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Chapter 1
INTRODUCTION
Nearly 5.4 million American’s are affected by dementia, a condition marked by
irreversible loss of brain function that causes problems with memory, thinking, language,
judgment, and behavior (Dementia Initiative, 2013). There are many different forms of
dementia that affect the elderly, but Alzheimer’s disease is the most common and
accounts for 60 to 80 percent of all dementias (Williams, et. al., 2010) and is the sixth
leading cause of death in the United States and the fifth leading cause of death in
California (Alzheimer’s Association, 2013). Unfortunately, with the first wave of the
baby boomer cohort reaching the legal age of retirement this past year, the demand for
elder care and the incidence of dementia is only going to skyrocket over the next thirty
years. In fact, “the worldwide prevalence of dementia [was] estimated to be 35.6 million
in 2010, with the number exceeding (…) 115 million in 2050, making it a pressing global
health concern” (Williams, et. al., 2010, p. 13).
Dementia care significantly impacts the long-term care systems, family and, or,
care givers. The long-term care needs of this population are costly in terms medical care,
as this population is hospitalized two to three times more than individuals without
dementia, and for daily supervision (NAPA, 2010). “In 2005, the direct cost to Medicare
and Medicaid for care of people with Alzheimer’s disease and other dementias was $111
billion” (Williams, et. al., 2010, p. 14) and was expected to reach $140 billion in 2012
and projected to reach $1.2 trillion in 2050 (Alzheimer’s Association, 2013).
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In addition to monetary impacts, persons with dementia pose complex challenges
as a result of cognitive and communication impairments caused by the dementia. While
the decision to place loved ones with dementia in institutional care is not always an easy
or preferable choice for family to make, it often becomes necessary in order to ensure
their safety. Institutional care givers may be employed at hospitals, nursing homes,
assisted living communities, and skilled nursing facilities. This research focuses on care
provided at assisted living communities with memory care.
The face of institutional dementia care is changing. Prior to the late 1980’s
individuals housed in nursing homes and other long-term care settings did not fare well.
This is because the long-term care management models used were developed based on
hospitals, which are paternalistic and use a hierarchical style of management and where
task-completion is valued over relationships (Kendall, 2011). This resulted in terrible
neglect and poor outcomes for those who needed institutional care. In an effort to
improve resident-quality of life, the nursing home reform act, under the Omnibus Budget
Reconciliation Act (OBRA), of 1987, was passed which mandated that long-term care
settings deinstitutionalize their practices and to provide “services to attain or maintain the
highest practable physical, mental, and psychosocial well-being” (Social Security Act,
1986). This holistic approach marked the start of the culture-change movement in longterm care. Under this act, Medicaid home- and community-based waivers were also made
available to those individuals who wanted to remain in the community, but were in need
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of assistance with the activities of daily living, such as dressing, bathing and grooming.
Assisted living falls under this category of the policy.
Assisted living offers residents with a home-environments and supportive
services to allow the older adult to remain as independent as possible. Assisted living
settings may be apartments or houses, or rooms, with varying levels of care. Some
assisted living communities (ALC) have special Alzheimer’s care units, referred to as
Memory Care which provides specialized care and supervision to older adults with
advancing dementia (Alzheimer’s Association, 2013). These communities embrace a
resident-centered approach which considers the physical, social, spiritual, and
psychological needs of the resident. Other terms such as person-centered or patientcentered, have been used to describe the same approach and depends on the setting and
governing body’s philosophy. This thesis uses person-centered care to focus on the
individual living with dementia.
Person-centered dementia care is an “evidence-based nursing theory founded on
the principle that all human beings are of absolute value and worthy of respect, no matter
what their disability, and on a conviction that people with dementia can live fulfilling
lives” (Epp, 2003, p. 10). It is a model of care increasingly being recognized as the best
practice in dementia care (Dementia Initiative, 2013). The American psychotherapist and
humanist, Carl Rogers (1951) applied what was first called non-directive therapy, and
later changed to client-centered therapy, to the counseling setting. Rogers developed this
approach from his extensive research on personhood and was heavily influenced by
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Abraham Maslow‘s hierarchy of needs and believed that in order to facilitate growth the
focus of therapy needed to be on the client, as a whole person; and that the role of the
therapist was to express genuine concern, have an acceptant attitude, hold the client with
unconditional positive regard and experience the moment with the client with empathetic
understanding (Rogers, 1967). Carl Rogers’ work inspired Professor Tom Kitwood,
British social psychologist and founder of the Bradford Dementia Group at the University
of Bradford, in the U.K., who applied this approach to his work with dementia which
shifted the focus of dementia-care from a disease focus to a quality of life focus.
Since its inception, this person-centered care has largely been philosophical,
rather than prescriptive, leading to variances and ambiguity. However, a recent
whitepaper published by the Dementia Initiative (2013) defined the consensus reached by
experts in the field. The core values and philosophy of this approach include:
1.
“Every person has his/her own meaning of life, authenticity (personality,
spirit and character), history, interests, personal preferences, and needs to
continue to experience life at all stages of dementia. The person is not
their dementia illness; rather the condition is only one aspect of their
current status.
2. Focus on the strengths of the person living with dementia rather than on
what
abilities and capabilities have been diminished or lost.
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3. Enter the world of the person living with dementia to best understand,
communicate with, and interpret the meaning of his/her behavioral
expressions
from their perspective” (p. 14).
The quality of person-centered care is dependent on the provision of eight structural
elements which are interconnected and essential for supporting operational care practices
and include:
1. Relationships and Community (belonging)
2. Governance
3. Leadership
4. Care Partners/Workforce (Resident-Care Aide)
5. Services
6. Meaningful Life and Engagement
7. Environment
8. Accountability (CEAL, 2010, p. 9).
Statement of the Problem
The person-centered care approach is increasingly being recognized as the best
practice in dementia care as it has shown to not only improve resident-care outcomes, but
the job-satisfaction among the direct-care staff (Resident-Care Aides) who care for them.
This is critical because aides in assisted living have turnover rates as high as 200 percent
annually, with many leaving within their first year working (Chou, 2012). When aides are
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constantly leaving the workforce, the person with dementia does not fare well as new
staff will not be familiar with the personalized communication and preferences and
increases the likelihood that they will have unmet needs. According to the need-driven
dementia-compromised theory of behavior, individuals will attempt to express
themselves using whatever form of communication intact, which is often through
behaviors which may include agitation, aggression or withdrawal (Gitlan,Winter,
Earland, Herge, Chernett, Piersol & Burke, 2009) and which complicate care giving.
Understanding the meaning behind behaviors is learned in culture and which develops
through relationship and overtime (Dementia Initiative, 2013). Therefore, good dementia
care is dependent on a stable care staff and individualized care, both of which are key
principles of person-centered care.
With the ever-growing population of older adults aging, the demand for assisted
living care and other aging services is also increasing. This makes older adults and their
family prime marketing targets for senior products and services; and person-centered care
is a very attractive service. But, like all products and services, the quality of the personcentered care delivered is likely to vary depending on the provider and cost. However, in
order to provide quality person-centered care it is imperative that all eight structural
elements needed to support operational care practices are secured and maintained.
