University of Iowa University of Iowa

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Theses and Dissertations

Fall 2012

Perceived stigma in persons with early stage dementia and its Perceived stigma in persons with early stage dementia and its

impact on anxiety levels impact on anxiety levels

Rebecca Jane Riley University of Iowa

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Part of the Educational Psychology Commons

Copyright 2012 Rebecca Jane Riley

This dissertation is available at Iowa Research Online: https://ir.uiowa.edu/etd/3521

Recommended Citation Recommended Citation Riley, Rebecca Jane. "Perceived stigma in persons with early stage dementia and its impact on anxiety levels." PhD (Doctor of Philosophy) thesis, University of Iowa, 2012. https://doi.org/10.17077/etd.tv3oi7w4

Follow this and additional works at: https://ir.uiowa.edu/etd

Part of the Educational Psychology Commons

1

PERCEIVED STIGMA IN PERSONS WITH EARLY STAGE DEMENTIA AND ITS

IMPACT ON ANXIETY LEVELS

by

Rebecca Jane Riley

An Abstract

Of a thesis submitted in partial fulfillment of the requirements for the Doctor of

Philosophy degree in Psychological and Quantitative Foundations (Counseling Psychology)

in the Graduate College of The University of Iowa

December 2012

Thesis Supervisors: Professor John Westefeld Professor Emeritus Kathleen Buckwalter

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ABSTRACT

As the baby boomers age, the number of individuals diagnosed with Alzheimer’s

disease and related disorders (ADRD) will increase. The following study was a part of a

larger study that was concerned with the relationship between the stigma of dementia and

overall quality of life (QoL) in persons diagnosed with early stage dementia. The study

in this paper examined the relationship between the stigma of dementia and anxiety

symptoms. Anxiety is a type of behavioral and psychological symptom of dementia

(BPSD) that is common in persons with dementia (PwD). Anxiety may be exacerbated in

PwD as a result of unfamiliar situations, changes in routine, awareness of cognitive

deficits, inability to express their needs, or worries about how others will respond to their

diagnosis. In town hall meetings across the nation, Voices of Alzheimer’s disease,

persons who had been diagnosed with dementia in the early stages indicated that the

stigma of dementia was a predominant concern. The stigma of dementia seemed to be

perpetuated by negative societal attitudes and misconceptions of the disease, possibly

impacting PwD’s anxiety levels and consequently, their QoL. In this study, there was a

significant relationship between perceived stigma and anxiety levels in PwD (r=.35;

p=.022) at the .05 level in the second visit (T2). It could not be concluded that the

relationship between perceived stigma and anxiety levels in PwD changed between visit

two (T2) and visit three (T3). Finally, it could not be concluded that social support,

demographic variables, stage of disease, or mental ability mediated the relationship

between perceived stigma and anxiety.

Abstract Approved: ____________________________________ Thesis Supervisor

____________________________________ Title and Department

____________________________________ Date

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____________________________________ Thesis Supervisor

____________________________________ Title and Department

____________________________________ Date

1

PERCEIVED STIGMA IN PERSONS WITH EARLY STAGE DEMENTIA AND ITS

IMPACT ON ANXIETY LEVELS

by

Rebecca Jane Riley

A thesis submitted in partial fulfillment of the requirements for the Doctor of

Philosophy degree in Psychological and Quantitative Foundations (Counseling Psychology) in the Graduate College of

The University of Iowa

December 2012

Thesis Supervisors: Professor John Westefeld Professor Emeritus Kathleen Buckwalter

2

Copyright by

REBECCA JANE RILEY

2012

All Rights Reserved

Graduate College The University of Iowa

Iowa City, Iowa

CERTIFICATE OF APPROVAL

_______________________

PH.D. THESIS

_______________

This is to certify that the Ph.D. thesis of

Rebecca Jane Riley

has been approved by the Examining Committee for the thesis requirement for the Doctor of Philosophy degree in Psychological and Quantitative Foundations (Counseling Psychology) at the December 2012 graduation.

Thesis Committee: ___________________________________ John Westefeld, Thesis Supervisor

___________________________________ Kathleen Buckwalter, Thesis Supervisor

___________________________________ Saba Rasheed Ali

___________________________________ Stewart Ehly

___________________________________ Timothy Ansley

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To Vicki

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ACKNOWLEDGMENTS

Thank you to my dissertation committee and in particular, my advisor John

Westefeld, for supporting me through this process. Also, thank you to Sandy Burgener

and Kathleen Buckwalter for the opportunity to work on this project and for their ongoing

guidance. It was an opportunity of a lifetime and I enjoyed every moment. Finally,

thank you to the research study participants. It was an honor to hear your stories and to

be a part of your lives.

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TABLE OF CONTENTS

LIST OF TABLES ............................................................................................................. vi

LIST OF FIGURES .......................................................................................................... vii

CHAPTER 1 INTRODUCTION .........................................................................................1 The Larger Study ..............................................................................................5 Statement of the Problem of the Current Study ................................................6 Significance of the Study ..................................................................................6 Theoretical Framework .....................................................................................7 Specific Aim and Research Questions ..............................................................7

Specific Aim ..............................................................................................7 Research Questions ...................................................................................7

Conceptual Definitions .....................................................................................7 Limitations ........................................................................................................9 Summary ...........................................................................................................9

CHAPTER 2 REVIEW OF THE LITERATURE ............................................................10 Dementia .........................................................................................................10

Early Stage Dementia ..............................................................................12 Dementia Related Anxiety ..............................................................................13

Symptom Presentation: Behavioral and Psychological Symptoms ........13 Impact of Dementia Related Anxiety on Quality of Life ........................18

Stigma of Dementia ........................................................................................21 Stigma ......................................................................................................21 Voices of Alzheimer’s Town Hall Meetings ...........................................21 Impact of Stigma on Persons with Dementia ..........................................23

Theoretical Framework ...................................................................................25 Theoretical Model for the Current Study ........................................................29 Relationship Between Stigma and Anxiety in Persons with Early Stage Dementia .........................................................................................................30 Summary .........................................................................................................31

CHAPTER 3 METHODOLOGY .....................................................................................32 Participants .....................................................................................................32 Procedure ........................................................................................................34 Measures .........................................................................................................37

Subject Characteristics (Demographic Data Sheet) ................................37 Mental Ability (Mini-Mental Status Exam) ............................................37 Disease Stage (Clinical Dementia Rating Scale) .....................................38 Perceived Stigma (Stigma Impact Scale) ................................................39 Social Support (Duke Social Support Index- 23 Item) ............................40 Anxiety Level (Rating Anxiety in Dementia) .........................................40

Data Analysis Procedure .................................................................................44 Summary .........................................................................................................46

CHAPTER 4 RESULTS ...................................................................................................47 Characteristics of the Study Participants ........................................................47

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Results Presented by Research Questions ......................................................48 Summary .........................................................................................................53

CHAPTER 5 DISCUSSION .............................................................................................55 Overview of Study and Findings ....................................................................55 Relationship between Perceived Stigma and Anxiety ....................................56 Changes in Perceived Stigma and Anxiety Over Time ..................................56 What Influences the Relationship Between Perceived Stigma and Anxiety? ..........................................................................................................59 Limitations ......................................................................................................59 Suggestions for Future Research ....................................................................61 Stigma of Mental Illness .................................................................................63 Clinical Implications for Counseling Psychologists .......................................64 Public Education and Psychoeducation about Dementia ................................66 Educating Professionals and Human Service Providers .................................68

Caregiver Psychoeducation .....................................................................70 Anxiety Interventions for PwD .......................................................................71

APPENDIX A. PHONE LOG OF RECRUITS ................................................................75

APPENDIX B. EVALUATION TO SIGN AN INFORMED CONSENT DOCUMENT FOR RESEARCH ......................................................................................77

APPENDIX C. INFORMED CONSENT .........................................................................78

APPENDIX D. DEMOGRAPHIC DATA SHEET ..........................................................86

REFERENCES ..................................................................................................................87

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LIST OF TABLES

Table 1. An Explanation of the DSM-IV-TR Dementia Diagnosis in Terms of the ADRD Definition ..................................................................................................3

Table 2. Summary of Basic Methodology of Study .........................................................46

Table 3. Characteristics of the Study Participants ............................................................48

Table 4. Sample size, Mean, and Standard Deviations for Perceived Stigma and Anxiety Visit 2 (T2) and Visit 3 (T3) .................................................................51

Table 5. Pearson Correlation Statistics for Perceived Stigma and Anxiety Visit 2 (T2) and Visit 3 (T3) ...........................................................................................51

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LIST OF FIGURES

Figure 1. Theoretical Model for Larger Study ..................................................................29

Figure 2. Theoretical Model for the Current Study ..........................................................30

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CHAPTER 1

INTRODUCTION

One in eight people in the United States were over the age of 65 in the year 2010

and this number will increase to one in five by the year 2030 (U.S. Census Bureau,

Current Population Reports, 2005). In addition, 10 percent of people over the age of 65

are thought to have dementia, with individuals over the age of 85 years having the highest

prevalence rate at 50 percent (American Psychiatric Association, 2000; Flood &

Buckwalter, 2009). This number will likely continue to grow as the population ages

(Bloom, de Pouvourville, & Straus, 2003) and tends to be unsettling as dementia is feared

by many (Schwab, Rader, & Doan, 1985 p. 8). This fear might be connected to the

stigma associated with the disease, resulting in anxiety in persons with dementia (PwD).

There are many different forms of dementia and the medical community often

classifies the diseases together in a group called Alzheimer’s disease and related

dementias (ADRD; Heston & White, 1983). This study was a part of a larger multi-site

nursing study and the principal investigator, Dr. Sandy Burgener chose the medical

definition of dementia, ADRD as the diagnostic criteria to be utilized when recruiting

participants.

For purposes of this study, ADRD was also described in terms of the dementia

section of The Diagnostic and Statistical Manual of Mental Disorders Fourth Edition Text

Revision (DSM-IV-TR; 2000). Disorders in the dementia section were characterized by

the development of multiple cognitive deficits that were due to the direct physiological

effects of a general medical condition, substance use, or to multiple etiologies. The

disorders included in the dementia section discussed below were distinguished based on

etiology.

The essential features according to the DSM-IV-TR (2000) were as follows: 1)

multiple cognitive deficits that included memory impairment; 2) at least one of the

following cognitive disturbances: aphasia (e.g., language disturbance), apraxia (e.g., not

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able to complete motor activities even though motor functioning was intact), agnosia

(e.g., inability to recognize or identify objects despite intact sensory function), or a

disturbance in executive functioning (e.g., think abstractly, sequence, plan). These

deficits must have caused problems in occupational or social functioning and

demonstrated a decline from previous levels of functioning. It is worth mentioning that

The National Institute on Aging-Alzheimer’s Association workgroups recently developed

new diagnostic criteria for dementia, including a new category for mild cognitive

impairment (Albert et al., 2011). For purposes of this study, however, the DSM-IV-TR

criteria were utilized as these were the criteria that were in place at the time of the study.

Table 1 explains the specific types of dementias that are encompassed in the study

discussed in this paper and demonstrates the DSM-IV-TR definition in terms of the

medical definition ADRD. The starred (*) items indicate the conditions that were

included in the study based on the principal investigator’s knowledge of disease

similarities.

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Table 1. An Explanation of the DSM-IV-TR Dementia Diagnosis in Terms of the ADRD Definition

DSM-IV-TR ADRD (Medical Definition)

Dementia Section

Alzheimer’s Disease and Other Related

Dementias

294.1 Dementia of the Alzheimer’s

Type*

Alzheimer’s Disease

290.4 Vascular Dementia* Related Dementia

Dementias Due to Other General

Medical Conditions

HIV Disease

Due to Head Trauma

Parkinson’s Disease

Huntington’s Disease

Pick’s Disease*

Creutzfeldt–Jacob Disease *

Due to Other General Medical

Conditions

o Lewy Body Dementia

o Parkinson’s Disease

o Frontotemporal *

o Brain tumors

o Hematoma

o Endocrine conditions

o Multiple Sclerosis

Related Dementia

Dementia Due to Multiple Etiologies*

Any combination of the above

starred (*) dementias (e.g., Dementia

of the Alzheimer’s Type and

Vascular)

Related Dementias

The larger study, as well as this study, was specifically concerned with early stage

ADRD and excluded persons in the later stages. In the early stages of ADRD, PwD have

the best response to therapeutic interventions and as a result, many people are living

longer with milder symptoms (Brechling & Schneider, 1993; Snyder, 2007). PwD in the

early stages are often able to remain active but their personal identity may change due to

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the changes in their memory, perceptions, and ability (American Psychiatric Association,

1997; Snyder). In this stage, short-term memory loss influences the ability to complete

daily tasks such as balancing a checkbook and completing activities that have multiple

steps (e.g., cooking a complicated meal; American Psychiatric Association; Brechling &

Schneider; Snyder). The memory loss issues are usually manageable through reminders

(e.g., calendars, daily medication dispensers, or writing things down) and allow PwD to

remain active in social and community activities (Snyder). PwD in the early stages are

often capable of understanding their diagnosis and making decisions about their lives

(Brechling & Schneider; Clare, 2002; Smith & Buckwalter, 2005). As a result of this

understanding and awareness of their cognitive deficits, PwD may experience symptoms

of anxiety (Reed & Bluethmann, 2008).

The behavioral and psychological symptoms of dementia (BPSD) are often

discussed in the literature and these symptoms tend to worsen as the disease progresses

(Finkel, 1997). Behavioral symptoms may include wandering, aggression, or sleep

disturbances , while psychological symptoms may include depression or anxiety

(Cummings, 1997; Finkel). BPSD symptoms often lead to suffering, premature

institutionalization, increased costs of care, and loss of quality of life (QoL) for the PwD

(Finkel) and, therefore, they are important to address. For purposes of this study, this

author elected to focus on anxiety related symptoms in dementia, as further detailed in

Chapter 2: Review of the Literature.

Anxiety symptoms in PwD often include things such as persistent worries or

fearful thoughts (Smith, Buckwalter, Kang, Ellingrod, & Schultz, 2008) that negatively

influence QoL in PwD (Finkel, 1997; Shin, Carter, Masterman, Fairbanks, & Cummings,

2005; Smith et al.). As mentioned earlier, PwD in the early stages may be aware of

cognitive difficulties which might lead to anxiety about how others may respond to their

diagnosis (Reed & Bluethmann, 2008). Fears of how others may respond, unfamiliar

people, or activities out of routine, may lead to avoidance and isolation in PwD (Snyder,

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2007). Social support can also affect the QoL of PwD as some feel more anxious in

social situations, while others find positive relationships to be beneficial (Orrell &

Bebbington, 1996; Van Dijkhuizen, Clare, & Pearce, 2006).

Furthermore, BPSD, including anxiety, may lead to negative responses and even

rejection from others (Scheff, 1966). These negative behaviors are often the focus of

public awareness marketing strategies and although these tactics bring attention to the

disease, they also instill fear and perpetuate stigmatizing beliefs and actions (Jolley &

Benbow, 2000). PwD in the early stages of ADRD are more aware of societal labels and

negative responses of others (Snyder, 2007), and this could lead to an internalization of

societal views (Scholl & Sabat, 2008) and a decrease in QoL (Katsuno, 2005).

The Larger Study

As noted previously, the following study was a part of a larger multi-site (e.g.,

Illinois, North Carolina, Iowa) study that began collecting data in April 2008. The larger

study was an NIH-funded (R03) study on Stigma in Persons with Dementia and their

Caregivers. The overall principal investigator was Sandy Burgener, Ph.D., APRN-BC,

FAAN at the University of Illinois at Chicago College of Nursing and the primary

investigator of the Iowa site was Dr. Kathleen Buckwalter, Ph.D., RN, FAAN.

The larger study examined PwD in the early stages of the disease (e.g., no more

than one year since diagnosis) and: 1) described the natural history of perceived stigma

over an 18 month period; 2) described the relationship between perceived stigma in PwD

and QOL outcomes; and 3) described the relationship between family caregiver’s

perceived stigma and QOL outcomes in PwD (Burgener & Buckwalter, 2008).

The statement of the problem explains the specific concerns of the study

discussed in this paper and how it was different from the larger study.

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Statement of the Problem of the Current Study

The stigma of dementia leads to negative responses from others (Reed &

Bluethmann, 2008; Scheff, 1966). In the early stages of the disease PwD are capable of

understanding their diagnosis (Brechling & Schneider, 1993) and consequently, are more

aware of negative reactions (Ballard, Mohan, Patel, & Graham, 1994). There has been

little research completed regarding the stigma of dementia (Clare, Goater, & Woods,

2006) and no research was found that examined how it influenced the anxiety levels of

PwD. This lack of research was important to consider as negative affects, such as

anxiety, lead to negative consequences for PwD (e.g., premature institutionalization,

decreased QoL; Albert, Del Castillo-Castaneda, Sano, & Jacobs, 1996; Finkel, Costa,

Cohen, Miller, & Sartorius, 1997). Therefore, this study examined the relationship

between perceived stigma and level of anxiety in PwD in the early stages of the disease.

Significance of the Study

In Voice’s of Alzheimer’s Disease, a summary report on the nationwide town hall

meetings for people with early stage dementia, the stigma of dementia was noted as a

prevalent problem (Reed & Bluethmann, 2008). Many PwD at the meeting reported

hiding their diagnosis for fear of negative responses from others and social isolation.

Some stated they felt they were no longer trusted and had lost credibility from others.

This led to people treating them as incompetent, differently, or abandoning them

completely. Furthermore, caregivers of PwD refrained from telling others about their

family member’s diagnosis because they feared it would cause condemnation from

community members (Mackenzie, 2006). These continual negative interactions lead to

social rejection, internalized shame, and isolation in PwD (Burgener & Berger, 2008;

Link, Phelan, Bresnahan, Stueve, & Pescosolido, 1999) which might influence their QoL,

including social support and anxiety.

