Caregiving Stress Impacts Workplace

Spiral of Silence: Caregiving, Stress and its Impact in the Workplace
A Thesis
Presented to the Faculty in Communication and Leadership Studies
School of Professional Studies
Gonzaga University
Under the Mentorship of Joshua Misner, Ph.D.
Communication and Leadership Studies
In Partial Fulfillment
Of the Requirements for the Degree
Master of Arts in Communication and Leadership Studies
By
Christopher MacLellan
April 2016

CAREGIVING, STRESS AND ITS IMPACT ON THE WORKPLACE
Signature Page

ABSTRACT
Family caregiver stress is reaching epidemic proportions in America. To help identify that
family caregiver stress is an epidemic, this study collected survey data from family caregivers
examining their communication patterns with their employers in relation to their stress level, and
their ability to self-identify as a family caregiver to their employer. Elizabeth Noelle-Neumann’s
“Spiral of Silence Theory” (1974) was used as a basis for this study. While the results of the
study indicate that family caregivers are under a tremendous amount of emotional, physical and
financial stress, conversely, the results also indicated that the majority of family caregivers do
feel comfortable self-identifying at work as a family caregiver. With 100% of the participants
indicating that stress impacts their personal and professional life, the findings in this study will
help guide future research on the epidemic of family caregiver stress in America.

Table of Contents
CHAPTER I: INTRODUCTION.....................................................................................................1
Importance of the Study............................................................................................................... 1
Statement of the Problem............................................................................................................. 1
Definition of Terms Used ............................................................................................................ 2
Organization of Remaining Chapters........................................................................................... 3
CHAPTER II: REVIEW OF THE LITERATURE .........................................................................4
Philosophical Assumptions...........................................................................................................4
Theoretical Basis.......................................................................................................................... 6
The Literature............................................................................................................................... 7
The Aging of America .............................................................................................................7
The Economic Impact of Family Caregiving............................................................................9
Caregiving and Work Place Stress .........................................................................................10
Creating a Favorible Work Place Culture...............................................................................11
Rationale .................................................................................................................................... 14
Research Questions.................................................................................................................... 15
CHAPTER III: SCOPE AND METHODOLOGY ........................................................................17
Methodology.............................................................................................................................. 17
Data Analysis: Behavior-Orientated Survey Research .............................................................. 18
Ethical Considerations ............................................................................................................... 19
CHAPTER IV: THE STUDY........................................................................................................20
Introduction................................................................................................................................ 20
Results of the Study ................................................................................................................... 20
Discussion.................................................................................................................................. 33
CHAPTER V: SUMMARY AND CONCLUSIONS ....................................................................35
Limitations of The Study ........................................................................................................... 35
Further Study or Recommendations .......................................................................................... 35
Conclusions................................................................................................................................ 36
REFERENCES ..............................................................................................................................39
APPENDIX A................................................................................................................................44
APPENDIX B................................................................................................................................55

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Chapter I: Introduction
Importance of the Study
The demographics of America are changing. The US News & World Report reported in
2015 that “by 2030 more than 20 percent of U.S. residents are projected to be age 65 or older”
(Brandon, 2014, para. 2). The United States Census Bureau (2013) indicates that every day in
America, 10,000 people turn 65. The escalating group of older Americans is changing the
landscape of how society cares for an aging population. However, the myth is that aging only
effects those who are getting older.
As the aging population continues to increase, the need for family caregivers will
increase as well. Often unnoticed, family caregivers go about their daily routine with their
attention preoccupied with their responsibilities at home and at work. Faced with the mental and
physical challenges of being a working family caregiver, working family caregivers struggle to
find balance between caregiving, work and family responsibilities.
Statement of the Problem
When work requirements conflict with the daily responsibilities of caregiving, the
working family caregiver has to choose between caring for a sick relative or earning an income.
The financial impacts of caregiving are not limited to the caregiver; the employer is also
affected. AARP Public Policy Institute reported in 2007;
that the economic value of family caregiving was estimated at $375 billion, which
exceeds the total amount of 2007 Medicaid expenditures ($311 billion) and approaches
the total expenditures in Medicare ($432 billion). U.S. businesses lose up to an estimate

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$33.6 billion per year in lost productivity from full-time working caregivers” (AARP,
2008, p.1).
Caregivers in the U.S. have inadequate resources in the workplace to support their caregiving
responsibilities. While some working family caregivers have the option of using paid time off
and flex time offered by individual employers, government policies to this date, do not support
paid leave for working family caregivers.
Assessing the long-term health and financial impact of stress family caregivers face is
critical, especially for those family caregivers who have had to cut back their hours at work, or
who have left the work force altogether because of their caregiving responsibilities. As baby
boomers continue to age and move from their careers toward retirement, the demand for family
caregivers will dramatically increase. Caregivers in the U.S. have inadequate resources in the
workplace to support their caregiving responsibilities and there are no adequate systems in place
to track whether family caregiving stress is at epidemic levels.
Definition of Terms Used
Caree: Caree is an industry term used to describe the person receiving care. (Caree is a
word developed by members of a popular online caregiving site, Caregiving.com,
through the means of Computer Medicated Communication.)
FMLA: Family and Medical Leave Act of 1993
Sandwich Generation: A term used to describe people who care for their aging parents
while supporting raising their own children.

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Working Family Caregiver: For the purpose of this study, “Working Family Caregiver” is
defined as unpaid, caring for a family member (spouse, partner, parent, grandparent,
sibling or child), working full or part time.
Organization of Remaining Chapters
This thesis is arranged in five chapters. Chapter Two reviews the literature in the field of
caregiving and is the basis for the research questions of this work. Chapter Three describes the
scope and methodology utilized for the study and sets forth the philosophical and theoretical
frameworks from which this thesis arises. Chapter Four focus is on the survey results from the
study. The analysis of results found in Chapter Four will provided the needed information for
the summary and conclusion of this study, found in Chapter Five.