Otherwise, only fragmented person-centered care will be delivered (Dementia Initiative,
2013), making the person with dementia vulnerable to inferior care and the incidence of
turnover among the Resident-Care Aides high.
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Therefore, the purpose of this study is to conduct qualitative research at one ALC
with Memory Care which provides person-centered care. The intent of this research will
be to experience the nature of the care environment, the care provided and the effect it
has on the residents and staff. Using methods of ethnography, the researcher will make
visits as a participant-observer, conduct a survey, and make inquiry through informal
interviews with staff. This research is important because “the culture of a social group
[is] a shared way of viewing the world, its definitions of what is real and true; what is
important in pursuing; sense of history, and the personal qualities that are to be
esteemed” (Kitwood, 1990, p. 164) and will emerge in the organizational practices,
interactions among staff and with residents, and in the care practices despite marketing
approaches.
Significance of the Study
The baby-boomer cohort is aging which indicates that the demand for elder care is
increasing. As recently as 2005, Teri, et. al., identified that there are more than one
million older adults residing in ALCs; and the CEAL (2010) reported that more than 50
percent of residents in assisted living are affected by dementia. Because these
communities are licensed and regulated by the state as non-medical, Residential Care
Facilities for the Elderly, they are not required to hire professional-level care staff.
Instead, they employ Resident-Care Aides, who are not required to have prior experience
working with older adults. They receive ten hours of training, which they have four
weeks to complete (Social Security Act, 1886) and which rarely prepares them for the
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complex challenges that cognitive and communication impairments pose. Inadequate
understanding of aging-related issues and dementia subjects these Resident-Care Aides to
turnover.
Turnover is costly in terms of recruiting and training new staff. According to
Coogle, Parham and Rachel (2011) “the estimated staff turnover cost for each [ResidentCare Aide] is approximately between $1750 and $5000” (p. 521). The CEAL (2010)
“estimated the annual cost associated with 67 staff and an average turnover rate of 73
percent, to be approximately $84,537” (p. 18). These costs are alarming and must be
addressed. The person-centered care approach seeks to decrease turnover of aides by not
viewing them “as simply people being paid to accomplish tasks, but as integral to the
success of the entity in general and for individualized person-centered dementia care”
(Dementia Initiative, 2013, p. 20).
Methodology
The purpose of this study was to conduct qualitative research at one ALC with
Memory Care which provides person-centered care. The intent of this research was to
experience the nature of the care environment, the care provided, and their effect on the
residents and staff. Using methods of ethnography, the researcher made three visits as a
participant-observer, conducted a survey, and made inquiry through informal interviews
with staff.
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Research Questions
While ethnographic research requires the researcher refrain from having a
predetermined hypothesis, some guiding parameters for this research include:
Primary Research Question
1. In what ways are the qualities of person-centered care expressed, or not expressed, in
the staff-staff and staff-resident interactions? (i.e., nutrition, mood, behavior,
socialization, and therapeutic activity, teamwork, support, feedback, etc).
Secondary Research Question
2. In what ways are the qualities of satisfaction mitigated and/or displayed in specific
settings or contexts.
Limitations
There are limitations to this study. First, the observational data may be skewed by
the fact that staff were aware that the researcher was a visitor in the care environment.
Also, anytime staff is requested to take part in an employee satisfaction survey they may
not always respond honestly for fear that they may be identified by their employer. To
decrease this fear, the researcher remained on-site to retrieve the surveys from the
Resident-Care Aides. One other limitation to this study is that due to the qualitative
nature of the study, replication cannot occur.
Delimitations
To protect the working relation between the assisted living organization and the
direct care staff, the survey will exclude questions regarding wages and benefits.
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Theoretical Basis for Study
The theoretical framework for which person-centered care was developed is based
on the work of humanists Abraham Maslow and Carl Rogers, and paired with Albert
Bandura’s self-efficacy theory. Maslow, referred to as the father of humanistic
psychology, “stood for human dignity and humanistic values; he advocated a psychology
that studied healthy people and which trusted and placed the unique potential of each
person at the core of its concerns” (DeCarvalho, 1991, p. 45). His work which he is most
known for is his theory of hierarchy of needs which posits that human behavior is
motivated to fulfill needs. These needs include: biological and physiological needs; safety
needs; social needs; esteem needs; and self-actualization needs (McLeod, 2007); these
needs are hierarchically arranged with the lowest level being physiological needs and the
highest level being self-actualization needs” (Maslow, 1998, p. xx). Carl Roger’s applied
these humanistic values to the therapy setting and developed the client-centered care
approach. Rogers believed in order to promote growth in the client, the focus of therapy
needed to be on the client, as a whole person; and that the role of the therapist was to
express genuine concern, have an acceptant attitude, hold the client with unconditional
positive regard and experience the moment with the client with empathetic understanding
(Rogers, 1967). With these values, the person-centered care approach for the frail,
elderly and disabled individuals was formed. The person-centered care organization
strives to honor and meet the needs of the residents in assisted living and the workforce
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that cares for them; thereby promoting high quality care and high performing and
satisfied staff (Maslow, 1965).
This thesis highlights the challenges affecting the Resident-Care Aide in assisted
living and places particular emphasis on the staffs need for safety and esteem. However,
Albert Bandura’s self-efficacy theory will provide the framework for attending to these
needs within the organization. Self-efficacy is a cognitive regulating process in which
one’s perceptions of their abilities affect their level of motivation, goal-setting and actual
performance (Bandura, 2012). In general, “people who have a high assurance in their
capabilities approach difficult tasks as challenges to be mastered rather than as threats to
be avoided” (Bandura, 1989, p. 731) and therefore, perform higher (Brockner, 1988).
Having an understanding how self-efficacy is developed can provide the organization
with the insight needed to raise the self-efficacy of the Resident-Care Aide; thereby
increasing job-satisfaction, performance and quality of dementia care.
Definitions of Terms
Assisted Living Communities: establishments that provide permanent housing to senior
citizens who need some help with activities of daily living, such as bathing,
dressing, and taking medication, but that do not need the round-the-clock nursing
care provided in a nursing home. Many people choose ALC’s as their senior
living option because of their focus on independence and dignity.
Behavioral Expression: term preferred by the Dementia Initiative experts rather than
“behavioral problem.” Included are behaviors such as agitation, anxiety,
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aggression, and screaming. It is important to understand the root cause of
behaviors as they are often expressions of unmet needs, such as pain, hunger,
thirst, boredom, loneliness, or an underlying medical condition that the person
with dementia is challenged to communicate to a care partner or to address him or
herself.
Care Partners: people actively engaged in providing care and/or support such as family
members and others known through a personal relationship and formal caregivers.
Cognitive Impairment: refers to any loss of cognitive ability beyond what is expected as a
part of the regular aging process. Dementia and Alzheimer’s disease are common
causes of cognitive impairment in the aging population. Senior living communities
often offer special services for patients suffering from cognitive impairment.
