easier
for you, when would that have occurred?

a. What would it have looked like?

37

b. Would you have used it?

3. What are the most important areas, form your
perspective, that people like you need assistance
with?

a.

Is their a "right time" and a "wrong time"
for certain kinds of services (ask for
example)?

What kinds of things kept you form using
services when you might have needed them?

D. SPECIFIC SERVICES: The things that you need to help
you change over time and so do the things that you
expect from different kinds of services. These
questions are about what you have experienced with
several different sorts of services. Answering the
questions about some of these services may make you
feel like you are repeating yourself. If that is the
case, could you just summarize your experiences with
the service.

1. Describe your experience with the following kinds
of services; What do you know about them? Have
you used them? Did they help?

a.
b.
c.
d.

e.

visiting nurses,

home health aides,

adult day care,

home companions/sitters,

family support groups,

I. housekeeping/chore services.

2. Is there anything else that we should understand
about how community services do and do not help
you that hasn't been touched upon by any of the
quesfions?

APPENDIX D

38

CODING CATEGORIES

PRIOR TO ILLNESS

 

CGVSELFC Caregiver self—concept
PTPASTID Caregiver concept of patient identity,
PTPASTBH Patient's past professional identity
and character traits, caregiver's
characterization of patient's past
behavior traits
RELATEQU Perceived Quality of Relationship
RELATECH Characteristics of Relationship
PREVHELP Previous help seeking behavior (caregiver)
CGVROLES Roles-(Work role, Social role, Family role)
FAMACTV Family Activity
ALZEXP Past Experience with Alzheimer's Disease
Identified Support
SUPPNET Quantity of supportive others-Who are
supportive others? family, friend
SUPPQUAL Quality of identified support
lNlTlALSYMPTOllfi
CGVREACT Caregiver reactions (Emotional)
CGVACT Caregiver Actions
lnforrnation Seeking
Assistance Seeking
Taking over Patient Responsibilities
PTREACT Patient Reactions (Emotional)

 

39

 

 

PATSYM PT Patient Actions
Memory loss, forgetting
Becoming lost
Confusion
Questionable judgment
"Inappropriate"
Embarrassing
Continuity with past behavior
Discontinuity with past behavior
PROVREAC Professionals" Reactions (Emotional)
PROVACT Professionals' Actions
FFREACT Family/friends Reactions (Emotional)
FFACT Family/friends actions
DIAGNOSIS
COSTDX Cost
REACTDX Caregiver reactions to diagnosis
UNDERDX Caregiver understanding of diagnosis
CONFIDX Caregiver confidence in diagnosis
DXCONFIR Confirmation of caregiver suspicions/beliefs
OBTDX Experience of getting diagnosis
DESCRIPTION OF CAREGIVING
REACONCG Reason for caregiving
CGVTASK Description of the caregiving job
CGVFEARS Caregivers fears
TASKREAC Reaction to caregiving
@MMUNITY SERVICEUSE
ACTCUE Cues to seeking service "Critical Event"
SERVKNOW Knowledge of service availability

SERVPROV
SERVA'IT

INFRSOUR
SERVDM

SERVPTRE
SERVCGRE
VALUE
SERVPROB
SERVBENE
SERVSEEK
HELPNEED
SUPPGR
BOOK
AFCHOME
NURHOME
RESPITE
DAYCARE
INHOMESK
INHOMECU
ASSESS
HOUSE
MEALS
MEDICAL
AGINGAG
CLASS
ALZASSOC

40

Perceptions of service providers
Pre-existing attitudes about service

Source of information about service

Process of decision-making in use of service (Who part/
involvement of others, Stated reason for service timing of
service Cues: Patient behavior/caregiver reaction/provider)

Patient reaction to service

Caregiver reaction to service

Caregivers values about outside assistance
Stated problems associated with service use
Stated benefits associated with service use
Description of process of finding service
Description of needed assistance

Support Group

"The 36 Hour Day", "Loss of Self"

Adult Foster Care Home

Nursing Home

ln-home respite program

Out-of-home daycare program

ln-home skilled nursing service

ln-home custodial assistance

Assessment Center

Housekeeping Assistance

on Wheels, Mobile Meals, etc.

Medical services... hospital, clinic, physicians
Aging agency or commission

Programs on Dementia or related issues

ALZ Association

LIST OF REFERENCES

LIST OF REFERENCES

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Alzheimer's Disease Education & Referral Center (1995). The Afilzheimer’s
disease: Fact sheet. Silver Springs, Md: United States Department of Health and
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Alzheimer's Association (1989). Annual reports on gLants, 1989.
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Atchley, RC. (1989). A Continuity Theory of normal aging. [IE
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Atchley, R.C.(1983). Aging: Coflinuity and charm. Belmont, CA:
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41

42

Burbank, P. (1986) Psychosocial theories of aging, a critical evaluation.
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Given, C.W., Collins, C.E., & Given, BA. (1988). Sources of stress among
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of Medicine, 964-971.

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United States Department of Health and Human Services, (1993). Aga
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United States Department of Health and Human Services, (1995).
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VanderZyl, S. (1979) Psychosocial theorizes of aging: Activity,
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