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Theoretical Framework

The study discussed in this paper was grounded in Link’s (1989) Modified

Labeling Theory (MLT) and examined the external factors (e.g., labeling behaviors,

negative social interactions, suboptimal health care) and internal processes (e.g., social

rejection, internalized shame, isolation) of stigmatization. The relationship between

background variables (e.g., disease stage, mental ability, gender, living situation, setting,

ethnic background), characteristics of PwD (e.g., mental deficits, physical impairments,

social psychological issues), QoL outcomes (e.g., anxiety, social support), and stigma

related issues were also examined. MLT will be discussed in detail in Chapter 2.

Specific Aim and Research Questions

Specific Aim

To describe the relationship between perceived stigma and anxiety in persons

with dementia in the early stages.

Research Questions

1. What was the relationship between perceived stigma and level of anxiety in

persons with dementia in the early stages of the disease?

2. Does the relationship between perceived stigma and level of anxiety in persons

with early stage dementia, change over six months, and if so, in what direction?

3. Is the relationship between perceived stigma and anxiety affected by subject

characteristics including social support, demographic variables (length of disease,

PwD education level, race, site, gender), stage of the disease and mental ability?

Conceptual Definitions

The following definitions encompass the main concepts included in the study

discussed in this paper.

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Alzheimer’s Disease and Related Disorders (ADRD) is a medical definition that

encompasses over 70 different types of dementia. There are different etiologies for

ADRD but the essential features include multiple cognitive difficulties including memory

impairment and at least one of the following: aphasia, apraxia, agnosia, or disturbance in

executive functioning (American Psychiatric Association, 2000).

Early stage dementia includes mild impairment in memory, verbal expression,

executive functioning (Brechling & Schneider, 1993), judgment (Boyd, Garand, Gerdner,

Wakefield, & Buckwalter, 2005), and physical abilities. In this study, stage of disease

was measured with the Clinical Dementia Rating (CDR) scale.

Dementia related anxiety includes fearfulness, irritability, paranoia, motor

restlessness, suspiciousness, or day or night disturbances (Starkstein, Jorge, Petracca, &

Robinson, 2007; Teri et al., 1999). This was measured using the Rating Anxiety in

Dementia (RAID) scale.

Quality of Life (QoL) is defined by psychological well-being (e.g., lack of

anxiety), behavioral competence (e.g., behavioral symptoms, personal control, physical

health, self-esteem), and environmental or social interactions (e.g., social support;

Lawton, 1983). The study discussed in this paper focused on the social support aspect of

QoL which was measured by the Duke Social Support Index (DSSI).

Stigma is the stigmatizing responses of others including labeling behavior (e.g.,

not allowing PwD to complete simple tasks once aware of their diagnosis), negative

social interpretations (e.g., others believe that PwD lack independence or societal

contribution; Clare, 2002); and suboptimal health care (e.g., PwD is not taken seriously

by their physician; Reed & Bluethmann, 2008). In addition, stigma includes perceived

stigma in PwD that results from interactions with the external environment (e.g., social

rejection, internalized shame, isolation; Link et al., 1989). The stigma of dementia was

measured utilizing the Stigma Impact Scale (SIS), which was adapted for PwD from the

original SIS by Fife and Wright (2000).

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Limitations

The study discussed in this paper was exploratory in nature as there was little

research surrounding the stigma of dementia and no literature available regarding the

relationship between the stigma of early stage dementia and anxiety. This study helped

determine if there was a relationship but no causal statements were made.

The sample might be biased as some people self-referred and others were referred

by physicians. Both types of participants might have had access to more resources and

therefore, might not have been representative of the general population. The Iowa site,

particularly Iowa City, attracted participants that were mostly upper-class, Caucasian,

educated older adults, while the North Carolina and Illinois sites contained a more

diverse population.

Finally, throughout data collection, recruitment was an issue. As a result, the

sample size of the study was smaller than anticipated. Possible reasons for this will be

discussed in Chapter 5: Discussion.

Summary

This study examined the relationship between perceived stigma and level of

anxiety in persons with dementia in the early stages of the disease. Chapter Two will

discuss the appropriate literature related to ADRD, early stage dementia, BPSD and

anxiety in dementia, the impact of dementia related anxiety on QoL, the stigma of

dementia, the impact of stigma on PwD, and the theoretical framework for the study.

Chapter Three will describe the research methodology that provided answers to the

specific aim and research questions. Chapter Four will report the results of the study.

Chapter Five will discuss the study findings, limitations, suggestions for future research,

and clinical implications for counseling psychologists.

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CHAPTER 2

REVIEW OF THE LITERATURE

Dementia

The term dementia encompasses a group of disorders that have similar symptoms

but different etiologies (e.g.,, Alzheimer’s disease, Huntington disease, AIDs, vascular

dementia; Smith & Buckwalter, 2005). There are more than 70 different types of

dementia but Alzheimer’s disease is the most common type, affecting more than 60% of

PwD (Alzheimer’s Association, 2009; Smith & Buckwalter). Approximately 2.6 million

to 5.2 million Americans have Alzheimer’s disease and it is listed as the 5th leading

cause of death for adults over the age of 65 (Centers for Disease Control and Prevention,

2011).

The essential features of dementia are multiple cognitive difficulties including

memory impairment and at least one of the following cognitive issues: aphasia (e.g.,

language disturbance), apraxia (e.g., inability to complete motor activities even though

motor functioning is intact), agnosia (e.g., inability to recognize or identify objects

despite intact sensory function), or disturbance in executive functioning (e.g., ability to

think abstractly, sequence, plan; American Psychiatric Association, 2000). Symptoms

(e.g., cognitive, emotional, behavioral) exhibited by PwD will vary based on stage of

disease, type of dementia, comorbid diagnoses, and individual differences (Smith &

Buckwalter, 2005).

As mentioned in Chapter 1, due to the number of types of dementia and the

similarities in symptoms, the medical community classifies the dementias together as

Alzheimer’s disease and related dementias (ADRD; Heston & White, 1983). When

defined by the DSM-IV-TR (2000) criteria, ADRD in the study discussed in this paper

included: dementia of the Alzheimer’s type; vascular dementia; dementias due to other

related conditions including Pick’s disease, Creutzfeldt-Jacob disease, and frontotemporal

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dementias; and dementia due to multiple etiologies including any combination of the

included dementias (e.g., Alzheimer’s type and vascular). Therefore, review of the

literature included ADRD in order to encompass the principal investigator’s definition in

the larger study.

There are different stages of disease progress in ADRD including early, middle,

later, and terminal (Buckwalter, 2009). In the early stages, short-term memory is

impaired and PwD may lose or forget things. PwD may blame their memory loss on

stress or fatigue and effectively utilize lists or memory aids to compensate for their

deficiencies. Depression is also common in early stage dementia and is often a comorbid

diagnosis (Buckwalter). Buckwalter further stated individuals in the middle stages of

ADRD exhibit symptoms of confusion. There may be loss of memory and increasing

disorientation regarding time, place, person, and things. Later stage dementia affects

ambulation and includes the progressive loss of their ability to complete daily functioning

tasks (e.g., willingness and ability to bathe; grooming; choosing clothing; dressing; gait

and mobility; toileting; communication; reading and writing skills; Buckwalter). As a

result, PwD typically become increasingly withdrawn and self-absorbed. In the later

stage, PwD exhibit more behavioral symptoms such as irritability, agitation, anxiety, and

pacing. There is often reduced tolerance for stress and resistance to care. The terminal

stage is when all abilities are lost and individuals become mute, unable to walk, do not

participate in meaningful activities, and forget to eat, chew, or even swallow

(Buckwalter). Although these stages provide a guideline for the progression of ADRD,

they are not necessarily distinct and vary from person to person. The variations depend

upon the extent of brain cell death and loss, location of brain cell death and loss, and the

rate at which the losses occur.

The focus of this study was on early stage dementia which will be explored and

defined in depth in the following section. While the focus of the study is on early stage

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dementia, research studies discussing various stages of the disease are included in order

to enhance understanding of dementia.

Early Stage Dementia

In early stages of dementia, there is usually mild impairment in memory and

verbal expression (Brechling & Schneider, 1993). Memory impairments are often the

most pronounced symptoms in the early stages and PwD may misplace objects, forget

food cooking on the stove, struggle learning new information, miss appointments, forget

what they are doing, and repeat themselves in conversations with others (American

Psychiatric Association, 1997; Boyd et al., 2005).

Issues with executive functioning (e.g., completing tasks that require several steps

such as preparing a meal), errors in calculations, lack of spontaneity, lessening of

initiative, personality changes, or increased irritability may become prevalent (American

Psychiatric Association, 1997; Brechling & Schneider, 1993).

PwD in the early stages may exhibit poor judgment or insight (e.g., not aware of

their cognitive deficits, make plans to do things that are beyond their capabilities,

underestimate the risks involved in certain tasks such as driving; American Psychiatric

Association, 2000; Boyd et al., 2005). There may also be an increase in disinhibited

behavior, disregarding social norms, or neglecting personal hygiene (American

Psychiatric Association; Boyd et al.).

These changes do not necessarily indicate PwD are no longer able to make

decisions (Brechling & Schneider, 1993). In fact, because of the slow progression of

most dementias (e.g., average 8 to 10 year timeframe from diagnosis to death), PwD in

the early stages are usually capable of understanding their diagnosis and making

decisions about their lives (e.g., advance directives, legal issues, financial decisions;

Brechling & Schneider; Smith & Buckwalter, 2005). In the early stages, individuals are

often aware of the changes in their behaviors and cognitive functioning and as a result,

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they begin to utilize coping strategies in order to maintain self-respect (Sorensen,

Waldorff, & Waldemar, 2008). They are also able to hide their symptoms through the

use of social skills and practical strategies (e.g. writing things down, memory aids, and

checking behaviors such as checking to see if the iron is turned off; Clare et al., 2006;

Smith & Buckwalter; Van Dijkhuizen et al., 2006). In some cases, these strategies may

be effective but in others, they could cause problems that might negatively influence QoL

(e.g., continual checking behaviors; Van Dijkhuizen et al.). Due to their willingness to

utilize coping strategies, PwD in the early stages of ADRD often respond positively to

education about their disease and strategies to provide structure to their lives and

decrease symptomatology (Flood & Buckwalter, 2009).

In order to provide appropriate resources and treatment, it is important to

diagnose PwD in the early stages (Smith & Buckwalter, 2005). Early diagnosis could

delay brain changes and cognitive decline allowing PwD to remain independent for

longer periods of time. As a result, PwD would be able to make decisions about their

health care (Smith & Buckwalter) helping them maintain some control over their lives

(Sorensen et al., 2008).

Dementia Related Anxiety

Symptom Presentation: Behavioral and Psychological

Symptoms

Cognitive deficits have traditionally been the focus of treatment for persons who

had been diagnosed with ADRD, however, in various stages of the disease, PwD often

exhibit behavioral and psychological symptoms (BPSD) that are disruptive to caregivers

and to self (Finkel, 1997). BPSD are important to address as they result in premature

institutionalization (e.g., nursing homes; Hall, Gerdner, Szygart-Stauffacher, &

Buckwalter, 1995), increased emergency room visits and hospitalizations, and increased

cost of care (Finkel, 2000).

14

The number of residents in assisted living facilities who have been diagnosed with

ADRD is increasing (Smith et al., 2008). PwD are choosing assisted living as an option

other than long term care and there is concern that these facilities are not equipped to

manage the BPSD as the disease progresses; therefore, resulting in inadequate healthcare

(Smith et al).

Behavioral symptoms of dementia often include wandering, intrusiveness (e.g.,

repetitive questions, shadowings, demanding actions), aggression (e.g., physical, verbal,

resistiveness to care), agitation and restlessness, sleep disturbances, disinhibition and

self-destructive behaviors (e.g., sexual disinhibition, social inappropriateness, hoarding,

emotional instability, combativeness; Cummings, 1997; Finkel, 1997). The

aforementioned symptoms are typically in the middle or later stages, however, symptom

progression varies from person to person (Buckwalter, 2009). Behavioral symptoms

appear in 88% of PwD over the course of the disease (Mega, Cummings, Fiorello, &

Gornbein, 1996) and therefore, are important to consider.

Psychological symptoms often include psychosis (e.g., delusions, hallucinations,

paranoid ideation), depression (e.g., apathy, depressed mood, lack of motivation), and

anxiety (e.g., pacing, verbalizations; Cummings, 1997; Finkel, 1997). Anxiety, a form of

BPSD, may occur when the PwD feels stress (Hall & Buckwalter, 1987) and is the focus

of the study discussed in this paper.

There is a debate about the definition of anxiety related to dementia as the

symptoms of anxiety and dementia seem to overlap (Seignourel, Kunik, Snow, Wilson, &

Stanley, 2008). Symptoms of anxiety, depression, and agitation also have similarities

causing further confusion about the definition of anxiety in PwD (Seignourel et al.).

However, in a review of studies that examined the difference between these constructs

through factor analysis, Seignourel et al. found that there was more evidence supporting

the idea that there was a distinct difference between anxiety and agitation. In addition,

results of an earlier study examining the behavioral syndromes in dementia (e.g.,

15

hyperactivity, aggressive behavior, anxiety) found that these three syndromes were

unique and cannot all be lumped under the construct of agitation (Hope, Keene, Fairburn,

McShane, & Jacoby, 1997). Another study stated anxiety symptoms are identifiable,

measurable, and treatable (Qazi, Shankar, & Orrell, 2003).

Anxiety frequently occurs in PwD (Johansson & Gustafson, 1996; Mega et al.,

1996; Ownby, Harwood, Barker, & Duara, 2000) and is exhibited through fearfulness,

irritability, paranoia, motor restlessness, suspiciousness, or day and night disturbances

(Starkstein et al., 2007; Teri et al., 1999). Anxiety related symptoms are often an

indicator of more challenging behaviors that could lead to unnecessary medication or

harm to PwD or others in the surrounding areas (Hall et al., 1995).

Although the participants were not early stage, in a study by Teri et al. (1999),

PwD were divided into two groups (those who did not endorse symptoms of anxiety and

those who did endorse symptoms of anxiety). The number of problem behaviors (e.g.,

wandering, sexual misconduct, hallucinations, verbal threats, physical abuse) were

strongly associated with anxiety. There was a higher likelihood of anxiety with each

additional problem behavior. Starkstein et al. (2007) found that excessive worry and

anxiety in persons with mild, moderate, or severe Alzheimer’s disease was significantly

associated with restlessness, irritability, muscle tension, and respiratory symptoms of

anxiety.

Anxiety, as well as other BPSD, may appear not only because of neurological

changes in the brain but also as a result of PwD’s inability to effectively express their

feelings, experiences, and personality (Snyder, 2007). For example, the ability to

verbally communicate with others and comprehend what is being said in large groups of

people may affect persons in the early stages of dementia, leading to feelings of distress

(Snyder).

The limitations on PwD’s abilities to express their feelings, experiences, and

personality may lead to high levels of anxiety about everyday experiences such as change

16

or environmental factors (Smith et al., 2008). Dementia related anxiety may also be

exacerbated by physical and emotional stimulation, physical illness, or situations where

the physical or social environment becomes overwhelming to PwD (Hall & Buckwalter,

1987). Situations including noisy chaotic environments, or frustration with inability to

identify objects, or inability to communicate needs effectively (e.g., cannot identify or

say the word of a wanted item) may lead to anxiety as PwD’s abilities to manage stress

decreases (Smith & Buckwalter, 2005). Dementia related anxiety may also influence

outcomes on exams and negatively impact PwD’s performances (Scholl & Sabat, 2008).

Sometimes specific triggers may lead to anxiety related symptoms in PwD such as

fatigue; changes in routine, caregiver, or environment; expectation to complete tasks

beyond their abilities; overstimulation in the environment; feelings of loss; illness; pain;

discomfort; or being unsure of their surroundings and the expectations of others (Boyd et

al., 2005; Smith & Buckwalter, 2005). As a result of these triggers, PwD may exhibit

dysfunctional behaviors in order to communicate their needs. It is important to learn

anxiety triggers so negative behaviors that are often escalated in times of stress may be

prevented (Hall & Buckwalter, 1987).

The literature about level of cognitive impairment and its impact on anxiety is

somewhat equivocal. In some cases, PwD who had more severe cognitive impairment

were more anxious than those who had mild to moderate anxiety (Teri et al., 1999) and

the degree of anxiety increased as the disease progressed (Porter et al., 2003). In other

cases, persons with moderate to severe dementia did not have anxiety disorders likely due

to their lack of insight or inability to accurately respond to assessment questions (Forsell

& Winblad, 1997). In other studies, there was no difference in anxiety levels across all

phases of cognitive decline (Bierman, Comijs, Jonker, & Beekman, 2007; Orrell &

Bebbington, 1996).

Most research indicates that persons who are in the early stages of dementia

(Forsell, Jorm, & Winblad, 1993; Reisberg, et al, 1987) and have insight into their

17

abilities have higher prevalence rates of generalized anxiety disorder (GAD; Ballard et

al., 1994) and anxiety symptoms (Eustace et al., 2002; Hargrove, Stoeklin, Haan, &

Reed, 1998). Specifically, they are able to understand their diagnosis (Brechling &

Schneider, 1993), know there is no cure, and experience fears about how the disease will

progress (Smith & Buckwalter, 2005; Sorensen et al., 2008).

Persons in the early stages of dementia anticipate their cognitive decline and

worry about future losses, dependency on others, and the reactions of others to their

diagnosis (Reed & Bluethmann, 2008). Others fear losing their intellectual abilities

(Reed & Bluethmann), and, although not specific to the early stages of dementia,

embarrassing themselves because of their cognitive issues (e.g., forget who people are,

not being able to follow conversations; Ballard, Boyle, Bowler, & Lindesay, 1996). All

of these result in a perception of a lack of contribution to society (Reed & Bluethmann).