Consistent Assignment: The same caregiver is assigned to the same residents.
Dementia: a loss of brain function that occurs with certain diseases. It affects memory,
thinking, language, judgment, and behavior.
Direct-Care Staff: people who care for individuals of all ages who have disabilities or a
chronic illness and need their assistance. In this case, they are the staff members
who provide care for older adults residing in assisted living and memory care
communities (Resident-Care Aide).
Job-Satisfaction: the degree to which people like their jobs.
Long-Term Care: refers to the services delivered to aging individuals who need help
with activities of daily living. It can be administered at home, in senior living
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communities, or in skilled nursing facilities. Patients in assisted living facilities,
home-health situations and nursing homes all receive long-term care.
Memory Care Neighborhood: specialized living arrangements for people who struggle
with cognitive impairment, and who can benefit from extra protection in an assisted
living or nursing home environment. While some facilities specialize exclusively in
memory care services, many senior living communities have special memory care
units or floors that offer special services and care for those with dementia,
Alzheimer’s and other forms of cognitive impairment.
Perseveration: repeated or prolonged action, thought, or utterance. People with
dementia often carry out the same activity, make the same gesture, or ask the
same question or repeatedly.
Person-Centered Care: person centered practice for older persons is treatment and care
provided by health services that places the person at the center of their own care
and considers the needs of the older person’s care. Person-centered practice is
treating patients/clients as they want to be treated. This might include considering
concepts such as dignity and respect.
Person-Centered Mentoring: With person-centered issues, mentoring helps individuals
gain insights into their own behavior and interaction with others.
Staff Turnover: the percentage of direct care employees that terminate employment, either
voluntarily or involuntarily, over the course of one year. The equation to measure
turnover is terminations in a year divided by the total number of staff members.
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Structural Elements: The eight structural elements constitute the building blocks for
person-centered dementia care.
Organization of Thesis
This chapter provided an overview of the issues related to dementia and their
caregivers and the person-centered care approach based on theoretical work of Abraham
Maslow and Carl Rogers. The significance between the inverse relationship between staffstability and quality dementia-care which warrants this thesis research was also outlined and
will be further explored using Albert Bandura’s self-efficacy theory juxtaposed leadership.
This chapter also outlined the methodological strategies for collecting the qualitative data
sought in this research study. The next chapter, Chapter Two, outlines the key research
literature on the person-centered dementia care approach, the challenges affecting the
Resident-Care Aide in assisted living, and organizational supports essential for developing
their knowledge, skill, and efficacy in order to provide quality dementia care. In Chapter
Three, the full methodological approach for collecting the data needed for this ethnography
research study is delineated. In Chapter Four, the findings from the participant-observational
visits, the surveys and the informal interviews are presented in terms of major themes which
emerge from the data. The final chapter, Chapter Five, provides a discussion regarding the
significance of the findings, their implications, and recommendations for improving the
delivery of person-centered care.
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Background of Researcher
The researcher of this thesis is moving mountains to attain a higher education. As a
twice teen parent and ninth grade dropout, her academic journey has been one of both
cognitive and personal growth. She first earned her G.E.D, and then enrolled at Sacramento
City Community College before transferring to CSUS. In 2012, she graduated with a B.S.
degree in Gerontology with an interest in dementia. Through the M.A. Teacher Education,
Curriculum and Instruction program, the researcher has been able to incorporate the values
of each program through this thesis which focuses on educational issues of dementia-care.
Despite the rich opportunities the researcher has and continues to be afforded, she remains
humble and appreciative and is invested to pay it forward to equally if not more deserving
academic scholars.
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Chapter 2
REVIEW OF LITERATURE
Introduction
This thesis focuses on the person-centered dementia care approach provided in
assisting living and the challenges which threaten its quality with special attention to the
paid-care partner. “Dementia is a loss of cognitive abilities in multiple domains that
results in impairment in normal activities of daily living and loss of independence
(Williams, et. al., 2010, p. 13). Currently, there are more than 5.4 million people in the
United States affected by dementia and this number is expected to rise to 16 million by
the year 2050 (Alzheimer’s Association, 2013) which means that the demand for
dementia-care is going to be astronomical. Caring for persons with dementia “strains the
health and long-term care systems as they use a disproportionate amount of health care
resources; for instance, they are hospitalized two to three times as often as people the
same age who do not have the disease” (NAPA, 2010).
The effects of dementia pose real challenges for Care Partners with “up to 50
suffering from significant psychological distress” (Williams, et. al., 2010, p. 13). In the
organizational setting, when care partners are under-supported or lack the skills needed to
provide effective care, their level of satisfaction with their job goes down and the
incidence of staff turnover increases (Chou, 2012). The person-centered dementia care
approach recognizes and appreciates the valuable role that care partners have residentwellbeing and views them as integral to the successful delivery of person-centered care
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(Dementia Initiative, 2013). When all structural elements are implemented and
maintained this approach is intended to provide the necessary supports needed to improve
job-satisfaction and decrease turnover (Chou, 2012).
This chapter defines the person-centered dementia care philosophy and core
values and all eight structural elements needed to support operational practices. This
chapter also highlights the critical role and challenges affecting the care partner in
assisted living, referred in this thesis as the Resident-Care Aide, and the responsibility of
the organization in order to raise their efficacy and skills. Because person-centered care is
multifaceted, the review of literature within this chapter has been grouped into three
sections in order to improve coherency. These sections include:
1. Person-Centered Dementia Care
2. Assisted Living and the Resident-Care Aide
3. Person-Centered Care in the Organization.
Person-Centered Dementia-Care
Person-centered care is a philosophy of care which considers the needs of the
whole person, rather than de-compartmentalizing a person’s health and well-being. The
language and aspects of whole person care was written into the Omnibus Budget
Reconciliation Act (OBRA) of 1987. This policy mandated that long-term care settings
deinstitutionalize the care practices for frail, elderly and disabled persons by taking the
appropriate measures to enhance quality of life by providing “services to attain or
maintain the highest practable physical, mental, and psychosocial well-being” (Social
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Security Act, 1986). This policy also guaranteed residents the right to free-choice, the
right to be free from restraints, the right to privacy and confidentiality, and the right to
voice grievances (Social Security Act, 1986). This reform policy started a culture-change
movement in long-term care in which paternalistic practices are being transformed
towards an approach in which elders direct their own care and are treated with respect
and dignity, and reside in home-like environments (CEAL, 2010). The strides of the
culture-movement are not slowing. Recently, with the enactment of the Affordable Care
Act, all community-based care must also be delivered in a “person-centered manner
through a whole person orientation, with coordinated and integrated care, and the
provision of safe and high-quality care through community-based health teams”
(PPACA, 2009).
The person-centered dementia care approach acknowledges the person first, not
the disease, and believes that persons with dementia can lead fulfilling lives (Kitwood,
1997). This philosophy allows caregivers to provide the persons with dementia with a
continuation of their identity which is so important when so much of their selves are lost;
not only to the disease, but through the social disintegration that occurs once given a
dementia diagnosis (Hashmi, 2009).