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Chapter II: Review of the Literature
Philosophical Assumptions
To be entrusted with the care of another human being can be one of the greatest honors
bestowed on another human being. Caregiving takes on meaning that is beyond reproach.
Expecting parents have nine months to prepare for the birth of a new child. Doctors and nurses
undergo years of rigorous training for the work that they do. However, family caregivers find
themselves suddenly thrust into a role they did not choose, or prepare for, when called on to care
for a parent, partner, spouse or loved one after an untimely diagnosis or an unforeseen accident.
Family caregivers immediately find themselves in the role of an advocate, balancing their
work and home life, while constantly advocating for their caree. For the family caregiver, being
an advocate is about dialogue ―dialogue with their caree, dialogue with professionals on the
caree team, while advocating for the health and well-being of their caree. German Jewish
philosopher Martin Buber’s ethical approach focused on genuine dialogue. Kramer and Gawlick
(2003) wrote of Buber; “engaging in genuine dialogue enhances the possibilities for meaningful
community and for realizing unique wholeness” (p. 178). For the family caregiver, advocacy
and dialogue are about relationship building, with communication as the building block. Often
in advocacy, moral codes have to be thrown aside when a family caregiver is advocating for the
well-being of their caree. Through advocacy, family caregivers are at the forefront of dialogue,
but without active communication, there is no dialogue. For the family caregiver, advocacy
creates dialogue.

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Buber’s philosophy of dialogue is well-suited for caregivers as he studies relationships
between self and others. Caregiving is all about dialogue and relationships, with the most
important relationship being between the caregiver and caree. Buber’s I-IT and I-Thou theory
depends on how one, the I, self-interprets the other. For instance, caregivers (self) find
themselves often in both the I-It and I-Thou relationships with their caree. Of Buber, Kaufmann
(1970) explained; “The world as experience belongs to the basic word I-It. The basic word I-
You establishes the world of relation” (p. 56). This relationship is often determined by the level
of care provided by the caregiver. In the I-It relationship, the caregiver (I) is the lead in the care
for their caree. In the I-It relationship, the caregiver performs all of the tasks for the caree.
When the caregiver is in the I-Thou relationship, the caregiver recognizes their caree is capable
of completing tasks on their own with limited assistance by the (I) caregiver.
For instance, in the I-It relationship, the caregiver is active with their caree in completing
their activities of daily living, bathing, toileting, hygiene, clothing. Where in an I-Thou
relationship, the caregiver is more passive as the caree would be able to perform the activities of
daily living with little or no help from the caregiver. Dialogue between the caregiver and caree
is critical in determining the I-It and I-Thou relationship between the participants in this
relationship.

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Theoretical Basis
This study proposes that Elizabeth Noelle-Neumann’s (1974) Spiral of Silence theory
plays a critical role in caregivers not self-identifying at work. Noelle-Neumann’s theory
suggests that when people fear separation or isolation around them (for the family caregiver, this
would be the work environment) and fear they are in the minority, they keep their thoughts and
opinions to themselves. Scheufele and Moy (2002) wrote: “The spiral of silence theory rests on
the assumption that individuals constantly scan their environment in order to assess the climate
of opinion, i.e. the aggregate distribution of opinions on a given issue” (p. 7). By not self-
identifying at work, family caregivers become self-conscious and unaware of their own
environment. “Self-identifying at work can be beneficial to the family caregiver: with 43.5
million caregivers in the country, don’t you think there is a good chance someone at work is
going to be in the same boat you are in” (MacLellan, 2015, p. 82).
As life expectancy increases, and the cost of medical care dramatically rises, the burden
of caring for an aging population will rest on the family caregiver. Family caregivers are often
faced with juggling their work related responsibilities while caring for a sick or infirm family
member. Family caregivers touch every industry, from a small local business to global fortune
five-hundred corporations. Family caregivers are everywhere, in every boardroom, in blue and
white-collar workers. According to AARP Public Policy Institute study of caregivers in the
United States (2012):
 61% of caregivers age 50+ work: 50% work full-time, 11% work part-time.

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 42% of U.S. employees have cared for an older relative or friend in the last five
years, and 49% of the workforce expects to provide care in the next five years.
 20% of all female workers and 16% of all male workers in the United States are
family caregivers.
 22%―almost a quarter―of caregivers in the workplace are 45 to 64 years old.
As AARP’s study indicates, almost a quarter of caregivers in the workplace are 45 to 64
years old. Many of these caregivers find themselves in the midst of the “Sandwich Generation”
a term used to describe the middle-aged generation who have elderly parents and dependent
children (Pierret, 2006, p.4). The Sandwich Generation is not gender specific, men and women
are both members. A recent Pews study (2013) conducted by Kim Parker and Eileen Patten
reported;
Nearly half (47%) of adults in their 40s and 50s have a parent age 65 or older and are
either raising a young child or financially supporting a grown child (age 18 or older).
And about one-in-seven middle-aged adults (15%) is providing financial support to both
an aging parent and a child (Parker & Patten, 2013, para. 1).
For the family caregiver, balancing work, life and caregiving duties while at the height of
their earning capacity and professional career, leaves the working family caregiver with little
time to attend to their own needs, let alone focus, and produce at work at high capacity.
The Literature
The Aging of America. The Administration on Aging (2013) estimates that one in eight
Americans is 65 years or older. Data compiled by the Social Security Administration (2015)

