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Understanding the quality of geriatric healthcare and family caregiver advocacy for patients with dementia

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Understanding the quality of geriatric healthcare and family caregiver advocacy for patients with dementia

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Understanding the Quality of Geriatric Healthcare and Family Caregiver Advocacy for
Patients With Dementia
by
Jacqueline Lehn Dupont

Rossier School of Education
University of Southern California
A dissertation submitted to the faculty
in partial fulfillment of the requirements for the degree of
Doctor of Education

August 2021

© Copyright by Jacqueline Lehn Dupont 2021
All Rights Reserved

The Committee for Jacqueline Lehn Dupont certifies the approval of this Dissertation

Dr. John Walsh
Dr. Paula Carbone
Dr. Patricia Tobey, Chair

Rossier School of Education
University of Southern California
2021

iv

Abstract
Older adults with dementia require a timely diagnosis and comprehensive medical care to
manage their symptoms and quality of life. However, strong evidence has suggested that these
patients have been receiving poor medical care in the United States, this would have included
delayed or missed diagnoses, as well as medical overtreatment and undertreatment. This study
used a qualitative, semi-structured interview design and questioned 12 family caregivers who
were designated as the health care durable power of attorney (DPOA) for an older adult with
dementia. Thirty two open-ended, semi-structured questions were asked of the family caregiver
DPOAs. Questions pertained to topics of ageism, the quality of medical care physicians provide
to patients with dementia, and advocacy from the family caregiver DPOAs. Online Zoom
Interviews were audio recorded, transcribed, and analyzed using a thematic data analysis. The
results were framed from the qualitative data interviews with Bronfenbrenner’s social ecological
model. There was evidence of microsystem, exosystem, mesosystem, and macrosystem level
influences of stereotype threat, terror management, and self-efficacy in relation to ageism and
poor quality medical care from physicians and a lack of advocacy from family caregiver DPOAs.
The findings informed the development of multisystem level solutions and recommendations for
improving the overall quality of medical care for patients with dementia, and family caregiver
DPOAs’ skills of advocacy.
Keywords: Ageism, durable power of attorney (DPOA), family caregivers, patients with
dementia, primary care physicians.

v

Dedication
To my grandfather and Yia Yia, Ernest Mitschopolis and Mary Gardikas Mitschopolis; my
husband’s family, his parents, and brothers; and all the patients with Alzheimer’s Disease and
their families, you were my inspiration for writing this dissertation.

To my dear friend Aileen Sherman, you were prime example of a true advocate for all patients
with dementia and their families.

To my amazing and supportive family, I could not have achieved this without your love and
support.

vi

Acknowledgements
I want to thank my chair Dr. Tobey who is one of the most brilliant, witty, and authentic
people I know. Her leadership and guidance regarding the importance of ageism and
discrimination against older adults was truly inspiring. Dr. Carbone’s leadership toward the topic
and importance of diversity and discrimination in our society was a theme made possible by her
class and its content. Dr. Carbone also gave me many suggestions about the topic of ageism and
equity and inclusion. I also want to thank Dr. Murphy our team editor who gave me guidance
with framework and its importance, grammar edits and even structure. Dr. Walsh is by far one of
the most influential and inspiring professors I have ever encountered. I was fortunate to meet him
in 1989 at USC and thereafter I admired his knowledge of the field of aging. His passion toward
Gerontology and its widespread importance in our culture has changed the trajectory of the USC
school of Gerontology and beyond. The aging field is a brilliant, significant, and critical field
due to his many contributions and the mentorship. My hope and prayer is that more students
continue to explore and research ageism and its terrible affects upon our healthcare system,
especially in the senior care arena. Older adults deserve the highest quality care possible and a
paramount amount of admiration from all members of our society.
I also want to acknowledge the efforts of my brilliant and kind research assistant, Dr.
Briana Horwitz. Her time and patience were beyond precious to this study. I am also thankful for
Danielle Peterson, my assistant who also edited this dissertation numerous times, and I am
thankful for her expertise on Grammarly and its usage. Thank you to everyone who assisted me
on this journey.

vii

Table of Contents

Abstract .......................................................................................................................................... iv
Dedication ....................................................................................................................................... v
Acknowledgements ........................................................................................................................ vi
List of Tables .................................................................................................................................. x
List of Figures ................................................................................................................................ xi
List of Abbreviations .................................................................................................................... xii
Chapter One: Overview of the Study .............................................................................................. 1
Importance of Addressing and Measuring the Problem ..................................................... 5
Purpose of the Project and Questions ................................................................................. 7
Organizational Settings ....................................................................................................... 8
Organizational Performance Goal ....................................................................................... 9
Stakeholder Group of Focus ............................................................................................... 9
Performance Goals ............................................................................................................ 10
Methodological Framework .............................................................................................. 10
Definition of Terms........................................................................................................... 11
Organization of the Study ................................................................................................. 12
Chapter Two: Review of the Literature ........................................................................................ 14
Low Rates of Early Diagnostic Screening for Dementia .................................................. 14
Lack of Comprehensive Care and Undertreatment ........................................................... 16
The Pervasiveness of Ageism ........................................................................................... 18
Ageism in Health Care ...................................................................................................... 19
The Double Stigma of Dementia ...................................................................................... 23
The Triple Stigma of Dementia ........................................................................................ 26
Ageism During COVID-19 ............................................................................................... 26

viii

Presentation of Theories and Bronfenbrenner Model ....................................................... 28
Chapter Three: Methodology ........................................................................................................ 36
The Researcher’s Positionality ......................................................................................... 36
Research Questions ........................................................................................................... 37
Overview of the Study Design .......................................................................................... 37
Organizational Settings ..................................................................................................... 38
Target Population .............................................................................................................. 38
Participants ........................................................................................................................ 39
Instrumentation ................................................................................................................. 40
Data Collection Procedures ............................................................................................... 41
Data Analysis .................................................................................................................... 43
Credibility and Trustworthiness ........................................................................................ 44
Ethics................................................................................................................................. 46
Limitations and Delimitations ........................................................................................... 47
Chapter Four: Results and Findings .............................................................................................. 50
The Stakeholder Group of Focus ...................................................................................... 50
The Family Caregiver DPOAs .......................................................................................... 50
Research Questions ........................................................................................................... 51
Findings From Research Question 1 ................................................................................. 52
Findings From Research Question 2 ................................................................................. 64
Findings From Research Question 3 ................................................................................. 70
Chapter Five: Discussion and Recommendations......................................................................... 72
Discussion ......................................................................................................................... 72
Strategies and Recommendations ..................................................................................... 74
Cost/Benefit Analysis ....................................................................................................... 84

ix

Future Directions .............................................................................................................. 85
Summary ........................................................................................................................... 86
Conclusion ........................................................................................................................ 86
References ..................................................................................................................................... 88
Tables .......................................................................................................................................... 109
Figures......................................................................................................................................... 123
Appendix A: Informed Consent/Information Sheet for Nonmedical Research .......................... 126
Appendix B: Interview Protocol ................................................................................................. 129

x

List of Tables
Table 1: Mission of Organizations and Performance Goals for the Study 109
Table 2: Cost Analysis of Medical Care for Dementia 110
Table 3: Assumed Influences On Ageism and Lack of Advocacy 111
Table 4: Data Sources 112
Table 5: Summary Characteristics for Patients with Dementia 113
Table 6: Summary Characteristics for Family Caregiver DPOAs 114
Table 7: A Priori and Open-Coded Themes 115
Table 8: Family Caregiver Response Frequencies 116
Table 9: Summary of Multi-System Influences and Recommendations 118
Table 10: Cost/Benefit Analysis of Medical Care for Dementia 121

xi

List of Figures
Figure 1: Conceptual Framework for the Study 123
Figure 2: Bronfenbrenner’s Social Ecological Model 124
Figure 3: Stages of Assessment Using the Kirkpatrick Model 125

xii

List of Abbreviations
ADGAP Directors of Geriatric Training Academic Programs
CDC Centers for Disease Control and Prevention
DPOA Durable Power of Attorney
NIA National Institute on Aging
WHO World Health Organization
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Chapter One: Overview of the Study
Dementia encompasses a range of chronic, progressive cognitive, and neurological
diseases that are best characterized as a syndrome rather than a disease (Gale et al., 2018; Mayo
Clinic Staff, 2019). Although dementia affects people differently (The Conversation, 2018),
some of the common symptoms of this condition include memory loss, cognitive decline,
behavioral changes, and social withdrawal (Mayo Clinic Staff, 2019). The literature on this
syndrome separates dementia into two categories: irreversible dementia and reversible dementia.
Reversible dementia refers to conditions with behavioral and cognitive changes that can be
reversed by treating the underlying etiology (Chari et al., 2015). These conditions include
delirium, certain infections, thyroid disease, hypothyroidism, anemia (B12 or folate deficiency),
drug addiction, depression, normal pressure hydrocephalus tumor or other space-occupying
lesion, infection (syphilis or AIDS), and physical pain (Tripathi & Vibha, 2009). This makes the
diagnosis of dementia difficult because of the numerous underlying conditions that may mimic
dementia or most often may be confused with delirium or depression (Arnold, 2004). Treatment
and diagnosis of dementia is called ruling out the three Ds; Dementia, Delirium and Depression
(Arnold, 2004).
Irreversible dementia encompasses numerous chronic and debilitating diseases
categorized under the umbrella of the dementia syndrome. Neurodegenerative dementias such as
Alzheimer’s disease account for approximately 70% of dementia cases, but other types of
dementia exist as well, including vascular dementia, dementia with Lewy bodies, and
frontotemporal dementia (Butler, 1975, Gale et al., 2018; World Health Organization [WHO],
2020a). Research suggests that quality medical care for patients with dementia can aid in
symptom management and quality-of-life maintenance (Panegyres et al., 2016). Quality medical
2

care for dementia includes (a) a thorough diagnostic screening protocol (e.g., psychiatric
evaluation, blood test, brain scan, and neuropsychiatric battery of testing to rule out other
conditions; (b) a timely diagnosis; (c) early intervention; and (d) a comprehensive treatment plan
of pharmacological and nonpharmacological care (Panegyres et al., 2016). Examples of
nonpharmacological care include social service referrals, such as case management, care
management, and support groups for the patients and their family caregiver DPOAs (Jennings et
al., 2016).
Several problems occur with the medical care of patients with dementia. Primary care
physicians rarely screen for dementia during routine check-ups with patients in older adulthood
(Being Patient, 2019). Physicians often medically overtreat or undertreat dementia (Botek, 2020;
Sano et al., 2005), and the medical care for dementia often lacks the social services component
of care. Patients with dementia also tend to be medically undertreated for pain, depression, and
urinary tract infections (Dufour et al., 2016; Morrison & Siu, 2000; Volicer et al., 2011).
Ageism is another problem for patients in older adulthood (Kane, 2002; Pecci, 2005).
Ageism refers to stereotyping, discrimination, or prejudice against older adults because of their
age (Butler, 1975). The WHO (2021, p. 1) defines ageism as, “The stereotype (how we think),
prejudice (how we feel), and discrimination (how we act) towards others or oneself based on
age.” Older adults report frequent instances of that ageism in healthcare settings (Pecci, 2015).
Some physicians speak disrespectfully to older adult patients and provide them with improper
medical care, including undertreating conditions and ignoring reported symptoms (Ben-Harush
et al., 2016). Many primary care physicians find it difficult to work with older adult patients and
tend to limit the number of these patients in their practice (Adams et al., 2002). Ageism from
physicians may be particularly problematic for older adult patients with dementia, with these
3

patients experiencing the stigma of their age and their dementia condition (Kane, 2002; MacRae,
2018; Meisner, 2012). A qualitative interview-based study asked primary care physicians about
their attitudes regarding caring for older adult patients (Adams et al., 2002). The thoughts of one
physician who participated in the study sample reveal a troubling attitude about working with
cognitively impaired patients,
The very severe cognitively impaired people, […] I don’t find any particular satisfaction
in taking care of them. Whatever was […] the essence of their humanity is long since
gone, and I’m tending to a body, which has no hope of recovery, and it’s hard for me to
get really excited and enthusiastic in that setting. (Adams et al., 2002, p. 840)
The attitude that was expressed by this physician’s quote illustrates ageism toward older adult
patients with dementia.
Dementia diagnoses may be delayed or missed altogether because of the stereotype that
all older adults experience cognitive decline or memory loss. For example, some physicians may
be unaware that normal age-related development is independent of memory decline and
dementia. One family caregiver reported that a physician brushed off her concerns about her
father’s declining memory as a part of the aging process (Seegert, 2019). There is positive
correlation between age and dementia (Boustani et al., 2003; Bullain & Corrada, 2013). The rates
of dementia double every five years for adults aged 65–90 years and are the highest for those
who are 95 years and older (Bullain & Corrada, 2013; Corrada et al., 2010). The stereotype that
dementia results from aging is unfounded, however, because cognitive decline is not inherent in
the aging process (Centers for Disease Control and Prevention [CDC], 2020a). Physicians may
mistake the correlation between dementia and age as a cause-effect relationship and assume that
dementia symptoms arise naturally as people age (Evans, 2018).
4

Dementia also has the stigma of always being irreversible (Boustani et al., 2003; Wenger
& Shapiro, 2020). Adams et al. (2002) showed that physician feel that it is futile to medically
treat patients who are cognitively impaired. As one participant from the study commented, “I
mean, there’s not a lot that medicine can do about that” (Adams et al., 2002, p. 839). The stigma
of the irreversibility of dementia was demonstrated in response to the COVID-19 pandemic
(Wenger & Shapiro, 2020),
Physicians have discussed the irreversibility of dementia as a reason to deny care to
patients with this condition in light of the current COVID-19 pandemic. Physicians have
stated, “Many patients in ICUs [intensive care units] are dying of… advanced irreversible
dementia…” In a large proportion of these kinds of cases, the physicians caring for the
patient recognize that death is imminent. Still, treatment often continues because families
are unwilling to acknowledge the inevitable. (p. 1)
This statement discusses the irreversibility of dementia as a reason to deny medical care to
patients with this condition during the COVID-19 pandemic.
Family caregiver DPOAs of patients with dementia also face stigmatization. The above
mentioned quote by Wenger and Shapiro (2020) shows this stigma. Family caregiver DPOAs
have been described as overbearing, intrusive, guilt-ridden, or in denial (McCormack et al.,
2017; Wenger & Shapiro, 2020). These stigmas impede the family caregiver DPOA’s ability to
effectively advocate for quality dementia care from physicians (Hermann et al., 2018).
In summary, dementia diagnoses are often delayed or missed altogether and oftentimes
dementia symptoms are erroneously considered to be a normal part of aging. When diagnoses are
made, patients with dementia are often medically overtreated or undertreated or do not receive
5

social service referrals. Patients with dementia also face stigmas about their age and condition,
and their family caregiver DPOAs are often stigmatized as being overbearing and in denial.
Importance of Addressing and Measuring the Problem
Poor quality medical care is an equitability problem for patients with dementia. With an
estimated 49 million Americans aged 65 years or older, there are more older adults living in the
United States than ever before (National Institute on Aging [NIA], 2020a). By 2030,
approximately 20% of Americans will be 65 years or older, with an estimated 9 million
Americans aged 85 years or older (Ouchida & Lachs, 2020). Approximately 5.7 million
Americans live with dementia (American Speech-Language-Hearing Association, 2020), and
these rates are expected to continue to rise (Lynch, 2018). Alzheimer’s disease is the third most
expensive disease to treat in the United States after cancer and coronary heart disease. By 2050,
the total cost of care for Alzheimer’s disease is expected to increase to $1.1 trillion. According to
Dr. Fargo, a strategy for offsetting these costs includes a combination of research and improved
care for patients with dementia and their family caregivers (Lynch, 2018):
Soaring prevalence, rising mortality rates, and lack of effective treatment all lead to
enormous societal costs. Alzheimer’s is a burden that’s only going to get worse. We must
continue to attack Alzheimer’s through a multidimensional approach that advances
research while also improving support for people with the disease and their caregivers.
(p. 1)
Improvements in the quality of medical care for patients with dementia could lead to faster
diagnoses and more effective treatments, which could be vital to saving the United States from
seismic spending on this condition and for improving the lives of patients with dementia.
6

Urinary tract infections that often co-occur with dementia tend to go untreated (Bail et al.,
2013). When these co-occurring conditions are left untreated, patients and their families incur
unnecessary costs. For example, urinary tract infections can cause hospitalization. With early
detection, they are almost always treatable (Choosing Wisely, 2014). Urinary tract infections can
be tested with a dip stick for $1.00 versus a urinalysis, which costs under $100 without
supplemental insurance coverage (Choosing Wisely, 2014). If the test is positive for bacteria, an
antibiotic may cost up to $50 (Choosing Wisely, 2014). A physician who undertreats a urinary
tract infection and neglects the tests and treatment required may cause significant financial
consequences to the patient, the family, and the insurance plan or Medicare (Rajan, 2020). For
example, the patient may end up in the emergency room with bacterial sepsis if the infection is
missed and untreated (Mody & Juthani-Mehta, 2014). The patient may fall, as falls are more
common with urinary tract infections, and as a result, the patient may incur bone fractures, which
may result in earlier mortality (Rhoads, 2007). The patient may exhibit other behaviors such as
agitation and depression, both of which are common side effects of an uncontrolled tract
infection in an older adult with dementia. These patient behaviors often cause a family to
prematurely place their loved one in a memory care facility, which can cost over $100,000 a year
(Genworth, 2021). The inequity of medical care for older adults extends to a lack of screening
for cervical cancer. The Academy of Family Physicians recommends not screening for cervical
cancer and many other conditions in women older than 65 years (American Academy of Family
Physicians, 2019).
Acetylcholine drugs are often overlooked by general practitioners to treat dementia
(Requena et al., 2006). These medications slow the progression of Alzheimer’s disease and
dementia and, in some cases, improve the memory of older adults. Medications such as the
7

Exelon patch, Aricept, Namenda are in the treatment category called acetylcholinesterase
inhibitors. Physicians failing to prescribe these medications to patients with dementia or to fail to
follow-up on whether patients are adhering to the medication schedule. Incorrectly undertreating
dementia and not addressing early-onset dementia symptoms negatively impacts patients with
dementia and their family members (Jennings et al., 2016). Pharmacological medication for the
treatment of dementia can delay institutionalization, save money for patients’ families, and give
patients a dignified quality of life while aging at home (Requena et al., 2006).
There is an insufficient number of physicians specializing in geriatric medicine, and only
about half of the fellowship-trained physicians specializing in geriatric medicine pursue
recertification (Bragg et al., 2012; Ouchida & Lachs, 2020). According to Pecci (2019), “there
doesn’t seem to be much interest in geriatrics. There are only approximately 7,000 geriatricians
in the United States” (p. 1). Many older adult patients with dementia are not getting the medical
care they need (e.g., Chodosh et al., 2007; Ganz et al., 2010; Jennings et al., 2016; Reuben et al.,
2013; Sano et al., 2005; Wenger et al., 2011). Physicians are not required to complete geriatric
training (The Conversation, 2018). Only 27% of medical schools in the United States require
geriatric rotation during the medical student residency or internship hours (Bragg & Warshaw,
2005). According to Higashi et al. (2012), the United States health care system lacks ethical
training and mentoring in geriatric medicine. This problem of practice requires analysis and
strategic solutions to combat ageism and improve medical care quality for patients with dementia
(Organization for Economic Co-Operation and Development, 2018).
Purpose of the Project and Questions
The purpose of this study was to understand ageism and poor quality medical care from
physicians and a lack of advocacy from family caregiver DPOAs for patients with dementia.
8