The theoretical framework for the philosophy was developed by the work of
Humanists Abraham Maslow and Carl Rogers, both of which conducted extensive
research on personhood. Maslow (1943) focused on human behavior which he posited
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was goal-driven to fulfill needs which are hierarchically-arranged; this is his most
popular theory and which is referred to as: hierarchy of needs and includes:
1. Biological and Physiological needs: air, food, drink, shelter, warmth, sex,
sleep.
2. Safety needs: protection from elements, security, order, law, limits,
stability, and freedom from fear.
3. Social needs: belongingness, affection and love, -from work group,
family, friends, romantic relationships.
4. Esteem needs: achievement mastery, independence, status, dominance,
prestige, self-respect, and respect from others.
5. Self-Actualization: realizing personal potential, self-fulfillment, seeking
personal growth and peak experiences (McLeod, 2007).
The biological and physiological needs are at the base of the pyramid and the selfactualization needs are at the peak. Although these levels are interdependent, the basic
premise is that people whose basic need for a food and water are unmet, are not likely to
want anything else; but once that need has been satisfied, higher needs emerge (Maslow,
1943) with the highest drive towards maturity and growth (McLeod, 2007). Using these
foundations, Carl Rogers (1951) applied what was first called non-directive therapy, and
later changed to client-centered therapy, to the counseling setting. Rogers believed that
in order to facilitate growth the focus of therapy needed to be on the client, as a whole
person; and that the role of the therapist was to express genuine concern, have an
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acceptant attitude, hold the client with unconditional positive regard and experience the
moment with the client with empathetic understanding (Rogers, 1967).
The work of Rogers inspired Professor Tom Kitwood, British social psychologist
and founder of the Bradford Dementia Group at the University of Bradford, in the U.K.,
who applied the approach to his work with dementia. This revolutionized the way the
world sees dementia. Whereas prior dementia research focused on the neurological
pathology of the disease, Kitwood‘s research, like Rogers and Maslow, focused on
personhood which he says is “a standing or a status that is bestowed on one human being
by another in the context of relationship and social being” (Kitwood, 1997, p 8). He
asserts, that “although dementia challenges assumptions about what it means to be a
person, a person is always a person” (Woods, 1999, p. 35); and a person is “someone who
is worthy of recognition, who legitimately belongs to a community of responsible agents;
and who merits treatment with respect” (Kitwood, 1990, p 46). The recognition that each
person possesses a physical, social, psychological, and spiritual dimension promotes
morality and brings the person to the forefront of a disease that inhumanly robs aspects of
personhood. Kitwood (1997) believed that “people with dementia have only one allencompassing need—for love, which is met through the provision of the five great needs:
for comfort, attachment, inclusion, occupation and identity” (p. 19). This belief was
based on Maslow (1959) who found love to be a curative agent in treating the mentallyill, and which he says is “established through the rapport of empathy, sympathy,
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kindness, and mutual trust between the patient and the therapist and the placing of the
patient in a social climate free from inner and interhuman conflicts” (p. 8).
Providing quality dementia-care requires a clear understanding of the core values
and philosophy of person-centered care and the provision of eight structural elements
needed to support person-centered care practices. The consensus reached by experts in
the field were recently published in a white paper by the Dementia Initiative (2013) and
includes:
1. “Every person has his/her own meaning of life, authenticity (personality, spirit
and character history, interests, personal preferences, and needs to continue to
experience life at all stages of dementia. The person is not their dementia illness;
rather the condition.
2. Focus on the strengths of the person living with dementia rather than on what
abilities
and capabilities have been diminished or lost.
3.
“Enter the world” of the person living with dementia to best understand,
communicate with, and interpret the meaning of his/her behaviors from their
perspective” (p. 22).
The eight structural elements are interconnected and essential for supporting the
operational practices of person-centered care and include:
1. “Relationships and Community (belonging)
2. Governance
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3. Leadership
4. Care Partners/Workforce (Resident-Care Aide)
5. Services
6. Meaningful Life and Engagement
7. Environment
8. Accountability” (CEAL, 2010, p. 9).
Person-centered care can be provided at home, in senior living communities, or in skilled
nursing facilities; therefore, not all structural elements will apply to all settings
(Dementia Initiative, 2013). However, this thesis focuses on care provided in assisted
living (senior living communities) where all elements do apply. However, for
organizational purposes this section will focus on the resident and person with dementia
in order to highlight the values directing this care approach and will explore the elements:
Relationships and Community; lightly introduce Care Partners/Workforce, Services,
Meaningful Life and Engagement, and Environment. The remaining structural elements:
Governance, Leadership, Workforce and Accountability will be discussed in the section
entitled Person-Centered Care in the Organization.
Relationships and community. “For persons living with dementia, relationships
and belonging are especially important as it as adds familiarity, comfort, meaning, and
context to daily living” (Dementia Initiative, 2013, p. 20). Unfortunately, Hashmi (2009)
found that persons with dementia often suffer a death of human interaction which Jootun
and McGhee (2011) affirm can lead to deprivation, isolation and detachment. Most
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often, a lack of knowledge about dementia and communicating with persons with
dementia or how to respond to their behavioral expressions (Perry, Galloway, Bottorf, &
Nixon, 2005) has been identified as a problem. However, according to the need-driven
dementia-compromised theory of behavior, individuals will attempt to express
themselves using whatever form of communication intact, which is often through
behaviors which may include agitation, aggression or withdrawal (Gitlan,et. al., 2009).
However, Rogers (1967) stresses the need for having unconditional positive regard for
the person at the center of care; and Kitwood (1997) identified this as a requisite for care
partners since persons with dementia cannot rationalize their own behaviors. Close
relationships with persons with dementia allows care partners to know the person well,
which enables them to look for the root causes of behaviors and learn the meaning of
these expressions by paying close attention to their non-verbal forms of communication,
which Jootun and McGhee (2011) state “accounts for 93 percent of communication in
humans” (p. 42). In fact, Hadley, Brown and Smith (1998) asserted that emotional
intensity is strongly congruent with facial expressions which are universal, and therefore,
can provide care partners with valuable insight as to how the individual is feeling or
might need. The more the care partner knows about the person with dementia the greater
their understanding and competency in responding to their needs will be (Kitwood, 1997)
as only through relationship is this information transmitted and learned. Additionally, the
Centers for Excellence in Assisted Living (CEAL) (2010) reported on a study which
found that close relationships with care partners slowed the rate of the clinical
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progression of dementia and is another reason for why retaining a stable care staff is so
valued, as these relationships and connections take time to develop. Therefore, the
“operational practice to support these relationships (…) is a culture that ensures staff has
time to spend with residents in order to form, nurture, and maintain these relationships”
(Dementia Imitative, 2013, p. 22).