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indicates that a man reaching age 65 today can expect to live, on average, to age 84.3. A woman
turning age 65 today can expect to live to age 86.6, and the number of seniors in America is
expected to reach a population of 72 million by the year 2030. As life expectancy increases, and
the cost of medical care dramatically rises, the burden of care for an aging population will rest on
the family caregiver.
According to the National Alliance for Family Caregivers (2015), there are 43.5 million
working family caregivers in the United States today. Family caregivers are defined by the
National Alliance of Family Caregivers as family members, friends, neighbors, or other
individuals who conduct the majority of a patient’s home care needs without financial assistance.
The “average” U.S. caregiver is a 49-year-old woman who works outside the home and spends
nearly 20 hours per week providing unpaid care to her mother for nearly five years. Almost two-
thirds of family caregivers are female (65%). More than eight in ten are caring for a relative or
friend age 50 or older (NAC, 2009).
Often unnoticed and underappreciated, family caregivers provide tremendous support to
the health care system in America. In 2015, Denise Brown from Caregiving.com wrote;
Family caregivers dispense medications, monitor health, provide activities, prepare
special meals, keep health care professionals up-to-date, research options, advocate for
the best possible care, make difficult decisions, shop for the best-priced supplies, provide
rides, first notice health care problems, often suggest the solutions to health care
professionals, help with bathing and toileting, change bandages, comfort and console.
The family caregiver is a major part of the health care system, unpaid, who often goes

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unrecognized by the health care system they support by their unconditional care (Brown,
2015. para 3).
The economic impact of family caregiving. Time spent by family caregivers caring for
a family member or friend represents time lost at work. In 2011 the AARP Public Policy
Institute estimated the economic value of family caregiving at $450 billion as of 2009. This is
based on 42.1 million caregivers age 18 or older providing an average of 18.4 hours of care per
week to care recipients age 18 or older, at an average value of $11.16 per hour (AARP, 2011, p.
1). By providing day to day in home care, family caregivers are the backbone of the health care
system in America. In 2011 Cynkar and Mendes stated;
More than one in six Americans working full or part time report assisting with the care of
an elderly or disabled family member, relative, or friend and caregivers working at least
15 hours per week said caregiving significantly affected their work life” (para. 1).
The financial aspect of family caregiving has an impact on social security, pension,
federal, state and local taxes, too. “As most caregivers (59%) are working either full- or part-
time, caregiving may add an additional burden, and many caregivers have to contend with lost
time at work or career disruption along with the financial burdens of the patient's treatment”
(Lutgendorf & Landenslager, 2009, p. 2894). “Ten million caregivers over 50 who care for their
parents lose an estimated $3 trillion in lost wages, pensions, retirement funds and benefits”
(Lutgendorf et el., 2009, p. 2895). According to a joint study by the National Alliance for
Caregiving and the Metlife Mature Market Institute in 2009;

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Social Security and private pension losses due to caregiving could range from $283,716
for men to $324,044 for women, or $303,880 on average for a typical caregiver. When
this $303,880 amount is multiplied by the 9.7 million people age 50+ caring for their
parents, the amount lost is $2,947,636,000.000, or nearly $3 trillion (Metlife, 2011, p.
14).
Without the willingness of family caregivers to be an active part of health care in
America, the financial impact would have a devastating effect on the American economy. For
example, according to the American Hospital Association in 2012 there were 5,723 hospitals
with 920,829 hospital beds in the United States (AHA Annual Survey, 2012). The Henry J.
Kaiser Family Foundation, indicates that there were 834,769 physicians in the United States in
2012 (Kaiser, 2012). Mindful of the National Alliance for Caregivers (2015) estimate of 43.5
million individuals who care for a family member or friend in the home, without a family
caregiver doing the “heavy lifting” of the day-to-day care, hospitals, physicians, nurses and home
health care agencies would be overwhelmed with patient care. The emotional and financial
stress of caregiving encompasses the American culture, from coast to coast, and at every corner
of our neighborhoods.
Caregiving and work place stress is an untold epidemic. According to research
conducted by Savanah Fox in 2013 of the Pew Research Center, “about 39% of U. S. adults–up
from 30% in 2010–care for an adult or child with significant health issues” (Fox, 2013, para. 16).
With an estimated 43.5 million family caregivers in the United States today, if only 10% of those
family caregivers feel stressed, in reality there would be over 4.3 million stressed out, unpaid and

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unsupported family caregivers providing in-home health care in America. Many of those family
caregivers live in fear of losing their means of income, or have no income at all due to their
family caregiving responsibilities. A recent Metlife study estimates the impact on lost wages and
pension benefits from $303,260 to $659,139 over caregiver’s retirement years (MET, 2011, p.
12). The stress on family caregivers takes on many shapes, forms, and dollar signs. “Workplace
stress is the harmful and emotional response that occurs when there is a poor match between job
demands and capabilities, resources, or the needs of the worker” (Gilstrap, 2015, para. 1).
By providing day-to-day care, family caregivers are health care providers, the ones who
are doing the profound lifting in the American health care system. Yet the health care system
has showed no ability to track caregivers’ stress. More importantly, in the United States, we
have no national policy or program to help the Centers for Disease control track these vital
statistics. Yet the epidemic of caregiver stress does not appear to be major topic of concern for
the CDC. “Public health is the science and art of preventing disease, prolonging life, and
promoting physical and mental health” (Carter, 2008, para.1). The Centers for Disease Control
(CDC) tracks flu outbreaks and is consistently in the lead of tracking the latest pandemics, yet
the there is no formal systems by the CDC to track the impact of stress on family caregivers in
America.
Creating a favorable work place culture. Caregivers in the U. S. workplace often have
inadequate resources to support their caregiving responsibilities.
While about two-thirds have paid or unpaid vacation time they can use for caregiving
and more than half can use paid or unpaid sick leave for caregiving. Fewer than half of