Feelings of insecurity and fear about the future may lead PwD to become

suspicious of the motives of others (e.g., financial abuse or exploitation due to their

memory loss; Snyder, 2007). As a result of their awareness of their cognitive losses and

feelings of insecurity, some PwD may overcompensate with hypervigilance and

misinterpret environmental stimuli as dangerous (Boyd et al., 2005). Unfortunately, there

is some truth to their suspicions as PwD are more vulnerable to exploitation than other

populations (Finkel, 1997; Snyder).

Depression may co-occur with dementia (Ferretti, McCurry, Logsdon, Gibbons,

& Teri, 2001; McCurry, Gibbons, Logsdon, & Teri, 2004; Orrell & Bebbington, 1996)

and result in loss of interest, dysphoria (Mega et al., 1996), impaired concentration,

fatigue, withdrawal, and memory impairment (Smith & Buckwalter, 2005), therefore,

worsening symptoms of dementia (Albert & Logsdon, 2000). Furthermore, anxiety has

been positively correlated with depression, irritability (Porter et al., 2003) and agitation in

PwD (Twelftree & Qazi, 2006). PwD who have higher levels of depression and anxiety

tend to have fewer strategies for coping with their diagnosis (Clare et al., 2006), likely

18

aggravating cognitive and BPSD (Albert & Logsdon). The treatment of comorbid

disorders, such as depression, in dementia are important as it may diminish some of the

negative symptomatology, allowing PwD to have the best QoL possible (Smith &

Buckwalter).

People with early stage dementia often live in the community or assisted living

facilities. Although not specific to early stage dementia, a pilot study examined PwD

and found that 20% of those who lived in dementia-specific assisted living and 100% of

those who lived traditional assisted living reported one or more symptoms of anxiety

(e.g., apprehensive expectation, unrealistic worry or fear; Smith et al., 2008). This

indicates that anxiety in PwD is prevalent in dementia-specific assisted living facilities,

but especially prevalent in those who live in traditional assisted living. A large

percentage (e.g., 70%) of PwD living in community settings also report symptoms of

anxiety (Teri et al., 1999) indicating this is a prevalent issue that needs to be addressed.

The cause of BPSD, such as anxiety, varies based on diagnosis (Finkel, 1997) and

personal factors. Gallo, Schmidt, and Libon (2008) found there was a significant

relationship between BPSD and dementia that indicated the higher the level of BPSD, the

more severe the degree of dementia. BPSD symptoms are distressing, frequent, and

costly (Finkel) and typically increase as the disease progresses in severity (Kilik et al.,

2008). If dementia-related anxiety is not addressed, it may lead to further physiological

symptoms (Webster & Grossberg, 2003) resulting in earlier institutionalization and

decreased QoL (Finkel, 2000).

Impact of Dementia Related Anxiety on Quality of Life

Anxiety symptoms, including persistent worries, feelings of tension, unexplained

physical sensations, and fearful thoughts (Smith et al., 2008) are common, negatively

influence the level of functioning of PwD (Finkel, 2000), and reduce the QoL of PwD as

well as that of their caregivers (Finkel, 1997; Shin et al., 2005; Smith et al.).

19

As mentioned earlier, certain dementia related anxiety symptoms arise when PwD

are unable to express their feelings, experiences, and personality (Snyder, 2007) and in

situations where the physical or social environments become too much for them to

manage (Hall & Buckwalter, 1987). This may cause PwD to avoid situations where the

environment is unfamiliar or where large groups of people will be attending (Snyder). As

a result, some activities that were once enjoyable to PwD may become stressful, and,

therefore, negatively influence their QoL.

It is important to establish a routine and to repeat daily tasks as it helps preserve

cognitive functioning (Clare et al., 2006; Van Dijkhuizen et al., 2006), reduces agitation

(Alzheimer’s Association, 2012), and provides PwD with feelings of independence and

self-esteem, therefore, increasing their QoL. The structure of daily tasks could become

monotonous to caregivers, however, since BPSD, such as agitation, negatively influence

the QoL of caregivers (Finkel et al., 1997; Shin et al., 2005; Smith et al., 2008), it is

likely the management of BPSD outweighs the boredom.

QoL is often affected by social support. The research regarding social support

and dementia related anxiety is somewhat equivocal. In one study, PwD who had high

levels of social contact were found to be more anxious than those with low levels of

contact (Orrell & Bebbington, 1996). The authors further state that this could be due to

interpersonal difficulties between their family members or continual reminders that they

are dependent on others. Furthermore, household tasks that PwD are still capable of

completing are taken over by others, which may create anxiety and feelings of

helplessness. This could lead to decreased independence and negatively interfere with

social functioning (Porter et al., 2003).

Van Dijkhuizen et al. (2006) found that supportive relationships seem to cushion

the effects of the memory loss and act as a source of emotional and practical support. At

times, PwD in this study were unable to complete tasks independently and relied on

family members to complete these tasks. This might be helpful in the short term but

20

could also become problematic if PwD rely on family members to complete tasks they

are able to accomplish. Other PwD in this study became distressed when they realized

they could not always rely on family members to assist them in daily living activities due

to other commitments (e.g., they have their own spouses and children to take care of).

This overreliance on family could lead to a decrease in QoL in PwD as they are no longer

involved in daily tasks and decisions that effect their lives. Also, some PwD are forced to

rely on family members who have been abusive and controlling in the past due to lack of

resources and support (Van Dijkhuizen, et al.). These factors could lead to premature

loss of autonomy, therefore, effecting PwD’s feelings of self esteem and self-worth

(Snyder, 2007).

Relationships may become strained when caregivers have unreasonable

expectations for PwD and become frustrated when PwD are not able to remember things

(e.g., plans, appointments; Sorensen et al., 2008). In addition, a study of women

diagnosed with Alzheimer’s disease, the women became distressed when they felt

disconnected from the past and could not remember important things, such as how many

children they had (Van Dijkhuizen et al., 2006). This combination of distress in both

caregivers and PwD could increase BPSD symptoms in PwD and decrease QoL in both.

Persons who have been diagnosed with mild dementia might refuse to participate

in social gatherings (Sorensen et al., 2008) because they worry about burdening their

families and friends with their needs (Snyder, 2007). They may have difficulty managing

the role changes that result from their diagnosis and feel as if they are no longer

contributing. As a result, they become shameful of their diagnosis and due to the

stigmatizing behaviors of others, may even try to hide it so others do not treat them

differently (Katsuno, 2005). This secrecy often causes people to withdraw or even isolate

themselves from others (Link, Mirotznik, & Cullen, 1991) leading to symptoms of

depression or anxiety, and increasing the severity of dementia symptoms (Albert &

Logsdon, 2000).

21

Other PwD may deny their diagnosis because they are able to remember

important things, such as the names of their children, and consequently avoid discussing

their diagnosis in order to decrease their anxiety symptoms (Van Dijkhuizen et al., 2006).

This could inhibit early medical interventions, which have the potential to reduce BPSD

symptoms and their negative effects on the QoL of caregivers and PwD (Gallo et al.,

2008).

Stigma of Dementia

Stigma

Goffman (1963) discussed three different types of stigma including physical

disabilities; individual “character” weaknesses such as mental illness or addiction; and

“tribal” stigma due to race, religion, or nation. These types of stigma negatively

influence the stigmatized person’s ability to fit in with other individuals who are seen as

“normal” and consequently, they are treated as less than human. This results in

discriminatory behavior toward the person who has been stigmatized and lessens their

chances of successful integration into society. When the person who has been

stigmatized reacts defensively to discrimination and stigmatization, “normal” individuals

respond by blaming the stigmatized person for their mental illness, physical disability or

race. This blame leads to further discrimination and stigma. As a result, the stigmatized

person becomes shameful of his/her disability, mental illness or race and becomes more

disconnected from “normal” society.

Voices of Alzheimer’s Town Hall Meetings

In 2008, Voices of Alzheimer’s held town hall meetings to discuss the

predominant concerns of people with early stage dementia (Reed & Bluethmann, 2008).

The main theme that arose as result of these meetings was the negative stigma of

dementia and how this influences PwD’s QoL. Society holds many misconceptions

22

about PwD in the early stages and assumptions are often made that PwD are dying and no

longer able to contribute to society. PwD expressed fear surrounding their diagnoses but

also desired support in preserving their current cognitive abilities and self-respect.

Attendees of the town hall meetings also reported the stigma of dementia had an effect on

their relationships and interactions with others (e.g., family, friends, colleagues, medical

staff) and they expressed a need to discover ways to improve these interactions (Reed &

Bluethmann). Some PwD felt they had lost the respect of others and their opinions were

no longer valued due to their diagnosis. They felt the stigma of the disease caused others

to treat them differently (e.g., as if incompetent) and even noted the loss of relationships.

As a result, PwD sometimes denied or even hid their diagnosis for fear of rejection from

others and social isolation.

PwD expressed a desire to be around others who had similar experiences but felt

frustration regarding the lack of support services (e.g., support and educational groups)

available to people in the early stages of the disease (Reed & Bluethmann, 2008). Many

also hoped to contribute to society through participating in research and public education

regarding their diagnosis; however, many reported experiencing barriers (e.g., eligibility

criteria) that often interfered. Finally, there was a strong need for PwD to actively

participate in and continue to enjoy their lives with the help of others.

The Voices of Alzheimer’s town hall meetings allowed PwD to express their

concerns and desires surrounding their diagnosis. The results of these meetings revealed

the impact stigma had on relationships and overall QoL of PwD and demonstrated the

importance of examining stigma related issues. It is important for society to address

misconceptions surrounding early stage dementia and understand that PwD retain many

of their abilities, are independent, and have a strong desire to contribute.

23

Impact of Stigma on Persons with Dementia

“The word stigma is often used to describe the way in which society stamps those

who have been mentally ill” (Cumming & Cumming, 1965, pp. 135-136). Stigma has a

powerful effect on people because of the emotional response it creates not only in the

person who is being stigmatized but those who are affirming it (Cumming & Cumming).

As demonstrated by the Voices of Alzheimer’s town hall meeting summary

report, when people hear the word dementia, they often have preconceived ideas and

misconceptions of what the diagnosis represents (Reed & Bluethmann, 2008). Some of

these negative ideas stem from the BPSD (e.g., memory loss, disinhibition) that often

elicit negative responses from others (Scheff, 1966). As a result, when society considers

the diagnosis of ADRD, society often envisions someone who has severe dementia and

labels them as lacking in independence, societal contribution, and cognitive skills (Clare,

2002). Our society places much emphasis on these labels and when someone is unable to

take care of themselves, they are often rejected. Labels of PwD begin when we are

children and are reinforced throughout adulthood, leading to negative self-stereotypes as

older adults (Scholl & Sabat, 2008).

Older people are underrepresented in the media and often portrayed as helpless,

impaired, weak, lazy, or less informed than younger people (Scholl & Sabat, 2008).

Furthermore, the media continues to portray negative images of dementia, influencing

societal views of the disease and older adults (Clare, 2002). As a result, when people

reach old age, they have internalized these stereotypes and begin to believe societal

attitudes (Scholl & Sabat).

People diagnosed with early stage dementia are aware of societal views and

stereotypes and as result, they become concerned about the responses of others (Snyder,

2007). Consequently, they become ashamed of their diagnosis (Katsuno, 2005), attempt

to cover up their symptoms (Katsuno; Reed & Bluethmann, 2008; Snyder) and

withdrawal from social groups (Clare, 2002; Snyder).

24

In a recent study, people who had been diagnosed with Alzheimer’s disease in the

early stages (n=22) were asked to name their diagnosis and most stated they had a

memory loss, two stated they had dementia, two stated they had Alzheimer’s disease, and

two were adamant they did not have Alzheimer’s disease despite the fact that this was

their diagnosis (Clare et al., 2006). Although a small study, most participants were

unable to admit they had Alzheimer’s disease and identified several consequences that

resulted from the diagnosis including frustration and anger, self-blame, embarrassment,

feeling cut off others, feeling useless, depression, feelings of loss, and feeling one would

rather be dead (Clare et al.). These consequences could be indicative of the stigma of the

disease and consequently influenced PwD’s QoL (Katsuno, 2005).

PwD are vulnerable to internalizing societal attitudes because they: are aware of

their losses; appropriately respond to these losses with sadness, frustration, and anger;

avoid situations where they may become embarrassed by their losses; and feel anxiety

when in situations where their cognitive deficiencies might become obvious (Scholl &

Sabat, 2008).

Societal labels and attitudes influence how PwD view themselves (Harris &

Keady, 2008). As a result, some researchers feel terminology such as successful aging,

resilience, or wisdom should be paired with the words dementia and Alzheimer’s disease

so society begins to develop positive attitudes toward the disease. It is important for

society to change negative terminology (e.g., loss, failure, or meaningless existence)

when discussing ADRD in order to develop a better understanding of the disease (Harris

& Keady). The intention is not to dismiss the seriousness of the disease but to

acknowledge the variability between PwD and encourage adequate public policy and

funding for the different disease stages (Harris & Keady).

25

Theoretical Framework

The theoretical model for the larger study was chosen by the principal

investigator, Dr. Burgener, Ph.D., APRN-BC, FAAN. The original graphic (Figure 1)

shown later in this chapter, explains the theoretical model and was also created by Dr.

Burgener. A graphic for the theoretical model for the study discussed in this paper

(Figure 2) is included in this chapter and was adapted to demonstrate the unique aspects

of the study.

The organizing framework for this exploratory study is Modified Labeling Theory

(MLT). MLT was developed by (Link et al., 1989) and builds on Scheff’s Labeling

Approach (1966). Scheff (1966) discusses the idea that when people are labeled because

of a mental illness, they are exposed to negative societal conceptions. The responses of

others cause persons with mental illness to internalize societal conceptions of the

meaning of mental illness and consequently, adopt the role of a person who is mentally

ill. This role becomes the person’s identity, making it difficult for them to develop a new

role in society. For example, the stigma of mental illness may cause individuals to have

difficulty finding employment, housing, or even marital opportunities, therefore,

increasing their vulnerability for relapse (Link et al., 1991).

Critics of labeling theory believe that labeling or stigma are not barriers to the

mentally ill but instead, it is their negative and socially deviant behaviors that create

barriers (Lehmann, Joy, Kreisman, & Simmens, 1976). However, supporters of MLT

state that stigma models written earlier fail to address the labeling behaviors in the

external environment and how these impact persons with mental illness (Sayce, 1998).

MLT goes beyond the internal process of stigma and includes the external factors

that influence beliefs and behaviors. As a result of socialization, individuals learn how

the mentally ill are viewed and internalize these views (Link et al., 1991). They are

aware that those who are labeled mentally ill may be devalued and seen as less

trustworthy or competent. This awareness does not matter until the individual becomes

26

labeled mentally ill. It is at this point that the label becomes personal and the individual

fears rejection. As a result, they look for ways to protect themselves from rejection and

utilize coping strategies including secrecy (Goffman, 1963), selective avoidance or

withdrawal, and education (Link et al.). Secrecy is when the stigmatized or labeled

individual tries to avoid rejection by hiding their diagnosis from those who might use it

against them (e.g., employers, landlords, friends, family, new acquaintances; Goffman).

PwD in the early stages are more easily able to hide their disease because their symptoms

are more invisible (Goffman). However, those who knew the PwD before their

diagnosis, might notice differences in the PwD’s behaviors or abilities and therefore,

negatively label PwD (Goffman). With selective avoidance and withdrawal, labeled

individuals surround themselves with people who accept them and limit their interactions

with those who might make judgments (Link et al.). This could lead to isolation and

limits their willingness to take risks in social and professional situations. Finally,

individuals might educate others about their disease in hopes of changing attitudes and

preventing rejection (Link et al.). These methods of coping were found to be ineffective,

caused individuals to limit their opportunities, and reinforced the idea that the mentally ill

were not fully competent.

Even after people have received treatment and their symptoms are under control,

they continue to feel stigmatized because of societal responses to the fact that they had

once been diagnosed and received treatment for mental illness (Link, Struening, Rahav,

Phelan, & Nuttbrock, 1997). As a result, individuals might experience continued

rejection and real discrimination (e.g., not being hired, put downs or slights, landlords not

renting to them; Link, 1987) causing them to continue to utilize ineffective methods of

coping with negative responses of others (e.g., secrecy, selective avoidance or

withdrawal, education; Link et al., 1997). They may remember past rejections, come to

expect rejection, and therefore, internalize the societal beliefs about mental illness (Link

et al., 1997). This internalization of societal attitudes leads to a decrease in confidence,

27

causes problems in social interactions, inhibits the individual’s ability to function socially

and occupationally (Link et al., 1989; Link et al., 1997; Miles, Burchinal, Holditch-

Davis, & Wasilewski, 1997) and negatively influences their QoL. Finally, the effects of

perceived stigma remain constant over time even when symptoms of mental illness have

decreased and treatment has been completed (Link et al., 1997).

With regard to employment and stigma, two studies in Australia examined

employment and chronic illness, including mental health (Comino et al., 2003; Yen,

McRae, Jeon, Essue, & Herath, 2011). Yen et al. found that people who had chronic

illness were less likely to be in the paid workforce and when compared to those without

chronic illness, were almost three times more likely to retire due to health related

concerns. Each chronic health issue diagnosed before the age of 50 often leads to a one

year reduction in employment (Yen et al.). Comino et al. found that individuals who

were unemployed tended to have higher levels of anxiety or other affective disorders. In

addition, people who were unemployed and had anxiety or other affective disorders, were

less likely to seek professional assistance for these issues (Comino et al.), therefore,

having a negative impact on their QoL .

According to Link’s (1987) conceptualization of the effects of the stigmatizing

process, there are four dimensions of perceived stigma including: social rejection,

financial insecurity, internalized shame, and isolation (see Figure 1). The effects of

perceived stigma in these four areas have been found to influence QoL across illnesses

(Fife & Wright, 2000; Link et al., 1997; Link et al., 1999; Miles et al., 1997; Steeman, de

Casterlé, Godderis, & Grypdonck, 2006).