Care Partners/Workforce. Person-centered care acknowledges the incredible
role that the caregiver has in providing quality care. Without them, the structural element:
relationship and community cannot be sustained. Therefore, the caregivers, or care
partners, are not viewed “as simply people being paid to accomplish tasks, but integral to
the success of the entity in general and for individualized person-centered dementia care”
(Dementia Initiative, 2013, p. 20). In assisted living, care partners have the unique
opportunity to form close emotional bonds with residents which serves as psychic
income, which Chou (2012) asserts makes an otherwise undesirable job meaningful.
Therefore, it is imperative that workforce practices support the relationship-building
between the person with dementia and the care partner through consistent assignment and
having the appropriate number of staff on shift each day and by providing effective
education and supervisory support (Dementia initiative, 2013). In this thesis, the paid
care partner in assisted living will be referred to as the Resident-Care Aide and will be
further explored later in this review.
Services. Person-centered care requires personalized services and should reflect
the persons “values, lifestyle choices, and needs to support his/her unique rhythms of
25
daily living” (Dementia Initiative, 2013, p. 20). This requires a comprehensive holistic
assessment which assesses for “cognitive health, physical health, physical functioning,
behavioral status, sensory capabilities, decision-making capacity, communication
abilities, personal background, cultural preferences, and spiritual needs” (Tilly & Reed,
2006, p. 5) and is used to direct the care plan for each person with dementia. According
to Tilly and Reed (2006) “an effective care plan builds on the resident’s abilities and
incorporates strategies such as task breakdown, fitness programs and physical or
occupational therapy to help residents complete their daily routines and maintain their
functional abilities as long as possible” (p. 6).
Providing personalized care preserves personhood and allows the person with
dementia to remain an agent in their own life, despite failing mental powers (Kitwood,
1997). This requires persons with dementia to be seen “not as an object, not as a
vegetable, not an empty body, not a child, but an adult, who, given support, might
exercise choices and respond to a respectful approach” (Woods, 1999, p. 35). The
personal biography provides a wealth of information for care partners to act as proxy
agents on their behalf (Bandura, 2001). For example, the daily routines the person with
dementia had for eating, bathing and sleeping, and the activities and social interests they
engaged in throughout their life can be used to personalize care and honor choice.
Meaningful life and engagement. Having dementia does not mean the need for
a meaningful life diminishes. In actuality, it may become more important. The construct
of what it means to have a meaningful life is multifaceted and is personal. This is why
26
collecting the biographical information for the personalization of care services is so
important as it allows care partners to individualize their experiences as much as possible.
Just as the person with dementia’s daily routines and social interests are used for
developing services for the care plans, the personalization adds to a meaningful life. As
for engagement, it is important to note that “people have different needs for solitude and
socialization, what is purposeful and meaningful for each individual is unique to them”
(Dementia Initiative, 2013, p. 21). However, in general, persons with dementia benefit
from:
Everyday social interactions, including brief positive interactions with casual
acquaintances and care partners, [as it] fosters a sense of well-being. Laughing,
singing, or simply being with others can exert a calming or energizing influence.
Knowing that one is part of a social community larger than oneself can provide a
reassuring context when a person is feeling particularly lost or upset. (Dementia
Initiative, 2013, p. 31).
For elders with early stage dementia, Chung (2009) found they benefited greatly from
opportunities to reminisce with younger generations. This is because “remote memories,
especially those with a personal reference (autobiographical memories), are relatively
spared until advanced stages. Reminiscence is about remembering, putting things
together and communicating meaning (…) and represents one of their spared cognitive
strengths” (Chung, 2009, p. 259) which provides a continuation of their identity and adds
meaning to their life. The family is also integral to the success of the process and as
27
valuable resources for acquiring personal items such as photographs and other
memorabilia of the person with dementia during childhood, adolescence, and adulthood
(Boise & White, 2004). Displaying these items in the person with dementia’s personal
spaces is a powerful way to trigger episodes of ‘rementia (Epp, 2003) and personifies
them to the care partner.
Having an occupation is integral to a meaningful life as it adds purpose and
enjoyment to daily life and fosters emotional health and can reduce the occurrence of
distressing behavioral expressions (Dementia Initiative, 2013). Although “persons with
dementia may no longer have the cognitive skills necessary for long-term projects or
activities that require a lot of memory, judgment or planning” (Kitwood, 1997, p. 20)
there are many activities that can be modified and still enjoyed. In fact, research suggests
that for individuals with a cognitive impairment “activity may fill a void, maintain social
roles, enable positive expression, reduce frustrations, and enhance continuity of selfidentity and feelings of connectedness” (Gitlan, et. al., 2009, p. 429).
Environment. The structural elements in person-centered care are
interconnected. Perhaps the clearest example of this connectedness is through the
structural element environment. Good dementia-care requires a supportive physical and
social environment. In the absence of this support persons with dementia may not feel
safe enough to engage or trusting enough to develop close relationships with care
partners and others and detracts from a meaningful life. Providing a safe physical
environment requires special attention to “create effective designs for indoor and outdoor
28
spaces, colors, lights, sounds, furniture, and furnishings that blend to create a warm,
comfortable, orienting, safe place to be” (Dementia Initiative, 2013, p. 21). This is
essential if the person with dementia is “to achieve maximum functioning, comfort,
functionality, safety, and well-being” (Dementia Initiative, 2013, p. 24). Institutionalstyle common rooms with loud televisions and cafeteria-style seating are not therapeutic
for persons with dementia and can actually result in the occurrence of distressing
behavioral expressions such as agitation or withdrawal (Weitzel, et al., 2011).
The social environment has a significant impact on the wellbeing of persons with
dementia. The social environment includes the language used; the attitudes; behaviors
expressed; which reflects the culture of the environment. Unfortunately, persons with
dementia are prone to stigmatization and stereotyping by others which detracts from a
supportive environment (Gavin, 2011). This is because in everyday life, “people select,
collect, and store a large amount of information from their encounters with others (…)
and then make some condensed summary descriptions in the form of ascribed traits”
(Kitwood, 1990, p. 186). This tendency leads to the ascription of labels based on the
behavioral traits expressed by persons with dementia. For example, persons with
dementia may become disoriented and confused and wander off, leading to them being
labeled a wanderer. Such labels degrade personhood and further alienate them from
others (Kitwood, 1993). In person-centered care, person-first language is embraced and
the person who wanders is reframed as person who enjoys being active; this reframing,
29
Fazio (2001) says, “helps people recognize positive aspects [of the person] which were
previously viewed as only negative” (p. 88).
Reframing not only of words but of attitudes, perceptions, and beliefs about
dementia is required for a person-centered culture. In fact, Tietleman, Raber and Watts
(2010) warn that “both professional and informal [care partners] need to be aware of the
power that their attitudes and behaviors have in shaping the social environment” (p. 330).
According to Kitwood (1995) a supportive social environment is where “individuality is
respected, agency is maintained, feelings are validated, abilities are exercised; there is a
celebration of life, with much to give pleasure to the senses, and support [is] provided in
times of distress” (para. 29). The social actions which promote a supportive environment
and well-being include:
1. “Recognition- being acknowledged as a person affirmed in one’s own
uniqueness.