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caregivers, for example, can use flex time to make up lost work time or employee
assistance programs to discuss emotional distress (Whitters, 2011, para. 6).
However, the problem for caregiving employees goes deeper than just the ability to use vacation
or sick time to care for a spouse, partner or family member. AARP’s national family caregiving
expert Amy Goyer (2015), wrote:
Caregivers are not a protected group under the federal Equal Employment
Opportunity status: in fact, no laws specifically protect working caregivers.
While FMLA (Family Medical Leave Act) will provide some (unpaid)
relief for caregivers who are caring for a family member, protection under the
law is limited. State and local laws protecting caregivers vary, as will personnel
policies of the employer (p. 88).
Assessing the long-term financial impact of caregiving for the caregivers is critical,
especially for those who have shortened their working careers to take on the role as a family
caregiver. The financial impacts of caregiving are not limited to the caregiver; the employer is
also affected. Creating an awareness of the critical issues family caregivers face on a daily basis
demonstrates to employers that their bottom line is secure and return on investment is enhanced.
Creating a positive work place culture which fosters open communication between
employees, coworkers and employers helps eliminate fear and defuse employee isolation.
Conrad and Poole (2005) defined communication as, “a process through which people, acting
together, create, sustain, and manage meaning through the use of verbal signs and symbols
within a particular context” (p. 38). Bisel and Arterburn (2012) took on the difficult task of

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cultivating an understanding of why employees choose to be silent in the work place by using the
theory of organizational climate to help understand employee silence. Within any organization,
there is a hierarchical structure. A particular ranking in the hierarchical structure of an
organization should not be the cause of an employee feeling fearful of holding back critical
information for those in authority who most need it. Employees consciously hold back critical
information to those who most definitely need it because of fear: fear of losing one’s job, fear of
losing pay, fear of the supervisor, fear of hurting career opportunity. Fear is a negative
component in life: caregivers experience fear on a daily basis, fear at home, fear at work, fear of
losing their job, fear of being left alone after caregiving ends.
Working family caregivers, in fear of losing their job, often do not self-identify at work.
Creating a workplace culture that promotes honest dialogue and communication between the
caregiver employee and the employer is essential for both parties. Judy Ryan from LifeWork
Systems wrote:
The job of a good leader is to help each person become able to respond
(responsible) in their life and work; to help them by transferring ownership to
them in such a manner that they discover their own purpose and how to live from
it. Then they can do the same for others (Ryan, 2015, p. 4).
When the culture in the workplace is healthy, the values that build trust are plentiful, which in
turn has a positive impact on the employer’s return on investment. “Employers can be of
tremendous help to caregivers by simply acknowledging the caregiving phenomena and creating

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policies that are advantageous to everyone involved in the process” (MacLellan, et el., 2015, p.
80).
Rationale
Caregivers are resilient, yet caregivers are human, too. Caregiving touches every
industry with an untold effect on the mental, physical and financial health of the caregiver. With
lost wages totaling in the millions of dollars, caregivers face an uphill battle to overcome fatigue,
burnout and stress. While the Centers for Disease Control tracks many health care concerns that
directly affect the population of not only the United States, but the entire world, the CDC falls
short in tracking the effects stress has on today’s family caregiver. As a family caregiver, one
immediately becomes a doctor, nurse and social worker―all at once and often without any
formal training. However, the failure of the CDC to adequately track the effects on the health
and well-being of the estimated 43.5 million family caregivers leaves an entire segment of
society left out of the conversation. This study demonstrates that family caregivers are
experiencing stress at epidemic levels with no systems in place to track this proposed epidemic.
Stressed out, overworked family caregivers who fail to self-identify at work are at risk of
losing not only their job and source of income, but also their own personal health. “Caregiving
often is conceptualized using a stress-coping model in which the care recipients’ health and
functional abilities are presumed to decline over time, a process that is stressful for both the
caregiver and care recipients” (Schulz & Martine, 2004, p. 242).
The reality is that most employers are more apt to work with an employee when they
know ahead of time about the family caregiving issues facing the employee. Recent trends seem

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to indicate that employers are starting to recognized the special needs of working family
caregivers. Licensed Clinical Social Worker and Vice-President of Senior Care Services at
Care.com, Jody Gastfriend, wrote in the July 2014 issue of the Harvard Business Review,
“Employees who work at companies that offer elder benefits are more apt to reach out for help,
and as a result, are more likely to stay on the job” (Gastfriend, 2014, para. 11.). Employers who
understand the benefits of treating their employees as a trusted resource, help create a positive
workplace culture. “Caregivers are usually the most dedicated and responsible people to have as
your employee” (MacLellan, et el., 2015, p. 36). Servant Leadership is the conduit to aligning
goals, strategies and processes with the purpose, values and vision of our place of work, our
home life and the greater community.
The Servant-Leader understands how to organize individuals into teams, teams
into communities, communities into culture, so that they all help individuals
consistently think and act collaboratively – and on behalf of something greater
that themselves – requires a shared belief in the power of team over individual
effort, in an atmosphere where people are willing to teach to and learn from each
other (Greenleaf, 2002, p. 82).
ResearchQuestions
Family caregiver stress is an untold epidemic with innumerable health and financial
implications to the employed family caregiver. Reasons why family caregiver stress is not
recognized in American society as an epidemic remains unclear. Does Elizabeth Noelle-
Neumann’s Spiral of Silence theory play a role in why family caregiver stress is not formally

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recognized as an epidemic? Through descriptive research methods of working family caregivers,
data gathered through this research will explore why working family caregivers live in fear of
losing their source of income and investigated whether working family caregivers’ stress is at
epidemic levels in America.