Background variables unique to PwD may lead to stigmatizing responses from

others and perceived stigma in PwD (Burgener & Buckwalter, 2008). These background

variables may include personal and environmental factors such as: disease stage, mental

ability, gender, living situation, setting (e.g., urban or rural), ethnic background, and

caregiver knowledge of Alzheimer’s disease (Burgener & Buckwalter). These variables

28

will also be examined in the study discussed in this paper in order to determine if they

influence the relationship between perceived stigma and anxiety in PwD (see Figure 2).

Characteristics of PwD include mental deficits (e.g., cognitive impairment),

physical impairments (e.g., affects primarily older adults, loss of abilities; Reingold &

Krishnan, 2001), and social psychological issues that arise (e.g., perceived loss of self;

Kitwood, 1997). One or more of these issues could lead to stigmatizing responses from

others, resulting in perceived stigma, and decreased QoL (see Figure 2).

Stigmatizing responses of others are also important to consider when examining

stigma. These responses may include: labeling behaviors (e.g., not allowing PwD to

complete simple tasks once diagnosis is known); negative social interpretations (e.g.,

believe that PwD lacks independence or societal contributions; Clare, 2002); and

suboptimal health care (e.g., PwD not being listened to or taken seriously; Reed &

Bluethmann, 2008). Stigmatizing responses of others may lead to perceived stigma in

PwD including social rejection (e.g., friends, family, colleagues abandoning PwD),

internalized shame (e.g., feelings of embarrassment about their diagnosis), and isolation

(e.g., limiting social contact due to abandonment, fear of cognitive deficits being obvious;

Link et al., 1989). These factors all influence QoL outcomes.

Lawton (1983) examined QoL outcomes and developed domains that were helpful

in understanding the stigma of mental illness. The domains include: psychological well-

being (e.g., affective states such as depression and anxiety); behavioral competence (e.g.,

behavioral symptoms, personal control, physical health, self-esteem, cognition);

environment or interactions where the stigmatizing events may occur (e.g., social support

and activities). The combination of these domains represent the person’s overall QoL.

For purposes of the study discussed in this paper, only the QoL domains for

psychological well-being (e.g., anxiety) and environment or interactions where the

stigmatizing events may occur (e.g., social support) will be examined (see Figure 2).

29

Figure 1. Theoretical Model for Larger Study

Theoretical Model for the Current Study

This study examined some of the same issues included in the original study but

described the relationship between perceived stigma and anxiety in persons with

dementia in the early stages. It examined how background variables (e.g., disease stage,

mental ability, gender, living situation, urban or rural setting, ethnic background),

dementia characteristics (e.g., cognitive impairment, older adult population, ability loss,

perceived loss of self), and stigmatizing responses of others (e.g., labeling behaviors,

negative social interpretations, suboptimal health care) impacted PwD’s QOL outcomes,

specifically, anxiety level and social support.

30

Figure 2. Theoretical Model for the Current Study

Relationship Between Stigma and Anxiety in Persons with

Early Stage Dementia

As noted earlier, individuals in the early stages of dementia attended the

nationwide Voices of Alzheimer’s town hall meetings and reported the stigma of

dementia as a prominent concern (Reed & Bluethmann, 2008). Some of these concerns

seemed to result from the negative stereotypes and societal attitudes expressed towards

PwD (Clare, 2002; Scholl & Sabat, 2008). These stereotypes are powerful as they have

been reinforced in the media for years and influence how individuals feel about

themselves when they are labeled as someone diagnosed with dementia (Scholl & Sabat).

Individuals in the early stages of dementia are often aware of their deficits and

consequently, many experience symptoms of anxiety (Johansson & Gustafson, 1996;

Mega et al., 1996; Ownby et al., 2000). Some PwD report anxiety due to concerns about

how others might respond to their diagnosis (Reed & Bluethmann) and worries about

embarrassing themselves (Ballard et al., 1996). Others experience shame surrounding

31

their diagnosis and therefore, may deny the diagnosis exists (Clare et al., 2006), keep it a

secret, or withdraw from social situations completely (Link et al., 1991). This could lead

to social isolation, overdependence on family, and decreased QoL (Van Dijkhuizen et al.,

2006). BPSD, such as anxiety, often result in premature institutionalization (Hall et al.,

1995) and increased emergency room visits and hospitalizations, and increased health

care costs (Finkel, 2000).

This study examined all of the aforementioned issues and explored the

relationship between stigma and anxiety related to dementia which could affect PwD’s

QoL. This was an important topic as persons with early stage dementia expressed

concern about the impact stigma had on their QoL (Reed & Bluethmann, 2008).

Summary

A review of the literature on anxiety associated with dementia in the early stages

revealed that anxiety often occurs in PwD (Johansson & Gustafson, 1996; Mega et al.,

1996; Ownby et al., 2000) and is exhibited through fearfulness, irritability, paranoia,

motor restlessness, suspiciousness, or day and night disturbances (Starkstein et al., 2007;

Teri et al., 1999). Anxiety may be exacerbated as a result of unfamiliar situations

(Snyder, 2007), lack of routine (Clare et al., 2006; Van Dijkhuizen et al., 2006),

awareness of cognitive deficits (Reed & Bluethmann, 2008), or inability to express

feelings, experiences, or personality (Snyder). In addition, societal misconceptions (Reed

& Bluethmann) and labels about the disease may illicit negative responses from others

(Scheff, 1966). The stigma surrounding the disease may have an effect on how PwD

view themselves (Harris & Keady, 2008) and therefore, may influence their overall QoL

(Katsuno, 2005). Together, these studies suggest a need to further investigate anxiety

associated with dementia in the early stages. Chapter three will discuss how the relevant

variables set forth in the MLT model (e.g., subject characteristics, mental ability, disease

stage, perceived stigma, social support, anxiety in dementia) will be measured.

32

CHAPTER 3

METHODOLOGY

This chapter describes the methodology and research design of the study

discussed in this paper. First, participant criteria as well as recruitment strategies will be

discussed. Next, the measures utilized to determine anxiety level, perceived stigma,

disease stage, mental ability, and social support of persons with dementia (PwD) will be

described along with the psychometric properties of each. Finally, statistical analysis will

be presented. All methods and procedures for this study were IRB approved.

Participants

Participant criteria and recruitment procedures were developed in the larger

research study by primary investigators Sandy Burgener, Ph.D., APRN-BC, FAAN and

Kathleen Buckwalter, Ph.D., FAAN and were later adapted to increase participant

numbers. The IRB approved inclusion criteria for participants was:

An adult with a diagnosis of early stage (within one year) of Alzheimer’s disease

and other related disorders (ADRD), using standard diagnostic criteria. In this

study, related disorders were defined as vascular dementia, mixed types of

dementias (Alzheimer’s Disease and vascular), and frontotemporal lobe dementia.

PwD must have presented with a Mini Mental Status Exam (MMSE) score of

greater than 15 in order to participate. PwD who had been diagnosed with Lewy

body dementia were excluded from this study.

PwD had to live in the community such as their own home or assisted living.

PwD who lived in long term care facilities, such as nursing homes, were excluded

from this study.

PwD had to have a close family member caregiver who was also willing to

participate in the study. Caregivers must have been non-paid, had a minimum of

three weekly contacts with the PwD, and over the age of 21.

33

PwD had to be willing to commit to participating in an 18-month study. This

criterion was not applicable to the study discussed in this paper because data was

examined a year after baseline.

There had to be a family member caregiver of the PwD who qualified to

participate and was willing to commit to an 18-month study. This criterion was

also not applicable to the study discussed in this paper because caregiver data was

not examined.

At the Iowa site, subjects were recruited through two specific clinics at University

of Iowa Hospitals and Clinics (UIHC). These clinics included the Memory Disorders

clinic in the Department of Neurology and the Geriatric Assessment Clinic. Staff from

the UIHC clinics identified potential participants from their patient base and referred

them to the research team based on study criteria. Potential participants were given a

description of the study, study brochure, and research team contact information. If

interested, participants contacted research team members. Participants were also

recruited through the STAR Registry which was located in the Center for Aging at the

University of Iowa and included a database of Iowans over the age of 50. The

individuals included in this database indicated an interest in volunteering for research

studies and lived within a two-hour driving radius of Iowa City. Brochures were placed

in diagnostic centers, community settings, doctor’s offices, and agencies (e.g.,

Alzheimer’s Associations, assisted living communities, visiting nurses, parish nurses,

senior centers, Veteran’s Affairs hospitals) in South East and Central Iowa where

potential participants might frequent. The primary investigator in Iowa, Dr. Buckwalter,

also provided various presentations on dementia and other related illnesses and discussed

the study at assisted living facilities, senior centers, and area chapters of the Alzheimer’s

Association.

This was a multi-site study so participants were also recruited and data collected

in the Illinois and North Carolina areas. The same recruitment strategies (e.g., clinics,

34

community settings, senior centers) were utilized at the Illinois and North Carolina sites.

Dr. Burgener oversaw the recruitment and IRB modifications for the Illinois and North

Carolina sites. Training on how to: conduct the meetings with participants; appropriately

administer and score the tools; conduct the qualitative interviews and record answers; and

store data was completed by Dr. Burgener and Dr. Buckwalter. Dr. Burgener visited each

site to observe research assistants with participants and ensure consistency and ability to

administer tools in a standardized manner. Quarterly phone conferences among sites

were held to discuss research related issues and ensure consistency in administration of

study procedures.

When participants called research team members to determine their eligibility, the

type of referral was determined (e.g., UIHC referral or self-referrals from the STAR

Registry or other community settings and agencies). A phone log of recruits (see

Appendix A) was utilized to ensure that study criteria are met. If there was any concern

about an ADRD diagnosis, potential participants were asked to obtain further diagnostic

information from their provider. Participant status was reexamined at each six month

visit and if there were any changes in diagnosis or cognitive ability, further information

was obtained to determine if study criteria were still met.

Procedure

This study was longitudinal in nature and data was collected over a period of

eighteen months at six month intervals: baseline (Time 1: T1), 6 months (Time 2: T2), 1

year (Time 3: T3), 18 months (Time 4: T4)). For purposes of the study discussed in this

paper only data from a six month timeframe (e.g., T2, T3) was utilized as some

participants were not able to complete the anxiety measure (RAID) at the baseline visit.

As noted earlier, it was a multi-site study with data collected in Iowa, Illinois, and North

Carolina. The different sites assisted in gathering data from participants in both rural and

35

urban areas and various ethnic backgrounds in an effort to make the sample more diverse

and the results more generalizable.

Once it was confirmed that participants met study criteria, a data collection

interview was scheduled. When collecting data, research assistants went to the homes of

participants. One research assistant interviewed the PwD, while the other research

assistant interviewed the caregiver. Interviews were conducted in different rooms or

areas of the home to ensure confidentiality. Tools and qualitative interviews were

administered face-to-face. Printed scale response sheets were utilized as prompts to

answers on the tools (these sheets were printed in large type to ensure participants could

easily see the possible responses). If one of the researchers and participant (caregiver or

PwD) completed the interview before the other dyad, the researcher would then check on

the progress of other dyad. If the other dyad was not finished, the researcher and

participant who were finished, would then interact (e.g. talk about participant’s family,

take a tour of living facility) in order to ensure the other dyad was not disturbed. Data

collection meetings took approximately 100 to 120 minutes to complete.

During the initial meeting (T1), the consent process was completed and the

consent to treatment form was signed by the PwD and caregiver. The consent process

was completed with the PwD and caregiver in the same room. This allowed for an

opportunity to discuss questions or concerns about the study. Since capacity to consent

could be an issue with this population, an additional form, Evaluation to Sign an

Informed Consent (see Appendix B), was administered in the first meeting (T1) which

included a set of questions that examined the PwD’s understanding of the consent

document. This document required the researcher to verbally ask PwD to explain the

risks of the study, what they would do if they no longer wanted to participate, and what

they would do if they felt distress or discomfort during the study. If PwD appeared

unable to provide adequate responses to the questions, it was the researcher’s

responsibility to inform the PwD that they were unable to participate in the study. This

36

form was also completed with the caregiver present. Due to the slow moving nature of

ADRD and early stage dementia symptomatology (e.g., mild impairment in memory and

verbal expression; Brechling & Schneider, 1993), most participants were adequately able

to understand the study and consent form and remained able to provide informed consent

throughout the study.

After the consent form (see Appendix C) was completed, the PwD and caregiver

were separated into separate areas. This study focuses only on the tools administered to

the PwD . The Demographic Data Form (see Appendix D) was completed. In many

cases, the Demographic Data Form form was completed by the caregiver, mostly because

the caregivers did not have as many instruments to complete during the visit. The PwD

then completed the Mini-Mental State Exam (MMSE), Clinical Dementia Rating Scale

(CDR), Stigma Impact Scale: PwD, Geriatric Depression Scale, Mastery Scale, Medical

Outcomes Study: Physical Health Subscale (MOS-36), Rosenberg’s Self Esteem Scale,

Duke Social Support Index, Recreational and Social Activities, Rating Anxiety In

Dementia (RAID), and an open-ended interview. For purposes of this study, only data

from the Demographic Data Form, MMSE, CDR, Stigma Impact Scale, Duke Social

Support Index, and RAID were utilized. The research questions for this study examined

the relationship between perceived stigma and level of anxiety in persons with dementia

in the early stages of the disease, how this relationship changed over time, and how these

issues were affected by subject characteristics including social support, demographic

variables, stage of the disease and mental ability. These instruments were chosen in order

to address all areas of the theoretical model of the study discussed in this paper (e.g.,

background variables: MMSE, Demographic Data Form; PwD characteristics: CDR;

perceived stigma and stigmatizing responses of others: SIS; PwD QoL outcomes: RAID,

Duke Social Support).

Fatigue of participants was monitored throughout the visit and if it was

determined a participant was too tired to continue (e.g., reported being tired, was unable

37

to concentrate, was easily distracted, became fidgety or anxious), another visit was

scheduled to complete the data collection.

During data collection, each participant was assigned a participant number in

order to ensure confidentiality. A master code list with participant names and

corresponding numbers was stored separately from data so researchers were able to

contact participants every six months to schedule the next visit. Client files were kept at

the College of Nursing in a locked file cabinet inside a locked office and were accessible

only to research staff. Data files were stored on the College of Nursing server which was

password protected and met the guidelines of the Iowa Human Subjects office.

Measures

In order to gather information about perceived stigma, level of anxiety in PwD,

demographic variables, social support, stage of the disease and mental ability, the

following tools were utilized and were approved by the University of Iowa Human

Subjects Office.

Subject Characteristics (Demographic Data Sheet)

The demographic data sheet included things such as living arrangement, race,

education level, length of time participant was diagnosed with dementia, gender, and

marital status. This information was often filled out by the caregiver during the first visit

as the amount of paperwork they completed was much less than the PwD. If the

caregiver was unavailable, the demographic data sheet was completed by the PwD. Any

changes that occurred at each six month visit were recorded in the database.

Mental Ability (Mini-Mental Status Exam)

The Mini-Mental Status Exam (MMSE) was administered to measure mental

ability. Participants had to have an MMSE of score of greater than 15 in order to

participate in the study. The MMSE was re-administered at each data collection point to

38

ensure participants' scores were >15 and met inclusion criteria. The MMSE was

developed by Folstein, Folstein, and McHugh (1975) and was an 11 question measure

that was completed in five to ten minutes. Questions on the MMSE included things such

as asking today’s date. There were also behavioral tasks to be completed like asking the

PwD to follow a three stage command. The maximum score was 30 and a score of lower

than 23 indicated cognitive impairment. The range in scores is 0 to 30. The MMSE has

been used as a screening tool in research and clinical settings for over 30 years and was a

valid and reliable measure of mental ability (Folstein et al.; Foreman, 1987). The MMSE

was brief (Folstein et al.), accurately discriminated between dementia and depression, and

determined the level of cognitive impairment (Foreman). The test-retest reliabilities were

in the moderate to high range and ranged from .80 to .95 (Tombaugh & McIntyre, 1992).

Criterion validity measures demonstrated high sensitivity in most studies (e.g., at least

87%) for moderate to severe levels of dementia (Tombaugh & McIntyre). MMSE scores

correlated highly with other types of cognitive screening tests (e.g., -0.66 to -0.93) and

demonstrated construct validity (Tombaugh & McIntyre).

Disease Stage (Clinical Dementia Rating Scale)

The Clinical Dementia Rating Scale (CDR) measured participants’ stage of

disease and had six categories including memory, orientation, judgment and problem

solving, community affairs, home and hobbies, and personal care (Hughes, Berg,

Danzinger, Coben, & Martin, 1982). The purpose of the CDR was to examine cognitive

decline over time (Hughes, Berg, Danzinger, Coben, & Martin, 2008). The CDR had a 0

through 3 scoring system and each of the six categories was scored based on the

following scale: 0 = Healthy; 0.5 = Questionable Dementia; 1 = Mild Dementia; 2 =

Moderate Dementia; and 3 = Severe Dementia. The joint reliability for the overall CDR

global scale ranged from .87 to .96 (Hughes et al., 2008). When the CDR was used with

patients with Alzheimer’s disease and a control group of psychiatrically healthy persons,

39

the joint reliability for the overall CDR scale was 0.77 and reliability for individual

domains ranged from 0.67 to 0.77 (Hughes et al., 2008). In a sample of older adults

(N=656), the CDR had 92% sensitivity and 94% specificity for detecting clinically

diagnosed dementia (e.g., based on the DSM-III; Hughes et al., 2008).

Perceived Stigma (Stigma Impact Scale)

Perceived stigma was measured through use of the Stigma Impact Scale (SIS).