The assumed influences were multisystem levels of influence from Bronfenbrenner’s (2005)
social ecological model from the terror management theory (Greenberg et al., 1986), the self-
efficacy theory (Bandura, 1994), and the theory of stereotype threat (Steele & Aronson, 1995).
These theories were integrated with Bronfenbrenner’s (2005) social ecological model to examine
the multisystem levels of influence on ageism, poor quality medical care from physicians, and
the lack of advocacy from the family caregiver DPOAs. This study was guided by the following
three research questions:
1. What quality of medical care do physicians provide to older adult patients with dementia,
as perceived by family caregiver DPOAs?
2. What macrosystem, exosystem, mesosystem, and microsystem influences from
stereotype threat, terror management, and self-efficacy are related to poor quality medical
care from physicians and a lack of family caregiver DPOA advocacy, as perceived by
family caregiver DPOAs?
3. How can caregivers improve the effectiveness of their advocacy for older adult patients
with dementia and enhance primary care physicians’ accountability for the diagnosis and
treatment of these patients?
Organizational Settings
The memory care organization is a home-like environment that provides assisted living
services in a small setting to its residents. This memory care organizational context includes a
nonprofit assisted living facility specializing in memory loss located in Southern California. Its
mission is to provide a high-quality, full-service memory care facility for older adults with
dementia. It is a home-like environment that provides assisted living services in a small setting to
its residents. Older adult residents at this facility are encouraged to socialize and stay active to
9

maintain their health and quality of life. This facility setting represents one place where efforts
can be made to empower family caregiver DPOAs on best practices to demand quality medical
care for those living with dementia.
Organizational Performance Goal
The organizational performance goal of the assisted living facility in Southern California
is to empower family caregiver DPOAs and their loved ones with dementia. To achieve the
organizational performance goal, the assisted living facility can collaborate with local nonprofit
organizations in Southern California to develop advocacy training programs that empower
family caregiver DPOAs of patients with dementia. The training programs can be modeled after
a nonprofit program that already exists called the Savvy Caregiver program (Hepburn et al.,
2003). This program offers 8-week long training sessions for family caregivers of individuals
living with dementia (Hepburn et al., 2003). This training program teaches family caregivers
basic knowledge about dementia, skills to determine fluctuating abilities in individuals with
dementia, and attitudes needed to manage the challenges of caring for these individuals. The
residential care facility in Southern California could work with local nonprofit organizations to
develop advocacy training for family caregiver DPOAs.
Stakeholder Group of Focus
Three key stakeholders were considered for this study: older adult patients with dementia,
family caregiver DPOAs, and primary care physicians. Older adult patients with dementia are
integral because the medical care they receive directly affects their symptom management and
quality-of-life maintenance. Family caregiver DPOAs play a significant role in doctor visits
because they are the facilitator of the patients’ needs and can speak or advocate for them if they
are incapacitated (NIA, 2017). Family caregivers have the right to request diagnostic screening
10

and medical services for the dementia patient. Quality medical care for dementia helps with
quality-of-life maintenance for these patients and their family giver DPOAs. Primary care
physicians are integral to making a timely and thorough diagnosis and providing comprehensive
medical care for patients with dementia. The patients with dementia were selected as the
stakeholder groups of focus for this study because of the benefits of symptom management and
quality-of-life maintenance in response to improved medical care.
Performance Goals
Table 1 displays three stakeholder performance goals for this study. The organizational
goal was designed to work with local nonprofit organizations to develop 6-week long caregiver
advocacy training programs. These programs could empower family caregiver DPOAs to
demand respectful care and quality medical treatment from primary care physicians for patients
with dementia. The performance goal for family caregiver DPOAs is to require early and
thorough diagnostic dementia screening and comprehensive medical care for patients and
themselves by July 2023. The primary care physicians’ performance goal is to show reduced
ageist behaviors and improved quality of medical care by July 2023. The performance goal for
dementia patients is to receive proper diagnoses and medical care by July 2023.
Methodological Framework
The research questions used in this study were addressed using a qualitative research
design. The participants responded to 32 semi-structured, open-ended interview questions.
The interview protocol was administered to a sample of 12 family caregiver DPOAs, each of
whom provide care for a family member or loved one with dementia or who provided care for a
patient with dementia who is now deceased. Family caregiver DPOAs, who care for a resident at
the organizational setting, were recruited to participate. A research assistant was selected for this
11

study to carry out the data collection. For health and safety reasons in the COVID-19 pandemic,
the research assistant conducted the interviews with each family caregiver online with audio
Zoom calls (Barbu, 2013). Each of the family caregiver DPOAs read an informational consent
sheet prior to their participation. The family caregivers’ answers to the interview questions were
audio recorded on Zoom. After data collection, each interview was transcribed and thematically
coded using a priori and open-coded themes.
Definition of Terms
This section presents the definitions of terms in alphabetical order.
Ageism: The act of stereotyping, being prejudiced, or discriminating against someone
because of their age (Butler, 1975).
Assisted living: A housing facility where older adults may reside and receive 24-hour
supervision and care (National Center for Assisted Living, 2020).
Comprehensive dementia care: Medical care for patients with dementia that includes
both pharmacological and nonpharmacological interventions (Moore et al., 2018).
Dementia: A broad category syndrome that causes a progressive decline in cognitive and
behavioral functioning (Mayo Clinic Staff, 2019).
Double stigma of dementia: The dual stigma that older adults with dementia experience
because of their age and dementia condition (Evans, 2018).
Durable power of attorney for family caregivers: A DPOA is a legal document that
authorizes a family caregiver to act on behalf of another individual (e.g., an aging parent). The
authorizer (e.g., the aging parent) is referred to as the Principal, and the authorized person (e.g.,
the adult child) is referred to as the Agent or Attorney-in-Fact. The DPOA is dura le, meaning
12

that it remains in effect even after the Principal is deemed to be incapacitated (Stringfellow,
2017).
Early dementia: Mild cognitive impairment or poor cognitive performance in more than
one domain that interferes with daily functioning (Panegyres et al., 2016).
Geriatrician: A physician who is trained to treat and manage the health needs of older
adults. Geriatricians can demonstrate their expertise in geriatric medicine by meeting the
requirements for certification by the American Board of Medical Specialties (Leipzig et al.,
2014).
Older adulthood: The developmental stage in the lifespan that includes adults aged 65
years or older (Vaughan et al., 2016).
Primary care physician: A physician who manages a person’s health care over time and
who can provide treatment and prevention-based care (eHealth, 2018).
Stereotype: A fixed and overly general view of a particular group of people (Cardwell, 1996).
Organization of the Study
This study is organized into five chapters. Chapter One discussed the problem of practice,
including ageism in society and in health care and the low quality of medical care for patients
with dementia. Chapter Two reviews the literature relevant to this study, including research
about the diagnosis of dementia, the treatment of dementia, and the role of ageism in health care.
Bronfenbrenner’s multisystem influences, integrated with terror management theory, self-
efficacy theory, and the theory of stereotype threat, are also presented in Chapter Two. Chapter
Three discusses the methodological approach for this study, including participant recruitment,
data collection, data analysis, efforts that were made to strengthen the credibility and
trustworthiness of the study, ethics, and the study limitations and delimitations. Chapter Four
13

presents the results and findings from the coded interview data and describes when the a priori
themes were supported and where open coded themes emerged from the data. Chapter Five
presents recommendations and strategies from Bronfenbrenner’s social ecological multisystem
levels of stereotype threat, terror management, and self-efficacy for how to reduce physician
ageism, improve the quality of medical care from physicians, and strengthen family caregiver
DPOAs’ advocacy skills.
14

Chapter Two: Review of the Literature
Chapter Two begins with research on the overall low quality of medical care for
dementia, including the low rates of dementia diagnoses and the lack of comprehensive medical
care for dementia. This part of the review includes a discussion about these low rates, including
failures to make a timely diagnosis or any diagnosis at all. It considers the lack of comprehensive
care programs as a contribution to the undertreatment of dementia patients. Next, an overview is
presented of ageism in society and healthcare, the double and triple stigmas of dementia, and
ageism during COVID-19. This review considers ageism’s role in the low-quality provision of
medical care from physicians to older adult patients. After the general literature review, Chapter
Two discusses multisystem level influences of stereotype threat, terror management, and self-
efficacy on ageism and poor quality medical care from physicians and the lack of advocacy from
family caregiver DPOAs for patients with dementia.
Low Rates of Early Diagnostic Screening for Dementia
Early dementia is defined as mild cognitive impairment or poor cognitive performance in
more than one domain that interferes with daily functioning (Panegyres et al., 2016). Experts
recommend carrying out diagnostic screening for all older adults who exhibit early signs of
cognitive impairment or memory loss (Panegyres et al., 2016). Early diagnostic screening
requires comprehensive screening procedures because 16% of patients show no memory deficits
and may have other symptoms, such as personality changes and changes in judgment (Biogen,
2020). An early diagnosis during early dementia can lead to earlier medical intervention, which
can help with symptom management and may even delay disease progression (Panegyres et al.,
2016). Dementia diagnoses that are promptly made also allow for more time for older adults to
15

make advanced directive (e.g., end-of-life) decisions and foster a longer duration of
independence (Jennings et al., 2016; Ngo & Holroyd-Leduc, 2014).
The procedure and process through which dementia is diagnosed comprehensively rules
out other conditions that mimic the symptoms of dementia. For example, a formal dementia
diagnosis cannot be readily made at a routine check-up visit with a primary physician (Boustani
et al., 2003). A thorough and accurate dementia diagnosis is made after a stringent clinical
evaluation, including many different screening procedures, and after many other reversible
conditions, including reversible dementias, are ruled out. These diagnostic assessments include
blood tests, cognitive testing, functional testing, neurological testing, psychiatric testing,
medication history, neurological evaluation, psychiatric evaluation, social history testing, and
imaging screening procedures, including magnetic resonance imaging and positron emission
tomography (Panegyres et al., 2016). There are problems with how dementia diagnostic
screenings are typically conducted. Physicians often rely on the presence of specific symptoms to
determine which patients should receive brain scans (Health Quality Ontario, 2014). Brain scans
can detect conditions that are not apparent when checking for physical symptoms, and they
provide more precise dementia diagnoses and rule out reversible causes of dementia (Health
Quality Ontario, 2014). Comprehensive screening procedures can also rule out conditions other
than dementia that may be contributing to cognitive impairments, such as delirium,
polypharmacy, infections, thyroid dysregulation, B12 deficiency, hydrocephalus, amnestic
alcohol syndrome, and syphilis (Panegyres et al., 2016).
Despite evidence of the importance of early dementia screening and diagnosis, and
plentiful information about proper screening procedures, more than 50% of individuals with
dementia never receive a formal diagnosis (Borson et al., 2013; Boustani et al., 2003). Only
16

about 16% of older adult patients are screened for dementia during doctor visits (Being Patient,
2020). Even when a dementia diagnosis is made, it is often delayed until later in the course of the
memory loss condition, when symptom management and quality-of-life maintenance are more
complicated (Bradford et al., 2009).
Lack of Comprehensive Care and Undertreatment
The effective treatment of dementia requires a comprehensive care plan or program that
includes pharmacological and nonpharmacological interventions (Moore et al., 2018).
Conventional medications for symptom management include acetylcholinesterase inhibitors
(e.g., Exelon patch, Donepezil, Memantine, Namzaric, and Memantine) and Cerefolin NAC
(prescription B12) (Birks, 2006; Dementia Care Central, 2019; Moreno, 2003; Requena et al.,
2006; Thaipisuttikul & Galvin, 2012). The nonpharmacological aspects of medical care for
dementia include servicing the psychological needs of patients with dementia and their family
caregivers (Jennings et al., 2016). These caregivers have been referred to as the invisible second
patients because caring for a family member or loved one with dementia is associated with
numerous adverse consequences, such as depression, caregiver burden, social isolation, physical
health problems, and financial hardship (Brodaty, 2009). Comprehensive care programs need to
include medical treatments for patients and social referrals for patients with dementia and their
family caregiver DPOAs (Brodaty, 2009).
The University of California, Los Angeles (UCLA) Alzheimer’s and Dementia program,
implemented in July 2012, is a model for effective, comprehensive managed care programs. This
intervention operates with co-management with a dementia care manager (DCM) and a nurse
practitioner, collaborating with primary care physicians and community programs, to offer a
multipronged program of dementia care. In this program, health care professionals regularly
17

assess the needs of the older adult patient and family members, their continual treatment, and
connections to community programs, such as caregiver training and support groups, advanced
care planning and 24/7 access to health care professionals specializing in dementia (Reuben et
al., 2013). Evidence shows that this program effectively improves the quality of life and well-
being of patients and their family caregivers (Reuben et al., 2013). This intervention highlights
the value of comprehensive care management programs in the treatment of dementia.
Dementia in patients often goes undertreated or that physicians fail to adhere to
comprehensive treatment protocols (Jennings et al., 2016; Volicer et al., 2011). In one study, a
majority (64.5%) of older adult patients with Alzheimer’s disease or their caregivers reported
that they had not received acetylcholinesterase inhibitors (Sano et al., 2005). A positive
association was found between medical treatment with acetylcholinesterase inhibitors and a
longer and higher quality of life since diagnosis (Sano et al., 2005). This positive association
suggests that patients diagnosed later are more likely to receive medication and that those
diagnosed earlier were medically undertreated (Sano et al., 2015). Jennings et al. (2016) reported
that physicians often fail to fulfill 18–42% of the components of comprehensive care plans for
patients with dementia.
These patients are often undertreated for other co-occurring conditions, including pain
and depression. Patients with dementia receive significantly less opioid medication for pain from
a hip fracture than cognitively intact patients (Morrison & Siu, 2000). Cognitively impaired
nursing home residents are less likely than other patients to receive analgesic medication for pain
(Nygaard & Jarland, 2005). The underdiagnosis and undertreatment of depression among older
adult nursing home residents with cognitive impairment is also documented (Volicer et al.,
2011). As mentioned previously, one of the most commonly misdiagnosed conditions of patients
18

with dementia by primary care physicians is the urinary tract infection; it is one of the most
common causes for emergency room hospitalization (Sampson et al., 2009). Early treatment of
urinary tract infections prevents depression, sleep problems, discomfort, and pain (Scrutton, &
Brancati, 2016). Poor-quality medical care for dementia adds significant annual costs to society.
Dementia care costs the United States $259 billion per year (Stringfellow, 2020). Table 2 shows
a breakdown of the estimated annual costs to the United States. As displayed in Table 2, the U.S.
total annual costs are $522 billion for ageism-reducing strategies but $617 billion for continued
poor-quality medical care for dementia. The ratio of the costs of poor-quality medical care for
dementia to the costs of ageism-reducing strategies is 1.18. A value over 1.0 indicates that the
ageism-reducing strategy will deliver a positive net present value in benefit-to-cost-ratio
analysis. The value of 1.18 suggests that spending money on ageism-reducing strategies would
save the United States money spent each year because of poor-quality medical care for dementia.
Ageism-reducing strategies would help reduce ageism in health care and improve the overall
quality of medical care provided to older adult patients with dementia.
The Pervasiveness of Ageism
Ageism is defined as stereotyping, prejudice, and discriminating against individuals
because of their age (Butler, 1975). Ageism often characterizes older adults as dependent, frail,
weak, forgetful, difficult, and incompetent (Levy & Macdonald, 2016). According to the WHO
(2020b), ageism is one of the most pervasive and socially condoned forms of prejudice in society
today. Ageism often goes unnoticed (Cuddy & Fiske, 2002) and is not widely disputed like other
forms of discrimination, including sexism and racism (WHO, 2020b). For the most part, ageism
goes largely unnoticed in the United States (Span, 2019). For example, Span (2019) recalled an
advertisement on a subway that said, “when you want a whole cake to yourself because you’re
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turning 30, which is basically 50, which is basically dead” (p. 1). Another media campaign tried
to scare young adults into voting by stereotyping older adult voters as, “selfish, addled, and
unconcerned about the future” (Span, 2019, p. 1). Alana Officer, who leads the WHO’s global
campaign against ageism, argues that ageism is “an incredibly prevalent and insidious problem”
(Span, 2019, p. 1). In line with this statement, a survey study showed that a majority (80%) of
individuals who were 60 years or older reported ageism experiences, such as people assuming
they had memory or physical deficits because of their age (Palmore, 2001). The most frequent
form of ageism reported was the telling of jokes that make fun of older adults. Based on this
evidence, ageism is highly prevalent and even widely condoned in today’s society.
A core problem with ageism is that it negatively impacts older adults. In a systematic
review of 422 studies from around the world, 96% of these studies showed that ageism is
connected to negative health consequences in older adults, such as depression, poor health, more
hospitalizations, and earlier mortality (Chang et al., 2020). Likewise, other research has shown
that recurrent experiences with ageism may act as chronic stressors that ultimately degrade older
adults’ health and well-being (Allen, 2016). When older adults perceive that they are pitied,
regarded as of lower social status, or viewed with contempt, they are more likely to report
experiences of age-based discrimination. This finding suggests that ageism causes older adults to
believe that they are perceived as inferior because of their age (Vauclair et al., 2016). This
research sheds light on the ubiquity of ageism in society and its adverse effects on older adults’
health and well-being.
Ageism in Health Care
Ageism is pervasive in the United States health care system (Pecci, 2015) with 29% of
older adult patients reporting frequent experiences of age-based discrimination in health care
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settings (Rogers et al., 2015). Research has identified highly ageist remarks from health care
providers. For example, a physician assistant described language used by colleagues:
“[Emergency departments] are hectic, and those who work in them are quick to mentally
pigeonhole those we treat here. Older patients are typically mentally complex absorbers of time
and resources that can lead emergency department practitioners to refer to these cases as ‘train
wrecks’” (Currey, 2008, p. 1). Some philosophers have even gone so far as to radically propose
the idea that older adults should have the duty to die and not be a burden on our health care
system (Hardwig, 1997).
Ageism in health care toward older adult patients may stem partly from how health care
professionals are trained (Graham, 2019). Medical students are often taught that only those who
are in the “prime of their lives” are “normal,” and very little time is spent during medical school
on how to properly and effectively care for older adult patients (Graham, 2019, p. 1). Many
medical students grow to view older adult patients as “frustrating, uninteresting, and less
rewarding overall” (Ouchida & Lachs, 2020, p. 1). It has been argued that these negative views
about older adult patients likely arise from the general ageism that exists in health care overall
(Ouchida & Lachs, 2020). Kane (2002) argues that physicians’ general lack of training in
geriatric medicine underlies their negative attitudes toward older adult patients and the low
quality of medical care provided to older adult patients.
Ageism may be problematic when it comes directly from older adults’ physicians,
primarily because older adults visit their primary care physician 12 times per year, on average,
and approximately 80% see a primary care physician at least one time per year (Ouchida &
Lachs, 2020). Primary care physicians who are ageist may provide poor quality medical care for
patients with dementia by denying them thorough diagnostic screening or comprehensive
21

medical care (Gunderson et al., 2005). Gunderson et al. (2005) conducted a study to examine
primary care physicians’ attitudes in rural Florida toward older adult patients. The study’s
findings showed that physicians who regularly provide medical care to older adult patients
exhibit ageist perceptions, especially toward those older than 85 years and those in the nursing
home population. Most critically, these findings indicate that this ageism affects the quality of
medical care provided to older adult patients (Gunderson et al., 2005). The problem of ageism
from physicians may be particularly problematic for older adult women, who constitute most of
the older adult population. Older adult women who already have a history of experiences with
sexism may be especially vulnerable to ageism from physicians, such as communication through
baby talk, infantilization, and brushing off health concerns as only a matter of getting older
(Chrisler et al., 2016). If not addressed, ageism from physicians can have adverse effects on the
quality of medical care they provide to their older adult patients.
Ageism is present in the diagnosis and treatment of diseases in older adult patients
(Adams et al., 2006; Bond et al., 2003; Rudd et al., 2007). Age-based discrimination occurs in
research and clinical trials: older adults, in general, and the population of older adults with
dementia are underrepresented in research and clinical trials (Briggs et al., 2012; Cruz-Jentoft et
al., 2013; Wilkinson, 2002). A few studies have focused on the affective aspect of ageism in the
health care system, such as prejudice and discrimination against older adults because of their age
(Buttigieg et al., 2018). This research suggests the pervasiveness of ageism in health care and
that many studies have not considered compelling aspects of this problem.
Health care providers’ attitudes about the physical health, mental health, and cognitive
functioning of older adults are ageist (Davis et al., 2011). A majority of the health care providers
in this study were physicians, but participants included nurse practitioners and physician
22