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Chapter III: Scope and Methodology
Scope of The Study
The study begins by soliciting information from family caregivers and employers from
across the nation in order to gauge the effects of family caregiver stress at home and in the work
place. Goyer (2015) wrote, “compared to our non-caregiving colleagues, we (family caregivers)
are less rested, have elevated daily and chronic pain, and have more health issues, such as high
blood pressure” (p. 77). This study seeks to analyze the role of family caregivers and the impact
of stress in the work place and why family caregivers struggle to self-identify at work.
The participants represent a broad spectrum of family caregivers and employers from
across the country who were solicited to participate in the study through the use of social media
including Facebook, Twitter, WordPress Blogs, and webmail. Using computer mediated
communication to engage participants, this study collaborated with a popular online caregiving
community, Caregiving.com, to gather data on the epidemic of caregiving stress in the
workplace. With over 1,400 active members and 24,000 social media followers, the author of
nine books, Denise Brown is the owner and moderator of Caregiving.com, and is recognized as a
national expert in the field of caregiving.
Methodology
Through the online survey tool, Survey Monkey, data was gathered from a segment of the
estimated 42 million family caregivers in the United States. The method of the survey research
falls into the category of descriptive and explanatory research. The primary goal of this thesis is
to study the impact of stress (both emotional and financial) on the family caregiver and why

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family caregivers do not self-identify at work. In order to appropriately understand the impact of
caregivers’ stress in the work place, it is vitally important to understand family caregiving
phenomena from the perspective of not only family caregivers, but from the employers as well.
Caregivers, like any other segment of society, have to feel comfortable that the information they
are providing is secure, especially when the information centers on sensitive issues that can
affect their ability to earn an income.
Data Analysis: Behavior-Orientated Survey Research
The working family caregiving survey is broken down into two sections, family
caregivers and employers. Participation in the survey is voluntary and anonymous. The survey
tracked gender demographics, critical in mirroring national statistics in relation to number of
female vs male caregivers. Additionally, this survey focuses on the actions and reactions of
family caregivers and employers to work place stress, and its cause and effect. Participants are
able to access the survey in a secure, online electronic format. All results are password
protected.
With limited time and already experiencing the emotional, physical and financial stress of
being a working family caregivers, caregivers are comfortable in front of a computer, searching
for information that will assist them in their daily caregiving chores. The survey has been
developed with the needs of the family caregiver and employer in mind and consisted of 28
questions using a Likert scale. According to Rubin (1986) “people or behavior-oriented research
focuses on actions and reactions of people” (p. 218). Information gathered from both working

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family caregivers and employers through the means of this survey will be essential to future
research on the effects of family caregiver stress in the work place.
To understand the variable of caregivers’ stress at home and in the work place, including
the impact of the Spiral of Silence theory as to why family caregivers do not self-identify at
work, data gathered from this survey was analyzed through the use of descriptive statistics.
Descriptive statistics involves studying and organization the results from the survey in order to
learn what information was gathered from the data. Since a large number of participants are
expected to take the survey, descriptive statistics help condense large amounts of data gathered
from the survey in a simple format that is informative to the reader.
Ethical Considerations
This survey is 100% anonymous and is conducted solely online. No one will be able to
identify the participants, nor will anyone be able to identify a family caregiver employee or
employer. No one will be able to identify anyone who participated in this study. Information
provided in this survey questionnaire will not, in any way influence your present or future
employment with a company or reveal an individual’s own personal caregiving experience.
Participation in this survey is voluntary.

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Chapter IV: The Study
Introduction
For the purpose of this study, participants are working family caregivers and employers,
spread out across the United States. Descriptive data obtained through this study was gathered
using the online survey tool, Survey Monkey. The survey instrument was constructed in two
separated surveys for both the working family caregiver and the employer. Mindful of
communication trends between the employer and the working family caregiver, survey questions
were written in consideration of the impact of family caregiver stress at home and in the
workplace.
Participant were encouraged to answer all questions on the survey; however, some
participants, as their prerogative, choose not to answer questions that were either uncomfortable,
or did not fit their particular family caregiving experience. This study was in partnership with a
popular on-line membership caregiving site, caregiving.com; data was gathered over a four-week
period starting on February 22 and ending on March 22, of 2016; 104 family caregivers
participated in the survey.
Results of the Study
Of the 104 participants in the working family caregiver survey, 72% were female and
28% were male (this number is consistent with national caregiving statistics published by the
National Alliance for Caregivers as indicated earlier in this study). Over 25% of the participants
indicated that they have been a family caregiver for more than 10 years.

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Figure 1: Survey question #1 illustrates that the majority of the family caregivers in this
survey have at least two or more years as a working family caregiver.

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Figure 2: Survey question #4 illustrates that working family caregivers are loyal to their
employers, with over half of the respondents indicating that they have been employed by
the same employer for at least 10 years or more.

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Figure 3: Survey question #8 illustrates that employers offer a variety of benefits which
meets the needs of working family caregivers who participated in this survey. Employers
help create a positive workplace culture when they offer a variety of benefits that meets
the needs of their employees.

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Figure 4: Survey question #9 illustrates that paid leave is an important benefit for
employers to provide to their employees, this response is consistent with national
caregiving trends. According to the National Alliance for Caregiving (2016) there are
currently 12 pieces of federal legislation either at the committee level or on the floor of
congress waiting for passage. While the proposed legislation varies, all pending
legislation is geared toward some form of tax credit or financial consideration for family
caregivers. Currently, the Family Medical Leave Act (FMLA) does not provided paid
leave for employees.

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Figure 5: Survey question #10 illustrates that employees feel that benefits are fairly
available to every employee, which helps create a positive work place culture.

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Figure 6: Survey question #11 illustrates that employers are not proactive in providing
information to their employees on the topic of family caregiving.

27
Figure 7: Survey question #13 illustrates that over 70% of the respondents indicate that
they have discussed their family caregiving situation at work.

28
Figure 8: Survey question #14 illustrates that of those respondents who did not self-
identify at work as a family caregiver, fear that they would lose their job or that self-
identifying would not be of any assistance to their employment or family caregiving
situation.

29
Figure 9: Survey question #15 illustrates that those family caregivers who did self-
identify at work, indicate that they feel better about their caregiving situation and receive
more support from their employer and coworkers. Communicating with another person
helps eliminates the fear of isolation, critical in combating the Spiral of Silence.

30
Figure 10: Survey question #17 illustrates that caregiving has daily impact on this
workplace for the working family caregiver.

31
Figure 11: Survey question #21 illustrates that the amount of workplace stress varies
amongst family caregivers.

32
Figure 12: Survey question #22 illustrates that the responsibility of being a working
family caregiver has an impact on the caregiver’s productivity at work.