The SIS was developed and tested by Fife and Wright (2000). Their conceptualization of

stigma was grounded in Modified Labeling Theory (MLT; Link, 1987), the theoretical

framework for the study discussed in this paper, and the scale was divided into four

categories (e.g., Social Rejection, Financial Insecurity, Internalized Shame, Social

Isolation; Fife & Wright) reflective of this conceptual framework. Social rejection

measured individual’s feelings of being discriminated against by others in society.

Financial insecurity discussed financial problems individuals might experience as a result

of their memory loss. Internalized shame explored how much social rejection and

financial issues impacted individuals’ feelings about themselves and how they interacted

with others. Social isolation addressed feelings of loneliness, inequality, and uselessness.

The Cronbach alpha coefficients for the four categories ranged from an .85 to .90 internal

consistency reliability (Fife & Wright). These four dimensions of stigma were related,

however, they measured different aspects of stigma as indicated by correlations ranging

from .28 to .66 (Fife & Wright).

This measure was adapted for PwD and was pre-tested in a pilot study for use in

the larger study (Burgener & Berger, 2008). To make the SIS more fitting for the larger

study, some wording was changed such as, “Some family members have rejected me

because of my diagnosis of HIV” was changed to “Some family members have rejected

me because of my impairment.” The internal consistency for the pilot study had a

Cronbach’s alpha of .89, indicating good reliability for this measure. Significant

40

correlations with disease related variables (e.g., mental ability, social rejection,

internalized shame, social isolation, depression) were found in the expected directions

indicating adequate validity of the scale. The SIS yielded a total score that ranged from 0

to 96 with higher scores indicating higher perceived stigma.

Social Support (Duke Social Support Index- 23 Item)

To measure social support the abbreviated version of the Duke Social Support

Index -23 item (DSSI) was used. The DSSI was shortened to more effectively meet the

needs of chronically ill and frail elderly individuals (Koenig et al., 1993). The scale

included four open ended questions to determine how much social interaction participants

had in the last week. It also examined instrumental support and asked questions about

how family and friends provided assistance. Subjective support questions examined how

the participant felt about their role within the family or with friends. In order to shorten

the scale, the original 10-item subject support subscale was factor analyzed and the seven

items with the largest factor coefficients from the sick elderly group were used in the new

scale (Koenig et al.). The internal reliability for subjective support in the sick elderly

population was .71 as measured by Cronbach’s alpha indicating it reliably measured the

construct (Koenig et al.). All of the original questions in the instrumental support section

were retained except a question that asked about needing assistance with small children

as it was not relevant to the elderly population under study (Koenig et al.). The Duke

Social Support Index yielded a total score so that the higher the score, the higher the level

of social support. The range of scores was 19 to 76.

Anxiety Level (Rating Anxiety in Dementia)

The Rating Anxiety in Dementia (RAID) scale was used to measure anxiety levels

in persons with dementia. This scale was created in order to address some of the

confusion about the symptoms of anxiety and dementia and was the only

psychometrically validated rating scale specifically designed to assess anxiety in

41

dementia (Shankar, Walker, Frost, & Orrell, 1999). The RAID was designed to be

completed by caregivers or clinicians based on their observations of PwD’s behaviors

over a two week period. In this study, the RAID questions were answered by PwD. The

RAID was utilized with PwD in a previous study by Dr. Kathleen Buckwalter (K.C.

Buckwalter, personal communication, August 5, 2009) and procedures used in this study

will be discussed further at the end of this section. The following psychometric

properties are based on the RAID when utilized with caregiver and clinician responses.

RAID measured PwD’s anxiety over the previous two weeks and was divided into

six sub-groups (e.g., worry, apprehension and vigilance, motor tension, autonomic

hyperactivity, phobias, and panic attacks, however, phobias and panic attacks were not

included in the total score (Shankar et al., 1999) . Each question was rated based on four

different grades: absent, mild or intermittent, moderate, and severe. The worry category

measured the level of worry about various things (e.g., physical health; cognitive

performance). Apprehension and vigilance measured things such as sleep disturbances,

autonomic arousal, and irritability. Motor tension (e.g., trembling, headaches) was

examined because the concepts of anxiety and motor tension seemed to be related

(Yesavage & Taylor, 1991). Autonomic hyperactivity symptoms (e.g., palpitations, dry

mouth) were often reported by PwD and were related to anxiety. Phobias were also

reported in people over the age of 65, and this section of the tool addressed specific fears.

The section on panic attacks discussed the severity of symptoms of panic and asked PwD

to describe their symptoms.

Reliability analysis for the RAID examined its internal consistency, inter-rater

reliability, and test-retest reliability. High internal consistency was found as indicated by

a Cronbach’s alpha of 0.83 (Shankar et al., 1999). In addition, alpha was calculated for

each subgroup in order to determine whether individual subgroup items were equally

affected by the PwD’s anxiety status (e.g., worry: alpha = 0.65; apprehension and

vigilance: alpha = 0.67; motor tension: alpha = 0.51; autonomic hyperactivity: alpha =

42

0.74; Shankar et al.). Inter-rater reliability kappa values ranged from 0.51-1.0 on

individual items and overall agreement ranged from 82% to 100% (Shankar et al.). In

terms of test-retest reliability, kappa values ranged from 0.53 to 1.0 and the overall

agreement ranged from 84% to 100% (Shankar et al.).

The validity analysis of the RAID included an examination of content, concurrent,

criterion validity, and construct validity. Content validity was examined by 24

individuals including five psychiatrists, one clinical psychologist, three community

psychiatric nurses, five caregivers, and nine staff nurses. Most (n=14) thought all of the

items on the RAID were important (Shankar et al., 1999). Others (n=4) thought sleep

disturbances, trembling, and restlessnessness, might overlap with other medical

conditions (Shankar et al.). There were various concerns with the phobias and panic

attack sections (Shankar et al.). Some (n=7) thought the explanation given for phobias

and panic attacks was inadequate, while others felt these categories should not be

included in the total score because they were in a different diagnostic category (n=3).

Finally, three individuals thought the reliability of assessing autonomic hypersensitivity

symptoms and panic attacks was questionable.

Spearman’s correlation coefficient was calculated between RAID and the

caregiver’s ratings of PwD’s anxiety (0.66) and the consultant’s ratings of anxiety (0.73)

to determine concurrent validity (Shankar et al., 1999). Spearman’s correlation

coefficient was also calculated between the RAID and the Anxiety Status Inventory

(0.62), Clinical Anxiety Scale (0.54), and the Cornell Scale for Depression (0.69;

Shankar et al.).

In order to examine criterion validity, Mann-Whitney U was calculated for

independent samples based on modified DSM-IV criteria and clinical impression. This

demonstrated that the RAID distinguished between groups of low and high anxiety based

on the DSM-IV criteria (U=22.5; p<0.006) and a consultant’s clinical impressions

(U=31.5; p=0.03; Shankar et al., 1999). PwD determined to have clinically significant

43

anxiety had higher mean scores on the RAID (M=15.07, SD=8.9) than those without

anxiety (M=7.55, SD=5.5 Shankar et al.).

This scale has strong construct validity through factor analysis (Shankar et al.,

1999). The items on the scale were inserted into a factor analysis which resulted in a five

factor structure that included all 18 items of the scale (phobias and panic attacks were not

included; Shankar et al.). All 18 items made a contribution to the variance and each of

them was a component of the five factors (Shankar et al.), indicating that all of the items

on the scale were needed and inclusive of a range of anxiety signs and symptoms

(Shankar et al.).

The RAID was based on the total score of items 1 to 18 (Shankar et al., 1999).

The total score ranged from 0 to 54 and a score of 11 or more indicated significant

clinical anxiety (Shankar et al.). Evaluators of the RAID instrument determined that

phobias and panic attacks were distinct syndromes, and therefore, should not be included

in the total score (Shankar et al.).

As mentioned earlier, the original RAID was utilized by caregivers and clinicians

who observed PwD’s anxiety related behaviors and then answered the questions on the

scale (Shankar et al., 1999), however, for the purposes of this study, the RAID questions

were answered by PwD. In a NIH-funded study, Treatment Strategies for ADRD-

Related Anxiety in Assisted Living Facilities, conducted by Dr. Kathleen Buckwalter, the

RAID was utilized with PwD in the early stages of the disease who lived in assisted

living facilities and scale questions were answered by PwD (K. Buckwalter, personal

communication, August 5, 2009). In order to determine validity of the scale’s usage with

PwD, staff caregivers (n=9) from two assisted living facilities in the Midwest completed

the RAID scale while acting as observers of the PwD (Buckwalter). The ratings between

the staff caregivers and PwD were found to have high correlations (range = .76 to .83),

indicating adequate validity (Buckwalter). In addition, the RAID was compared to the

Neuropsychiatric Inventory (NPI) anxiety subscale scores for these same nine PwD.

44

Correlations ranged from a low of .62 for one subject, and from .69 to .81 for the other

eight subjects (Buckwalter). In the study discussed in this paper, if the investigator

determined the PwD was unable to respond accurately to the RAID, a caregiver rating

was substituted and this was noted in the research record.

Data Analysis Procedure

Data analysis was conducted for each research question according to the

following procedures:

Research Question 1: What is the relationship between perceived stigma and

level of anxiety in persons with dementia in the early stages of the disease?

This question was answered utilizing Pearson Product-moment Correlations.

Plots were examined to determine if there was a linear relationship between the two

variables. Data from visit two (T2) was examined to answer this question.

Research Question 2: Does the relationship between perceived stigma and level

of anxiety in persons with dementia in the early stages of the disease, change over six

months, and if so, in what direction?

This research question was answered by comparing correlations over time. A

95% confidence interval was found for each correlation and then the confidence intervals

were compared. Data from visit two (T2) and visit three (T3) were examined to answer

this question.

Research Question 3: Is the relationship between perceived stigma and anxiety

affected by subject characteristics including social support, demographic variables

(length of disease, PwD education level, race, site, gender), stage of the disease and

mental ability?

This question was answered through mediation analysis. There were four steps in

establishing the mediation model (Baron & Kenny, 1986; Judd & Kenny, 1981). The

first step was the independent variable (stigma) must be significantly correlated with the

45

dependent variable (anxiety). If step one was passed, then in step two, there had to be a

significant relationship between the independent variable (stigma) and the mediator

variable (demographic variables (e.g., race, gender, location), mental ability, stage of

disease). In step three, a relationship between the mediator and the dependent variable

(anxiety) had to be demonstrated. Since the relationship between the mediator and

dependent variable may be caused by the independent variable, the independent variable

must be controlled in this step. Step four determined if the mediator completely mediated

the relationship between the independent variable (stigma) and dependent variable

(anxiety). If the mediator was controlled and there was no relationship between the

independent variable (stigma) and dependent variable (anxiety), then complete mediation

has taken place. If the first three steps were met, then partial mediation occurred. Data

from visit two (T2) was analyzed in order to answer this question.

The following table summarizes the basic methodology of the research study

discussed in this paper.

46

Table 2. Summary of Basic Methodology of Study

Research Questions How Measured Analysis Plan

What is the relationship

between perceived stigma

and level of anxiety in

persons with dementia in

the early stages of the

disease?

Perceived Stigma

(Stigma Impact Scale)

Anxiety Level (Rating

Anxiety in Dementia)

Pearson Product

Correlation

Does this relationship

between perceived stigma

and level of anxiety in

persons with dementia in

the early stages of the

disease, change over six

months, and if so, in what

direction?

Perceived Stigma

(Stigma Impact Scale)

Anxiety Level (Rating

Anxiety in Dementia)

*Measured over a six

month period

Comparing correlations

over time

Compare 95%

confidence intervals of

each correlation

Is the relationship between

perceived stigma and

anxiety affected by subject

characteristics including

social support, demographic

variables (length of disease,

PwD education level, race,

site, gender), stage of the

disease and mental ability?

Perceived Stigma

(Stigma Impact Scale)

Anxiety Level (Rating

Anxiety in Dementia)

Subject Characteristics

(Demographic Data

Sheet)

Stage of Disease

(Clinical Dementia

Rating Scale)

Mental Ability (Mini-

Mental Status Exam)

Social Support (Duke

Social Support Index)

Mediation analysis

Summary

Chapter three described the research methodology including participants,

procedures, measures, and data analysis that provided answers to the specific aim and

research questions. Chapter four describes the characteristics of study participants and

reports results of the study.

47

CHAPTER 4

RESULTS

This chapter describes the characteristics of the study participants and the results

of the statistical analysis. The results of the research questions are given sequentially.

All data were collected and analyzed with the computerized statistical program, SPSS

version 19.

Characteristics of the Study Participants

The data in this portion of the results includes only visit two (T2) and three (T3).

No baseline (T1, N = 50) data are included because the RAID was added to the

instrument battery after baseline data were collected. Question one and three utilize data

from T2 while, question two utilizes data from T2 and T3. Seven participants were lost

to follow-up between T1 and T2, thus, a total of 43 PwD (N=43) were included in the

analysis. The Illinois site had 21 participants, Iowa 12 participants, and North Carolina

had 10 participants. There was almost equal distribution between females (n=22) and

males (n=21). There were more Caucasian/White participants (n=28; 65.12%) than

Black or African American participants (n=15; 34.88%). The average educational level

of PwD was 13.3 years, indicating approximately a year beyond high school education.

Finally, the mean length of time with a diagnosis of dementia was 12.9 months. The

number of participants for the variable “length of time with diagnosis” was different than

the rest of the data (N=40), due to missing data from three participants. These three

participants were nonetheless kept in the overall data set because length of diagnosis was

not a central variable of analysis. Table 3 demonstrates Characteristics of the Study

Participants in detail.

48

Table 3. Characteristics of the Study Participants

Variables of PwD Frequency (%) or Mean (SD)

Geographic Location

IL 21 (48.84%)

IA 12 (27.91%)

NC 10 (23.26%)

Gender

Female 22 (51.16%)

Male 21 (48.84%)

Race

White/Caucasian 28 (65.12%)

Black/African Am 15 (34.88%)

Education (year) 13.3 (SD = 3.93)

Length of Diagnosis (months)* 12.9 (SD = 12.10)

Note: * IL = Illinois; IA = Iowa; NC = North Carolina; Length of Diagnosis was missing from three participants N=40. For all other data N=43.

Results Presented by Research Questions

Research Questions #1: What is the relationship between perceived stigma and

level of anxiety in persons with dementia in the early stages of the disease?

A Pearson Correlation was calculated to determine the relationship between

perceived stigma and anxiety levels at visit two (T2). The Rating Anxiety in Dementia

(RAID) scale was used to measure anxiety levels and the Stigma Impact Scale (SIS) was

used to measure perceived stigma. Table 4 demonstrates means and standard deviations

49

for these two scales in visit two and visit three. The means for perceived stigma in visit

two (T2) and visit three (T3) were similar (STIGMA2: M = 39.93; SD = 10.33;

STIGMA3: M = 39.94; SD = 9.89). In a pilot study, Burgener and Berger (2008)

adapted the SIS to better meet the needs of persons with progressive neurological

diseases and the SIS was given to participants who had been diagnosed with Alzheimer’s

disease, the mean of this group was 42.7 (SD = 9.0). The mean for perceived stigma in

the study discussed in this paper was similar but slightly lower than the mean of Burgener

and Berger’s pilot study. The standard deviation in Burgener and Berger’s pilot study

was also similar to the study discussed in this paper but slighty lower. The pilot study

(Burgener & Berger) had 26 participants who had been diagnosed with Alzheimer’s

disease, while the study discussed in this paper had more participants (T2: N=43; T3:

N=34). The differences between means and standard deviations might be due to

differences in samples sizes.

There was a significant decrease (p=.03) in mean anxiety levels in visit two (T2)

and visit three (T3). (RAID2: M = 8.79; SD = 8.80; RAID3: M = 7.36; SD = 6.78). In

the original study that created the RAID, the RAID was given to 83 participants and the

mean total score was 9.3 (SD = 7; Shankar, et al., 1999). The means in this study are

below the mean in Shankar’s study, however, the standard deviation in this study’s

second visit (RAID2) is larger than Shankar’s standard deviation, while the standard

deviation of the third visit (RAID3) is less than the standard deviation in Shankar’s study.

These differences may be due to the small sample size of this study (T2: N=43; T3

N=33), while Shankar’s study has more participants (N= 83).

PwD’s perceptions of stigma were, at visit two (T2), significantly moderately

positively associated with anxiety levels (r=.35, p=.022) at the .05 level. As perceived

stigma increased, the anxiety levels of PwD also increased.

50

Research Question #2: Does the relationship between perceived stigma and level

of anxiety in persons with early stage dementia, change over six months, and if so, in

what direction?

A Pearson Correlation was calculated to determine the relationship between

perceived stigma (SIS) and anxiety levels (RAID) in PwD at visit two (T2) and visit three

(T3). As mentioned earlier, in visit two (T2), PwD’s perceptions of stigma were

significantly associated with anxiety levels (r=.35, p=.022) at the .05 level. Visit three

(T3), indicated that there was a significant correlation between PwD’s perceptions of

stigma and anxiety levels (r = .54, p = .001) at the .05 level. In both visit two (T2) and

visit three (T3) the correlations indicated as perceived stigma increased, anxiety levels in

PwD increased. The 95% confidence intervals were compared between T2 and T3 to

determine if correlations between PwD’s perceptions of stigma and anxiety levels

changed over time. Table 5 demonstrates that the confidence intervals of T2 and T3

overlapped (T2: 95% CI= (0.05, 0.59); T3: 95% CI = (0.24, 0.74), so it could not be

concluded that the correlation changed from T2 to T3.