assistants. Most of the health care providers sampled in this study agreed with statements such as
“having more aches and pains is an accepted part of aging” and “the human body is like a car:
when it gets old, it gets worn out” (Davis et al., 2011, p. 860). Fifty two percent of the health
care providers endorsed the statement that people should expect to become more forgetful as
they age, and 17% endorsed the statement that “mental slowness” is “impossible to escape”
(Davis et al., 2011, p. 860). The results of this study suggest that ageism is present in the views
of health care providers toward older adult patients’ symptoms and health conditions.
Ageism plays a role in how physicians communicate with their older adult patients (Ben-
Harush et al., 2017). For example, physicians tend to engage in condescending and infantilizing
communication styles and exclude older adults from discussions and decisions about their own
medical care (Lagacé et al., 2012). According to Ben-Harush et al. (2017), physicians, nurses,
and social workers reported using ageist communication patterns because it was too time-
consuming to speak louder and slower to their older adult patients. There is evidence that
physicians tend to speak more disrespectfully to older adult patients than younger patients, as
presented by a study that analyzed 80 audiotaped visits with physicians (Greene et al., 1986).
The findings from this analysis demonstrated that physicians provided better communication in
the form of questioning, information, and support to younger patients and had lower levels of
patience, engagement, and egalitarianism with older adult patients. In this study, physicians
responded at a lower rate to the older patients’ health concerns.
There is evidence of physicians demeaning older adults by communicating to them with
“elderspeak,” which is speaking to older adults with greater intonation, pitch, volume, more
repetition, and language that is simpler in terms of vocabulary and grammar (Ouchida & Lachs,
2020). Elderspeak is highly problematic because older adults tend to not respond well to
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elderspeak. According to Williams et al. (2005), older adults perceive elderspeak to be
degrading, leading to reduced self-esteem and increased depression in older adult patients.
Ageism from physicians extends to undertreating aches and pains in older adult patients
(Ouchida & Lachs, 2020). An older adult participant from a New York focus group described a
discussion with his doctor: “I went to [the doctor], and I said, ‘Look I can’t walk. What am I
supposed to do?’ He says, ‘How old are you?’ I said, ‘I’m close to 90.’ ‘What do you expect?
You’re an old man.’” (Makris et al., 2015, p. 4). The participant suggested that his age caused
the doctor to deny him pain treatment. Ageism from physicians negatively impacts older adults’
functioning. According to Stephanie Rogers, MD, MPAS, MPH, “ageism in healthcare is
prevalent and experienced by many older adults. People who felt like they were discriminated
against had worsened functional status” (Pecci, 2015). This statement suggests that when older
adults experience ageism in health care settings, their functioning declines. In support of this
idea, older adults with ageism experiences in health care are less likely to carry out simple
functioning tasks, such as walking, bathing, eating, and getting dressed (Pecci, 2015). The
literature in this section suggests that ageism is responsible for physicians speaking
disrespectfully and providing poorer quality medical care to older adult patients, leading to
poorer functioning in these patients.
The Double Stigma of Dementia
Older adult patients with dementia face the double stigma of their age and their dementia
condition (Evans, 2018). The double stigma of dementia causes shame and social withdrawal in
patients with dementia (Wilkinson, 2002). This stigma is illustrated in an archival study of 350
newspaper articles that described dementia as a “tsunami,” “a bomb ready to explode,” “brain-
wasting,” “terrible affliction,” and “worse than death” (Peel, 2014, p. 1). There are several
24

commonalities between the language and treatment used in the 1980s to describe patients with
HIV/AIDS. Even though dementia is not thought of as contagious or preventable, many of the
terms used towards older patients are reminiscent of the 1980s portrayal of HIV/AIDS as
shameful. The stigma of having dementia may cause some individuals with dementia to be
embarrassed or ashamed about their condition. The word dementia is often replaced with other
less stigmatizing terms such as memory loss or cognitive impairment to make the disease seem
more normal (Sampson et al., 2006).
Loneliness occurs more often for those living with dementia (Swaffer, 2014). For
example, people with dementia experience frequent losses of friendships due, at least in part, to
the stigma associated with the status of having dementia (Swaffer, 2014). Individuals living with
dementia experience ridicule, shame, and impatience from others (Werner, 2014). These social
losses are above and beyond the social isolation that often occurs naturally as people age; for
example, loneliness is more common among older adults, primarily because of the death of
peers, including partners, decreased societal roles (i.e., retirement), and increased physical
limitations (Evans, 2018). The loneliness and isolation that often occurs for individuals with
dementia is an issue because they can reap many benefits from social interactions. For example,
individuals with dementia experience reduced agitation and a better quality of life from social
interactions (Cohen-Mansfield & Parpura-Gill, 2007). Unfortunately, as long as the double
stigma of dementia continues, it seems likely that loneliness and isolation for older adults with
dementia will persist.
Physicians contribute to the double stigma of dementia when interacting with older adult
patients with dementia (Higashi et al., 2012). Medical students and residents held highly ageist
views toward patients with dementia (Higashi et al., 2012). As stated by one of the medical
25

trainee participants in the study by Higashi et al. (2012), “it’s always a bigger save when you
help a 35-year-old woman with kids than it is to bring an altered 89-year-old with a urinary tract
infection back to her semi-altered state” (p. 1). In this quote, the physician mentions both the
older adult patient’s age and cognitive impairment and argues the older patient’s life is less
important than the younger adult patient’s (Higashi et al., 2012). The double stigma of dementia
may extend to the quality of medical care that physicians provide to older adult patients with
dementia. For example, physicians may miss or delay dementia diagnoses because of their belief
in the ageist stereotype that memory loss is simply a natural part of the aging process. In line
with this rationale, Seegert (2019), a caregiver for her 85-year-old father, noted that her father’s
primary care physician ignored her observations about her father’s failing memory. According to
Seegert (2019), the physician brushed off her father’s memory problems as being “normal for his
age” (p. 1).
Haley et al. (1992) demonstrated that family caregivers reported having to wait an
average of three years after the onset of dementia symptoms before their relative’s dementia
condition received a formal diagnosis. Evans (2018) suggested that many treatments for older
adults with dementia are not offered because of physicians’ belief that rehabilitation is
impossible, despite evidence to the contrary. Kane (2002) argued that physicians’ general lack of
education in geriatric medicine could cause negative views and less interest in treating older
patients with dementia. Family caregiver DPOAs of patients with dementia often face the
additional stigma from physicians as being overbearing, intrusive, guilt-ridden, or in denial
(McCormack et al., 2017; Wenger & Shapiro, 2020). This stigma may cause an additional
problem of making it difficult for family caregivers to effectively communicate the medical
needs of patients with dementia.
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The Triple Stigma of Dementia
Beyond the double stigma of dementia, there could be a triple stigma of dementia. Aging
patients with dementia from a marginalized gender or racial/ethnic group face distinct struggles,
in terms of isolation, discrimination, and barriers to accessing health care (Fredriksen-Goldsen et
al., 2016). Safer et al. (2017) showed that transgender individuals experience drastic health
disparities, such as a lack of access to providers who are knowledgeable about the health needs
of this population. Women with mental health conditions commonly face challenges such as
incomplete screenings, health assessments, and medical treatment (Van Den Tillaart et al., 2009).
The triple stigma of being an older adult patient with dementia and a member of a marginalized
gender or racial/ethnic group may create distinct struggles in attaining quality medical care
above and beyond what has already been covered regarding the stigmas of age and dementia.
Ageism During COVID-19
Ageism against patients with dementia may be further exacerbated because of the
COVID-19 crisis (De Medeiros, 2020). According to the CDC (2020b), older adults are among
the most at-risk populations for severe illness from COVID-19. Although beneficial for
identifying individuals at increased risk, this information has created a backlash of ageism
against older adults (De Medeiros, 2020). For example, Fraser et al. (2020) compiled comments
from researchers from more than 20 countries and found numerous ageism accounts on social
media. A few of their cited examples include Twitter hashtags such as #BoomerRemover and
#SittingDucks and Facebook trends describing high mortality rates of older adults as “inevitable
and normal” (Fraser et al., 2020).
Extreme ageism in the health care system during the COVID-19 pandemic is well
illustrated in an article by Wenger and Shapiro (2020), where they argue that patients with
27

chronic and irreversible health conditions are taking up too many hospital beds that could be
better used for COVID-19 patients with a better chance of recovery. According to Wenger and
Shapiro (2020),
Many hospitalized patients in ICUs are dying of cancer or advanced irreversible dementia
or are on ventilators because of irreversible heart, lung, or liver failure. In a large
proportion of these cases, the physicians caring for the patient recognize that death is
imminent, but treatment continues, often because families are unwilling to acknowledge
the inevitable. (p. 1)
This statement by Wenger and Shapiro (2020) discusses the irreversibility of dementia as a
reason why medical care for older adults with dementia should be denied or restricted in favor of
patients with better recovery odds. This statement is blatant ageism that places a qualitatively
lower value on the lives of older adults with dementia than those of others. The American
Psychological Association has suggested techniques to help address ageism during COVID-19.
One suggestion is to call out leaders for devaluing older adults, as immediately addressing the
discrimination is critical (Committee on Aging, 2020). It was found that some hospitals’
ventilator allocation guidelines were based on age (Fraser et al. 2020). As recent as January 29,
2021, Governor of New York, Andrew Cuomo responded “who cares” to the data that 12,743
older adult residents living in long term care facilities died in New York (Blake, 2021). He
explained further that he did “not care” where those who passed away lived. New York
underreported the number of actual deaths of older adults living in long term care facilities. The
original number was 8,505 deaths from residents, however, after an attorney general
investigation from New York State Attorney General, Letitia James revealed the 12,743-total
number of deaths of residents, New York adjusted their numbers. Underreporting, a lack of
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transparency, and using ageist and callous language such as “who cares” indicates the governor’s
lack of respect and New York’s inequitable healthcare toward institutionalized older adults
(McKinley & Ferre-Sadurni, 2021). The fact that physicians in the United States are not required
to complete geriatric training may explain the poor interventions for older adults with COVID-
19. Older adults require better care and less ageism in health care (The Conversation, 2018).
Presentation of Theories and Bronfenbrenner Model
This section provides an overview of the theory of stereotype threat, the terror
management theory, and the self-efficacy theory. Bronfenbrenner’s (2005) social-ecological
model. This section includes integrating the assumed influences from terror management, self-
efficacy, and stereotype threat with the multisystem levels from Bronfenbrenner’s social-
ecological model. The Presentation of Theories and Bronfenbrenner Model section of Chapter
Two presents a conceptual framework for understanding physicians’ ageism and poor quality
medical care and family caregiver DPOAs’ lack of advocacy for patients with dementia.
Terror Management Theory
Physicians who treat older adult patients with dementia experience fears of their mortality
or their own future risk of dementia (Kane, 2002). According to terror management theory,
individuals’ fears of their mortality may cause them to behave in discriminatory ways toward a
group of people they deem inferior (Greenberg et al., 1986; Kessler et al., 2012). Physicians may
regulate their fears by discriminating against their patients with dementia in the forms of ageism
and poor-quality medical care (McKenzie & Brown, 2017; O’Conner & McFadden, 2012).
Physicians’ fear of malpractice lawsuits from family caregiver DPOAs may cause them to
behave in a discriminatory way toward these patients. Consistent with this reasoning, survey
research has demonstrated that physicians tend to overtreat patients because of their fears of
29

malpractice claims (Tantibanchachai, 2017). The frequency of lawsuits from families who care
for an older adult with dementia may cause physicians to eliminate this group of people from
their physician practice entirely (Tantibanchachai, 2017).
Family caregivers of loved ones with dementia experience challenges and stressors that
can cause them to experience denial, defiance, emotional pain, and helplessness (Chen, 2016).
Terror management may explain a lack of advocacy for patients from their family caregiver
DPOAs because of family caregivers’ fears about their own risk of dementia (Kim et al., 2016).
Therapy can help family caregivers regulate and manage their terror about their loved ones’
dementia condition (Chen, 2016).
Self-Efficacy Theory
Physicians’ ageism and poor-quality medical care can arise from a lack of training in
geriatric medicine (Coleman et al., 2015). According to self-efficacy theory, individuals’ beliefs
in their abilities impact their behaviors (Bandura, 1994). Kane (2002), who argued that
physicians who lack a sense of self-efficacy in geriatric medicine provide less quality medical
care for older adult patients with dementia. Physicians’ lack of self-efficacy may cause them to
show more ageism and deliver poor-quality medical care to patients with dementia (Kane, 2002).
A 160-four interprofessional development program in geriatrics education lead to higher levels
of self-efficacy in the attendees (Coogle et al., 2016).
Family caregivers of patients with dementia suffer from a lack of self-efficacy (Merrilees
et al., 2020). Self-efficacy from family caregivers means they have knowledge and preparedness
in managing the health care and needs of patients with dementia (Merrilees et al., 2020). Family
caregivers who lack self-efficacy often suffer physical and mental health problems and
experienced burden and coping difficulties (Park et al., 2019; Tay et al., 2016).
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Theory of Stereotype Threat
Family caregivers of a loved one with dementia often suffer from anxiety, feelings of
being stigmatized, and heavy burdens (Su & Chang, 2020). According to the theory of stereotype
threat, individuals’ fear of being stereotyped may cause them to behave in self-defeating ways
(Steele & Aronson, 1995). Family caregiver DPOAs may be afraid of physicians stereotyping
patients with dementia, resulting in a lack of advocacy for their loved ones with dementia
(Cuddy & Fiske, 2002). Family caregiver DPOAs may also fail to advocate for their loved ones
with dementia because of the fear being stereotyped by the physician as overbearing, guilt-
ridden, or in denial (Lopez et al., 2020; Nguyen & Li, 2020). Table 3 presents the assumed
influences of terror management, self-efficacy, and stereotype threat. These influences may
explain physicians’ poor-quality medical care and family caregiver DPOAs’ lack of advocacy for
patients with dementia.
Bronfenbrenner Model
Bronfenbrenner’s (2005) social-ecological model presents multisystem levels of
influence from society on a target individual. These systems include the microsystem (e.g.,
family, teachers, and physicians), the mesosystem (e.g., the interaction between family and
physicians), the exosystem (e.g., school and training programs), and the macrosystem (e.g., laws
and policies) (Bronfenbrenner, 2005). The problem of ageism and poor quality medical care
from physicians and a lack of advocacy from family caregiver DPOAs may be a multisystem
level problem. In this study, the target individual is the stakeholder group of focus (i.e., the
patient with dementia), the family caregiver DPOAs and the physicians are part of the
microsystem, the interaction between the family caregiver DPOAs and the physicians is part of
31

the mesosystem, medical programs for physicians and training programs for family caregiver
DPOAs are part of the exosystem, and the Tort Reform law is a part of the macrosystem.
Microsy stem
An element of the microsystem from the theory of self-efficacy is family caregivers’ lack
of efficacy in their advocacy for the medical care of their loved ones with dementia (Cuddy &
Fiske, 2002). A second element of the microsystem, from terror management theory, is that
family caregiver DPOAs may be in denial about the existence and/or severity of their loved
one’s dementia (Su & Chang, 2020). This is because family caregiver DPOAs’ own fears of
dementia being a genetic predisposition in their family may cause them to be in denial about
their loved ones symptoms of dementia, which may, in turn, lead to a lack of caregiver advocacy.
Me sosyste m
An element of the mesosystem, from the theory of self-efficacy, is the lack of
collaboration between family caregiver DPOAs and the physicians in the medical care of patients
with dementia. There are barriers to collaborations between family caregivers and physicians
(Fortinsky et al., 2009), such as the lack of time physicians have to answer family caregivers
questions about the patients with dementia and lack of sensitivity with the family caregivers
(Boise et al., 1999). There is a power differential, whereby authoritarian physicians may cause
family caregivers to fear being stigmatized as difficult, which prohibits shared decision making
about optimal medical care for patient with dementias (Frosh et al., 2012). These barriers cause
frustration in the family caregivers and in the interactions between family caregivers and
physicians (Boise et al., 1999).
E xosy stem
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An element of the exosystem, from terror management theory, is the lack of geriatric
training physicians receive in medical school (Kane, 2002). The lack of training means that
physicians are not educated on how to regulate their own fears of their mortality and dementia
risk, which can contribute to ageism, and disinterest in treating patients with dementia (Higashi
et al., 2012; Kane, 2002). A second element of the exosystem, from self-efficacy theory, also
relates to a lack of geriatric medical training for physicians. There is a lack of geriatricians in the
United States who can effectively and compassionately treat age-related diseases and conditions
while also helping them to determine what is best for their lives for their overall well-being and
quality of life (Span, 2020).
At the exosystem level, the efficacy of current and future geriatrician training programs
could be systematically assessed using the Kirkpatrick Evaluation model. This model is known
for examining and evaluating the effectiveness of training programs (Kirkpatrick, 2006).
Research suggests the effectiveness of the Kirkpatrick model for measuring the efficacy of
medical trainees’ satisfaction, attitude, knowledge, and information-seeking skills (Tahmasebi et
al., 2020). The Kirkpatrick has several levels of measurement, which include the following.
Level 1 (Reaction) assesses how participants respond to the training, such as their degree of
satisfaction with the training program (Kirkpatrick, 2006). Level 2 (Learning) measures if the
participants truly understand the training. Level 3 (Behavior) evaluates whether participants are
actually applying in practice what they learned in the training program. Level 4 (Results)
assesses whether the educational material had a positive impact. Because there will be an ever-
increasing need for geriatricians in medical care (Span, 2020), the Kirkpatrick Model,
researchers can be used to test the efficacy of newly installed geriatrician training programs.
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A final element of the exosystem, from the theory of self-efficacy, is the lack of self-
efficacy from family caregiver DPOAs in their advocacy skills. Family caregivers of patients
with dementia suffer from a lack of self-efficacy (Merrilees et al., 2020). Family caregivers often
lack knowledge and preparedness in managing the health care and needs of patients with
dementia (Merrilees et al., 2020), and they often suffer physical and mental health problems and
experienced burden and coping difficulties (Park et al., 2019; Tay et al., 2016). Advocacy
training for family caregiver DPOAs could improve their skills in advocating for their loved ones
with dementia (Hepburn et al., 2003).
Mac rosyste m
An elemement of the macrosystem, from terror management theory, is physicians use of
defensive medicine because of the fear of malpractice lawsuits (Carrier et al., 2013; Jurgeleit,
1997; Sirovich et al., 2011). For example, 42% of physicians believed their patients were being
overtreated, with the fear of lawsuits cited most often as the reason (Sirovich et al., 2011). The
results of a physician questionnaire in Health Affairs (Carrier et al., 2013) verified that
malpractice concerns affect how many medications and treatments physicians provide to
patients. In particular, physicians are more likely to refer older adults to the emergency room to
protect themselves from litigation (Carrier et al., 2013). To reduce the economic cost of
excessive care from physicians treating patients based on their fear of lawsuits, a macrosystem-
level intervention such as tort reform is needed. Torts are defined as legal wrongs that infringe
on people’s liberties (Ottenwess et al., 2011). Tort reform is legislation passed in some states that
limits the number of frivolous lawsuits that can be filed against medical practitioners (American
Academy of Actuaries, 2009). One study showed evidence that medical tort reform is linked to a
decrease in health care costs in states where tort reforms had passed. Findings showed that the
34

passing of two medical tort reforms is connected with a significant decline in the total cost of
health insurance premiums (Batkins & Varas, 2016). There appears to be a relationship between
medical tort reform and a decline in employer contributions to health insurance premiums
(Batkins & Varas, 2016). Tort reform could contribute to a significant reduction in medical
malpractice insurance costs.
An example of this reform is shown in the state of Texas, where malpractice lawsuits
have financial limits on damages. As a result, malpractice insurance is the most affordable in the
country, and many physicians move to Texas to practice medicine because of this supportive
physician environment. In 2003, Texas House Bill 2292 (Carter, 2006) repealed liability
insurance as a requirement for practice, while Texas House Bill 4 reformed medical malpractice
and capped the damages for physicians treating older adults. Since these bills were put in place,
geriatric physician lawsuits and other nursing home claims have declined in Texas (Carter,
2006). Alternatively, the state of California has an unlimited cap on damages. California has the
most malpractice lawsuits targeting physicians and the senior care industry. Over the past 10
years, the number of filed malpractice lawsuits has significantly increased. In 2019 alone,
facilities cited a 60% increase in lawsuits (Fetterolf et al., 2019). Four years before, California
passed AB 1523, which forced all small (six beds or less) or larger assisted living facilities to
carry $1–3 million aggregate liability insurance. This law increased lawsuits of various types,
including “attorney-led” lawsuits, and affected malpractice lawsuits as well (Fetterolf et al.,
2019). As recently as June 24, 2020, California Governor Newsom announced that he would not
shield senior care facilities from lawsuits during the pandemic (Condon et al., 2020). Taken
together, the assumed influences from the theory of stereotype threat, terror management theory,
35

and self-efficacy theory may occur within varying levels of society from Bronfenbrenner’s
social-ecological model.
This conceptual model includes the assumed influences from terror management theory,
self-efficacy theory, and the theory of stereotype threat, integrated with Bronfenbrenner’s model.
This guiding framework explains the underpinnings of physicians’ ageism and family caregiver
DPOAs’ lack of advocacy for patients with dementia. Figure 1 presents the interactive
conceptual framework for this study.