33
Discussion
Results of the study indicate that working family caregivers are under a tremendous about
of stress both at home and at work. Ninety-five percent of the repondents indicated that their
work-related stress was a direct reflection to their caregiving duties. Over 30% of the repondents
indicated that their caregiving responsbilities affect their productivity at work on a daily basis,
with just 5% of the repondants indicating that their caregiving duties have no impact their
productity. Over 50% of the working family caregivers indicate that they have either quit their
job, or have thought about quiting their job, because of their caregiving responsbilities.
Results of the survey are somewhat inconclusive as it relates to the Spiral of Silence
theory affecting the family caregivers willingness to self-identify at work. Seventy-five percent
indicated that they have self-identified at work as a family caregiver to their manager, human
resource personnel or a co-worker and received some form of support after self-identifying as a
family caregiver. However, 25% of family caregivers who indicated that they did not self-
identify at work, designated that they were fearful of losing their job if their employer learned of
their family caregiving responsibilites at home. With 25% of the respondents indicating that
they are fearful about self-identifying at work, the Spiral of Silence may play a role in their
decision not to self-identify at work as a family caregiver.
While reviewing the survey data, it is imperative to keep in mind the hypothesis posed to
this study, that is, family caregiver stress is an untold epidemic with innumerable health and
financial implication to the employed family caregiver. Family caregivers have indicated
through the data gathered in this study that they are experiencing high leves of stress at work and

34
at home. Family caregivers report that they use vacation and sick-time in order to meet their
caregiving responsbilities at home, adding to their already high stress level. With little or no
personal time off to tend to their own needs, over 40% of family caregivers in this survey
indicate that they contemplate quitting their job and/or reducing their workload. Without the
benefits of paid leave, family caregivers struggle to meet the demands of their responsibilites at
work and at home. This is a viciouis cycle that can only be solved by honest dialogue between
the working family caregiver and their employer.

35
Chapter V: Summary and Conclusions
Limitations of The Study
This study falls short on gathering credible data from employers as the survey received
only four employer responses. With one-third of the respondents in this study indicating that
family caregiving duties have a direct effect on their productivity at work, solid data from the
employer is needed in order to grasp the financial impact family caregiving has on the employer.
Information gathered from employers will be crititcal in developing stratigies that will help
create a positive workplace culture where all employees feel comfortable self-identifying as a
family caregiver.
Further Study or Recommendations
Today’s aging crisis is similar to the child care crisis employees and employers faced in
the mid 1970’s. In 1978, The Pregnancy Discrimination ACT (PDA) passed and was the first
federal enacted to protect pregnant workers’ employment rights (U. S. Department of Labor,
2016). In 1985, the first draft of The Family and Medical Leave Act (FLMA) was presented to
congress, however, the law was not enacted until 1993 (U. S. Department of Labor, 2016). As
Lenhoff and Bell wrote in their case study on the Family and Medical Leave Act (n.d.); “The fact
remains, however, that FMLA is only a first step toward the kind of comprehensive work-policy
needed in the United States, and its effectiveness is limited by the number of compromises (p. 2).
With an aging society upon us, working family caregivers and their employers will be searching
for solutions to help combat the challenges working family caregivers faced in the 1970’s.

36
For employers to full grasp the impact working family caregivers have in the workplace,
further study is needed in relation to the cost employers incur when an employee is terminated or
leaves their employment due to their family caregiving responsibilities. This study would be
inclusive of the cost to advertise, hire, train and staff the new employee. Additionally, this study
would focus on the time-line for the new employee to learn the employer’s products, gain the
trust of the employer’s customers, along with the time it takes for the new employee to show a
profit for the employer. My speculation believes that the cost incurred by an employer to hire
and train a new employee, far surpasses the cost an employer would incur if FLMA allowed
working family caregivers to take up to twelve weeks of paid leave.
Conclusions
In spite of the emotional, physical and financial challenges family caregivers face on a
daily basis, family caregivers who self-identified at work do find some form of relief for their
stress. Data gathered through this survey indicates that family caregivers who self-identify at
work, found some form of support from a manager or a coworker. Overwhelmingly, 40% of the
respondents indicated that they felt better talking openly about their caregiving responsibilities,
and over 35% of the responders indicated that they now have a means of support after self-
identifying at work. These results directly support Martin Buber ethical approach to open
dialogue. Buber was a proponent for open, ethical dialogue. For the family caregivers who self-
identified at work, open dialogue seemed to be their path to receive relief from the stress and
strain of being a working family caregiver. Buber’s ethical approach to open dialogue applies to
any form of communication between people. Speculation persists as to why 75% of the

37
respondents felt comfortable in self-identifying at work as compared to the 25% who did not feel
comfortable. Of the 25% who did not self-identify at work as a family caregiver, over 19% felt
that they would lose their job, over 15% felt that they would miss out on a promotion and over
50% indicate that they did not think their manager would understand, or that self-identifying at
work would not be of any help.
Ninety-seven percent of the respondents indicate that their work-related stress was
attributed to their family caregiving responsibilities. This statistic compares directly to Cynkar
and Mendes (2015) who reported that caregiving significantly affected employees who worked
more than 15 hours per week. Furthermore, an astounding 30% of the respondents indicated that
caregiving responsibilities have a daily effect on their productivity at work. Over 50% of the
respondents have been in a family caregiver for two years or more, 25% have been a family
caregiver for 10 year or more. Comparably, almost 40% of the respondents indicate that they
have been with their employer for 20 or more years.
Working family caregivers are asked to balance their career and caregiving
responsibilities on a daily basis. The demand, and stress on the working family caregiver is two-
fold, home and work. The National Institute of Mental Health (NIMH) defines stress as “the
brain’s response to any demand” (NIMH, n.d., para. 2). The results of this study indicate that
working family caregivers fear financial loss, and experience high levels of stress which places
undue strain on the working family caregiver. While Martin Buber’s theory of open dialogue
proved beneficial to the 75% of working family caregivers who self-identified at work; 25% or
rather, one-quarter of the respondents, failed to self-identify. This suggests that Elizabeth

38
Noelle-Neumann’s Spiral of Silence theory was potentially prevalent in the 25% of those
working family caregivers who did not feel comfortable in self-identifying at work. In order to
create a work place suitable for all, and to demonstrate that caregiving stress is at epidemic
levels, employees need to feel confident that they will be supported by their employers when
they self-identify as a family caregiver in order not to fall into the trap of the Spiral of Silence.