51

Table 4. Sample size, Mean, and Standard Deviations for Perceived Stigma and Anxiety Visit 2 (T2) and Visit 3 (T3)

Visit Variable N Mean SD

T2 RAID2 43 8.79 8.80

T2 STIGMA2 43 39.93 10.33

T3 RAID3 33 7.36 6.78

T3 STIGMA3 34 39.94 9.89

Note: RAID2 = Rating Anxiety in Dementia Visit 2; STIGMA2 = Stigma Impact Scale Visit 2; RAID3 = Rating Anxiety in Dementia Visit 3; STIGMA3 = Stigma Impact Scale Visit 3

Table 5. Pearson Correlation Statistics for Perceived Stigma and Anxiety Visit 2 (T2) and Visit 3 (T3)

Visit N Sample

Correlation

95% CI p value

T2 43 r = .35 (0.05, 0.59) 0.022*

T3 33 r = .54 (0.24, 0.74) 0.001*

*p < 0.05

Research Question #3: Is the relationship between perceived stigma and anxiety

affected by subject characteristics including social support, demographic variables, stage

of the disease and mental ability?

52

Multiple regression analysis was used to assess whether social support,

demographic variables (length of disease, PwD education level, race, site, gender), stage

of disease (CDR), or mental ability (MMSE) mediated the relationship of perceived

stigma on anxiety. The data from visit two (T2) were utilized for this analysis. Each of

the variables (social support, demographic variables, stage of disease, mental ability) was

examined individually for a relationship with anxiety level. The variables gender

(female, male), site (Iowa, Illinois, North Carolina), and race (White/Caucasian; African

American/Black) were dummy coded. Site has three possible variables so two dummy

variables were created (IA is 1 if the site is Iowa, 0 if it is something other than Iowa; NC

is 1 if the site is North Carolina and 0 if it is one of the other sites).

There was a correlation of .35 (p=.03) between the outcome variable (anxiety) and

the predictor variable (stigma). Since there was a relationship between the dependent

variable (anxiety) and the independent variable (stigma), Baron and Kenny’s (1986) first

step in the meditational model was passed. Next, each mediating variable (social

support, demographic variables (length of AD, PwD education level, race, site, gender),

stage of disease (CDR), or mental ability (MMSE) was examined individually to see if it

had a significant relationship with the independent (predictor) variable (stigma). Two of

the demographic variables, race (African American/Black) and site (North Carolina)

passed this stage and were found to be significantly associated with stigma (predictor

variable).

Race (African American/Black) and stigma had a correlation of .47 (p=.002)

indicating that African American/Black PwD reported higher levels of anxiety than

whites. Next, race (African American/Black) was included in the regression analysis

with the independent variable (stigma) to determine if there were any significant changes

in the relationship between the independent variable (stigma) and the dependent variable

(anxiety). When regression analysis was used to test African Americans as a possible

mediator, the independent variable (stigma) was still significant (p= .009) and race

53

(African American/Black) was not significant (p = .200). This indicated that race

(African American/Black) was not a mediating variable according to the Baron and

Kenny (1986) method.

Site and stigma showed a correlation of -.48 (p=.002) indicating that subjects in

the North Carolina sample reported significantly less anxiety than subjects in the other

two site samples (Iowa and Illinois). Site (North Carolina) was then included in the

regression analysis with the independent variable (stigma) to establish if the relationship

between stigma (independent variable) and the anxiety (dependent variable) changed.

When site was tested as a possible mediator using regression analysis, the independent

variable (stigma) was no longer significant at p < .05 (p = .062) and North Carolina was

also not significant (p = .776), indicating that North Carolina was not a mediating

variable.

Both of these potential mediator variables (race and site) were found not to be

significant when included in a model with perceived stigma. Thus, there was insufficient

evidence to conclude that either variable mediates the relationship between perceived

stigma and anxiety. However, due to the small sample size, it is difficult to determine

conclusive findings.

Summary

Chapter four reported the results of the statistical analysis of the study. There

was a significant relationship between perceived stigma and anxiety levels in PwD,

indicating at visit two, that as perceived stigma increased, so did anxiety levels in PwD.

There was a significant correlation between perceived stigma and anxiety in both visit

two (T2) and three (T3). However, when 95% confidence intervals were compared

between T2 and T3, the confidence intervals overlapped, so it could not be concluded that

the relationship between perceived stigma and anxiety levels changed over time.

Finally, it could not be concluded that social support, demographic variables, stage of

54

disease, or mental ability mediated the relationship between perceived stigma and

anxiety. Chapter five discusses the study findings, limitations, suggestions for future

research, and clinical implications for counseling psychologists.

55

CHAPTER 5

DISCUSSION

This chapter examines and discusses the results, limitations of the study, and

recommendations for future research.

Overview of Study and Findings

The purpose of this study was to examine the relationship between perceived

stigma of persons with early stage dementia and their anxiety levels. The study also

examined changes in the relationship between perceived stigma of persons with early

stage dementia and their anxiety levels over time (e.g., visit two (T2) at six months and

visit three (T3) at one year). Finally, subject characteristics (e.g., race, gender,

location), mental ability, and stage of dementia were considered in order to examine their

effect on the relationship between perceived stigma in persons with early stage dementia

and anxiety. There is very little research on perceived stigma of dementia and no

literature that explicitly examines the relationship between the perceived stigma of

dementia and anxiety, how this relationship changes over time, or how subject

characteristics, mental ability, or stage of dementia impacted the relationship between

perceived stigma and anxiety. Given the lack of literature, this study has the potential to

make an important contribution.

Due to the lack of literature that specifically addresses the topics of the current

study, this chapter focuses on different variables included in the study (e.g., stigma of

dementia, stigma and anxiety) as well as how the stigma of dementia is similar to the

stigma of mental illness. Also, literature that explored different ways to address the

perceived stigma of dementia (e.g., public education and psychoeducation) and how these

might be applied to PwD and their caregivers is examined. Finally, since counseling

psychologists are often called upon to work with PwD regarding anxiety, appropriate

interventions for anxiety in PwD are discussed.

56

Relationship between Perceived Stigma and Anxiety

This study demonstrated a significant positive relationship between perceived

stigma of dementia and anxiety levels (r=.35, p = .022). Specifically, as perceived stigma

increased in persons with early stage dementia, anxiety levels also increased. As noted

above, there is no existing literature that has examined the relationship between perceived

stigma of dementia and anxiety levels of PwD. However, the current findings appear

reasonable based on existing literature that explored the two topics separately (stigma of

dementia; anxiety in dementia).

Current literature found that PwD in the early stages tended to have awareness of

the negative perceptions society holds about dementia (Snyder, 2007). These negative

societal attitudes toward dementia developed at a young age (Corner & Bond, 2004)

making it understandable that PwD would internalize these societal beliefs, and be

worried about others’ responses to their diagnosis (Reed & Bluethmann, 2008).

Based on the literature, PwD in the early stages tend to have an understanding

about the progression of the disease and the types of behaviors or symptoms that occur

(Brechling & Schneider, 1993; Smith & Buckwalter, 2005; Sorenson, et al. 2008). This

author speculates that this insight might lead to worries about loss of control (Boyd et al.,

2005) or embarrassment because of dementia related symptoms (Ballard, Boyle, Bowler,

&Lindesay, 1996).

Changes in Perceived Stigma and Anxiety Over Time

In the current study, the correlations between perceived stigma and anxiety on

visit 2 (T2) and visit 3 (T3) did not change over time, as indicated by overlapping

confidence intervals (T2: 95% CI – (0.05, 0.59; T3: 95% CI - 0.24, 0.74). The mean

scores for perceived stigma demonstrate little change on visit two (M = 39.93) and three

(M =39.94). However, the mean scores for anxiety levels demonstrated a significant

decrease (p=.03) from visit two (M = 8.79) to visit three (M = 7.36).

57

The lack of change in the mean scores of perceived stigma in the current study,

was consistent with a longitudinal study completed by Link et al. (1997). Link studied

men who had a dual diagnosis of mental illness and substance abuse and examined

whether the effects of stigma persisted over time (measured upon entry into treatment and

one year later). At baseline, participants felt they would be rejected by others (e.g.,

believed employers would not hire them, believed women would not marry them) for

having a mental illness and issues with substance abuse. As a result, participants reported

they coped with stigma by keeping their diagnosis a secret (e.g., they would not tell

employers about history) and withdrawing from opportunities (e.g., they would not be

apply for a job). At the year follow-up, there was no change in perceived stigma, even

when symptoms of mental illness and substance abuse had improved through treatment.

Although there are some differences in the populations examined in Link’s study and the

current study, the similar results suggest that the ongoing impact of the stigma of

dementia needs to be addressed in order to maintain a positive quality of life. The

relationship warrants further study.

The literature on anxiety and stage of dementia is equivocal. Teri et al. (1999)

noted that persons with mild to moderate dementia were likely to be less anxious than

those with severe dementia, indicating that anxiety worsens over time. Teri’s results are

opposite of the results of the current study, where anxiety decreased from T2 and T3.

This may be because participants in the current study were in the early stages of dementia

and had not progressed to severe levels.

Forsell and Winblad (1997) found that persons with moderate to severe dementia

did not have anxiety disorders and that was likely due to lack of awareness of their

symptoms or an inability to answer assessment questions. While Forsell and Winblad

focused on dementia in the middle to later stages, this author wonders if further research

might suggest that anxiety symptoms decrease as the disease progresses to the latter

stages.

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Bierman et al. (2007) found that as cognitive functioning decreased, there was an

increase in the number of people who had symptoms of anxiety. However, as dementia

progressed further into the later stages and cognitive decline worsened even more, the

number of people with symptoms of anxiety decreased. The current study found a

significant decrease in anxiety, over a six month period, in PwD in the early stages. This

author speculates that PwD in the early stages have more insight into their symptoms

which could contribute to anxiety (Ballard, 1994; Eustace et al., 2002), but, as the disease

progresses, insight may decrease, therefore decreasing anxiety symptoms. However,

longitudinal research is needed to better evaluate anxiety over the full course of dementia.

Although not examined in this study, a possible explanation for the decrease in

anxiety in PwD in the current study is that they may have begun to avoid activities or

environments that increased anxiety (Snyder, 2007). As the disease progressed, social

activities may have become stressful due to the PwD’s feelings of embarrassment

(Ballard, Boyle, Bowler, & Lindesay, 1996) or inability to express their emotions and

comprehend what was being said by others (Snyder). Changes in environment or routine

(Smith et al., 2008) may also have been stressful or overwhelming to PwD (Hall &

Buckwalter, 1987), and led to feelings of anxiety or frustration (Smith et al.; Smith &

Buckwalter, 2005). These factors could contribute to withdrawal from social groups

(Link, Mirotznik, & Cullen, 1991) and decreased feelings of anxiety, shame or

embarrassment, but increased isolation (Link, et al., 1991), leading to other behavioral

and psychological symptoms of dementia such as depression (Smith & Buckwalter).

Furthermore, one might speculate that PwD in the current study surrounded themselves

with family and friends who understood and were supportive of their needs (Link et al.,

1991; Van Dijkhuizen, Clare, and Pearce, 2006) but avoided activities and people who

were unfamiliar to them (Link et al., 1991). This approach anxiety through avoidance but

also maintains structure and routine that is comforting to PwD (Clare et al., 2006; Van

Dijkhuizen et al., 2006).

59

What Influences the Relationship Between Perceived

Stigma and Anxiety?

The current study also examined the impact of subject characteristics, including

social support, demographic variables (e.g., length of dementia, PwD education level,

race, site, gender), stage of disease (CDR), and mental ability (MMSE) on the

relationship between perceived stigma and anxiety levels. There was a significant

correlation of .47 (p=.002) between race (African Americans/Blacks) and perceived

stigma indicating that African Americans/Blacks reported higher levels of anxiety than

whites. There was also a significant negative correlation of -.48 (p=.002) between site

(North Carolina) and perceived stigma indicating that subjects from the North Carolina

site reported less anxiety than subjects in the other two sites (Iowa and Illinois).

However, following further analysis, race and site were not significant when included in

a model with perceived stigma, indicating that they were not mediating variables. The

small sample size made it difficult to determine conclusive findings. Further examination

of the effect of these subject characteristics on the relationship between perceived stigma

and dementia should be undertaken with a larger sample size. However, based on the

results of this study, development and testing of interventions that focus on

psychoeducation about dementia in order to decrease perceived stigma and therefore;

reduce symptoms of anxiety in PwD is called for.

Limitations

This study examined the relationship between perceived stigma and anxiety levels

in PwD. It was descriptive in nature, so no causal inferences can be made. The overall

study was an 18 month longitudinal study that included four visits to participants (every

six months). In the current study, research question one and three examined data from

time two (T2), therefore, only examining one point in time (six months after baseline).

Likewise, question two examined time two (T2) and time three (T3) and did not include

60

the other two visits (T1: baseline; T4: 18 months). While question two explored change

over a six month period, it did not explore change over the entire study period (18

months), limiting the results.

Small sample size is another limitation to the study. Many efforts were made to

recruit participants to the study but the sample size remained smaller than desired.

Consequently, the sample has limited variability in participant characteristics including

race, education level, and geographic location. Racial diversity was limited as there were

only two racial groups in our study (White/Caucasian, Black/African American) and in

these groups there were more White/Caucasian participants than Black/African

American. The mean education level of this sample was beyond high school, indicating a

more educated group of participants. The majority of the participants were from the

Midwest (Illinois and Iowa), therefore, limiting geographic diversity. The nature of the

population’s disease progression contributed to attrition issues (e.g., no longer qualified

for the study due to progression of dementia symptoms, moved to long term care facility,

death). As a result of the small sample size, statistical analysis was impacted, specifically

in questions two and three, where it was difficult to draw definitive conclusions from the

results.

As noted earlier, recruitment may have been inhibited by the stigma of dementia.

PwD might be ashamed of their diagnosis (Katsuno, 2005) and worry about judgment or

labeling from others (Snyder, 2007). In the Voices of Alzhiemer’s town hall meeting

(Reed & Bluethmann, 2008), PwD felt their opinions were no longer valued and perhaps

past experiences of rejection made potential participants hesitant to enroll in the current

study. This issue should be evaluated qualitatively in future research with this

population.

Participation in the current study also required PwD to acknowledge their

diagnosis. This might have been difficult as some PwD deny (Clare et al., 2006) or hide

their diagnosis (Katsuno, 2005; Reed & Bluethmann; Snyder) in order to cope with the

61

negative responses of others (Link, et al., 1997; Snyder). Due to recruitment issues,

participants in this study may have experienced less stigma than the general population of

PwD and therefore, results may not be generalizable. In spite of these limitations, this

study makes an important contribution because it brings attention to the idea that there is

a relationship between perceived stigma, anxiety, and dementia. This was reinforced by

town hall meetings where PwD stated that the stigma of dementia was a prevalent issue

that influenced their quality of life (e.g., social relationships, feelings of incompetency;

Reed & Bluethmann). Results of the current study support these experiences of PwD and

strengthen the idea that these issues are important to improving the lives of PwD,

caregivers, and society as a whole.

Suggestions for Future Research

To date, no study other than the current study has explicitly examined the

relationship between the perceived stigma and anxiety levels in persons with early stage

dementia. A positive significant relationship was found, indicating that as perceived

stigma of dementia increases, so does anxiety. Replication of this study, along with

further research on this topic needs to be completed, preferably with a larger and more

geographically and ethnically diverse sample. This would inform the counseling

psychology and human services community about the relationship between perceived

stigma and anxiety levels and better inform us about appropriate interventions that might

address this issue.

More longitudinal studies would be useful to further explore how perceived

stigma and anxiety levels change over time. As this study only examined change over a

six month period, perhaps this was an inadequate amount of time to measure change in

the relationship between perceived stigma and anxiety in dementia. Results from the

overall study will examine change over an eighteen month period. However, due to the

slow progression of dementia, this also may not be an adequate amount of time to capture

62

change. Longitudinal studies beyond an eighteen month period would allow researchers

to better understand how the issues confronting PwD change over a longer period of time.

Possible explanations for the changes should be explored, so that counseling

psychologists can more adequately explain to clients, family members, medical staff and

community members, how anxiety levels might change as the disease progresses. A

better understanding of how stigma and anxiety change over time might also help

counseling psychologists better understand and implement coping strategies for PwD and

their caregivers.

More focus groups similar to the Voices of Alzheimer’s town hall meetings (Reed

& Bluethmann, 2008) would also be beneficial. Researchers could gather specific

information from PwD in the early stages and their caregivers about experiences with the

stigma of dementia and how this influences anxiety levels. This would allow researchers

to hear the stories of PwD and their caregivers and provide insight into the lives of those

who live with the disease. Furthermore, it would give PwD with an opportunity to

participate in research as participant eligibility criteria would likely be less rigid. PwD

have also mentioned that they would like to have opportunities to talk with others who

have similar experiences (Reed & Bluethmann) and focus groups would provide them a

safe place to talk about their struggles.

Although not the focus of this study, it might also be useful to expand research

with caregivers about how their lives are influenced by the stigma of dementia and

anxiety in PwD. As mentioned earlier, PwD may exhibit BPSD and these often interfere

with the lives of caregivers (Finkel, 1997). Examining how these behaviors influence the

lives of caregivers would help counseling psychologists and human service providers

implement appropriate psychological interventions that might ease some of caregivers’

stressors.

63

Stigma of Mental Illness

Dementia is labeled as a neurological disorder. However, there are

commonalities between dementia and mental illness; therefore, PwD may experience

similar effects of stigma. PwD often display BPSD such as disinhibited behavior,

disregard of social norms (APA, 2000; Boyd et al., 2005), wandering, or personality

changes (APA, 1997; Brechling & Schneider, 1993) which might cause negative

responses from others. There can also be psychiatric issues such as depression

(Buckwalter, 2009), anxiety, hallucinations, or delusions (Cummings, 1997; Finkel,

1997) that might complicate dementia related symptoms. These common symptoms of

dementia often appear similar to mental illness and may lead to distress in caregivers

(Finkel) and institutionalization of PwD (Hall et al., 1995). Below are studies that

examine the stigma of mental illness and explore similarities to the stigma of dementia.