36

Chapter Three: Methodology
This study examines ageism and lack of quality medical care from physicians and lack of
advocacy from family caregiver DPOAs for patients with dementia. This study tests the research
questions using an analysis of qualitative interviews with family caregiver DPOAs of patients
with dementia. Chapter Three describes the methodological approach that was used for this
project, including the study design and the organizational setting. Chapter Three then presents
the researcher’s role in the study, as well as the study’s data sources, participants,
instrumentation, data collection sources, and data analysis. Next, Chapter Three explains
precautions to be taken to ensure ethical conduct of the study. Lastly, Chapter Three addresses
the limitations and delimitations of the study.
The Researcher’s Positionality
The researcher is aware of her positionality because of her career in gerontology
(Burkholder et al., 2020). The researcher is known in the industry and at the data collection site.
The researcher has a vested interest in the topic of this study. During her career as a gerontologist
working in health care for older adults, she has witnessed instances of ageism and poor quality
medical care from physicians in the treatment of patients with dementia. To mitigate the impact
of the researcher’s positionality on the study, the task of interviewing the participants was
delegated to a research assistant. The research assistant is not affiliated with the recruitment
settings in this study. The researcher trained the research assistant to conduct the interview
protocol in a recommended style by Burkholder et al. (2020). In this style, interviewers stay calm
and proceed slowly through the interviews, have semi-structured interview questions with
question probes, audio record and transcribe the interviews, and reflect on how their worldviews
and assumptions could affect the study (Burkholder et al., 2020). The research assistant practiced
37

administering the interview several times until she was comfortable asking the interview
questions in a calm, professional, and friendly manner.
Research Questions
This study was guided by three research questions:
1. What quality of medical care do physicians provide to older adult patients with dementia,
as perceived by family caregiver DPOAs?
2. What macrosystem, exosystem, mesosystem, and microsystem influences from
stereotype threat, terror management, and self-efficacy are related to poor quality medical
care from physicians and a lack of family caregiver DPOA advocacy, as perceived by
family caregiver DPOAs?
3. How can caregivers improve the effectiveness of their advocacy for older adult patients
with dementia and improve primary care physicians’ accountability for the diagnosis and
treatment of these patients?
Overview of the Study Design
The three above-mentioned research questions were examined using a semi-structured
qualitative interview protocol (Table 4). According to Glesne (2011), structured interviews are
predetermined questions established before the interview protocol and are unlikely to change
during interviews with the participants. Semi-structured interviews were used in this study to
maintain consistency in the questions asked to every participant in the study, while allowing for
the flexibility to probe the participants’ answers for additional information when necessary
(Patton, 2002). Participants were recruited by the staff manager at the organizational facility and
a research assistant administered the interview protocol online with Zoom (Barbu, 2013).
38

Participants were instructed to disable the video option on Zoom prior to the interview to protect
their anonymity.
Organizational Settings
One organizational setting in Southern California was used as the recruitment setting for
this study, a nonprofit assisted living facility specializing in memory care. This setting is
appropriate for this study because they provide care for older adult patients living with dementia.
This center can be used to recruit family caregivers who hold the power of attorney for patients
with dementia.
The assisted living facility is a 501(c)(3) nonprofit organization serving patients and
families with dementia or Alzheimer’s disease. Founded in 1996, it serves older adults with
dementia and Alzheimer’s disease in 13 six-bed capacity locations around Southern California.
On average, approximately 70-72 residents live at this facility. In California, assisted living
facilities of a six-bed capacity or higher that are licensed to specialize in memory care are
required to meet specific standards, including achieving a higher staff/resident ratio providing
awake night care, and offering unique programming activities that serve older adults with
memory loss. California does not financially cover memory care costs unless the older adult is
living in a skilled nursing facility. This organization offers scholarships and discounts to low-
income individuals.
Target Population
The target population was family caregiver and health care DPOAs for older adults with
dementia receiving care from the nonprofit organizational facility. All family caregiver DPOA
participants read an informational consent sheet (Appendix A) prior participating in the study.
Family caregiver DPOAs were selected as the target population because they were able to
39

answer questions about their views on the quality of medical care that their family members or
loved ones receive from primary care physicians.
This study’s data sources are the family caregivers’ responses to 32 qualitative interview
questions (Appendix B). The open-ended questions in the interview protocol provided
information-rich data about the themes in this study (Patton, 2002). When necessary, the research
assistant probed the family caregiver DPOAs for additional information to optimize the chance
of getting the most in-depth information as possible (Patton, 2002). After data collection, the
researcher of this study transcribed and thematically coded the data. She entered the codes in a
codebook in Excel.
Participants
The family caregiver DPOA participants were recruited from the organizational facility
using purposeful sampling. Purposeful sampling is the preferred recruitment strategy in
qualitative research (Merriam & Tisdell, 2016). Purposeful sampling is the recruitment of a
sample that can provide information-rich data to optimize what can be learned about the study
themes (Merriam & Tisdell, 2016; Patton, 2002). The first step in purposeful sampling is to
identify specific inclusion criteria of eligibility for participation (Merriam & Tisdell, 2016). The
inclusion criteria for this study were that the participants had to be (a) the family caregiver
DPOA of loved one (either alive or deceased) with mild to severe cognitive impairment or
dementia; (b) at least 18 years of age; and (d) able to participate in the online Zoom interview.
The researcher of this study contacted the staffing manager at the organizational facility
about the study. The staffing manager sent the researcher the email addresses of the family
caregiver DPOAs who were interested in participating. A total of 13 family caregiver DPOAs
emailed the researcher about their interest in taking part in the study. The research assistant
40

emailed the 12 family caregiver DPOAs to set up a brief phone screening. During these phone
calls, the family caregiver DPOAs were screened for their eligibility to participate according to
the above mentioned inclusion criteria. Twelve of the interested family caregiver DPOAs were
eligible for participation. One family caregiver was excluded because the loved one for whom
she was the DPOA did not have dementia.
The final sample size for this study was 12 family caregiver DPOAs. According to Patton
(2002), there is no exact number of ideal participants for a qualitative research project, even
though many qualitative studies include sample sizes ranging from 3 to 10 participants (Creswell
& Creswell, 2018). The decision final sample size of 12 participants was large enough sample to
examine themes across varying cases. This sample size also ensured an equal representation of
DPOA caregivers for patients with dementia from the organizational facility. Merriam and
Tisdell (2016) discussed reaching a saturation point in terms of consistency between participants
of varying backgrounds and characteristics (Merriam & Tisdell, 2016). The 12 family caregiver
DPOA participants in this study varied in gender, age, educational level, occupation, and
relationship to the patient with dementia.
Instrumentation
The data collection tool was a 32-question semi-structured interview protocol with open-
ended questions to assess this study’s research questions (Appendix B). A sample interview
question from Research Question 1 was, “Tell me what type of medication the primary care
physician has prescribed to your loved one, if any.” A sample interview question from Research
Question 2 was, “Tell me about what interactions, if any, you have had with your loved one’s
primary care physician. Tell me about anything else that you think is important about your
interactions with your loved one’s primary care physician.” A sample interview question from
41

Research question # 3 was, “Tell me about what support/counseling services that you attend, if
any.” The interview was semi-structured with probes to capture additional information when
necessary. An example of an interview question with a semi-structured probe was, “What do you
especially like about how the doctor acts toward your loved one, if anything? (Probe: Tell me
more about that/ can you give me an example?)”
The interview protocol also included questions about the family caregiver DPOAs’ age,
gender, highest level of education, occupation, relation to the older adult with dementia, and role
as a caregiver. The family caregiver DPOA participants were asked about their loved one’ age,
gender, health, assistance needs, and dementia diagnosis. Another question asked the family
caregiver DPOAs to report on their thoughts of the state of health care for older adults during
COVID-19. The demographic questions and the question about COVID-19 gleaned contextual
information. According to Glesne (2011), interview protocols should include a mix of interview
questions from the study’s research questions and interview questions about the broader context.
In this study, the broader context was the demographic characteristics of the family caregiver
DPOAs and their loved ones with dementia and the COVID-19 pandemic.
Data Collection Procedures
The interviews were conducted online with Zoom to protect the health and safety of the
participants and the research assistant. The research assistant scheduled each interview session
with the participating family caregiver in advance. The research assistant emailed each family
caregiver who indicated an interest in participating to set up a specific day and time to conduct
the interview, then she sent each family caregiver an informational consent sheet and Zoom login
information. The research assistant reminded the participants to disable the video option on
Zoom for their anonymity.
42

At the start of the Zoom interview, the research assistant greeted each participant with the
following script,
Thank you for taking the time to meet with me. I am the research assistant for the
Principal Investigator, Jacqueline Lehn Dupont, at the University of Southern California
(USC). The Principal Investigator is interested in learning about caregivers and their
family members or loved ones living with dementia. It is important to answer as openly
and honestly as you can. As indicated in the consent form you just read, this interview is
anonymous. Only the Principal Investigator, the faculty supervisor, and I, the research
assistant, will have access to your data. No identifying information about you or the
person you provide care for will be shared in any reports. This interview will take
approximately 45 to 60 minutes to complete. Your participation is entirely voluntary. I
hope to audio record this session; your audio recorded answers will only serve to ensure
accurate and complete data. May I have your permission to audio record this session?
After the introduction, the research assistant asked the participants for permission to audio record
the interviews, and all participants gave their permission. Then the research assistant began the
interview. During the interview session, participants were allowed to pause and take breaks when
needed. For example, one participant had to briefly leave the room for a personal reason. When
the interview questions were finished, participants had the chance to add any other thoughts that
were not covered by the interview questions. The research assistant closed the interview with the
debriefing script:
Thank you for your time, effort, and energy with this interview. This study was about
ageism and the quality of medical care for patients living with dementia. The information
you have shared today helps to clarify the experiences of family caregivers and their
43

family members/loved ones with dementia. I greatly appreciate your time and openness.
If there are any points you wish to discuss or clarify, email Jacqueline Lehn Dupont, the
Principal Investigator, at Jlehn@usc.edu.
This statement concluded the interview. None of the participants followed up with questions for
the researcher about the study.
Data Analysis
Data analysis is the process of systematically interpreting data in several strategies
(Merriam & Tisdell, 2016). The research assistant turned over the MP3 audio files of the
interview to the researcher of this study. The researcher carefully reviewed and transcribed each
audio recording. After transcribing the data, the researcher deleted the audio recordings. Member
checking is when researchers have participants review the transcriptions and interpretations of
their answers for accuracy (Merriam & Tisdell, 2016). Member checking was used for two
participants who did not use the geriatrician affiliated with the organizational facility for their
loved one’s medical care. The research assistant emailed those two participants after the
interviews to check on what type of insurance plan they have, which might restrict their choices
of which physician can treat their loved one. Both participants responded to the research
assistant’s email. One participant answered that his mother’s care is under a Preferred Provider
Organization (PPO) plan and the other stated that his mother is covered under an Health
Maintainence Organization (HMO) plan.
Data coding was carried out in several stages. Open coding was carried out in the first
phase. The researcher continuously asked a series of guiding questions. The first guiding
question was, “What is this a study of?” (Glaser, 2016, p. 109). This first question effectively
reduced the number of interpretations of the core problem and emerging themes related to the
44

study questions (Glaser, 2016). The second question was, “What category does the problem
incident indicate or what property of the core category does the incident indicate?” (Glaser,
2016, p. 109). This second question helped the researcher refine the data until it fit into an
emerging conceptual framework. This process occurred without forcing the data into the a priori
themes. The third guiding question was, “Asking of the emerging analysis what theoretical codes
may apply to integrate the emerging theory?” (Glaser, 2016; p. 109). This third question
facilitated the ability of the researcher to integrate the concepts that have emerged into a
conceptual framework. Subsequent to the open coding phase, the researcher reviewed the
transcripts again to identify empirical and a priori codes that pertain to the literature and
conceptual framework of this study. The a priori themes that were identified prior to data
collection were as follows: the quality of diagnostic screening and diagnosis; the quality of
medical care; terror management from family caregiver DPOAs; self-efficacy from family
caregiver DPOAs; self-efficacy from physicians; and recommendations for family caregiver
DPOA advocacy. Next, the researcher developed a transcript codebook in Excel using pattern
codes and themes that emerged from a priori codes that were identified prior to data collection.
The codebook provided comprehensive, organization, and accurate documentation of the data by
showing when open-coded themes emerged from the data. These open-coded themes were as
follows: the importance of receiving medical care for dementia from a geriatrician; accessibility
gaps; and ageism during COVID-19.
Credibility and Trustworthiness
Qualitative research contains inherent bias that can threaten its credibility (Merriam &
Tisdell, 2016). Stringent efforts were made to ensure the credibility and trustworthiness of this
study. These efforts served as the foundation for collecting, interpreting, and reporting the data
45

(Merriam & Tisdell, 2016). The details of how the researcher ensured the creditability and
trustworthiness of the data are described below.
The credibility of the data was strengthened by collecting pilot interview data (Merriam
& Tisdell, 2016). The researcher collected pilot interview data from two family caregiver
DPOAs prior to the full data collection protocol. The pilot interviews helped the researcher get
feedback about the clarity and relevance of the interview questions. In the pilot test interview,
family caregivers were asked to report whether the primary care physicians ever used COVID-19
as a reason to limit medical care. One of the pilot test participants pointed out that this question
lead him to affirm the idea that COVID-19 was responsible for doctors limiting medical care to
older adult patients with dementia. The question was changed to, “What medical procedures or
testing is your loved one’s doctor limiting, if any?” The revised question allowed respondents to
comment on problems with medical care restrictions because of COVID-19 without prompting
their answer.
The research was aware of possibility that data collection could have been influenced by
her positionality. To offset this problem, a research assistant interviewed the participants. The
researcher trained the research assistant for two weeks to follow the interviewing guidelines by
Burkholder et al. (2020). The research assistant took a transparent approach to the interview
procedure by audio recording the interviews (Burkholder et al., 2020). This approach mitigated
the biases of taking field notes, such as researchers becoming overwhelmed by the quantity of
information and then inadvertently writing down information that aligns with their study
expectations and ignoring information that negates these expectations (Burkholder et al., 2020).
The research assistant conducted the interviews in a calm and even-toned manner and proceeded
46

slowly through the questions (Burkholder et al., 2020). The research assistant encouraged the
participants to answer as openly and candidly as possible (Burkholder et al., 2020).
Triangulation was used to strengthen the credibility of this study (Merriam & Tisdell,
2016; Patton, 1987). Merriam and Tisdell (2016) state that triangulation improves the data’s
credibility by reducing the risk that data inferences come entirely from a single source.
Triangulation was ensured in several ways. The researcher reviewed her interview protocol with
her chair and with students in her cohort (Merriam & Tisdell, 2016). The research assistant
collected the interview data, but the researcher transcribed and coded the data. The sample of
family caregiver DPOAs varied in age, gender, educational level, and relation to the patient
(Patton, 1987). Member-checking was carried out to in two cases where answers were unclear in
response to questions regarding whether a geriatrician was not used (Merriam & Tisdell, 2016).
The written study was subjected to a peer-review process, whereby feedback on the paper was
given by the researchers’ dissertation committee (Merriam & Tisdell, 2016).
Ethics
Researchers have a responsibility to ensure that no physical or psychological harm is
done to a study’s participants (Glesne, 2011). This study’s ethics took priority above and beyond
this study goal of obtaining new knowledge, so the researcher adhered to stringent ethical
standards throughout the research process (Glesne, 2011). Ethical standards were upheld with an
informed consent information sheet, participant anonymity, and debriefing. The researcher
recognized that the interview questions could trigger the family caregiver DPOA participants
(Merriam & Tisdell, 2016).
The research assistant emailed each participant a USC Informed Consent for Nonmedical
Research informational sheet (Appendix A) before they participated in this study (Nijhawan et
47

al., 2013). The informational sheet informed participants that their participation in this study was
entirely voluntary; they could stop at any time; they could skip any questions that they did not
wish to answer; and their answers were anonymous. The participating family caregiver DPOAs’
anonymity was protected by replacing all identifying information, such as names, phone
numbers, and email addresses, with identification numbers and by audio recording the
interviews. All participants were instructed by the research assistant to disable the video option
on Zoom before the interview. In accordance with the privacy guidelines of the Health Insurance
Portability and Accountability Act of 1996 (HIPAA) guidelines, the researcher did not share any
data from the family caregiver DPOA (U.S. Department of Health and Human Services National
Institutes of Health, 2007). The researcher can provide verification of the DPOA.
The interviews were audio recorded with the participants’ permission. After transcribing
the data, the researcher destroyed all MP3 audio files. At the end of the interviews, the research
assistant debriefed the family caregiver DPOA participants about the study’s purpose and told
the participants that they could email the researcher with questions about this study. These
efforts ensured the safety of the participants and the overall ethics of this study (Creswell &
Creswell, 2018).
Limitations and Delimitations
The limitations of the study were considered throughout the research process. One
limitation is that the study was dependent on the accuracy and candidness of the participants’
interview answers. To increase the chance of gaining truthful answers from participants, the
research assistant reminded them to answer candidly and openly and reassure them that their
answers were anonymous before starting the interviews. The positionality of the researcher could
have impacted how data collection and interpretation (Creswell & Creswell, 2018). A research
48

assistant conducted the interviews to reduce the impact of the researcher’s positionality on this
study (Merriam & Tisdell, 2016). This study took place during COVID-19 when ageism against
older adults in health care was apparent (Wenger & Shapiro, 2020). This may call the historical
ecological validity of this study into question.
The delimitations of the study were also considered during this study. One delimitation
was the research setting in Southern California (i.e., the assisted living facility where the
participants were selected) is not a reflection of entire United States. It is a suburban private pay-
facility, which may reflect the experiences of a culture of privilege. This kind of assisted living
facility is not affordable to lower income families in Southern California and may not reflect the
experiences of lower income family caregiver DPOAs and patients in the United States or
worldwide. Another delimitation was that data was only collected from the family caregiver
DPOAs. Data did not include the perspectives of the patients with dementia or the patients’
physicians. There is a threat to the transferability of the data because the findings may not
generalize to other study settings. For example, the study’s findings may not be comparable to an
observational study conducted during doctor visits with older adult patients with dementia,
where subtle behavioral signs of ageism from physicians may be more readily detected. Another
delimitation is that 12 participants were interviewed. There is no fixed number of ideal
participants for a qualitative study (Patton, 2002), but 12 participants provided a large quantity of
qualitative data that was challenging to manage, organize, and consolidate. Creswell and
Creswell (2018) assert that a sample size ranging from 3 to 10 participants is standard for
qualitative studies. The decision to interview 12 family caregiver DPOAs was to optimize the
chances of gathering data from a sample with varying backgrounds and demographic
characteristics and across the assisted living facility. The facility has a census of approximately
49

70-72 older adults residents, and 12 family members would constitute a sample of almost 20%
percent of the population. The family member may have cared for more than one family member
at the facility, proving more data on each question. This optimization allowed the researcher to
identify common themes in the data despite demographic differences between the participants
(Patton, 2002). Another delimitation is the number of questions in the interview protocol. A large
number of interview questions can result in participant fatigue (Burkholder et al., 2020). The
research assistant mitigated this problem by going slowly through the questions and providing
participant breaks during the interview when needed (Burkholder et al., 2020).