2. Negotiating- being consulted about preferences, desires and needs, in a way
that takes into account anxiety, so that even the most dependent person have
some degree of choice.
3. Play- being safe enough for play, to have spontaneity and self-expression.
4. Timalation- honor personal or moral boundaries and stimulation in a nonsexual contact.
5. Validation- validating one’s experience so that the person with dementia can
feel more alive, more connected and more real.
30
6. Holding- proving safety, security and comfort so that a painful emotion will
pass and not cause disintegration to the psyche.
7. Facilitation- when a person’s sense of agency is depleted, enabling of
interaction to get started, to amplify it, so that meaning can develop”
(Kitwood, 1997).
The social psychology of the care environment ventures into every aspect of care
giving and throughout the organization. For example, poor nutrition can lead to
increased infections, slower wound healing, greater risk of falls and fractures, and lower
health-related quality of life (Reimer & Keller, 2009). While the nutritional intake of
older adults often declines with age due to physiological changes such as a reduced
appetite and taste alterations (Reimer & Keller, 2009), Hung and Chaudhury (2011)
found that when care partners provide a supportive social psychology, both nutritional
intake and positive person-centered care outcomes increase. This is because “eating is not
only essential to physical survival, but is important for emotional and social needs of
human life” (Hung & Chaudhury, 2011, p. 1). According to Reimer and Keller (2009)
pleasant dining experiences are created when staff value the social aspect of meals and
find ways to honor residents as individuals, holistically, otherwise feeding could become
task-focused, rushed, or stopped too soon” (p. 330).
Providing a supportive social environment encompasses many things and to list
them would be endless. However, music programs and activities can contribute to the
creation of a supportive environment as it has a strong impact on human emotion.
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“According to Dr. Oliver Sacks, Professor of Neurology at New York University School
of Medicine, music can lift us out of depression or move us to tears — it is a remedy, a
tonic, orange juice for the ear. But for many of my neurological patients, music is even
more — it can provide access, when no medication can, to movement, to speech, to life
(Dementia Initiative, 2013, p. 26). This was supported when a qualitative study was
conducted by Gotell, Brown and Ekman (2007) in which music was incorporated into
care giving of nine persons with severe dementia. The results revealed that compared to
no music, the persons with dementia whose care partners played background music
during meals and dressing proved to enhance mutuality and increase their sense of
playfulness. For the care partner who merely sang, or hummed, it enhanced a sense of
sincerity and intimacy between them and the person with dementia. The structural
element of environment is connected to the structural element of relationships and
belonging by the connectedness and sincerity which also adds to a meaningful life.
Assisted Living and the Resident-Care Aide
The Omnibus Reconciliation Act of 1987 was the turning point in the culturechange movement in long-term care. Not only did this act mandate that long-term care
settings deinstitutionalize their of care practices for frail, elderly and disabled people, but
provided Medicaid home- and community-based waivers to individuals who need some
assistance with the activities of daily living such as dressing, bathing and grooming but
want to remain in the community (Social Security Act, 1986); assisted living falls under
this category of the policy. While the concept of assisted living-type of housing was not
32
entirely new, the term first appeared in 1978, along with a housing model consisting of
three of key principles which include:
1. “Residential environments with both private and public spaces;
2. Health services for both routine, unplanned, and specialized care; and
3. An operating philosophy which emphasizes resident-choice regarding the
resident’s time, space, possessions, and contacts in his or her private space, as
well as the choice to accept or reject medical or health-related care and
services” (Wilson, 2007, p. 10).
Today, assisted living can range from small personal board and care homes to
large apartment-complex housing models with some being privately owned and others
with not-for-profit status (Kane & Wilson, 1993). Some are located adjacent to nursing
homes or independent living quarters or have specialized memory care living quarters
which provide additional services and supervision for persons with advancing dementia
(Wilson, 2007). Prior to this, nursing homes were the most popular choice and the
predominant form of public long-term care (Wilson, 2007). However, today, a move to a
nursing home in order to receive 24-hour care costs an estimated $78,000 per year
(NAPA, 2010); whereas “the national average cost for basic services in an assisted living
facility is $41,724 per year (Alzheimer’s Association, 2013). Currently, assisted living is
“home to more than one million of the U.S.’s older adults in 36,000 settings nationwide,
filling the gap between independent living and nursing home care” (Harris-Wallace, et
33
al., 2011, p. 98) and the demand for this type of housing will only increase with the vast
number of baby boomers who are now and will be reaching the age of retirement.
The development of assisted living provides consumers with a greater selection of
community-based home care options but is not without problems. Because they are
licensed by the state as non-medical, Residential Care Facilities for the Elderly; and
despite the fact that more than 50 percent of residents present with dementia (CEAL,
2010), they are not required to hire professional-level nursing staff. Instead, they employ
Resident-Care Aides to assist the residents with performing the activities of daily living.
While, Ball, Leproe, Perkins, Hollingsworth and Sweatman (2009) found that it was their
“values for helping elders and care giving jobs stemmed from past family experiences
which attracted them to assisted living” (p. 41), Resident-Care Aides are not required to
have a nursing background, high school diploma, or prior experience working with older
adults. Unlike nursing homes, which require aides to be certified by completing 75 hours
of training and pass an exam (Social Security Act, 1986), aides in assisted living receive
just ten hours of training in which they have four weeks to complete, with four hours of
additional training each year (Social Security Act, 1986).
According to California’s state regulations for RCFE’s the curriculum provided to
Resident-Care Aides covers:
1. “The aging process, physical limitations, and special needs of the elderly
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2. The importance and techniques of personal care services, including, but not
limited to: bathing, grooming, dressing, feeding, toileting, and universal
precautions
3. Residents’ rights and personal rights
4. Medication policies and procedures
5. Psychosocial needs of the elderly (e.g. recreation, companionship,
independence, etc.)
6. Recognizing the signs and symptoms of dementia in individuals” (Residential
Compendium, 2007, pp. 3-39).
For “[Resident-Care Aides] caring for residents with dementia in a community that
advertises or promotes dementia special care, programming, or environment receive extra
training. In addition to other staff training, they must complete six hours of resident care
orientation within the first four weeks of employment (…) with an additional eight hours
of in-service training per year” (Compendium, 2007, pp. 3-36). The training encompasses
the following:
1.
“Hydration;
2. Skin care;
3. Communication;
4. Therapeutic activities;
5. Behavioral changes;
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6. Environment;
7. Assisting with activities of daily living;
8. Recognizing symptoms that may create or aggravate dementia behaviors;
9. Recognizing the effects of medications commonly used to treat the symptoms
of dementia;
10. Responsiveness to the general security and supervision of dementia residents”
(Residential Compendium, 2007, pp. 3-39).