39
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44
Appendix A
2016 Survey of Full-Time Working Family Caregivers
You are being invited to participate in CareGiving.com's Second Annual Working Family
Caregiver Survey. We are sharing our survey results with Christopher MacLellan, an MA
candidate at Gonzaga University in Spokane, Wash. Through the survey, we hope to better
understand the impact of caregiving stress in the work place. Current or former family caregivers
who are or have been employed full-or part-time while helping or caring for a family member or
friend are invited to take this survey.
There are no known risks if you decide to participate in this research study, nor are there
any costs for participating in the study. The information you provide will help to better
understand caregiving stress and its impact on family caregivers’ life. The information collected
may not benefit you directly, but what we learn from this study should provide general benefits
to family caregivers, employers and researchers. Statistics gained from this survey will
(hopefully) prove that family caregiver stress is an epidemic in our communities, including our
work places. The results will be shared with the Centers for Disease Control and Prevention.
identify you, nor will anyone be able to determine which company you work for. No one will
know whether you participated in this study. Nothing you say on the questionnaire will in any
way influence your present or future employment with your company or reveal your own
personal caregiving experience.

45
Your participation in this study is voluntary. If you choose to participate, please continue
to question 1. If you choose not to participate in this survey, kindly close your browser window.
Results of the survey are password protected.
If you have any questions or concerns about completing the questionnaire or about being
in this study, you may contact Denise at 773-343-6341 or denise@caregiving.com or Chris at
(954) 481-1222 or at cmaclellan@zagmail.gonzaga.edu.
2016 Survey of Full-Time Working Family Caregivers
1. How long have you been caring for a family member or friend?
More than 10 years.
Between 5 and 9 years.
Between six months and 2 years.
Less than six months.
My caregiving experience has ended.
2. How many hours per week do you work?
3. How would you describe the size of your company?
More than 10,000 employees.
Between 5,000 and 10,000 employees.
Between 500 and 5,000 employees.
Between 50 and 500 employees.
50 or Less Employees.

46
4. How long have you been employed with your current company?
More than 20 years.
Between 10 and 20 years
Less than 1 year.
5. Which of the following best describe your job function?
Accounting
Administrative
Advertising / Marketing
Analyst
Art/Creative/Design
Business Development
Consulting
Customer Service
Distribution
Health Care Provider (Doctor)
Health Care Provider (Nurse)
Health Care Provider (Dentist, Orthodontist, Endodontist)
Health Care Provider (Dental Hygienist)

47
Health Care Provider (Other)
Education
Engineering
Finance
General Business
Human Resources
Information Technology
Legal
Management
Manufacturing
Production
Product Management
Public Relations
Purchasing
Quality Assurance
Research
Sales
Science
Strategy/Planning
Supply Chain
Training

48
6. Do you also manage employees?
Yes.
No.
7. If you answered Yes to Question 6, how many employees do you manage?
8. Which benefits are available to you?
Unpaid leave (such as Family Medical Leave Act)
Paid leave
Employee Assistance Program
Work/Life benefit
Flexible work schedule
Job sharing
Working from home
I'm not sure
None of the above
Other (please specify)
9. Which benefits would you like to be available to you?
Unpaid leave (such as Family Medical Leave Act)
Paid leave
Work/Life benefit

49
Job sharing
Working from home
10. Do you feel benefits are fairly available to all, regardless of length of time with the
company and job title and responsibilities?
Yes.
No.
11. Has your employer included information about benefits and resources which can help
working family caregivers in any company communication, such as an employee
newsletter, benefits announcements, wellness or benefits fairs, the company intranet?
Yes.
No.
Not that I know of.
12. Within the past year, how much time off from work have you taken because of your
caree's appointments, hospitalizations and other caregiving-related situations?
More than four weeks.
Between three and four weeks.
Between two and three weeks.
Between one and two weeks.

50
Five days.
Four days.
Three days.
Two days.
One day.
13. With whom at work have you discussed your caregiving situation?
My manager.
Human Resources.
My co-workers.
No one.
14. If you answered 'No one" in Question 13, why not?
I don't think my manager will understand.
I don't think it will help my situation.
I think I will be passed over for a promotion.
I think my manager will reduce my work responsibilities.
I think I will miss out on future opportunities.
I think I will lose my job.

51
15. If you spoke with someone at work about your caregiving responsibilities, what was
the result?
I learned about resources my employer offers that can help me.
I felt better talking openly about my situation.
I now have support from others at work.
I connected with other co-workers in a caregiving situation.
I have more flexibility with my schedule.
It made the situation worse for me.
Nothing changed.
16. How much of your paid time off (sick days, vacation time) do you use for caregiving
responsibilities and tasks?
All of it.
Most of it.
Some of it.
None of it.
17. Which part of your work day is most affected by your caregiving responsibilities?
The morning because I'm trying to arrive to work on time.
My lunch because I'm trying to run errands and get back to work on time.
The end of my day because I'm trying to leave on time so I get home.

52
All of the above.
18. Within the past year, have you adjusted the number of hours you work because of
your caregiving responsibilities?
No.
Yes, I work fewer hours but still work a full-time job.
Yes, I went from a full-time position to a part-time one.
19. Do you know of any co-workers who also care for a family member or friend?
Yes.
No.
20. If you answered "yes" to Question 19, how many co-workers do you know who care
for a family member or friend?
21. What percentage of your work-related stress is because of your caregiving
responsibilities?
All of it.
About 90%.
About 80%.
About 70%.
About 60%.
About 50%.