50

Chapter Four: Results and Findings
Chapter Four presents the results and findings from the qualitative interview data
provided by the 12 family caregiver DPOA participants. Chapter Four begins my summarizing
the characteristics of the patients with dementia and the family caregiver DPOAs. Then Chapter
Four shows the results as they pertain to the three research questions in this study.
The Stakeholder Group of Focus
The stakeholder group of focus for this study was the older adult patients with dementia.
This study sought to develop a sample of family caregiver DPOAs who are responsible for the
primary stakeholders for this study and who can speak on behalf of the quality of medical care
for the patients with dementia. This qualitative study explored the research questions based on
the interview responses provided by the family caregiver DPOAs. Table 5 shows the summary
characteristics for the stakeholder group of focus (i.e., the older adult patients with dementia),
including each stakeholder’s type of dementia diagnosis, relationship to the participant, gender,
living or deceased status, and age.
Table 8 shows the frequencies of the number of times each theme was endorsed by each
participant. All 12 participants provided answers that supported the following a priori themes:
the quality of diagnostic screening and diagnosis, the quality of medical care, and self-efficacy
from family caregiver DPOAs. The details the participants’ answers pertaining to each theme are
presented next.
The Family Caregiver DPOAs
A total of 12 family caregiver DPOAs were interested in participating in the study and
were eligible to participate based in the inclusion criteria of the study. One of these caregivers
did not meet the inclusion criteria, however, because her loved one did not have dementia. The
51

final sample for this study included 12 family caregiver DPOAs of a loved one with dementia.
This was a successful recruitment as 12 participants was the original target sample size. Twelve
participants is approximately 20% of the total census of the facility. Each participant in the
sample was asked 32 semi-structure, open-ended interview questions about the quality of
medical care their loved ones with dementia receive from their primary care doctors and about
their own advocacy for their loved ones. These participants were recruited from an assisted
living memory care facility in Southern California, where their loved ones reside or where they
resided prior to their passing. The interviews were carried out over a two-week period of time
using online audio Zoom calls. All 12 participants gave permission to have their interviews
audio-recorded. The interviews took between 40 and 70 minutes to complete.
Table 6 shows the summary characteristics for the participants (i.e., the family caregiver
DPOAs). These summary characteristics include the participants’ gender, age, highest level of
education, and occupation.
Research Questions
The purpose of this study was to understand ageism from physicians and the lack of
advocacy from family caregiver DPOAs for older adult patients with dementia. Chapter Four
reviews the demographic characteristics of the stakeholder group of focus and the family
caregiver DPOA participants. Next, Chapter Four outlines the findings and results from the three
research questions:
1. What quality of medical care do physicians provide to older adult patients with dementia,
as perceived by family caregiver DPOAs?
2. What macrosystem, exosystem, mesosystem, and microsystem influences from
stereotype threat, terror management, and self-efficacy are related to poor quality medical
52

care from physicians and a lack of family caregiver DPOA advocacy, as perceived by
family caregiver DPOAs?
3. How can caregivers improve the effectiveness of their advocacy for older adult patients
with dementia and enhance primary care physicians’ accountability for the diagnosis and
treatment of these patients?
Findings From Research Question 1
The quality of medical care for dementia is the quality (i.e., the timeliness, thoroughness,
and accuracy) of the diagnostic screening protocol and the accuracy of the official diagnosis
(Panegyres et al., 2016). This section presents the results from the interviews on the quality of
diagnostic screening for patients with dementia, as reported by their family caregivers, This
section provides a more nuanced understanding of the diagnostic procedures to which patients
with dementia are often subjected. Twelve out of 12 of the participants gave information
pertaining to the poor quality of diagnostic screening, lack of early intervention, accuracy of the
diagnosis, and/or ageism in the way the diagnosis of dementia was delivered. The following
three sections show a selection of responses from family caregiver DPOAs that were typical of
the answers provided by the entire sample.
Thoroughness of the Diagnostic Screenings
Participant 1 reported on the resistance from his mother’s primary care physician to run
diagnostic screening for her signs of dementia. According to Participant 1,
I feel like I diagnosed my mom rather than the doctor. We went in and it was a normal
doctor's visit- blood pressure, weight measurement, labs, borderline diabetic - whatever a
normal doctor would do. That was it - take these pills and you're good. It wasn't until I
brought up ideas like the Mini Mental Exam that the doctor acknowledged that. He said,
53

‘Oh yeah, I've done that before, we could do that.’ He even said this, “But there's nothing
I can do about it though. She’s 85 and in relatively good health for her age. You should
see some of my patients that are 85.”
This comment demonstrates the presence of ageism in the physician’s lack of initiation with
recommending diagnostic screening for dementia and in his statement that there is nothing that
can be done and that most patients of 85 years old are in much worse condition.
All of the participants discussed either a lack of comprehensive diagnostic screening for
dementia or a misdiagnosis.
Participant 1 stated, “The only diagnostic testing that was done was the Mini Mental and
if I hadn’t requested it, the doctor wouldn’t have carried out the test.” This quote shows a lack of
comprehensive diagnostic screening for dementia, and it illustrates that the doctor only
conducted the MMSE because of the family caregiver advocacy from Participant 1.
Participant 2 stated about the kind of diagnostic screening that her mother received from
a neurologist, “The only diagnostic testing that was performed was the Mini Mental. It was an
unfair assessment. There was also an MRI or brain scan. That was it and then he made a
diagnosis that my mom either had Vascular Dementia or Alzheimer’s. He did not rule out
alternative conditions.” This statement indicates a lack of comprehensive diagnostic screening
for dementia that only included the Mini Mental State Examination (MMSE) and a brain scan.
The family caregiver DPOAs’ mother did not even receive a specific diagnosis because the
neurologist was unable to distinguish between a diagnosis of Vascular Dementia and
Alzheimer’s Disease.
Participant 8 commented, “A diagnosis was made through some questions about current
events. No official tests were done. Blood tests and urine tests were routinely done but none were
54