Despite the appearance of a comprehensive aging and dementia care curriculum,
it rarely prepares Resident-Care Aides for the multiple and complex challenges they are
likely to experience on the job. As a result, it is imperative that Resident-Care Aides
receive effective supervisory support with on-the-job coaching and feedback on their care
performance. Without it, the Resident-Care Aide is prone to feel that their responsibilities
exceed their abilities, resulting in role overload (Chou, 2012). This is when a malignant
social psychology seeps in and depletion, disillusionment and burnout ensues (Kitwood,
1995). Burnout is a leading cause of turnover and is characterized as “exhaustion and
reduced interest in tasks or activities (…) and can result not only from work overload but
role ambiguity, role conflict, limited job autonomy and client demands” (Gray-Stanley &
Muramatsu, 2011, p. 1066) as well. The burnout of staff can result in the provision of an
un-therapeutic social environment for residents. Kitwood (1993) coined an un-therapeutic
social environment as a malignant social psychology, which is the direct opposite of a
supportive social psychology described earlier; they are the negative actions by staff that
36
can occur as a result of burnout and that can significantly impact the resident’s health and
wellbeing. These actions include:
1. “Treachery- using dishonest representation or deception to obtain compliance.
2. Disempowerment- doing for a dementia sufferer what they can do for
themselves.
3. Infantilizing- implying the persons with dementia has the mentality of a baby
or young child.
4. Condemnation- blaming the person with dementia of behaving with malicious
or seditious intent.
5. Intimidation- use of threats, commands, or physical assaults; the abuse of
power.
6. Stigmatization- turning the dementia sufferer into an alien, a diseased object,
an outcast, especially through verbal labels.
7. Outpacing delivering information or instruction too fast for the person with
dementia to process.
8. Invalidation- ignoring or discounting the person with dementia’s subjective
state, especially in feelings of distress or bewilderment.
9. Banishment- removing the person with dementia from human surroundings,
either physically or psychologically.
10. Objectification- treating the person like a lump of dead matter; something to
be measured or pushed around” (Kitwood, 1997).
37
Unfortunately, this population of workers has one of the highest turnover rates. In
fact, while the direct care staff in all long-term care settings experience similar staffing
challenges, the aides in assisted living have rates as high as 200 percent annually with
many leaving within their first year of employment (Chou, 2012). Turnover is costly in
terms of hiring and training new staff. One study revealed that “the estimated staff
turnover cost for each [Resident-Care Aide] is approximately between $1750 and $5000”
(Coogle, et. al., 2011, p. 521); the Centers for Excellence in Assisted Living (CEAL)
(2010) estimated “the annual cost associated with turnover in a typical assisted living
residence with 67 staff and an average turnover rate of 73 percent, to be approximately
$84,537” (p. 18). Reducing staff turnover is critical for improving satisfaction among
residents and their family members. When staff is stable, the Resident-Care Aide
benefits from knowing the person with dementia well, and therefore, is better able to
respond to their communicated needs, spoken and behaviorally expressed. For family
this knowledge is priceless as they can rest knowing their loved one is in good hands; on
average, “when turnover decreased by 20 percent, resident and family satisfaction
increased by 30 percent” (Chou & Roberts, 2008, p 209). With the vast number of
assisted living options on the market today, ensuring that family is satisfied is indicative
that person-centered care is effective and that the organization develops a reputable
reputation (Lee, 2012).
The costs associated with turnover are alarming and raise an interesting question.
If resident-aides voluntarily seek employment in assisted living and find the residents the
38
most satisfying part of their jobs, why then, is turnover among this population of workers
so high? Chou (2012) credits this phenomenon directly to how satisfied the aide is with
their job; which he asserts is the outcome of the measure and quality of the presenting
stressors and the availability of workplace support. Person-centered care, when all
structural elements are secured and maintained, is designed to provide the necessary
supports needed to improve satisfaction and decrease staff turnover (Dementia Initiative,
2013). The following section will explore the remaining structural elements of personcentered care within the organization.
Person-Centered Care in the Organization
The same human-oriented frameworks used for guiding person-centered
dementia-care are the same frameworks applied to the organizational setting and
treatment of staff. Recall, Maslow’s theory of hierarchy of needs posits that human
behavior is goal-driven to fulfill the following hierarchically-arranged needs:
1. “Biological and Physiological needs: air, food, drink, shelter, warmth,
sex, sleep.
2. Safety needs: protection from elements, security, order, law, limits,
stability, and freedom from fear.
3. Social needs: belongingness, affection and love, -from work group,
family, friends, romantic relationships.
4. Esteem needs: achievement mastery, independence, status, dominance,
prestige, self-respect, and respect from others.
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5. Self-Actualization: realizing personal potential, self-fulfillment, seeking
personal growth and peak experiences” (McLeod, 2007).
Of particular importance for the Resident-Care Aide, and consequently persons
with dementia, are the safety and esteem needs. Going back to the structural element of
environment, the social psychology of the organization significantly impacts work
performance and resident-care. A supportive organization is essential, with each person
respected and properly supported, for the delivery of quality person-centered care. The
remaining structural elements: governance, leadership, workforce, and accountability are
essential for supporting and sustaining the mission, culture, and practice of personcentered care; each of these will now be reviewed.
Governance. The successful delivery of person-centered care in assisted living is
dependent on the governing bodies. As the “ultimate decision-makers, (…) the owner,
operator, and the board are essential to establishing, implementing, and sustaining the
operational culture within their organization; without their active involvement and
commitment, and person-centered dementia care cannot be created or sustained”
(Dementia Initiative, 2013, p. 20). This means that they are responsible for ensuring that
all structural elements are secured and producing desirable outcomes. Unfortunately,
however, “resistance from senior leadership is the most frequently cited barrier to
adopting culture change, followed by perceived cost and concern about compliance with
regulatory requirements” (Brownie & Nancarrow, 2013, p. 8). This is because the
commitment to provide quality person-centered care is a value-base” (Kirkley, et. al.,
40
2011, p. 442) and “medically oriented institutions may not value the time required for
staff to attend to the personhood needs of persons with dementia and may not recognize
that the approach can save time and money in the long run by decreasing disruptive
behaviors of dementia sufferers and decreasing staff turn-over” (Thornton, 2011, p. 11).
Fortunately, Rogers (1967) asserts that “values are not held rigidly, but are
continually changing” (p. 21) and “are subject to reappraisal in the light of new
experience” (Kitwood, 1990, p. 57). New experiences can come from making the
commitment to be a learning-organization and by providing effective, organization-wide
education in both dementia and person-centered care. Consequently, in order to create an
“institution of great depth and quality, the board must undergo a radical shift in how they
approach their roles” (Spears, 1996, p. 2) due to the flattening of the management
hierarchy that elicits the participation of Resident-Care Aide’s in the collaboration and
planning related to resident-care. And, as a result, Tilly and Reed (2006) affirm that
“administrators have the critical role of evaluating facility policies and procedures to
ensure that they support the [Resident-Care Aide] decision making during real-time
interactions with residents” (p. 8) and must re-design those policies and procedures that
do not support staff decision making (Dementia Initiative, 2013).