53
About 40%.
About 30%.
About 20%.
About 10%.
None of it.
22. How often does your caregiving responsibility affect your productivity?
Daily.
A few times a week.
Weekly.
A few times a month.
Monthly.
Once in a while.
It all depends on how well my caree is doing.
Never.
23. How well does your company understand the needs of working family caregivers?
Never.
Rarely.
Sometimes.
Often.

54
Always.
24. Do you struggle with the question, Should I quit my job because of my caregiving
responsibilities?
Yes.
Sometimes.
No.
25. Please select your gender.
Male.
Female.
26. Please select your income level.
No income.
Less than $12,000 per year
Between $12,001 and $24,000 per year
More than $75,000 per year
Prefer not to answer

55
Appendix B
2016 Survey of Employers About Working Family Caregivers
You are being invited to participate in CareGiving.com's First Annual Survey of
Employers about Working Family Caregivers. We are sharing our survey results with
Christopher MacLellan, an MA candidate at Gonzaga University in Spokane, Wash. Through the
survey, we hope to better understand the impact of caregiving stress in the work place. As an
employer, the information you provide will help determine the level of workplace stress
experienced by family caregivers and the financial impact on your organization and employees.
There are no known risks if you decide to participate in this research study, nor are there
any costs for participating in the study. The information you provide will help to better
understand caregiving stress and its impact on family caregivers’ life. The information collected
may not benefit you directly, but what we learn from this study should provide general benefits
to family caregivers, employers and researchers. Statistics gained from this survey will
(hopefully) prove that family caregiver stress is an epidemic in our communities, including our
work places. The results will be shared with the Centers for Disease Control and Prevention.
identify you, nor will anyone be able to determine which company you work for. No one will
know whether you participated in this study. Nothing you say on the questionnaire will in any
way influence your present or future employment with your company or reveal the name of your
company or organization.

56
Your participation in this study is voluntary. If you choose to participate, please continue
to question 1. If you choose not to participate in this survey, kindly close your browser window.
Results of the survey are password protected.
If you have any questions or concerns about completing the questionnaire or about being
in this study, you may contact Denise at 773-343-6341 or denise@caregiving.com or Chris at
(954) 481-1222 or at cmaclellan@zagmail.gonzaga.edu.
2016 Survey of Employers About Working Family Caregivers
1. How would you describe the size of your organization?
More than 10,000 employees.
Between 5,000 and 10,000 employees.
Between 500 and 5,000 employees.
Between 50 and 500 employees
50 or less employees.
2. Does your organization have a formal Human Resources Department?
Yes
No
3. What is your job role?
Team Lead
Manager
Senior Manager

57
Regional Manager
Vice President
CEO
Partner
Owner
Other
4. How many employees do you manage in your current role?
1-10
11-25
26-50
50+
None
5. What is your organization operating budget?
Up to $100,000
$100,000 to $250,000
$250,000 to $500,000
$500,000 to $1,000,000
6. My organization operates in a socially responsible manner.
Strongly Disagree

58
Disagree
Neutral/Neither agree nor disagree
Agree
Strongly Agree
7. Is your organization For-Profit or Non-Profit?
For Profit
Non Profit
8. What industry does your company belong to?
9. Which employee benefits does your organization offer?
Unpaid leave (such as Family Medical Leave Act or FMLA)
Paid leave
Work/Life benefit
Job sharing
Work from home
None of the above
10. I am satisfied with the workplace flexibility offered by my organization.
Strongly Disagree
Disagree

59
Agree
Strongly Agree
11. Within the past year, has an employee confided in you that he or she is a working
family caregiver? (For the purpose of this study, a working family caregiver is described
as someone who works full or part time while caring for a family member with a chronic
or debilitating illness or disease.)
Yes
No
If you answered Yes, how many?
12. How well does your organization understand the needs of working family caregivers?
Never
Rarely
Sometimes
Often
Always
13. Does your organization provide information about benefits and resources which can
help working family caregivers in company communications such as employee
newsletters, benefits announcements, wellness or benefit fairs, the company intranet?
Yes
No

60
Unsure
14. Within the past year, are you aware of any employees who requested time off from
work, either paid or unpaid, because of family caregiving responsibilities?
Yes
No
Unsure
15. If you answered Yes to Question 14, how many employees requested:
More than four weeks
Between three and four weeks
Between one and two weeks
Five days
Four days
Two days
One day
If you don't know, tell us why (i.e., the company doesn't track this data)
16. As an employer, is it important for you to know about an employee who cares for a
spouse, parent, child, sibling, grandparent or other family member?
Yes
No

61
Unsure
17. What is more important to the success of your business?
Dedicated employees
Good customers
18. Has an employee quit his or her job because of caregiving responsibilities?
Yes
No
Unsure
If you answered Yes, how many employees?
19. Has your company terminated a family caregiver because of excessive tardiness
and/or absences?
Yes
No
Unsure
20. Do you know the cost to your company to recruit, hire and train a new employee?
Yes
No
Unsure

62
If you answered Yes, how much? (Please specify.)
21. I am satisfied with the culture of my workplace.
Strongly Disagree
Disagree
Agree
Strongly Agree
22. In a typical week, how often do you feel stressed at work?
Extremely often
Very often
Moderately often
Slightly often
Not at all often
23. Are you a family caregiver?
Yes
No
24. How committed is management to making the company a more comfortable place to
work?
Extremely committed
Very committed

63
Somewhat committed
Not so committed
Not at all committed
25. What actions can your organization take to build a better understanding of the needs
of family caregivers?
26. Please estimate the number of working family caregivers in America today.
5 to 10 million
10 to 20 million
20 to 30 million
30 to 40 million
Over 40 million
I don't know

64

Caregiving Stress Impacts Workplace

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