specifically done due to memory loss. The official diagnosis was mild dementia.” This is another
case in the data of a lack of thorough diagnostic screening.
Accuracy of the Diagnosis
Participant 4 discussed how his sister-in-law was originally misdiagnosed by the first
neurologist who treated her, such that Participant 4 had to take her to a second neurologist for an
accurate diagnosis. In both bases, the diagnostic screening procedures from the two different
neurologists were reported to be comprehensive with standard screenings, diagnostic evaluation,
the WAIS test, and measure of depression, a blood panel, a PET scan, and a urinary test.
However, the first of the two neurologists misdiagnosed Participant 4’s sister-in-law as having
Frontotemporal Dementia. However, upon reading about Frontotemporal Dementia, Participant 4
did not demonstrate the symptoms of this condition. As a result, Participant 4 had his sister-in-
law was re-diagnosed by a second neurologist as having Posterior Cortical Atrophy. As
commented by Participant 4,
My sister-in-law was misdiagnosed by Specialist 1 with Frontotemporal Dementia even
though she had no signs or comorbidities that matched. The Specialist 1 refused to
consider that. Specialist 2 diagnosed her with Posterior Cortical Atrophy. I looked it up
and agreed.
This quote illustrates the occurrence of a misdiagnosis by the first specialist, as well as the
advocacy on behalf of Participant 4 in conducting his own research on the symptoms of the
diagnosis and taking the initiative to switch doctors to achieve an accurate diagnosis.
Participant 5 discussed how her mother was misdiagnosed as having Alzheimer’s
Disease. As stated by Participant 5,
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We thought she had AZ, but we found out from the death certificate said vascular
dementia. We never knew what it was when she was alive. There was no way I was going
to put her through all the tests/screenings that she would have had to go through to get a
specific diagnosis. I don't know if the doctors just took it from me, but she was already in
her 90's so it was - I think if she had been in her 70s or 80s but it was 90's. Having her go
through an MRI it would've been bad. I just didn't want her to go through it.
This response illustrates that the physician did not carry out a formal and thorough diagnostic
screening of Participant 5’s mother because of Participant 5’s wishes to avoid subjecting her
mother to intensive screenings and brain scans. Nevertheless, the unofficial diagnosis was that
Participant 5’s mother had Alzheimer’s Disease. It wasn’t until Participant 5 received the death
certificate of her mother that indicated her official diagnosis of Vascular Dementia.
Participant 3 commented on her mother’s diagnosis as being unclear. As stated by
Participant 3, The diagnosis was all over the place. First, they said she may have Vascular
Dementia, or maybe its Lewy Bodies, or maybe AZ. As indicated by this comment, Participant 3
never received a clear and precise diagnosis of her mother’s condition.
Participant 2 had the experience of the neurologist not being sure what the exact
diagnosis was of Participant 2’s mother. According to Participant 2, The specialist said, your
mother has Vascular Dementia, so she has Alzheimer’s Disease. The neurologist’s error in
discussing Vascular Dementia and Alzheimer’s Disease as if they are the same condition either
indicates a lack of knowledge from the neurologist that these are two different types of dementia
or that he wasn’t able to differentiate them based on the diagnostic screenings that were used.
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Ageism in How the Dementia Diagnosis Was Relayed
Participant 1 discussed the insensitive and abrupt way that his mother was diagnosed as
having Alzheimer’s Disease by her primary care physician. According to Participant 1, “He just
looked at me and said, ‘She’s got Alzheimer’s.’” In this case, the primary care physician did not
look at the participant’s mother when delivering the diagnosis nor did this physician do anything
to try and soften the news. Not looking directly at the patient and speaking over the patient like
they were not in the room, is an example of ageism.
Participant 2 described the abrupt and insensitive manner by which the neurologist that
diagnosed her mother. As reported by Participant 2,
It was basically everything you shouldn’t do when a patient has cognitive impairment. He
didn’t address my mom as a person. Didn’t ask, ‘do you know why you are here?’ He just
introduced himself, carried out the Mini Mental, did the brain scan, and walked into the
room and said, “You have Vascular Dementia” and that was it.
As demonstrated by this quote, the neurologist delivered the news in a way that was insensitive
to the news of the mother’s dementia. By not speaking to the patient sensitively and talking over
the patient, the physician portrayed ageist behaviors.
Participant 3 reported that a physician said to her mother, “‘Oh come on, you know
you’ve got dementia.’ My mom was so angry and humiliated.” In this case, the primary care
physician was emotionally abusive and disrespectful in the way that she communicated with the
mother about her dementia diagnosis. Why would the physician elude to the fact that the mother
knew she had a disease, the patient is at the physician’s office to receive a diagnosis in this
example the physician’s behavior was ageist and disrespectful.
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Participant 6 said that the physician informed his wife of her diagnosis by stating, “‘Okay
you’ve got Alzheimer’s Disease and I’m going to call the DMV to have your driver’s license
suspended because you can’t drive anymore.’ This news and the way it were delivered was a stab
in our hearts.” This quote illustrates ageism in the way the physician delivered news of the
dementia diagnosis to Participant 6’s wife.
Comprehensiveness of Medical Care
Another component of quality medical care for dementia involves how comprehensive
the actual medical care is in terms of the doctor’s prescription of appropriate pharmacological
medication and referrals to other services, including social support groups, as well as
informational and counseling services for the patient with dementia and the family caregiver
DPOA (Jennings et al., 2016). This section presents the results from the interviews on the
comprehensiveness of the medical care that loved ones received for their dementia condition, as
perceived by the family caregiver DPOAs. Twelve out of 12 of the participants gave information
pertaining to the comprehensiveness of the medical care that physicians provided to the loved
ones of family caregiver DPOAs.
Pharmacological Treatments
Eight out of the 12 participants reported that their loved one was prescribed medication
for dementia, including the Exelon Patch and/or Namenda however, many of the caregivers
reported that the facility geriatrician physician prescribed appropriate dementia or memory loss
medications, not the initial neurologist or primary care physician. There were also problems
raised by participants about physicians prescribing medication to dementia patients that is not for
memory loss and these medications had too many harmful side effects.
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Participant 8 stated, “No pharmacological medication was prescribed for her [mom’s]
memory. I assume the GP didn’t think there was an effective medication that would help her. He
continues to see her just for her general health.” This is a case, according to Participant 8, where
the physician’s stereotype that dementia in incurable and untreatable prohibited the physician
from prescribing memory care medication even though the patient had memory loss.
There were two cases of physicians prescribing medication for mental health conditions
or sleep problems rather than medications to directly handle the patients symptoms of dementia
such as depression.
Participant 6 commented that his wife was only prescribed Lexapro (an anti-depressant)
for her Alzheimer’s Disease. No mention of memory medication to hasten the decline of the
disease and even though his wife had memory loss.
Participant 4 reported that a neurologist prescribed a high dose of the anti-psychotic
Seroquel (a sleep medication and used for delusional behavior) to treat his sister-in-law for
Posterior Cortical Atrophy. According to Participant 4,
The first doctor that treated my sister-in-law prescribed her Seroquel for sleep in very
high doses and it was contraindicated with other medication she was on. He didn’t
explain what the Seroquel was for, it was just, here it is, take this.
This comment from Participant 4 shows that the neurologist did not prescribe medication to treat
her memory condition, nor did he explain what the Seroquel was for regarding her treatment
plan. Seroquel is an antipsychotic drug and has a Food and Drug Administration (FDA) black
box warning, with strong tranquilizing side effects, it is reported that it may hasten death and can
cause functional declines with older adults with dementia (FDA, 2008).
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In the above cases many of the physicians failed to address acetylcholine medications to improve
memory or delay the stages of the disease. The lack of pharmacological medication prescribed
by doctors that was identified in the participants’ responses may indicate a lack of self-efficacy
from physicians or other problems, such as physicians concerns about the costs of medication,
contraindications, or stigmas that memory care medication are ineffective.
Non-Pharmacological Treatments/Referrals
Only one participant reported that the doctor who treated the loved one made referrals or
recommendations for non-pharmacological care. According to Participant 9, “The physician
offered services, including counseling services for my mom and support groups for us [the
family], but we never took advantage of it. We didn’t feel that we needed it.” In this case, the
physician did make referrals but the family caregiver made a decision not to make use of these
services.
In all other cases, either no referrals were made by the physician, and if someone
received advice or referrals, it was from health insurance companies, a non-profit or through the
assisted living facility professionals.
Living in Southern California was identified as a benefit for its access to memory care
resources. As stated by Participant 11, “We took advantage of the Alzheimer’s Orange County a
nonprofit. We have so many resources here. Maria Shriver has a WAM program and I’ve done
those because women are more likely to get Alzheimer’s Disease than men.”
Participant 7 stated, “We took the SAVVY caregiver curriculum. It is pivotal I
recommend it to everyone whose parents are going through Alzheimer’s. The SAVY caregiver
course is exceptional.”
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Participant 2 indicated that it was her mom’s HMO Scan Health Insurance that provided
social service referrals. According to Participant 2,
Scan had wonderful social programs. I don't believe they have that anymore. She
qualified for adult daycare three days a week. I got her enrolled. She could have pet and
music therapy to keep her engaged. She could at least come home and be a little more
tired naturally and it would be outings for her.
The Scan program that Participant 2’s mother was enrolled in provided adult daycare services,
including pet and music therapy.
Participant 12 commented that it was through the assisted living facility that referrals
were made for memory care social services. As Participant 12 commented, the assisted living
facility, “Referred me to a geriatric advocate to help me realize that my great uncle needs
medical care and helped inform me on questions I need to ask and things I need to know.”
Participant 11 offered information that supported the idea of a triple stigma, which is the
problem of a patient who is denied high quality care because of being an older adult, having
dementia, and being a part of an additional marginalized category. As stated by Participant 11,
“My mom was admitted to a geriatric psych ward for mental illness. All they wanted to do was
prescribe her psych meds and nothing was recommended about social services to help her.” In
this case, Participant 11 suggests that it was her mother’s mental health diagnosis that
contributed to the way that she was medical cared for in terms of receiving only psychiatric
medication and in terms of being denied information about social services, such as care
management or counseling.
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Importance of a Geriatrician at the Assisted Living Facility
An open-coded theme that emerged from the data was the importance of having
geriatrician or physician with geriatric or hospice board certification, to treat older adult patients
with dementia. According to Geriatrics Healthcare Professionals (2021, p. 1),
A geriatrician is a physician who is specifically trained to evaluate and manage the
unique healthcare needs and treatment preferences of older people… physicians can
demonstrate their expertise in geriatrics, for example, by meeting the requirements for
certification by the American Board of Medical Specialties.
Five of the participants in this study mentioned how the medical care of their loved one
improved after the geriatrician that as affiliated with the assisted living facility where their loved
ones reside. As Participant 5 stated,
My mom’s GP was a geriatrician and a lot of his patients were aging, so he was very
knowledgeable and amazing with my mom. He kneeled down in front of her and looked
directly at her when he talked to her and asked her questions. He showed compassion
toward my mom. It was a big improvement from my mon’s previous GP.
Participant 5’s comment shows that her mother’s geriatrician was highly trained in geriatric
medicine and was skilled in communicating with her mother in a compassionate and direct
manner. Participant 10 commented,
We rely on her GP who is a gerontologist. We started to think she [Participant 10’s
mother] needed meds to help her calm down. We agreed that hospice was the way to
have her cared for. He also checks for other things like making sure we are stocked with
cranberry juice for problems, like UTI’s.
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This quote demonstrates the importance of gerontologists for medical care for dementia, as well
as for related problems, including anxiety and UTI’s. His knowledge about the palliative care for
Participant 10’s mother was a compassionate way to gently handle her end of life quality of life.
This geriatrician was able to answer other questions that the family caregivers had
regarding other aspects of the loved ones health. For example, Participant 10 discussed how the
geriatrician answered her questions about whether her mother should receive the vaccine for
COVID-19, or whether it was a risk for someone of her mother’s age (105 years old) to receive
the vaccine. The geriatrician reassured Participant 10 that it was, “better for her mother to get the
vaccine, rather than die in the hospital due to COVID-19.” This example indicates the high
quality of medical care for dementia that geriatricians can provide.
Accessibility Gap
Another theme that emerged from the qualitative data, as a result of the open-coding
method, was the concept of the quality of medical care for dementia being determined, at least in
part, by accessibility to high quality physicians. As Participant 7 stated,
When my mom received her diagnosis, she wasn’t afraid. I think she knew that we had
the means to give her high quality medical care. I think many people don’t have access to
such good care, and I’m thankful that we did.
As this comment suggests, Participant 7 perceives her ability to provide her mom with high
quality care being determined by her ability to afford this kind of medical care.
Participant 9 commented, “My mom had really good insurance. That was the key to
getting her the kind of care she gets from her doctors.” This quote illustrates that good insurance
plans can provide access to high quality medical care for dementia.
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Other participants did not have access to a geriatrician because of their insurance plan.
For example, Participant 8 was unaware of the geriatrician that works with the assisted living
facility where his mother resides because his mother’s medical was covered in an HMO plan,
which restricted physician choices. The importance of a geriatric board certified physician,
gerontologist or therapist was mentioned often as many of the family members reported that the
geriatric specialist were more knowledgeable regarding treatment of dementia and hospice
services.
Ageism During COVID-19
All of the participants discussed the problem of ageism in denying older adults of high
quality medical care during the COVID-19. pandemic. These responses extended out beyond
medical care for dementia and included a lack of early access to vaccines and other medical care
services from COVID-19.
Participant 2 commented, “There have been complications with trying to get the vaccine
for aging patients. I tried to advocate for clients of mine and told them to directly ask their doctor
for the vaccine.”
Participant 12 stated, “It is terrible about the arbitrary decisions that have been discussed
about denying medical care to older adults in the event that medical resources and medicines are
limited.” This comment is in regard to discussion in the medical community about prioritizing
younger patients in the case that medical resources are limited because of the pandemic.
Summary of Findings From Research Question 1
The results provided in-depth and nuanced information about the quality of medical care
provided to patients with dementia, as perceived by the family caregiver DPOAs. Considered
together, the data provides several nuances in terms of the quality of this care. Overall, there
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were comments with regards to a lack of thorough diagnostic screening, misdiagnoses, and ageist
manners in the ways that the diagnoses were relayed. There were variations in the
comprehensiveness of the medical care. There were comments about a lack of pharmacological
medication altogether/ a lack of explanation about why a particular medication was prescribed,
as well as a lack of referrals from physicians about non-pharmacological treatment plants/social
services. Instead recommendations for social services came about because of the family
caregivers residing in Southern California, health insurance referrals, or referrals from the
assisted living facility. Three open-ended themes emerged from the qualitative data regarding
poor quality medical care for older adult patients, including the importance of geriatricians for
treating patients with dementia, accessibility gaps, and ageism during COVID-19.
Findings From Research Question 2
The findings showed evidence of microsystem, mesosystem, exosystem, and
macrosystem levels of influences from stereotype threat, terror management, and self-efficacy.
This section summarizes the findings based on the responses from the family caregiver DPOAs.
The findings are organized by Bronfenbrenner’s multisystem levels of influence.
Microsystem Level Influences and Stereotype Threat
At the microsystem level, stereotype threat was expected to play a role, such that family
caregiver DPOAs’ fears of being stereotyped by primary care physicians would play a role in
their advocacy (or lack thereof). The results from the interviews revealed the existence of
stereotype threat but in different ways than expected. Five of the interviewees revealed that it
was their loved ones with dementia, themselves, who were afraid of being stereotyped for their
condition, as discussed below in more detail.
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As one family caregiver DPOA stated, “My mom masked the dementia as much as she
could. My mom believed that it was important to never discussed any weaknesses or afflictions.
Masking was a coping skill to hide the forgetfulness and paranoid feelings.” In this case, the
family caregiver shows that her mom strove to hide her condition of dementia. This suggests that
the mom’s fear of beings stereotyped as “weak” caused her to hide her condition as much as she
good.
A similar sentiment was revealed by another participant who described her mom as
being, “Very concerned about us finding out. She was scared of being a burden. She didn’t want
to lose her right to drive or her autonomy.” In this case the family caregiver DPOAs’ mother was
afraid of being stereotyped as a burden, with the result being that she would lose her autonomy.
Likewise, another participant discussed her mother’s fear of being a burden. As this family
caregiver DPOA stated,
My mother had been seeing her general practitioner in Laguna Hills. She had already
diagnosed my mom. My mom was a master of hiding and deceiving her family. She
didn’t want anyone to know that she was suffering. She didn’t want to be a burden. She
never took the medication that was prescribed for her dementia.
This quote reveals the family caregiver DPOAs’ mother’s fear of being stereotyped (i.e., being a
burden) actually prohibited her mother from taking her medication. In sum, the three above
mentioned interview responses suggest that the patients with dementia themselves were afraid of
being stereotyped as “weak” or as a “burden” because of their condition. At least in one case,
this stereotype threat resulted in a patient’s refusal to take her meditation despite being diagnosed
with dementia by her primary care physician. Collectively, this data indicates the importance of
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considering the patients’ own stereotype threat fears and how these fears can interfere with their
treatment plan.
Microsystem Level Influences and Terror Management
At the micro-system level, family caregiver’s own fears of their own vulnerability to
dementia was expected to result in a lack of advocacy for their loved ones with dementia.
According to this theory, individuals’ fear of being stereotyped may cause them to behave in
self-defeating ways (Steele & Aronson, 1995). Family caregiver DPOAs may be afraid of
physicians stereotyping patients with dementia (Cuddy & Fiske, 2002), leading to their lack of
advocacy for these patients. As shown below, there were two cases of family caregivers who
showed evidence of terror management related to their concerns about their own risk of
dementia. In these two cases, the participants and their mothers with dementia took the 23andMe
genetic testing (23andMe, 2021) to determine the presence of a genetic risk of dementia.
Participant 3 explained, “My mom, sister, and I got the 23andMe testing done. My mom
[the loved one with dementia] and my sister have the risk gene, but I don’t.” In this case, it was
apparent that Participant 3 was relieved to know that she didn’t carry the risk gene for dementia.
This is evidence of terror management in that the genetic testing reduced her own fears of being
at risk for this condition.
Participant 11 commented on getting the 23andMe test for her mom (the loved one with
dementia), her sister, and herself. As Participant 11 stated, “I have the APOE risk gene and my
mom does but not my sister. Now my sister is always looking for signs of dementia in me.
Whenever I forget a word, she points it out.” This statement demonstrates the influence of terror
management in terms of the family caregiver DPOAs’ concerns about their own risks of
dementia.
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Microsystem Level Influences and Self-Efficacy
At the mesosystem level, three participants mentioned frustration in the lack of
collaboration they had with physicians about the medical care of the dementia patients.
Participant 1 said, “I have a feeling that the doc wouldn’t have diagnosed or treated my
mom without my insistence. There was no collaboration there. The GP wasn’t interested in that,
even though he did what I asked.” This illustrates the lack of collaboration that Participant 1
perceived with the primary care physician regarding the medical care of Participant 1’s mother.
Participant 2 stated, “The neurologist wasn’t interested in talking with me or answering
my questions about my mom’s diagnosis. It was just, here is the diagnosis and thank you for
coming.” This shows the lack of interaction that Participant 2 perceived with her mother’s
physician. A power differential may be indicated here, whereby the authoritarian demeanor of
the neurologist lead to a breakdown in shared decision making with Participant 2.
Participant 4 commented, “The specialist wouldn’t look at me. He seemed confused
about why I was there or what my role was.” This is another example of a lack of collaboration
between a family caregiver DPOA and the physician.
At the exosystem level, primary care physicians’ lack of knowledge/expertise in geriatric
medicine and dementia care was expected to be explained by limited geriatric medical training.
Seven participants discussed the lack of self-efficacy from physicians regarding their abilities to
effectively treat older adult patients. As stated by Participant 1,
The doctor didn’t know what to do. I basically had to tell him what to do and what to
prescribe. I think doctors are just not broad enough in their training. It seems like most
family doctors should be experts in aging because like who goes to the doctor? Not 27
year-olds unless they have the flu or something, It is the older adults who go in. The
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doctors need to get trained in geriatric medicine – this needs to start in our medical
schools.
This quote exemplifies the lack of geriatric training/knowledge of the primary care physician to
effectively treat a patient with dementia.
At the exosystem level, family caregiver DPOAs’ lack of self-efficacy were expected to
be explained by lack of advocacy training. All 12 of the participants mentioned the importance of
training or of having an informed person to provide educational support.
Participant 2 revealed how a lack of advocacy training can be problematic. As stated by
Participant 2,
When the neurologist diagnosed by mom, I was in total shock, like paralyzed. I didn’t
know what to ask or what to say. Looking back, I wish I had prepared myself with
questions and knowledge so that I could have asked about a care management plan and
about medications and contraindications.
This statement from Participant 2 indicates that a lack of family caregiver advocacy training can
lead to a reduced ability to ask knowledgeable questions about the medical care of a loved one
with dementia. Participant 12 stated,
I was referred to a geriatric advocate to help me realize he [Participant 12’s great uncle]
needs medical care and made me realize he needed assisted living. I haven't been in touch
with advocate since, but she was extremely helpful - I couldn't have done it without her, I
really needed it.
This quote demonstrates that an advocate can teach family caregiver DPOAs about the needs of
the loved ones with dementia regarding their medical care and living situation.
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Summary of Findings From Research Question 2
The results from the qualitative interviews provide in-depth and nuanced information
about multisystem influences from stereotype threat, terror management, and self-efficacy that
are related to a poor quality medical care and a lack of family caregiver DPOA advocacy, as
perceived by family caregiver DPOAs. Contrary to what was predicted that were not evidence
from the qualitative data at the microsystem level regarding the presence of stereotype threat
from family caregiver DPOAs about their fears of being stereotyped by the primary care
physicians. Instead, the qualitative data suggested that it was the loved ones with dementia
themselves with fears of being stereotyped about their dementia by their physicians and their
family. Consistent with expectations, there was evidence at the microsystem level of terror
management from two of the family caregiver DPOAs as represented by taking the 23andMe
genetic testing to assess their own risk of dementia. At the mesosystem level, there was evidence
of a lack of collaboration or interaction between the family caregiver DPOAs and the physicians
in the medical care of patients with dementia. At the exosystem level, there was evidence of self-
efficacy from the primary care physicians because of their lack of geriatric training. There was
evidence at the exosystem level regarding family caregiver DPOAs’ self-efficacy because of a
lack of advocacy training. Taken together, the data regarding question 2 suggests that there are
macrosystem, exosystem, mesosystem, and microsystem influences from stereotype threat, terror
management, and self-efficacy about the patient’s fear of their own dementia condition, the
physicians’ poor quality medical care, and the family caregiver DPOAs’ lack of advocacy for
their loved ones with dementia.
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Findings From Research Question 3
The results for Results Question 3 are briefly summarized here. They are expanded upon
in Chapter Five to provide recommendations for improving the quality of medical care from
physicians and strengthening the advocacy skills of family caregiver DPOAs for patients with
dementia.
Advocacy Training
The qualitative data revealed that advocacy training is key to improving family
caregivers’ skills in advocacy for quality medical care for their loved ones with dementia. As
Participant 5 commented,
I went to support groups and other training sessions. They helped me to understand what
I could and couldn’t change. They helped me understand how to communicate with the
doctor and with my mom. They helped me understand what was going on.
This comment demonstrates the importance of caregiver training for fostering advocacy skills in
family caregiver DPOAs. Participant 7 stated,
My sister and I took the SAVVY Caregiver training curriculum. It was pivotal. I
recommend it to everyone whose parents are going through Alzheimer’s Disease. I
always point people to the SAVY Caregiver course for advocating and for compassionate
caregiving, it is exceptional.
Participant 7’s comment illustrates the importance of family caregiver training for strengthening
their self-efficacy about their skills in advocacy.
Participant 11 was quoted as saying, “We have so many resources. Maria Shriver has a
WAM [Women’s Alzheimer’s Movement] program and I’ve done those sessions.” Participant
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9’s quote illustrates that resources are available for empowering individuals about the condition
of dementia. Participant 12 stated,
I was referred to a geriatric advocate to help me realize he [Participant 12’s great uncle]
needed assisted living. I haven’t been in touch with the advocate since then, but she was
extremely helpful. I couldn’t have done it without her; I really needed it.
This quote illustrates the usefulness of a geriatric advocate for teaching Participant 12 to
advocate for his great uncle.
Summary of Findings from Research Question 3
There was evidence from the qualitative data about the importance of advocacy training
for family caregiver DPOAs. Advocacy training can come from support groups, training
sessions, or a professional advocate. A suggestion for family caregiver DPOAs is participate in
advocacy training or to hire a professional advocate. This can help teach family caregiver
DPOAs how to properly and effectively advocate for their loved ones with dementia.
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Chapter Five: Discussion and Recommendations
Chapter four presented results and findings from the qualitative interview data in an
effort to answer the three research questions that guided this study. The results and findings
considered the quality of diagnostic screening medical care for patients with dementia, as
perceived by the family caregiver DPOAs. It considered macrosystem, exosystem, mesosystem,
and microsystem influences of stereotype threat, terror management, and self-efficacy in relation
to physician ageism and the lack of advocacy from family caregiver DPOAs. As shown in
Chapter Four, some of the macrosystem, mesosystem, exosystem, and microsystem influences of
stereotype threat, terror management, and self-efficacy required revision based on what emerged
in the qualitative interview data.
Discussion
Research shows that medical care for patients with dementia is often poor in quality
(Boutek, 2020; Bragg et al., 2012; Jennings et al., 2016; Seegert, 2019). There have been calls to
improve the quality of care with thorough diagnostic screenings and comprehensive programs of
medical care (e.g., Jennings et al., 2016). The data from this study supports the poor quality of
medical care for patients with dementia. Without well-defined outcomes for improved medical
care, patients with dementia will continue to suffer from inadequate care and billions of dollars
will continue to be wasted from poor quality medical care. It is crucial to develop effective
strategies to change the state of medical diagnoses and care for patients with dementia. Chapter
Five provides recommendations and solutions to improve the quality of medical care for
dementia patients and the advocacy skills of family caregivers.
Across the board, this study discovered family caregiver DPOAs with a strong passion
and commitment in their role of acting as the responsible party for their loved one with dementia.
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Through their open and candid interview responses, the family caregiver DPOAs participants
revealed nuanced information about the problems with diagnostic screening and medical care for
their loved ones with dementia. In regard to quality of care, 12 out of 12 of the family caregiver
DPOAs reported poor diagnosis and treatment plans and observed ageist behaviors toward their
loved ones while in the doctor’s office. They provided answers that supported the macrosystem,
mesosystem, exosystem, and microsystem influences of stereotype threat, terror management,
and self-efficacy in relation to ageism from physicians and lack of advocacy from the family
caregiver DPOAs’. Solutions and recommendations emerged from these results and findings
that may improve medical care for patients with dementia.
A theme that repeatedly arose was the importance of advocacy support training for family
members who are the DPOAs for loved ones with dementia. This concept is a critical idea that
requires further research and real-world application to strengthen family caregiver DPOAs’
advocacy skills for their loved ones with dementia. As mentioned in the literature review, the
research identified the concept of caregiver advocacy training with programs like SAVVY
caregiver training (Hepburn et al., 2003). More training programs can be modeled after a
nonprofit program that already exists in Orange County and many other counties, called the
Savvy Caregiver program (Hepburn et al., 2003). This program offers 8-week long training
sessions for family caregivers of individuals living with dementia (Hepburn et al., 2003). This
training program teaches family caregivers basic knowledge about dementia, skills to determine
fluctuating abilities in individuals with dementia, and attitudes needed to manage the challenges
of caring for these individuals. The residential care facility that was the recruitment setting for
this study could partner with local nonprofit organizations to implement such training sessions
for family caregiver DPOAs. These training sessions could educate family caregiver DPOAs on
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quality medical care and how to demand respect and quality care for individuals with dementia
and themselves. The data from this study showed that advocacy skills can be fostered in a variety
of ways, including SAVVY caregiver training from Alzheimer’s Orange County or the
Alzheimer’s Association courses, hiring an advocate such as a case manager or care manager,
and receiving information from knowledgeable personnel at assisted living memory care
facilities. Another theme that emerged was the issue of a lack of access to medical care and
advocacy training because of the accessibility gap (e.g., differences in family financial stability
and insurance plans). This suggests that more knowledge regarding these training programs need
to reach the general public about the importance of advocacy for their loved ones with dementia.
More advocacy training programs need to be made available across the United State across the
economic strata.
If family caregiver DPOAs can be trained on how to cope with their own fears and on
how to improve their self-efficacy about their advocacy abilities, medical care can improve
through a more collaborative relationship with physicians. As stated by Participant 1, “There
needs to be more of a collaboration between the family caregivers and the doctors about the
medical care of patients with dementia or Alzheimer’s Disease.” If family caregiver DPOAs
could be trained through advocacy facilitation on how to communicate confidently and
effectively about the medical care of their loved ones with physicians, this may help to improve
the overall quality of care for patients with dementia.
Strategies and Recommendations
Twelve out of 12 of the family caregiver DPOAs commented on poor quality medical
care from primary care physicians and specialists. The family caregiver DPOAs who switched
the medical care of their loved ones to a geriatrician reported an improvement in care. Strategies
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need to be developed to reduce ageism among physicians and structural ageism within the
healthcare system. Given the pervasiveness of ageism, strategic goals to reduce ageism will
likely need to occur at many different levels in society. According to the Bronfenbrenner (2005)
social ecological model, several systems in society operate to influence an individual, including
the microsystem level, the mesosystem, the exosystem, and the macrosystem level. Following
this model, ageism-reducing strategies could be implemented within these various systems.
Table 9 shows the summary of multisystem levels of influence and recommendations.
Figure 2 illustrates the multisystem recommendations and solutions for reducing ageism
from physicians, improving medical care, and strengthening the family caregiver DPOAs’
advocacy skills. These are evidence-based recommendations and solutions from the qualitative
interview data that was gathered in this study. After Figure 2, there is detailed discussion of how
each of these recommendations and solutions can improve the quality of medical care of
physicians and the advocacy skills of family caregiver DPOAs for patients with dementia.
Tort Reform
No direct evidence of physicians’ fears of malpractice lawsuits emerged from the data,
but this type of motivation would not be visible to family caregiver DPOAs. Physicians tend to
practice defensive medicine in the medical care of older adult patients from fears of malpractice
lawsuits (Jurgeleit, 1997). At the macrosystem level, Tort Reform could be implemented in every
state within the US. As mentioned previously, the actual economic cost of excessive care and
over treatment from physicians treating based on fear of lawsuits supports the need for legal tort
reform. A lack of limits on lawsuits and prevention of frivolous lawsuits are sure to be in order in
certain states. Tort reform would reduce malpractice insurance costs greatly. An example of this
is the state of Texas, where malpractice suits have limits. Malpractice insurance is much more
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affordable in Texas than in any other state, and many physicians move to Texas to practice
medicine because of this supportive physician environment. Texas House Bill 2292 (Carter,
2006) repealed liability insurance as a requirement for practice, while Texas House Bill 4
reformed medical malpractice and capped the damages for physicians treating older adults in
2003. Since these bills were put in place, geriatric physician lawsuits and other nursing home
claims have declined in Texas (Carter, 2006). On the other hand, the state of California has an
unlimited cap on damages. California has the most malpractice lawsuits targeting physicians and
the senior care industry. Over the past ten years, the number filed malpractice lawsuits have
increased greatly, and facilities cite that they have seen a 60% increase in lawsuits in 2019
(Fetterolf et al., 2019). In 2015, the state of California passed AB 1523, which forced all small
(under 6 beds or less) or larger assisted living facilities to carry one to three million of aggregate
liability insurance. This law increased lawsuits of various types, including “attorney led”
lawsuits, and it would impact malpractice lawsuits as well (Fetterolf et al., 2019). As recently as
June 24, 2020, California Governor Newsom announced that he will not shield senior care
facilities from lawsuits from the pandemic (Condon et al., 2020).
With the fear of malpractice, physicians tend to practice defensive medicine, which can
include the undertreatment and overtreatment of older adult patients (Jurgeleit, 1997). For
example, one study showed that 42% of physicians believed their patients were being
overtreated, with the fear of lawsuits most often cited as the reason (Sirovich et al., 2011). A
physician questionnaire in Health Affairs (Carrier et al., 2013) gave verification that malpractice
concerns influence how many medications and treatments occur and physicians are more likely
to refer older adults to the emergency room to protect themselves from litigation (Carrier, et al.,
2013). The actual economic cost of excessive care from physicians treating based on fear of
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lawsuits supports the need for legal tort reform. A lack of limits on lawsuits and prevention of
frivolous lawsuits are sure to be in order in certain states. Tort reform would reduce malpractice
insurance costs greatly.
An example of this is the state of Texas, where malpractice suits have limits. Malpractice
insurance is much more affordable in Texas than in any other state, and many physicians move
to Texas to practice medicine because of this supportive physician environment. Texas House
Bill 2292 (Carter, 2006) repealed liability insurance as a requirement for practice, while Texas
House Bill 4 reformed medical malpractice and capped the damages for physicians treating older
adults in 2003. Since these bills were put in place, geriatric physician lawsuits and other nursing
home claims have declined in Texas (Carter, 2006). On the other hand, the state of California has
an unlimited cap on damages. California has the most malpractice lawsuits targeting physicians
and the senior care industry. Over the past ten years, the number filed malpractice lawsuits have
increased greatly, and facilities cite that they have seen a 60% increase in lawsuits in 2019
(Fetterolf, et al., 2019). In 2015, the state of California passed AB 1523, which forced all small
(under 6 beds or less) or larger assisted living facilities to carry one to three million of aggregate
liability insurance. This law increased lawsuits of various types, including “attorney led”
lawsuits, and it would impact malpractice lawsuits as well (Fetterolf et al., 2019). As recently as
June 24, 2020, California Governor Newsom announced that he will not shield senior care
facilities from lawsuits because of the pandemic (Condon et al., 2020).
Medicare Revisions
As with Tort Reform, no direct evidence of the need for Medicare revisions emerged
from the data because would not be visible to the family caregiver DPOAs. Physician ageism
toward older adults may stem from the amount of time that physicians feel they have to spend
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with patients with dementia (Anderson et al., 2021). Ageism stemming from the amount of time
physicians feel they have to spend with patients with dementia may be resolved at the
macrosystem level with revisions to Medicare (Lopez et al., 2020). Reimbursements to
physicians could be higher for visits with patients with dementia (Lopez et al., 2020).
Geriatrician Educational and Grant Funding
The data from this study identified a lack of self-efficacy in the physicians who medically
treat patients with dementia. Participants mentioned that medical care improved once their loved
ones were receiving treatment from the knowledgeable geriatrician who is affiliated with the
assisted living memory care facility where their loved one resides. These lead to an open-coded
them that emerged from the data pertaining to the importance of a geriatrician for treating
patients with dementia. At the exosystem level, a strategy to improve physician’s self-efficacy is
to offer medical students an incentive to become licensed geriatricians with grants from the NIA
(2019).
Another strategy at the exosystem level is to provide grants through the Directors of
Geriatric Training Academic Programs (ADGAP) to medical schools that mandate geriatric
training for their medical students (National Academy of Sciences, 1994). Such efforts would
facilitate an increased number of physicians who are board certified geriatricians. There are
currently 7,000 geriatricians in the United States. Another idea to attract more students to the
field of Geriatrics would be for the government to consider medical school loan forgiveness to
medical students who pursue a career in Geriatric medicine just as our government does for
medical students who serve in impoverished areas. It is estimated that to meet the medical
demands of the ever-increasing aging population, medical schools need to train an additional
6,250 geriatricians between by 2030 (Hafer, 2016)). These exosystem level efforts will become
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increasingly crucial with an estimated 49 million individuals aged 65 years or older living in the
United States (National Institute on Aging [NIA], 2020a). Approximately 5.7 million Americans
live with dementia (American Speech-Language-Hearing Association, 2020), and these rates are
expected to continue to rise (Lynch, 2018). Alzheimer’s disease is the third most expensive
disease to treat in the United States after cancer and coronary heart disease. The total cost of care
for dementia is growing. By 2050, the total cost of care for Alzheimer’s disease is expected to
increase to $1.1 trillion over the next 30 years. According to Dr. Fargo, a strategy for offsetting
these costs includes a combination of research and improved care for patients with dementia and
their family caregivers (Lynch, 2018). Legal Requirements and regulations should include that
physician’s whose medical practice encompasses more than 20% of older adult patients and be
board certified in either hospice care or geriatric care. For these reasons, additional training for
the health care community is needed to meet the ever-increasing demands of an aging population
with physicians who have been rigorously trained in geriatric medicine and dementia care.
Geriatrician training and education should be a priority and regulated that any physician
including primary care physicians, internists, neurologists and psychiatrists receive proper
training and ongoing education. A recommendation is for geriatrician education to include
training on how to explain differential diagnosis to the family caregiver DPOAs and their loved
ones. The Diagnostic and Statistical Manual of Mental Disorders (DSM) is the handbook used by
healthcare professionals in United States and around the world to guide diagnoses of mental
health disorders (American Psychological Association, 2021). The DSM could specify, clarify,
and distinguish between the different types of dementia.
The Kirkpatrick model of evaluation could be used to assess the efficacy of this type of
training (Kirkpatrick, 2006). The Kirkpatrick evaluation model assesses the effectiveness of
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educational programs, including medical training program, with four levels of evaluation (Dorri
et al., 2016). Level 1 (Reaction) assesses how participants respond to the training, such as their
degree of satisfaction with the training program. Geriatricians in training could be surveyed
regarding their level of satisfaction with their medical program and whether they perceived that
their training was effective. Level 2 (Learning) measures if the participants truly understand the
training. At this level of assessments, newly trained geriatricians could be tested for an increase
in knowledge or skills regarding age-related diseases and conditions, including dementia. Level 3
(Behavior) evaluates whether participants are actually applying in practice what they learned in
the training program. At the behavioral assessment level, trained geriatricians could be evaluated
for whether they can actually apply their medical training to increased quality of care and
reduced ageism when treating older adult patients with dementia. Level 4 (Results) assesses
whether the educational material had a positive impact. For example, at this level of analysis,
researchers could assess whether there are reduced costs for the treatment of dementia and
improved overall quality of life and symptom management for patients with dementia as a result
of an increase in the number of licensed geriatricians.
The usefulness of the Kirkpatrick model was identified in evaluating the effectiveness of
using a clinical informant with respect to an increase in medical trainees’ satisfaction, attitude,
knowledge, and information-seeking skills (Tahmasebi et al., 2020). The Kirkpatrick Model
could be used to evaluate the efficacy of newly installed programs designed to train future
geriatricians. This model could also be used to test the effectiveness of continuing education
seminars in geriatric medicine for working primary care physicians. The data from this study
also showed evidence of the lack of collaboration, at the mesosystem, between physicians and
family caregiver DPOAs in the medical care of patients with dementia. Physicians require
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training in behaving in more compassionate and less authoritarian manner with family caregiver
DPOAs to foster shared decision making about the medical care of the patients with dementia
(Frosh et al., 2012). Family caregiver DPOAs and patients with dementia may lack trust in
physicians as a result of the lack of collaborative efforts, failure to prescribe proper medication,
and failure to develop effective treatment plans. Physicians require training in collaborative
efforts with family caregiver DPOAs to strengthen the trust of the family caregiver DPOAs and
the patients with dementia. Although the recommendation for collaboration training for
physicians was identified as the problem at the mesosystem level, the solution can be resolved in
the exosystem-level with the abovementioned geriatrician training where physicians can be
educated on how to treat the family caregivers respectfully and as members of a team focused on
the medical care of the dementia patient. Poor and rude behaviors such as speaking over a patient
or ignoring that the patient is in the room could be minimized with proper accountability and
empathy training or sensitivity training (Adams, 2006).
Figure 3 is a pyramid illustration of the stages of assessment using the efficacy of
geriatrician training programs using the Kirkpatrick model. In this pyramid, the first, bottom
level is the reaction stage, followed by the learning phase, then the behavior stage, and the top
point of the pyramid is the results stage.
Family Caregiver Advocacy Training
Based on the evidence from this study, at the exosystem level, more advocacy programs
are recommended to be developed and made available across economic strata that provide
empowerment training to family caregiver DPOAs. This training could teach family caregiver
DPOAs to identify signs of ageism from physicians and to demand respectful and quality
medical care for dementia patients. Family caregiver DPOAs will require training on how to
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regulate and understand their own fears of dementia. As demonstrated in a study by Hepburn et
al. (2003), family caregivers who participated in a 12-hour SAVVY Caregiver program
demonstrated an increase in skills, knowledge, and confidence, and all participants recommended
the program to other family caregivers. This study provided data, at the mesosystem level, that
recommends training to improve the collaborative skills of family caregiver DPOAs and
physicians in the medical care of patients with dementia. Family caregiver DPOAs require
training in how to overcome the power differential barrier, which can prohibit shared decision
making with the physicians (Frosh et al., 2012). Though this was identified as the problem at the
mesosystem level, the solution can be resolved in the exosystem level family with the
recommended caregiver advocacy training programs by teaching family caregiver DPOAs who
to communicate confidently with physicians and how to ask knowledgeable questions about the
medical care of their loved ones with dementia.
Programs that are informed by the SAVVY Caregiver program model could be delivered
in-person and/or online. The benefits of online programs are the they can be viewed from the
family caregivers’ homes and they can reach a wider range of family caregivers. Indeed, there
are now several free online family caregiver courses and training (Hipp, 2019). More efforts
need to be made to make family caregivers aware of the existence of these courses so that they
are empowered to receive such training should they need it. As a part of this training, family
caregiver DPOAs should be informed about the struggles that patients often face with respect to
receiving comprehensive medical care due to specific stigmas of the patients. For example,
patients with dementia may face the double stigma from physicians because of their age and their
diagnosis. To add insult to injury, aging patients with dementia who belong to an additional
marginalized or oppressed group may face even more struggles with respect to being denied high
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quality medical care. Family caregiver DPOAs need to be aware of this problem so that they can
effectively advocate for optimal diagnostic screenings and medical care for their loved ones. The
findings from this study revealed how the quality of medical care for patients with dementia
increased once the families switched doctors to the geriatrician who is affiliated with the assisted
living facility/recruitment setting. Family caregiver DPOAs should be educated in advocacy
training that they should seek a geriatrician specialist and not a general practitioner or internist
for the medical care of their loved one with dementia. Families or advocates could be trained to
ask for a geriatrician certification and/or a hospice care certification to ensure that the physician
will be inclusive and educated in geriatric medicine and know how to treat dementia as a disease,
rather than a sign of aging. As with the geriatrician training programs, future caregiver advocacy
programs could be evaluated with the Kirkpatrick model of evaluation (Kirkpatrick, 2006).
Counseling and Case Management for Patients
Based on the evidence from this study, at the microsystem level, counseling services for
patients with dementia of all economic strata are recommended. A comprehensive medical care
plan for patients with dementia needs to include both pharmacological medication and social
service referrals (Jennings et al., 2016). Case management in the care for older adults with
dementia can improve their psychological health and reduce their unmet service needs (You et
al., 2012). Case management can be used to collaborate with family caregivers about how to best
meet the psychological and medical needs of the patients. The results of a study showed that the
use of case management for older adults with dementia significantly improved the patients’
psychological health and overall sense of well-being. The patients reported fewer unmet service
needs after receiving case management care. The participants in this study who used an advocate
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insisted that they could never have handled the process of setting up medical care and assisted
living for their loved without an advocate.
Cost/Benefit Analysis
The evidence-based recommendations from this study require a complex and multisystem
approach that includes strategies for improvement at the microsystem, mesosystem, exosystem,
and macrosystem levels. This raises the question of whether such a complex approach at multiple
levels of society will reduce the costs of dementia care versus outweigh the costs of poor quality
medical care for dementia. Table 10 shows a breakdown of the annual costs to the United States
for the implementation strategies to improve medical care and family caregiver DPOA advocacy
for patients with dementia compared to the annual costs to the United States of poor quality
medical care for dementia.
As shown in Table 10, the total estimated costs of the proposed strategies are: =
$522,750,500,000.00 and the estimated total savings of the ageism-reducing strategies are:
$617,390,000,000.00. Using the benefit-to-cost ratio equation, the benefit-to-cost ratio is (B/C) =
1.18. In a benefit-to-cost ratio analysis, a value over 1.0 indicates that the ageism-reducing
strategies will deliver a positive net present value. The value of 1.18. indicates that the benefits
of the recommended strategies outweigh the costs of poor quality medical care for dementia.
Multisystem efforts to reduce ageism and improve the overall quality of medical care for
dementia patients is not just a question of improving physicians’ bed side manners. It is a matter
of reducing the burden of billions of wasted dollars from poor quality medical care for dementia
patients (Garber, 2019).
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Future Directions
Several ideas for future directions emerged from the results. First, future research could
benefit from a mixed method design of both quantitative and qualitative data (Creswell &
Creswell, 2018). This mixed method design would strengthen the creditability of the data using
the triangulation of having two different kinds of data collection about the quality of medical
care for patients with dementia (Merriam & Tisdell, 2016). Second, future research could benefit
from a multi-report approach that includes responses from both family caregiver DPOAs and the
physicians who treat the patients with dementia. This would provide a more robust and multi-
perspective understanding of the reasons for ageism and poor quality medical care in the
treatment of patients with dementia. Third, future research could examine the role of having an
HMO plan in determining restrictions on access to a geriatrician in the treatment of patients with
dementia. Fourth, future research could collect a larger sample to have the power to examine
group-level differences in the quality of care, such as the gender, age, and ethnicity of the
physician and the age, gender and ethnicity of patient with dementia. Further analysis in a new
socio economic location may show further disparity of ageism, even more than the Southern
California geographic area. It is interesting to note that such an educated group of DPOAs would
have reported such a large amount of ageism. Socio economic variables and educational levels
could be explored. Many of the families reported that they had excellent insurance, a comparison
of various insurance plans would also be beneficial. What would a different geographical area
have revealed? Altogether, there are many avenues for future research to expand the topic that
was addressed in this dissertation. The topic of poor quality medical care for patients with
dementia could benefit from many more studies on this topic to advance our knowledge and
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ability to make evidence-based recommendations for the improvement of medical care in the
diagnosis and treatment of dementia.
Summary
In summary, there are multisystem level recommendations and solutions that can be
implemented to reduce ageism and poor quality medical care for patients with dementia and
improve family caregiver advocacy. The implementation of macrosystem level solutions, such as
Tort Reform, may improve the overall quality of medical care that physicians provide to patients
with dementia by reducing the fear of malpractice lawsuits which often lead to overtreatment or
undertreatment. Medicare revisions are recommended increase the reimbursements to physicians
who treat older adult patients with dementia because of the need for longer and more
comprehensive physician visits. At the exosystem level, it is recommended to increase the
training of more medical students to become geriatricians, as well as mandating geriatric training
in all medical schools, as well as to increase training programs that strengthen the advocacy
skills of family caregiver DPOAs. At the mesosystem level, it is recommended to improve the
collaboration skills between physicians and family caregiver DPOAs in the medical care of
patients with dementia. A recommendation at the microsystem level is to provide counseling and
care management services to help patients with dementia cope with their diagnosis and gain
advocacy skills.
Conclusion
The purpose of this study was to understand ageism and poor quality medical care from
physicians and the lack of advocacy from primary caregiver DPOAs for patients with dementia.
The implementation of the recommended strategies at multiple levels of society (i.e., the
microsystem, the mesosystem, the exosystem, and the macrosystem) may reduce ageism,
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improve medical care for patients with dementia, strengthen family caregiver DPOA advocacy
and save society billions of dollars in treatment and care of patients with dementia. This strategy
is defined by success from the beginning and offers a financial return. With these strategies, we
can address the complex problem of providing quality medical care to patients with dementia,
thereby minimizing the adverse effects of ageism and structural ageism in our healthcare system.
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108