Wahl (1999) conducted a survey using qualitative phone interviews with

individuals who had utilized mental health services. The study examined participants’

experiences of stigma and discrimination. Participants reported overhearing stigmatizing

comments from people, witnessing negative portrayals of mental illness in the media,

being treated as incompetent by others, told to lower their expectations about

employment, and being avoided by others. These stigmatizing experiences led to secrecy

(e.g., not disclosing their diagnosis to employers or applications for housing) and worries

that others would discover their mental health diagnosis. This was congruent with

literature that discussed the experiences of PwD who felt they were treated as less

competent, no longer able to make useful contributions (Reed & Bluethmann, 2008),

socially excluded, and devalued (Katsuno, 2005). This author speculates that these

stigmatizing experiences may lead PwD to hide their diagnosis from others (Reed &

Bluethmann) and encourages future research in this area.

In a study that examined the relationship between stigma, psychological well-

being, and life satisfaction in persons with mental illness, there was a stronger

64

relationship between depression and anxiety and stigma, than psychotic symptoms (e.g.,

hallucinations) and stigma (Markowitz, 1998). This may indicate that symptoms

concerning affect (depression and anxiety) may be more impacted by stigma than

hallucinations (Markowitz). Furthermore, the more stigmatized adults who were severely

mentally ill felt, the less satisfied they were with their lives (Depla, de Graaf, van

Weeghel, & Heeren, 2005). Although the aforementioned study was not conducted with

PwD, the results help make sense of the findings discussed in this dissertation, where

increased stigma in PwD was associated with increased anxiety, which may result in a

negative effect on quality of life in PwD (Finkel, 1997; Shin et al., 2006; Smith et al.,

2008).

In the last two years, there has been much activity in the field of dementia

including legislation (i.e., National Alzheimer’s Project Act of 2011, the National Plan to

Address Alzheimer’s Disease, 2012) and renewed interest at national and international

conferences (e.g., 2012 Alzheimers Disease Research Summit at the National Institutes of

Health, the 2012 National Dementia Initiative “Reframing Dementia Care”, the 2012

State of the Science Conference on the Advancement of Alzheimer’s Diagnosis,

Treatment and Care). These advances have called for more dementia-research in terms of

drug discovery, biomarkers, health services research and ethics. However, few

recommendations have acknolwedged the need to understand the experience of dementia

and perceptions such as stigma. Findings from this study will add a needed dimension to

the national dialogue on the care needs of people with dementia and their caregivers.

Clinical Implications for Counseling Psychologists

Counseling psychologists are often involved in the evaluation of memory

problems or cognitive concerns, therefore, it is important for them to be familiar with the

symptoms of dementia (American Psychological Association, 2012) and have an

understanding of the progression of the disease (Buckwalter, 2009). This may help to

65

guide treatment and manage BPSD (including anxiety) which often worsens as the

disease progresses (Kilik, et al., 2008). BPSD cause distress (Finkel, 1997) and if anxiety

issues are not appropriately managed, other physiological symptoms might emerge

(Webster & Grossberg, 2003), leading to decreased quality of life (Finkel, 2000).

It is important for counseling psychologists to be aware of perceived stigma and

how this might influence PwD’s willingness to seek treatment and talk about their

struggles. Counseling psychologists need to be aware that PwD may have had previous

negative experiences with professionals or community members due to poor quality

treatment and care (Graham, et al., 2003). Therefore, it is crucial that counseling

psychologists understand that PwD, particularly in the early stages of the disease, are

capable of making decisions about their lives (Brechling & Schneider, 1993; Smith &

Buckwalter, 2005). In fact, PwD who are already using coping strategies are often open

to learning new methods of coping as these may ease BPSD (Flood & Buckwalter, 2009).

That being said, ongoing evaluation of cognitive abilities and stage of disease are

important so that appropriate treatment interventions are implemented.

An overall theme that arose from the Voices of Alzheimer’s town hall meetings

were the issues of grief and loss. PwD expressed concern that they would no longer be

able to contribute to society (Reed & Bluethmann, 2008). As the disease progresses,

some PwD are forced to give up long term careers. This could lead to feelings of

sadness, loss, and shame and a perception that they are no longer able to complete the

tasks that were once second nature. Other participants in the town hall meetings noted

that they lost relationships or were treated differently by their social circle (Reed &

Bluethmann). The loss of relationships or status in the community may have a negative

effect on PwD and lead to symptoms of depression or anxiety. PwD might worry about

burdening a spouse or family member with their concerns, so individual counseling might

provide helpful support in times of distress. Counseling psychologists can provide a place

for PwD to talk about feelings of sadness and loss and explore positive coping methods.

66

In the Voices of Alzheimer’s town hall meetings (Reed & Bluethmann, 2008)

persons who had early stage dementia also discussed how the stigma of the disease

impacted their quality of life. PwD stated they became socially isolated and felt

disappointed with the lack of resources (e.g., support and educational groups) available to

PwD in the early stages. The need for education and support services for this population

is another area where counseling psychologists can effectively contribute.

Counseling psychologists may provide group, individual, or community based

education programs that educate others about the disease. Behuniak (2011) discussed

how scholarly and popular literature perpetuated the stereotypes of dementia by labeling

PwD as “zombies” or “the living dead”. While planning educational programs or

education within an individual counseling session, it is important to consider how

information is being presented, so that further stigmatization is not created (Devlin, et al.,

2007; Graham, et al., 2003). It should also be emphasized that PwD in the early stages

can often maintain a relatively normal life and continue to have joy and individuality

(Devlin et al.). As a result of education surrounding all stages of the disease, but

specifically the early stages, perhaps the public will begin to better understand dementia

and therefore, respond more appropriately to PwD (Corner & Bond, 2004). This

understanding of dementia may result in decreased stigma associated with the disease and

improved quality of life among PwD.

Public Education and Psychoeducation about Dementia

Negative behavioral and psychological symptoms of dementia, such as

aggression, wandering, depression and anxiety (Cummings, 1997; Devlin, MacAskill, &

Stead, 2007; Finkel, 1997) are often discussed in the media as a mechanism for bringing

attention to the disease (Jolley & Benbow, 2000). Exposure to these debilitating images

of dementia perpetuates stereotypes (Jolley & Benbow) and could lead to the

dehumanization of PwD (Behuniak, 2011). Persons with early stage dementia, might

67

begin to internalize these labels and stereotypes (Scholl & Sabat, 2008), leading to

anxiety and a decrease in quality of life (Katsuno, 2005). As a result, it is important to

provide accurate education to the public, PwD, and their caregivers about symptoms of

early stage dementia in order to address misperceptions about the disease (Devlin, et al.).

PwD have reported losing friends (Devlin et al., 2007) because of a lack of

understanding of the disease (e.g., public is fearful they might “catch” dementia) and this

negatively impacted their social and psychological well-being. (Katsuno, 2005). As a

result, PwD (Katsuno) and persons with mental illness (Wahl, 1999) emphasized the

importance of public education to reduce stigma. Some persons with mental illness

(Wahl) and PwD hoped to become involved in public education as a means of

contributing and found this experience to be empowering (Reed & Bluethmann, 2008;

Wahl).

Individuals who feel stigmatized might benefit from joining together and forming

groups that reject the stigma of mental illness (Link et al., 1991) and dementia. This idea

meshes with PwD’s need to connect with others who have been through similar situations

(Reed & Bluethmann, 2008) and would provide opportunities to learn more effective

ways of coping (Link et al.). The opportunity to be in a group that educates society about

dementia or participates in research could instill feelings of worth and expand support

systems, both of which are valuable to PwD (Reed & Bluethmann).

Contributing to perceived stigma, stereotypes about dementia are formed over a

lifetime of negative experiences (Scholl & Sabat, 2008). After frequent exposure to these

stereotypes, children form beliefs and values about what it means to have dementia.

When they become older adults, they have internalized the stereotypes (Scholl & Sabat),

leading to feelings of shame and embarrassment about symptoms of dementia (Katsuno,

2005). It would be beneficial for counseling psychologists to develop educational

programs about dementia for children. This would help children better understand the

different stages of dementia, how to interact with individuals who have dementia (as

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many might have grandparents who have the disease), and hopefully, decrease the stigma

surrounding the disease.

Educating Professionals and Human Service Providers

Counseling psychologists often work as consultants to interdisciplinary teams

(e.g., physicians, nurses, certified nursing assistants, social workers, physical therapists,

occupational therapists) in the medical field (Cohen-Mansfield, Jensen, Resnick, &

Norris, 2012). Interdisciplinary team members who work with PwD would benefit from

education about the stigma of dementia and how this might inhibit PwD’s willingness to

share symptoms with others. As noted earlier, PwD will sometimes deny their diagnosis

and avoid medical care because they are uncertain about treatment options and are

unaware of medications (Devlin, et al., 2007) or other interventions that could help

control BPSD. A diagnosis of dementia creates feelings of anxiety about losing control

and worries about how the disease will progress (Devlin et al.). Sometimes, the fear of a

dementia diagnosis is so strong that when PwD (and their families) finally seek medical

assistance, symptoms have become serious (Devlin et al.).

Interdisciplinary teams would also benefit from education about BPSD, including

anxiety, and possible ways to intervene when BPSD worsen. BPSD are often points of

stress with caregivers (family or professional) and may lead to premature

institutionalization (Hall, et al., 1995). Interdisciplinary team members should be

educated about potential triggers that escalate BPSD (Boyd et al., 2005; Smith &

Buckwalter, 2005) so that symptoms may be decreased or prevented. PwD often become

frustrated when they are unable to effectively communicate their needs (Smith et al.,

2008) and as a result, they may act out in ways that are upsetting or disruptive to medical

staff. When compared to physicians or nurse practitioners, psychologists are most likely

to consider interventions that include educating staff about dementia (Cohen-Mansfield et

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al., 2012), suggesting that psychologists have a role in helping others understand how to

appropriately intervene in these situations.

Due to BPSD, working with PwD can be stressful. Interdisciplinary team

members may experience fatigue as a result of working with clients that demonstrate

difficult behaviors such as wandering, repetitive questions, aggression, or sleep

disturbances (Cummings, 1997; Finkel, 1997). Fatigue or lack of understanding about

how to intervene with BPSD may cause team members to feel frustrated or less

compassionate, leading to impatience or irritability with PwD. In turn, this might result

in an increase in anxiety or other BPSD in PwD (Neville & Teri, 2011). Furthermore,

because dementia is typically slow in its progression, interdisciplinary team members

may become emotionally attached to PwD and experience feelings of grief and loss as the

disease progresses. Counseling psychologists could provide support to team members

and make available educational presentations about self-care or stress management

strategies (Tolle & Graybar, 2009). It is important for those who work with PwD to

maintain consistent positive self care so that they are able to effectively interact with

PwD.

Family members or caregivers who provide support and care to PwD may also

suffer from fatigue or burnout due to the ongoing needs of PwD. Even caregivers who do

not care for PwD in their own home (PwD lives in an institutional setting) demonstrate

signs of stress (Almberg, Grafstrom, Krichbaum, & Winblad, 2000). In this situation,

caregivers must rely on nursing home staff to provide care for their relative and may feel

care is not adequate (Almberg et al.). Caregivers also express frustration with not being

kept informed regarding decisions made about their relative’s care, which may lead to

conflict between caregivers and staff (Almberg et al.). Counseling psychologists could

provide support to caregivers who have institutionalized a family member and help them

to more effectively cope with emotions that might arise as their relative’s disease

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progresses. Furthermore, counseling psychologists can help caregivers appropriately

advocate for their relative, while maintaining positive relationships with staff members.

Caregivers of PwD often have other demands, such as work, that require their

time in addition to caregiving responsibilities (Wang, Shyu, Chen, & Yang, 2010). Lack

of flexibility from employers may contribute to role strain and depressive symptoms in

caregivers (Wang et al.). Furthermore, caregivers often give up outside activities in order

to care for their relative, leading to symptoms of burnout (Almberg et al., 2000).

Counseling psychologists could help caregivers manage these conflicting roles,

depression and burnout symptoms, and also help them appropriately set boundaries with

employers. Finally, counseling psychologists could provide education programs for

employers about how to support employees who are balancing caregiving and work

related responsibilities.

Caregiver Psychoeducation

In the literature, psychoeducation for caregivers of PwD was somewhat helpful,

but it was not clear if it was the group setting or the psychoeducation content itself that

was beneficial (Morano & King, 2010). In order to make psychoeducation effective for

caregivers, different factors should be considered. For example, consistent presenters

would be beneficial and coping skills should be practiced in session, caregiver time

constraints make it difficult for them to practice outside of sessions (Morano & King).

Furthermore, while it might be convenient to hold sessions at the institution where

caregivers’ relatives are living, it is difficult for caregivers to relax (e.g staff members

interrupt meetings to talk with caregivers about their family members; Morano & King).

Psychoeducation can help caregivers become more knowledgeable about

communication difficulties (Kouri & Giroux, 2011) and Alzheimer’s disease (Routrou et

al., 2011; Sullivan & O’Connor, 2001). A multimedia (written and video) approach to

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psychoeducation showed most improvement in knowledge as it addressed different

learning styles (Sullivan & O’Connor).

The literature indicates that caregivers’ perceptions of their ability to cope with

their family member’s disease improved after psychoeducation and had a positive effect

on the caregiving relationship (Rotrou et al., 2011). Furthermore, psychoeducation

sessions helped caregivers feel less isolated in their experiences (Morano & King, 2010)

suggesting that a support group setting may be more beneficial than the actual

presentations themselves (Morano & King).

Cultural factors should also be considered when designing psychoeducation

programs. When compared with whites, Hispanics/Latinos and Chinese Americans are

more likely to believe that Alzheimer’s disease is a natural part of getting older, resulting

delayed medical care for PwD (Gray, Jimenez, Cucciare, Tong, & Gallagher-Thompson,

2009). Specific cultural values and beliefs about Alzheimer’s disease need to be

considered when designing community educational programs, so that appropriate

information is disseminated (Gray et al.).

Anxiety Interventions for PwD

Since the literature documents that many PwD experience symptoms of anxiety,

(Bierman et al., 2007; Eustace et al., 2002; Orrell & Bebbeington, 1996; Ownby, et al.

2000; Porter et al., 2003; Teri et al., 1999), it is a clinical concern (Ownby, et al. 2000).

A case study found there was a decrease in anxiety symptoms in PwD after

pharmaceutical and psychosocial interventions (e.g., secure ward, PwD were able to walk

around and wander, social interaction with others) were implemented, indicating that

dementia related anxiety is treatable (Qazi et al., 2003). Consequently, counseling

psychologists and other human service providers can play an important role in the

treatment of anxiety in PwD.

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The effectiveness of cognitive behavioral therapy (CBT) has been examined in

recent case studies (Balasubramanyam, Stanley, & Kunik, 2007; Kraus et al., 2008) as

well as a pilot study (Paukert et al., 2010). CBT skills such as diaphragmatic breathing

and coping statements were implemented in two case studies conducted by Kraus et al.

Skills were simplified in order to address comprehension, learning, memory and

application issues that may arise when working with PwD. In order to enhance learning

and ensure understanding, PwD were encouraged to repeat information learned back to

the provider. Spaced retrieval was also used whereby the PwD were asked to correctly

recall information over systematically increasing intervals over time (e.g., recall after 10

seconds, 20 seconds, 40 seconds, 60 seconds, and so on; Camp, Cohen-Mansfield,

Capezuti, 2002). Telephone contact was utilized between sessions to encourage skill

usage and answer questions. Sessions were also shortened to thirty to forty minutes due

to fatigue in PwD. Caregivers were present during sessions and were encouraged to learn

CBT skills, so they could remind PwD to utilize skills in their daily life. The two

participants in this case study demonstrated reductions in anxiety after CBT was

implemented, indicating that a modified approach to the skills might be helpful to PwD in

the early stages. However, due to the small sample and non-rigorous methodology, it is

difficult to draw valid conclusions.

Balasubramanyam, Stanley, and Kunik (2007) studied a man who had moderate

cognitive impairment, generalized anxiety disorder (GAD), postraumatic stress disorder,

and major depression. He experienced significant anxiety symptoms (when, for example,

he heard loud noises, felt physical pain, or worried about family’s health). He received

weekly CBT for ten sessions. The focus of the sessions was to help increase his

awareness of his anxiety symptoms through self monitoring (e.g., he completed a simple

form that indicated anxiety provoking situations and symptoms). In order to cope with

physiological symptoms of anxiety, he was also taught breathing strategies. He learned

to be aware of when he was feeling anxious and to utilize anxiety reducing skills (e.g.,

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breathing, coping self-statements, swimming). Telephone contact was made with him

between sessions and skills were reinforced. Thus, in this case study, the participant was

able to learn skills, fill out monitoring forms, and utilize coping self-statements during

times of anxiety. This case study may suggest that PwD with moderate cognitive

impairment can effectively utilize CBT skills, however, further studies will need to be

completed to fully determine effectiveness.

Peaceful Mind, a type of CBT designed specifically for anxiety in PwD, was

piloted over two years using seven participants (Paukert et al., 2010). After the pilot

study, the final design was implemented in an open trial with eight participants and

examined the usefulness of the intervention. There are five different modules discussed

in Peaceful Mind, including self-awareness, breathing, calming thoughts, increasing

activity and sleep skills. Different techniques were used in Peaceful Mind to enhance

learning. For example, behavioral rather than cognitive skills were emphasized, the

number of behavioral skills taught was decreased, and only one skill was introduced at a

time. Much of each session focused on repetition and practice of skills, with visual cues

and spaced retrieval techniques implemented in order to improve memory. Anxiety was

measured through the different assessments (e.g., Neuropsychiatric Inventory – Anxiety

(NPI-A); Rating Anxiety in Dementia (RAID); Penn State Worry Questionnaire-

Abbreviated (PSWQ-A); Geriatric Anxiety Inventory (GAI). After six months of

treatment, participants did not show improvement on all of the assessments, but most

family members reported a decrease in anxiety on the NPI-A (86% at three months) and

mixed results on the other measures.