World Health Organization. (2020a). Dementia. https://www.who.int/news-room/fact-
sheets/detail/dementia
World Health Organization. (2020b). Ageing and life-course: Global campaign to combat
ageism. https://www.who.int/ageing/ageism/campaign/en/
World Health Organization (2021). Ageism: Ageism.
https://www.who.int/westernpacific/news/q-a-detail/ageing-ageism
You, Emily Chuanmei, et al. "Effects of case management in community aged care on client and
carer outcomes: a systematic review of randomized trials and comparative observational
studies." BMC Health Services Research 12.1 (2012): 1-14.

109

Tables
Table 1
Mission of Organizations and Performance Goals for the Study
Organizational Mission

The assisted living facility in Southern California is dedicated to providing compassionate
and loving care to all of its residents. The organization aspires to provide families peace of
mind and to give its residents the highest quality of life. All their care is based on the most
up to date empirical research and collaboration in the field of Aging and Gerontology.

Organizational Performance Goal

By January 2023, assisted living facilities in Orange County will achieve collaboration with
local nonprofit organizations, will implement 8-week long family caregiver DPOA
advocacy training sessions.

Performance Goal (Family
Caregiver DPOAs)

Performance Goal (Primary
Care Physicians)

Performance Goal
(Dementia Patients)

By July 2023, family
caregiver DPOAs will be able
to demand early and thorough
diagnostic dementia screening
and comprehensive medical
care for their family
members/loved ones and
themselves.

By July 2023, primary care
physicians will reduce ageist
behaviors and properly
diagnose and treat dementia
patients.

By July 2023, older adult
patients with dementia
will receive proper
diagnoses and treatments
for dementia.

110

Table 2
Cost Analysis of Medical Care for Dementia
Category Annual Costs to
the United States
for Poor Quality
Medical Care for
Patients with
Dementia

Details References
Liability in the care
of older adult
patients
$2.79 Million Common liability issues: pressure,
ulcers, falls, dehydration,
malnutrition, failure to treat, and
injuries
Iyer (2004)

Medical liability
system costs

$55.6 Billion

Estimated costs in the U.S. per year
from liability system costs,
including defensive medicine

Mello et al.
(2010)

Dementia care

$259 Billion

Components of cost: physician
offices, hospitalizations, nursing
homes, medication, dementia
research, training of health care
professionals in dementia care

Stringfellow
(2020)

Overtreatment of
dementia

$100 Billion

Cost to society of overtreating
dementia

Garber
(2019)

Undertreatment of
dementia

$200 Billion

Cost to society of undertreatment
dementia

Small (2016)

111

Table 3
Assumed Influences on Ageism and Lack of Advocacy
Assumed Influences Ageism From Physicians Lack of Advocacy From Family
Caregiver DPOAs

Influences from
terror management

Physicians’ fear of death and
dementia worry causes them
to regulate this fear with
ageism and poor-quality
medical care for patients
with dementia.

Physicians’ fear of malpractice
lawsuits from the family caregiver
DPOAs may cause them to overtreat
older adult patients with dementia.

Influences from self-
efficacy

Physicians’ low sense of self-
efficacy about their abilities
to effectively treat dementia
cases causes them to
develop ageism toward
older adults with dementia.

Family caregivers with a low sense of
self-efficacy about their medical care
knowledge may fail to advocate for
their family members or loved ones
with dementia.

Influences from
stereotype threat

Physicians’ stereotypes of
patients with dementia may
result in ageism and poor-
quality medical care.

Family caregiver DPOAs’ fears about
physicians stereotyping patients with
dementia and themselves may result
in their failure to advocate for these
patients.

112

Table 4
Data Sources
Research Questions
Method 1: Semi-
Structured Qualitative
Interviews
RQ1: What quality of medical care do primary care physicians
provide to older adult patients with dementia, as perceived by
the family caregiver DPOAs?

X
RQ2: What macrosystem, exosystem, mesosystem, and
microsystem influences from stereotype threat, terror
management, and self-efficacy are related to poor quality
medical care from physicians and a lack of family caregiver
DPOA advocacy, as perceived by family caregiver DPOAs?

X
RQ3: How can caregivers improve the effectiveness of their
advocacy for older adult patients with dementia and enhance
primary care physicians’ accountability for diagnosis and
treatment of these patients?

X

113

Table 5
Summary Characteristics for Patients With Dementia
Diagnosis Relationship to
Participant
Gender Living or
Deceased
Status
Age
Alzheimer’s
Disease
Mom Female Living 96
Alzheimer’s
Disease
Mom Female Living 77
Alzheimer’s
Disease
Mom Female Living 78
Alzheimer’s
Disease
Mom

Female Deceased 78 when
passed
Alzheimer’s
Disease
Mom

Female

Living 77
Dementia Mom Female Deceased 102 when
passed
Dementia Wife Female Living 80
Dementia Mom Female Living 105
Dementia Great Uncle Male Living 95
Posterior Cortical
Dementia
Sister-in-Law Female Deceased 50
Vascular
Dementia
Mom Female Deceased 82

Vascular
Dementia
Mom Mom Deceased 105

114

Table 6
Summary Characteristics for Family Caregiver DPOAs
Gender Age

Highest Level of
Education

Occupation
Male

60

Master’s Degree

Business/consulting
Female

53

Master’s Degree

Homecare director
Female 54

High School
Degree

Account executive in
telecommunications
Male 55

Master’s Degree CEO Non-profit
Female

79

Bachelor’s Degree

Fundraiser at a University
Alzheimer’s Research

Male

82

Bachelor’s Degree

Teacher
Female 56

Master’s Degree Community outreach

Female 64 Bachelor’s Degree

Consultant
Female 56 Master’s Degree Outreach/Philanthropist

Female

52

Bachelor’s Degree

Sales Director IT

Male

52

Bachelor’s Degree

Computer Software Sales

115

Table 7
A Priori and Open-Coded Themes
Research Question 1 What quality of medical care do physicians provide to older adult
patients with dementia, as perceived by family caregiver DPOAs?

A priori theme

Quality of diagnostic screening/diagnosis
A priori theme

Open-coded theme

Open-coded theme

Open-coded theme
Quality of medical care for dementia

Importance of geriatricians

Accessibility gaps

Ageism during COVID-19

Research Question 2 What macrosystem, exosystem, mesosystem, and microsystem
influences from stereotype threat, terror management, and self-
efficacy are related to poor quality medical care from physicians
and a lack of family caregiver DPOA advocacy, as perceived by
family caregiver DPOAs?

Open-coded theme

Stereotype threat from patients with dementia
A priori theme

Terror management from family caregiver DPOAs
A priori theme

Self-efficacy from physicians
A priori theme

Self-efficacy from family caregiver DPOAs
A priori theme Self-efficacy in family caregiver DPOAs’ and physicians’ abilities
to collaborate on the medical care of patients with dementia.

Research question 3 How can caregivers improve the effectiveness of their advocacy for
older adult patients with dementia and enhance primary care
physicians’ accountability for the diagnosis and treatment of these
patients?

A priori theme Recommendations for family caregiver DPOA advocacy

116

Table 8
Family Caregiver Response Frequencies

1

2

3

4

5

6

7

8

9

10

11

12

A priori themes

Quality of
diagnostic
screening and
diagnosis

3 1 1 1 3 1 3 1 1 1 1 1
Quality of
medical care

1 1 1 2 2 2 1 1 1 2 2 1
Terror
management
from family
caregiver
DPOAs

- - 1 - - - - 1 - - 1 -
Self-efficacy from
family caregiver
DPOAs

1 2 1 1 3 1 1 1 1 1 1 1
Self-efficacy from
physicians

1 1 1 - - - 1 - - - 1 1
Self-efficacy in
the collaboration
skills between
family caregiver
DPOAs and
physicians

3 2 - 1 - - - - - - - -
Ageism during
COVID-19

1 1 - 1 1 - 1 1 1 1 1 -
Recommendations
for family
caregiver
advocacy

1 1 - 1 1 2 1 2 1 1 1 1
117

Open-coded
themes

Importance of
geriatricians

1 - - - 3 - 2 - - 2 - 1
Stereotype threat
from loved ones
with dementia

1 1 1 1 - - 1 1 1 - 2 1
Ageism due to
COVID-19

1 1 - 1 1 - 1 1 1 1 1 1
Accessibility gaps

1 - - 1 1 - 4 - 1 - 1 -

Note. P = Participant (e.g., P 1 = Participant 1). - = Theme was not endorsed/mentioned by a
given participant.

118

Table 9
Summary of Multi-System Influences and Recommendations
Assumed Influences
MS = macrosystem
MES = mesosystem
ES = exosystem
MIS = microsystem

Citation Recommendations
Tort Reform (MS) With the fear of malpractice,
physicians tend to practice defensive
medicine, which can include the
undertreatment and overtreatment of
older adult patients (Jurgeleit, 1997).
011). A physician questionnaire in
Health Affairs (Carrier et al., 2013)
gave verification that malpractice
concerns influence how many
medications and treatments occur
and physicians are more likely to
refer older adults to the emergency
room to protect themselves from
litigation (Carrier et al., 2013).

Tort Reform in all
states is needed to
reduce rates of
malpractice lawsuits
as a strategy to
improve overall
quality of medical
care for dementia
patients at the
macrosystem level
Medicare
reimbursements
(MS)
Payment revisions are needed to
Medicare so that reimbursements to
physicians are paid higher for visits
with older adult dementia patients
(Lopez et al., 2020). Increased
Medicare reimbursement rates for
physicians who make house call
visits with older adults who are home
bound or living in a facility.
Revisions need to be
made to increase
reimbursements for
physicians who treat
older adult patients
with dementia due
the fact that a
physician visit may
take more time for
this population. This
may improve the
overall quality of
care provided to
older adult patients
with dementia.

Collaborative
training in medical
school for
geriatricians and in
advocacy training
Geriatrician training programs can
teach physicians how to actively
collaborate with family caregiver
DPOAs (Span, 2020). Family
caregiver advocacy training
Geriatricians programs
and family caregiver
advocacy training
programs need to
teach geriatricians in
119

for family
caregiver DPOAs
(MES)

programs can teach family caregiver
DPOAs how to ask informed
questions of the physicians (Hepburn
et al., 2003)
training and family
caregiver DPOAs,
respectively, how to
interact and
collaborate
effectively for
improved medical
care for patients with
dementia.

Geriatric training in
medical school and
grants to
incentivize
geriatric training
(EX)
Medical schools need to offer medical
students who pursue geriatric
training monetary incentive in the
form of grants from the National
Institute on Aging (NIA) (NIA,
2019). Another approach at the
exosystem level is to provide grants
through the Directors of Geriatric
Training Academic Programs
(ADGAP) to medical schools that
mandate geriatric training for their
medical students (National Academy
of Sciences, 1994). The shifting
demographics of an aging society
and the fact that older adults visit the
doctor’s office more often make it a
necessity to educate primary care
physicians on geriatric medicine.
Geriatric training and
grants would
facilitate an increased
number of physicians
with specialized
geriatric training.
Mandating geriatric
training in medical
school would prepare
and educate
physicians on the
normal aging and
disease.

Advocacy
facilitation
modelled after the
SAVVY caregiver
training (MIS)

More training programs can be
modeled after a nonprofit program
that already exists in Orange County
called the Savvy Caregiver program
(Hepburn et al., 2003). This program
offers 8-week long training sessions
for family caregivers of individuals
living with dementia (Hepburn et al.,
2003). Family support groups that
already exist throughout the country,
could adapt advocacy training
programs in addition to their
supportive environment.

Advocacy training
would facilitate
increased self-
efficacy in family
caregiver DPOAs’
skills in advocating
for high quality
medical care for their
loved ones with
dementia. This
training would allay
their fears of their
own hereditary risks
of dementia through
education and
knowledge.

120

Counseling services
for patients with
dementia (MIS)
Comprehensive medical care includes
pharmacological as well as non-
pharmacological medication and
recommendations for other forms of
care, including counseling and
support services for patients with
dementia (Jennings et al., 2016).
Social work, care management and
case management would be critical to
help guide families through the
complexity of geriatric medicine and
treatment of dementia. Social work
and Case management could give
support and guidance to family
members for better physician
collaboration and may relay the facts
on dementia and genetic risks.
Families could benefit from a better
understanding of what is normal
aging and what is dementia,
including an explanation on the
definition of dementia vs.
Alzheimer’s disease.

Counseling services
for patients with
dementia would
reduce their fear of
their condition
because of stereotype
treat, their denial, and
their fears of being a
burden.

121

Table 10
Cost/Benefit Analysis of Medical Care for Dementia
Category Annual Estimated
Costs to the
United States for
Strategies and
Recommendations

Details References
U.S. Tort Reform
System
$429 Billion Estimated cost and compensation
paid in the U.S. Tort Reform
System in 2016 using insurance
data and estimated uninsured
costs. Costs and compensation
defied as “aggregate amount of
judgements, settlements, and
legal administrative costs
adjucating the associated private
claims and enforcement actions”
(p.2).

U.S.
Chamber
for the
Legal
Reform
(2018)
Medicare revisions to
increase
reimbursements for
the treatment of
older adults
$84 Billion Average is about $42.3 Billion. It
is estimated that private insurers
paid nearly double in Medicare
rates
Lopez et al.
(2020)

Increase in National
Institute on Aging
(NIA) training grant
funds allocated to
students who pursue
geriatrician training

$3 Million

Funds are $1 Million in FY 2020
to fund 4 to 6 awards. Call for
NIA to triple that amount so that
12 to 18 students receive
geriatrician training

NIA (2019)

Association of
Directors of
Geriatric Training
Academic Programs
grants to medical
programs that
mandate a
geriatrician training
program

$6.75 Million

Grant funds for the leading
geriatric institute are $1.5
Million. Call to allocate $1.5
Million to top 4 or 5 medical
schools that mandate geriatrician
training

National
Academy of
Sciences
(1994)

122

Funding from
Administration on
Aging through the
Alzheimer’s Disease
Demonstration
Grants to States
Program

$500,000 Calls to allocate funds to 20
family caregiver advocacy
training programs. Based on data
that each SAVVY caregiver
program license is $25,000 per
year per license
Hepburn et
al. (2003)
Category Annual Costs to
the United States
for Poor Quality
Medical Care for
Patients with
Dementia

Details References
Liability in the care of
older adult patients
$2.79 Million Common liability issues: pressure,
ulcers, falls, dehydration,
malnutrition, failure to treat, and
injuries
Iyer (2004)

Medical liability
system costs

$55.6 Billion
Estimated costs in the U.S. per
year from liability system costs,
including defensive medicine
Mello et al.
(2010)

Dementia care

$259 Billion

Components of cost: physician
offices, hospitalizations, nursing
homes, medication, dem
entia research, training of health
care professionals in dementia
care

Stringfellow
(2020)

Overtreatment of
dementia

$100 Billion

Cost to society of overtreating
dementia

Garber
(2019)

Undertreatment of
dementia

$200 Billion

Cost to society of undertreatment
dementia

Small
(2016)

123

Figures
Figure 1
Conceptual Framework for the Study

dfdf
MACROSYSTEM
Terror Management Theory: Primary care physician fear of
Malpractice lawsuits from family caregivers
EXOSYSTEM
MESOSYSTEM
MICROSYSTEM
INDIVIDUAL
Terror Management Theory: Primary care physicians ’ fears due to lack of
geriatrician training or geriatrician board certification
Self-Efficacy Theory: Family caregiver DPOAs ’ lack of self-efficacy in their
ability to advocate
Self-Efficacy Theory: Lack of self-efficacy from physicians
and family caregiver DPOAs in their abilities to interact and
collaborate
Theory of Stereotype Threat: Family caregiver DPOAs ’
fears of being stereotyped by primary care physicians
Terror Management Theory: Family caregiver DPOAs ’ fears
of their own risk of dementia
Patients with dementia
124

Figure 2
Bronfenbrenner’s Social Ecological Model

dfdf
MACROSYSTEM
Tort Reform to reduce malpractice lawsuits
Medicare revisions to increase reimbursements for treating aging patients
EXOSYSTEM
MESOSYSTEM
MICROSYSTEM
INDIVIDUAL
NIA grants and ADGAP medical training to increase numbers of geriatricians
Kirkpatrick Evaluation model to test efficacy of these programs
Training to promote collaborative skills between
geriatricians and family caregiver DPOAs
Family caregiver advocacy training programs
Counseling and case management for patients with
dementia
Patients with dementia
125

Figure 3
Stages of Assessment Using the Kirkpatrick Model

126

Appendix A: Informed Consent/Information Sheet for Nonmedical Research
Study Title: Family Caregivers’ Reports of Physician Ageism and the Quality of Medical Care
Provided to Older Adults with Dementia
Principal Investigator: Jacqueline Lehn Dupont
Department: Rossier School of Education

INTRODUCTION

We invite you to take part in a research study. Please take as much time as you need to read this
consent form. You may want to discuss it with your family, friends, or your doctor. If you find
any of the language difficult to understand, please ask questions. If you decide to participate, you
will be asked to sign this form. A copy of the signed form will be provided to you for your
records.

KEY INFORMATION

The following is a short summary of this study to help you decide whether you should
participate. More detailed information is listed later in this form.

1. Participation in this research study is voluntary—it is your choice.
2. You are being asked to participate in this study because you are a family caregiver of a
patient with dementia from an assisted living facility in Orange County, CA. The purpose
of this study is to better understand the medical care of patients with dementia. Your
participation in this study will last approximately 45–60 minutes. If you volunteer to
participate in this study, you will be asked to participate in one scheduled interview. The
interview will be recorded. You will be allowed to review the interview transcription and
retract or amend any statement or the interview in its entirety. The interview will occur at
a quiet and safe location that is convenient for you, the participant. Each interview will
last no longer than one hour.
3. No risks are foreseen resulting from your participation in this study.
4. You may not receive any direct benefit from taking part in this study. However, your
participation in this study may help us learn more about advocating for patients with
dementia and their family caregivers.
5. If you want to participate but feel uncomfortable in the interview process, a written list of
questions can be provided to you for completion at your convenience.

DETAILED INFORMATION

PURPOSE

The purpose of this study is to evaluate the medical care that is provided to patients with
dementia. We hope to better understand the medical care provided to these patients by their
primary care physicians. You are invited as a possible participant because you are a family
caregiver of a patient with dementia. Approximately 13 participants will take part in the study.

127

PROCEDURES

• If you volunteer to participate in this study, you will be asked to attend one scheduled
online Zoom interview. The interview includes 32 questions and will last about 45–60
minutes.
• The interviews will be recorded. You will be allowed to review the interview
transcription and retract or amend any statement or the interview in its entirety. The
interviews will occur at a quiet and safe location that is convenient for you, the
participant.
• The data will be stored on a password-protected computer. As stated previously, you will
be able to access your interview transcription for edits or retractions. A numerical
identification (ID) will be assigned to you (i.e., if you are a woman named Jennifer, your
ID number may be 7) for inclusion purposes in the dissertation. You will have the right to
review the ID number before its use. All data will be coded for similarities in responses.
Federal records require the data to be stored for seven years, then destroyed.

RISKS AND DISCOMFORTS

Although unanticipated, all data will be stored on a password-protected laptop to mitigate the
risk of a possible breach of confidentiality. Only the Principal Investigator and the Study
Supervisor will know the password.

BENEFITS

There are no direct benefits to you from taking part in this study. However, your participation
will help us better understand the medical care provided to patients with dementia and provide
insight into strategies to advocate for these patients and their family caregivers. Regardless of
content, honesty and insightful responses will foster better advocacy from an assisted living
facility in Orange County for patients with dementia and their family caregivers.

PRIV ACY/CONFIDENTIALITY

We will keep your records for this study confidential as far as is permitted by law. However, if
we are required to do so by law, we will disclose confidential information about you, such as
elder abuse. Efforts will be made to limit the use and disclosure of your personal information,
including research study and medical records, to people who are required to review this
information. We may publish the information from this study in journals or present them at
meetings. If we do, we will not use your name.

As part of this research, your information will not be used or distributed for future studies, even
if all identifiers are removed.

ALTERNATIVES

An alternative person is not able to participate in this study.
PAYMENTS
128

You will not be compensated for your participation in this research.

POTENTIAL CONFLICT OF INTEREST

There are no conflicts of interest for this study.

VOLUNTARY PARTICIPATION
It is your choice to participate in this study. If you choose to participate, you may change your
mind and leave the study at any time. Refusal to participate or stop your participation will
involve no penalty or loss of benefits to which you are otherwise entitled.

If you stop being in the research, already collected data may not be removed from the study
database. You will be asked whether the investigator can continue to collect data from your
records. If you agree, this data will be handled the same as the research data. No new information
or samples will be collected about you or from you by the study team without your permission.

The research assistant may still, after your withdrawal, need to report any safety event, such as
psychological harm, that you may have experienced due to your participation to all entities
involved in the study. Your personal information, including any identifiable information that has
already been collected up to your withdrawal time, will be kept and used to guarantee the study’s
integrity, determine the safety effects, and satisfy any legal or regulatory requirements.

CONFIDENTIALITY
Any identifiable information obtained in connection with this study will remain confidential,
except if necessary, to protect your rights or welfare (for example, if you are injured and need
emergency care).

No identifiable information will be used when the research results are published or discussed in
conferences.

CONTACT INFORMATION
If you have any questions, concerns, or complaints, or think the research has hurt you, please
contact Jacqueline Lehn Dupont, the Principal Investigator of the research study.

This research has been reviewed by the USC Institutional Review Board (IRB). The IRB is a
research review board that reviews and monitors research studies to protect research participants’
rights and welfare. Contact the IRB if you have questions about your rights as a research
participant or you have complaints about the research. You may contact the IRB at (323) 442-
0114 or by email at irb@usc.edu.

129

Appendix B: Interview Protocol
Introduction to the Interview: Thank you for taking the time to meet with me. I am the
research assistant for the Principal Investigator, Jacqueline Lehn Dupont, at the University of
Southern California (USC). The Principal Investigator is interested in learning about caregivers
and their family members or loved ones living with dementia. It is important to answer as openly
and honestly as you can. As indicated in the consent form you just signed, this interview is
anonymous. Only the Principal Investigator, the faculty supervisor, and I, the research assistant,
will have access to your data. No identifying information about you or the person you provide
care for will be shared in any reports. This interview will take approximately 45–60 minutes to
complete. Your participation is entirely voluntary. I hope to audio record this session; your audio
recorded answers will only serve to ensure accurate and complete data. May I have your
permission to audio record this session?
Interview Questions

1. I’d like to start by asking a few questions about you. Tell me how old you are.

2. What is your gender?

3. What is your highest level of education?

4. What is your occupation?

5. Now I’d like to shift the conversation to your loved one. How are you related to
your loved one?

6. Describe your role as a caregiver for your loved one.

7. What is the gender of your loved one?

8. What is the age of your loved one?

9. What is your loved one’s highest level of education?

10. What was your loved one’s occupation?
130

11. How is your loved one doing?

12. Describe the current state of your loved one’s health.
a. Prompt: List any health problems your loved one has.

13. Tell me what daily activities your loved one needs assistance with, if any.

14. Tell me about the current state of your loved one’s memory/cognitive condition.
a. Tell me anything else about your loved one’s condition that you
think is important.

15. Now I’d like to talk about your loved one’s medical care. Was your loved one
diagnosed with dementia by his/her primary care physician?
a. Prompt: If so, describe how the diagnosis was made. (Tell me more about
that/can you give me an example?).
b. Prompt: List any psychiatric, medical, and/or social evaluations that were done.
(Tell me more about that/can you give me an example?).
c. Prompt: List any brain scans that were done. (Tell me more about that/can
you give me an example?).

d. Prompt: List any other evaluations that were conducted to rule out
conditions other than dementia. (Tell me more about that/can you give me
an example?).

e. Prompt: List other diagnostic screening procedures that were carried out that
have not yet been mentioned, if any. (Tell me more about that/can you give me
an example?).
16. Tell me what type of medication the primary care physician has prescribed to your
loved one, if any.
a. Prompt: Tell me what health conditions the medications you just mentioned
were prescribed to treat.

17. Describe how often the primary care physician followed up on your loved one’s
adherence to taking his/her medication for dementia. (Tell me more about that/can
you give me an example?).

18. Describe what dementia care other than medication your loved one
recommended/offered to your and/or your loved one.
a. Prompt: Tell me about any counseling services that were recommended/offered.
(Tell me more about that/can you give me an example?).
b. Prompt: Tell me about any support group services that were
recommended/ offered. (Tell me more about that/can you give me an
example?).

c. Prompt: Tell me about any informational services that were
131

recommended/offered. (Tell me more about that/can you give me an
example?).

19. Okay, now tell me about your loved one’s primary care physician.
a. Prompt: What do you especially like about your loved one’s primary care
physician, if anything. (Tell me more about that/ can you give me an example?)

b. Prompt: What do you especially dislike about your loved one’s primary care
physician, if anything? (Tell me more about that/ can you give me an
example?)
20. How does your loved one’s primary care physician act toward your loved one?
a. Prompt: What do you especially like about how the doctor acts toward your
loved one, if anything? (Tell me more about that/ can you give me an
example?)

b. Prompt: What do you especially dislike about how the doctor acted toward
your loved one, if anything? (Tell me more about that/ can you give me an
example?)

c. Prompt: How knowledgeable does your loved one’s primary care physician
seem?
(Tell me more about that/ can you give me an example?)
21. List any programs that your loved one’s primary care physician referred you to, such
as counseling, support groups, information, and outreach services.
a. Prompt: Tell me anything else you think is important about the programs
that were referred by the primary care physician. (Tell me more about that/
can you give me an example?)

22. Describe how the primary care physician acted during the first visit when signs
of cognitive change, memory loss, or dementia in your loved one were
discussed.
a. Prompt: What did you especially like about how the primary care physician
acted in that first visit, if anything? (Tell me more about that/ can you give me
an example?)

b. Prompt: What did you especially dislike about how the primary care physician
acted in that first visit, if anything? (Tell me more about that/ can you give me
an example?)

23. Describe how the primary care physician informed your loved one of his/her
dementia diagnosis, if at all.
a. What did you especially like about how the primary care informed your loved
one of his/her dementia diagnosis? (Tell me more about that/ can you give me
an example?)

b. What did you especially dislike about how the primary care informed your
132

loved one of his/her dementia diagnosis? (Tell me more about that/ can you give
me an example?)

24. Describe how the primary care physician acted toward your loved one in visits after
the dementia diagnosis.
a. What did you especially like about how the primary care physician acted in
those subsequent visits? (Tell me more about that/ can you give me an example?)
b. What did you especially dislike about how the primary care physician acted in
those subsequent visits? (Tell me more about that/ can you give me an
example?)

25. What medical procedures and/or testing has your loved one’s primary care
physician limited, if any?
a. Prompt: Tell me anything else that you think is important about the medical
procedures and/or testing that your loved one’s primary care physician has
limited.

26. Now I’d like to shift the conversation to the COVID-19 pandemic. Describe how you
feel the media and/or public are reacting to COVID-19 and older adults?

27. Now I’d like to ask you about your experiences as a caregiver for your loved one.
What do you especially like about being a caregiver for your loved one, if anything?
(Tell me more about that/ can you give me an example?)

28. What do you especially dislike about being a caregiver for your loved one, if anything?
(Tell me more about that/ can you give me an example?)
29. Tell me about what information, support, and/or counseling services that you attend,
if any. (Tell me more about that/ can you give me an example?)

30. What do you especially like, if anything, about the way your loved one's primary
care physician acts toward you? (Tell me more about that/ can you give me an
example?)

31. What do you especially like, if anything, about the way your loved one's primary
care physician acts toward you? (Tell me more about that/ can you give me an
example?)

32. Tell me about what interactions, if any, you have had with your loved one’s primary
care physician.
a. Tell me about anything else that you think is important about your
interactions with your loved one’s primary care physician. (Tell me more
about that/ can you give me an example?)

Final Thoughts: Is there anything that you would like to add to our conversation that we have
not covered?
133

Conclusion to the Interview: Thank you for your time, effort, and energy with this interview.
This research interview was for a study about ageism and the quality of medical care for patients
living with dementia. The information you have shared today helps this study, and I greatly
appreciate your time and openness. If there are any points you wish to discuss or have clarified,
email Jacqueline Lehn Dupont, the Principal Investigator, at jlehn@usc.edu.

Abstract (if available)

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Asset Metadata

Creator Dupont, Jacqueline Lehn (author)

Core Title Understanding the quality of geriatric healthcare and family caregiver advocacy for patients with dementia

School Rossier School of Education

Degree Doctor of Education

Degree Program Organizational Change and Leadership (On Line)

Degree Conferral Date 2021-08

Publication Date 07/12/2021

Defense Date 07/12/2021

Publisher University of Southern California (original), University of Southern California. Libraries (digital)

Tag Ageism,ageism and healthcare,Alzheimer's disease,comprehensive geriatric medical care and ageism,COVID-19 and ageism,dementia,durable power of attorney (DPOA),family caregivers,family practice medicine and ageism,geriatric board certified physicians,geriatricans and ageism,OAI-PMH Harvest,patients with dementia,physician based ageism,primary care physicians,senior care and ageism,structural ageism,systemic ageism

Format application/pdf (imt)

Language English

Contributor Electronically uploaded by the author (provenance)

Advisor Tobey, Patrica (committee chair), Carbone, Paula (committee member), Walsh, John (committee member)

Creator Email jlehn@usc.edu

Permanent Link (DOI) https://doi.org/10.25549/usctheses-oUC16255884

Unique identifier UC16255884

Legacy Identifier etd-DupontJacq-9729

Document Type Dissertation

Format application/pdf (imt)

Rights Dupont, Jacqueline Lehn

Type texts

Source University of Southern California (contributing entity), University of Southern California Dissertations and Theses (collection)

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Repository Name University of Southern California Digital Library

Repository Location USC Digital Library, University of Southern California, University Park Campus MC 2810, 3434 South Grand Avenue, 2nd Floor, Los Angeles, California 90089-2810, USA

Repository Email cisadmin@lib.usc.edu