CBT, implemented with appropriate modifications, seems to be helpful to persons

who have early stage dementia and who experience symptoms of anxiety. These studies

provide hope that CBT might be a useful treatment for PwD with anxiety. However,

further randomized controlled trials with much larger samples are needed in order to

determine effectiveness with this population.

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In conclusion, the current study found a significant relationship between

perceived stigma and anxiety levels in PwD. These results were congruent with Voices

of Alzheimer’s town hall meetings (Reed & Bluethmann, 2008) where PwD indicated the

stigma of dementia had a negative impact on their quality of life. PwD often worry about

how others might respond to their diagnosis (Reed & Bluethmann) and this could

contribute to anxiety symptoms. These worries might lead to a decrease in PwD’s social

interactions (Clare, 2002; Reed & Bluethmann; Snyder, 2007) and negatively influence

their quality of life (Reed & Bluethmann). The above issues demonstrate the importance

of exploring and creating effective ways to address the stigma of dementia (e.g. public

education or psychoeducation). Perhaps, if stigma is more appropriately addressed, the

anxiety levels in PwD will decrease. Furthermore, since many PwD experience anxiety

symptoms (Bierman et al., 2007; Eustace et al., 2002; Orrell & Begginton, 1996; Ownby,

et al., 2000; Porter et al., 2003; Teri et al., 1999) it is important that more dementia

related anxiety treatments be developed and examined through research, so that this issue

can be effectively addressed. Finally, it is anticipated that successfully addressing the

stigma of dementia and symptoms of anxiety in PwD will have a positive effect on

society and PwD’s overall quality of life.

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APPENDIX A. PHONE LOG OF RECRUITS

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77

APPENDIX B. EVALUATION TO SIGN AN INFORMED CONSENT

DOCUMENT FOR RESEARCH

Evaluation to Sign an Informed Consent Document for Research

Subject Identifier: _________________________ Date of Evaluation: ___________

Directions

Make a subjective judgment regarding item 1. Ask the subject questions 2-5 and record

responses. The evaluator may use different wording in asking the questions in order to assist the

subject’s understanding.

1. Is the subject alert and able to communicate with the examiner? Yes ___ No ____

2. Ask the subject to name at least two potential risks of participating in the study.

________________________________________________________________________

________________________________________________________________________

3. Ask the subject to name at least two things that he/she will be expected to do during the study.

________________________________________________________________________

________________________________________________________________________

4. Ask the subject to explain what he/she would do if he/she no longer wanted to participate in

the study.

________________________________________________________________________

________________________________________________________________________

5. Ask the subject to explain what he/she would do if he/she experienced distress or discomfort

during the study.

________________________________________________________________________

________________________________________________________________________

Evaluator’s Signature

It is my opinion that the subject is alert, able to communicate, and gave acceptable answers to the

questions above.

_________________________________________ _______________

Evaluator’s Signature Date

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APPENDIX C. INFORMED CONSENT

INFORMED CONSENT DOCUMENT: Person with Dementia

Project Title: Examining Perceived Stigma in Persons with Dementia

Research Team: Kathleen Buckwalter, PHD; Megan Liu, BSN; Rebecca Riley, BS, MA

This consent form describes the research study to help you decide if you want to

participate. This form provides important information about what you will be asked to do

during the study, about the risks and benefits of the study, and about your rights as a

research subject.

If you have any questions about or do not understand something in this form,

you should ask the research team for more information.

You should discuss your participation with anyone you choose such as family

or friends.

Do not agree to participate in this study unless the research team has answered

your questions and you decide that you want to be part of this study.

WHAT IS THE PURPOSE OF THIS STUDY?

This is a research study. We are inviting you to participate in this research study because

you have been diagnosed with a disorder that results in progressive memory impairment

and may be eligible to participate.

The purpose of this research study is to help understand the impact of stigma on quality

of life in persons with progressive memory loss. We also hope to increase our knowledge

about any stigma family members of persons with memory loss may experience. We

would hope to discover any ways in which the stigma experienced by family members

affects the person with memory loss. Ultimately, we are hopeful this study will help us

create ways to assist persons with memory loss to manage the stigma they experience

with the goal of increasing their quality of life.

HOW MANY PEOPLE WILL PARTICIPATE?

Approximately 80 people will take part in this study conducted by investigators at the

University of Iowa, 40 persons with dementia and 40 family caregivers. Another 80

people (40 persons with dementia and 40 family caregivers) will participate in the study

at the University of Illinois, Chicago, for a total of 160 participants at both study sites

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HOW LONG WILL I BE IN THIS STUDY?

If you agree to take part in this study, your involvement will last for 18 months The

interviews and questionnaires will be administered every 6 months over an 18-month

time frame, for a total of 4 assessments. Each assessment is expected to take about 2

hours of your time

WHAT WILL HAPPEN DURING THIS STUDY?

If you agree to be in this research study, we would ask you to do the following things, at

a time and place that is convenient for you:

Complete an interview including questions about your experiences with stigma.

Provide demographic data such as your age, educational level, marital status and

so forth

We will also ask you to respond to several questionnaires that reflect your quality

of life, including depressive symptoms, anxiety symptoms, your perceived

personal control, your physical health, your self-esteem, and the degree to which

you participate in activities.

We will also ask you to complete a measure of your mental ability.

The interviews and questions will take place at your home or the assisted living

facility where you reside. If you prefer, we can also collect the information in a

private room at the University of Iowa Hospitals and Clinics in the Geriatric

Assessment Clinic or Memory Disorders clinic.

The information will be gathered with only you and a member of the research

team present. Your caregiver will complete similar information separately from

you.

Your participation in this research is voluntary. Your decision whether or not to

participate will not affect your current or future relations with the University or

the Departments of Geriatric Medicine or Neurology. If you decide to participate,

you are free to withdraw at any time without affecting that relationship. You are

also free to skip any questions that you would prefer not to answer.

We will not use any information from your existing or future medical records in

this study.

No family members or health care providers will be given access to the

information we collect from you unless you specifically ask that some of the

assessment data (for example your mental ability scores) be shared with them.

If you make a request for the research team to share study data with a family

member or care provider then you will have to give permission, in writing, for us

to share the requested information with the designated care provider or family

member only.

During the course of the study, you will be informed of any significant new

findings (either good or bad) such as changes in the risks or benefits resulting

from participation in the research or new alternatives to participation that might

cause you to change your mind about continuing in the study. If new information

is provided to you, your consent to continue participating in this study will be

obtained again.

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Audio Recording/Video Recording/Photographs

One aspect of this study involves the possibility of making an audio recording of you.

This will be done only to monitor the quality of the interview or assessment. If you agree,

the audiotape will be reviewed only by members of the research staff and will be used

only for training purposes. You will have the right to review the audiotape, if desired,

prior to providing the tape to the research team for review. The audiotape recording is

optional and you can still be enrolled in the study even if you do not give permission to

be audiotaped. If you are asked to allow the interview to be audiotaped, all tapes will be

destroyed immediately after the study is over. No names will appear on the tapes. All

tapes will be stored in a locked file cabinet in the research office at the College of

Nursing.

[ ] Yes [ ] No I give you permission to make audio recordings of me during this

study.

WHAT ARE THE RISKS OF THIS STUDY?

You may experience one or more of the risks indicated below from being in this study. In

addition to these, there may be other unknown risks, or risks that we did not anticipate,

associated with being in this study.

Risk of tiring: It is possible that you will become tired during the assessments. The

risk of becoming tired is low, however, as many persons with memory loss find the

interview interesting and helpful. We will ask you about tiring during the interviews and

offer to complete the interview at another time, should tiring occur.

Discomfort with testing: At times you may be uncomfortable with some of the testing

of your mental abilities that occurs as part of the assessment. This discomfort may be due

to some difficulties you may have answering some of the questions. This discomfort is

not unusual, but does not occur in all persons with memory loss. To decrease this

discomfort, you will interviewed separately from your family members, with only the

researcher present.

Participating in other studies: Although you may be able to participate in more than

one study at a time, we ask that you inform us of any other research in which you are

participating.

Based on our prior research on persons with dementia, the risks of tiring or discomfort

are rare (less than 10%), and mild in nature

WHAT ARE THE BENEFITS OF THIS STUDY?

We don’t know if you will benefit from being in this study, however, you may benefit by:

1) Improving your understanding of the effects of perceived and experienced stigma on a

variety of outcomes, including health and depression

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2) Improving your coping skills and adaptation to memory loss through increased

understanding of the impact of stigma on your life, including your participation in social

activities

3) Having a positive experience and contact with health professionals who are

knowledgeable about memory loss and stigma associated with memory loss

WILL IT COST ME ANYTHING TO BE IN THIS STUDY?

You will not have any costs for being in this research study. The assessment will be

conducted by an experienced health professional with no costs or fee applied.

WILL I BE PAID FOR PARTICIPATING? You will be paid for being in this research study. You and your family member will be

paid a total of $10.00 per visit and will be paid at the time of each visit. We will be

visiting you four times over an 18 month period, so you and your family member will be

paid a total of $40.00 for the study. You may need to provide your address if a check

will be mailed to you. Should you prefer to have the assessment at the Memory

Disorders Clinic or Geriatric Assessment Clinic, the costs of parking will be reimbursed

to you.

WHO IS FUNDING THIS STUDY?

The National Institute of Nursing Research at the National Institutes of Health is funding

this research study. This means that the University of Iowa is receiving payments from

the National Institute of Nursing Research to support the activities that are required to

conduct the study. No one on the research team will receive a direct payment or increase

in salary from the National Institute of Nursing Research for conducting this study.

WHAT IF I AM INJURED AS A RESULT OF THIS STUDY?

If you are injured or become ill from taking part in this study, medical treatment is

available at the University of Iowa Hospitals and Clinics.

No compensation for treatment of research-related illness or injury is available from the

University of Iowa unless it is proven to be the direct result of negligence by a University

employee.

If you experience a research-related illness or injury, you and/or your medical or hospital

insurance carrier will be responsible for the cost of treatment.

WHAT ABOUT CONFIDENTIALITY? We will keep your participation in this research study confidential to the extent permitted

by law. However, it is possible that other people such as those indicated below may

become aware of your participation in this study and may inspect and copy records

pertaining to this research. Some of these records could contain information that

personally identifies you.

federal government regulatory agencies,

auditing departments of the University of Iowa, and

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the University of Iowa Institutional Review Board (a committee that reviews and

approves research studies)

To help protect your confidentiality, the only people who will know that you are a

research subject are members of the research team. No information about you, or

provided by you during the research, will be disclosed to others without your written

permission, except:

- If necessary to protect your rights or welfare (for example, if you are injured and need

emergency care or when the University of Iowa Institutional Review Board monitors the

research or consent process); or

-If required by law.

When the results of the research are published or discussed in conferences, no

information will be included that would reveal your identity. If photographs, videos, or

audiotape recordings of you will be used for educational purposes, your identity will be

protected or disguised.

Any information that is obtained in connection with this study and that can be identified

with you will remain confidential and will be disclosed only with your permission or as

required by law.

All instruments and responses to the interviews will be coded with a number, with no

names being on any of the instruments. Your actual name will appear only on this

informed consent document. This informed consent document will be the only written

material that will link the number assigned to you to your name. All informed consent

documents will be kept in a locked research office at the University of Iowa College of

Nursing once the document is obtained. Only the members of the research team will have

access to these documents. As it is expected that the information will be collected in your

home, all of the information will be transported to the research offices using a locked,

portable file.

Computer files containing your responses to the interview and questionnaires will be

developed and will include only the numbers assigned to you. The computerized data

files will be password protected and available only to the immediate research staff. If for

some reason you want some of the information to be shared with a family member or

health care provider, you must give written permission to share this information. Unless

you request the information be shared and provide this written permission, your

responses will not be shared with anyone outside the immediate research team. Your

responses will be stored with the numerical code for approximately 5 years after the

completion of the research. This raw data will be stored in file cabinets that are housed in

locked research offices at the College of Nursing at the University of Iowa. Only the

immediate research staff members will have access to these data files. After five years,

the raw data will be stripped of the numbered codes and all identifying links will be

destroyed.

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WILL MY HEALTH INFORMATION BE USED DURING THIS STUDY? No health information from existing medical records will be used in this study.

The Federal Health Insurance Portability and Accountability Act (HIPAA) requires The

University of Iowa to obtain your permission for the research team to access or create

“protected health information” about you for purposes of this research study. Protected

health information is information that personally identifies you and relates to your past,

present, or future physical or mental health condition or care. We will access or create

health information about you, as described in this document, for purposes of this research

study. Once The University of Iowa has disclosed your protected health information to

us, it may no longer be protected by the Federal HIPAA privacy regulations, but we will

continue to protect your confidentiality as described under “Confidentiality.”

We may share your health information related to this study with other parties including

federal government regulatory agencies, the University of Iowa Institutional Review

Boards and support staff, study researchers at the University of Illinois at Chicago and

the funding agency, the National Institute of Nursing Research.

You cannot participate in this study unless you permit us to use your protected health

information. If you choose not to allow us to use your protected health information, we

will discuss any non-research alternatives available to you. Your decision will not affect

your right to medical care that is not research-related. Your signature on this Consent

Document authorizes The University of Iowa to give us permission to use or create health

information about you.

Although you may not be allowed to see study information until after this study is over,

you may be given access to your health care records by contacting your health care

provider. Your permission for us to access or create protected health information about

you for purposes of this study has no expiration date. You may withdraw your permission

for us to use your health information for this research study by sending a written notice to

Dr. Kathleen Buckwalter, 494 NB, University of Iowa College of Nursing However, we

may still use your health information that was collected before withdrawing your

permission. Also, if we have sent your health information to a third party, such as the

study sponsor, or we have removed your identifying information, it may not be possible

to prevent its future use. You will receive a copy of this signed document.

IS BEING IN THIS STUDY VOLUNTARY?

Taking part in this research study is completely voluntary. You may choose not to take

part at all. If you decide to be in this study, you may stop participating at any time. If

you decide not to be in this study, or if you stop participating at any time, you won’t be

penalized or lose any benefits for which you otherwise qualify.

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What if I Decide to Drop Out of the Study?

You can choose whether to be in this study or not. If you volunteer to be in this study,

you may withdraw at any time without consequences of any kind. You may also refuse

to answer any questions you don’t want to answer and still remain in the study. The

investigator may withdraw you from this research if circumstances arise which warrant

doing so.

Leaving the study early will cause you no harm or discomfort

Will I Receive New Information About the Study while Participating? If we obtain any new information during this study that might affect your willingness to

continue participating in the study, we’ll promptly provide you with that information.

During the course of the study, you will be informed of any significant new findings

(either good or bad) such as changes in the risks or benefits resulting from participation

in the research or new alternatives to participation that might cause you to change your

mind about continuing in the study. If new information is provided to you, your consent

to continue participating in this study will be obtained again.

Can Someone Else End my Participation in this Study?

Under certain circumstances, the researchers or the study sponsor might decide to end

your participation in this research study earlier than planned. This might happen because

in our judgment it is causing you too much discomfort to answer study questions or

because your condition has become worse such that you are no longer able to answer the

questions in the study.

WHAT IF I HAVE QUESTIONS?

We encourage you to ask questions. If you have any questions about the research study

itself, please contact: Kathleen Buckwalter, PhD, RN, at 319-353-3019. If you experience

a research-related injury, please contact: Kathleen Buckwalter at 319-353-3019.

If you have questions, concerns, or complaints about your rights as a research subject or

about research related injury, please contact the Human Subjects Office, 340 College of

Medicine Administration Building, The University of Iowa, Iowa City, Iowa, 52242,

(319) 335-6564, or e-mail irb@uiowa.edu. General information about being a research

subject can be found by clicking “Info for Public” on the Human Subjects Office web

site, http://research.uiowa.edu/hso. To offer input about your experiences as a research

subject or to speak to someone other than the research staff, call the Human Subjects

Office at the number above.

This Informed Consent Document is not a contract. It is a written explanation of what

will happen during the study if you decide to participate. You are not waiving any legal

rights by signing this Informed Consent Document. Your signature indicates that this

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research study has been explained to you, that your questions have been answered, and

that you agree to take part in this study. You will receive a copy of this form.

Subject's Name (printed):

__________________________________________________________

Do not sign this form if today’s date is on or after EXPIRATION DATE:

___________________________________________ ________________________

(Signature of Subject) (Date)

Statement of Person Who Obtained Consent

I have discussed the above points with the subject or, where appropriate, with the

subject’s legally authorized representative. It is my opinion that the subject understands

the risks, benefits, and procedures involved with participation in this research study.

____________________________________ _____________________________

(Signature of Person who Obtained Consent) (Date)

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APPENDIX D. DEMOGRAPHIC DATA SHEET

University of Illinois at Chicago College of Nursing

Examining Perceived Stigma in Person’s with Dementia

Demographic Data

Person with AD (Participant):

Date of Birth: _____________ Gender: Male:______ Female:______

Caregiver:

Date of Birth: _____________ Gender: Male:______ Female:______

Married:____ Widowed: _____

Single (never married): _____ Single (divorced): ______

Living Arrangements:

Lives with spouse/family member: _____

Lives alone: _____

Lives with friends/significant other: _____

Lives in own home: _____ or Assisted Living: ___

Caregiver(C)/Participant(P) race: _____ White/Caucasian _____ Hispanic or Latino

_____ American Indiana or Alaskan Native

_____ Asian _____ Native Hawaiian

__ Black or African American

Other (Specify)

Caregiver Education: Total years (including high school): _____

Participant Education: Total years (including high school): ______

Length of time participant has been diagnosed with AD: ____ months

CDR Score: ______

Participant medical diagnoses: (please list)

Medications participant is currently taking:

Is participant currently taking part in a clinical drug trial? _____ Yes _____ No

If yes, please specify the drug name and location of the trial:

____________________________________________________________________

87

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