Leadership. Strong organizational leadership is essential for providing the
successful delivery of person-centered care because it is a radical shift from traditional
long-term care management models. "Leadership refers to the head of an organization
and executive and managerial staff positions; [they] are the key communicators and
41
supporters to ensure that person-centered operational practices are implemented,
achieved, and sustained” (Dementia Initiative, 2013, p. 20). Because of the holistic
nature of person-centered care it is imperative that the leadership-style also reflect the
values of person-centered care. Traditional long-term care management models use an
authoritative-style of management where tasks are valued over relationships (Kendall,
2011). Inconsiderate leaders have been described by Bass (1960) to “frequently demand
more than can be done, who criticize subordinates in front of others, who treat
subordinates without considering feelings, who ride subordinates for making mistakes
and who frequently deflate the self-esteem or threaten the security of subordinates by
acting without consulting them, refusing to accept suggestions, and refuse to explain
actions” (p. 99). Poor leadership “has consequences for staff in terms of demoralization,
burnout and stress, lower work satisfaction or job clarity, lower psychological wellbeing
and high workforce turnover” (Brooker & Wooley, 2007, p. 379). This does not help the
vision of person-centered care move forward, nor does it create a supportive social
environment.
Two leadership styles which have been found to promote the safety, esteem and
retention of the Resident-Care Aide are the transformational leader and the servantleader. The transformational leader is someone who understands the values of the
organization and “[models] a set of behaviors that motivate followers to achieve
performance beyond expectations by changing followers' attitudes, beliefs, and values as
opposed to simply gaining compliance” (Yucel, McMillan, & Richard, 2014, p. 2). It is
42
someone who “inspires and mentors their subordinates and has strong communication
skills, is a good listener, possesses teamwork skills, effectively develops others through
mentorship and coaching, and is be able to articulate a shared vision” (Isaac, Grifin, &
Carnes, 2010, p. 544). The servant leader is committed to “teamwork and community;
involving others in decision making; is strongly based in ethical and caring behavior; and
to enhancing the growth of people” (Spears, 1996, p. 1). While both styles are very
similar, however, Stone, Russell and Patterson (2004) denote “the difference is the focus.
The transformational leader's focus is directed toward the organization, and his or her
behavior builds follower commitment toward organizational objectives, while the servant
leader's focus is on the followers, and the achievement of organizational objectives is a
subordinate outcome” (p. 1). A healthy combination of both leadership-styles is the best
practice for a healthy person-centered care environment. Leadership, like the social
environment, ventures into all aspects of care and throughout the organization.
Therefore, the following section will apply leadership with respect to developing a strong
workforce.
Workforce (Resident-Care Aide). The Resident-Care Aide in assisted living is
integral to the successful delivery of person-centered care (Dementia Initiative, 2013).
Therefore, it is the responsibility of the governing officials and members of the leadership
team to ensure that the Resident-Care Aide is “effectively oriented, trained and mentored
[in order] to build person-centered care skills and competencies” (CEAL, 2010, p. 15).
When considering the challenge of staffing and its impact on the quality of the dementia
43
care, it is imperative that the organization devote attention to the third and fourth level of
Maslow’s hierarchy of needs which includes the need for: safety and esteem. According
the McLeod (2007) esteem needs include the need for achievement mastery,
independence, status, dominance, prestige, self-respect, and respect from others;
attending to employee self-esteem within the organizational setting has proved good
results. Brockner (1988) asserts that “self-esteem typically refers to a global construct
that taps individual’ self-evaluations across a wide variety of situations” (p. 14).
The extent at which the organization can influence a Resident-Care Aide’s global
construct is variable, but raising their evaluations of their care giving abilities may
profoundly affect their commitment, satisfaction, and retention with the company. This
is because, as Huang, Shyo, Chen and Hsu (2009) assert, care giving behaviors largely
depend on the care partners’ perceived self-efficacy. Self-efficacy is a cognitive
regulating process in which one’s perceptions of their abilities affect their level of
motivation, goal-setting and actual performance (Bandura, 2012). In general, “people
who have a high assurance in their capabilities approach difficult tasks as challenges to
be mastered rather than as threats to be avoided” (Bandura, 1989, p. 731) and therefore
perform higher (Brockner, 1998). Having an understanding of how self-efficacy is
developed can provide organizations with opportunities to raise the care giving efficacy
of the Resident-Care Aide and can significantly impact job-satisfaction and retention.
Therefore, this theory will now be applied to the Resident-Care Aide with respect to
leadership, safety and esteem.
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The first way self-efficacy is developed is by mastery experiences (Bandura, 2012).
This is “the most dependable source of efficacy expectations because they are based on
one’s own personal experiences. Successes raise mastery expectations; repeated failures
lower them” (Bandura, 1977, p. 80). Therefore, the governing policies and leadership must
enable others to act, as an exemplary leader “enlists the support and assistance from all
those who must make the project work (…); they know that those who are expected to
produce the results must feel a sense of ownership” (p. 12). This is why person-centered
care flattens the hierarchy and involves the Resident-Care Aide in the planning,
collaborating and decision-making processes regarding resident-care because it validates
their valuable role and allows them to develop and use all of their knowledge and skill
(Koren, 2010). For example, one of the most effective means of addressing behavioral
expressions not associated with an unmet need, such as pain, hunger or thirst, is therapeutic
recreation (occupation). Gitlan, et. al., (2009) developed and tested a Tailored Activity
Program (TAP), which consisted of 170 prescribed activities and was assigned to 60 persons
with dementia and their care partners who were trained on how to use the prescribed
activities. The results revealed that not only did the program promote wellness in persons
with dementia, but it had a profound, positive effect on caregiver self-efficacy “with 86 %
saying that they had enhanced skills and 93% saying they felt they had more [confidence]
that they could diffuse challenging behaviors” (Gitlan, et al., 2009, p. 429).
The second way self-efficacy is developed is through social modeling (Bandura,
2012). According to Bandura (1977) “seeing others perform threatening activities without
45
adverse consequences can create expectations in observers that they too will succeed if
they intensify their efforts; they persuade themselves that if others can do it, they should
be able to achieve at least some improvements” (p. 81). There are a number of people
within an organization who can serve as models for the Resident-Care Aide the personcentered care giving behaviors needed to enhance the effectiveness of their skill;
however, according to Kouzes and Posner (1995) “the three most important are mentors,
immediate supervisors/managers, and peers” (p. 329). Mentors can be formal or informal
persons within the organization and can help the Resident-Care Aide “navigate the
system, make introductions, and point [them] in the right direction” (Kouzes & Posner,
1995, p. 329). This is important because Resident-Care Aide’s in assisted living receive
as little as ten hours of initial training with six additional hours each year after (Social
Security Act, 1986). This means that much of the learning that Resident-Care Aides
acquire comes from on-the-job experience and guidance from supervisors and other staff.
The CEAL (2010) supports the use of work teams as they correlate to higher performance
and reduced turnover and allow for role modeling and the sharing of creative care giving
interventions by more experienced staff. Likewise, mangers have a crucial role in the
practical skill development of the Resident-Care Aide and can do so by providing handson-training, coaching and feedback, with the goal of inspiring excellence in care. Kouzes
and Posner (1995) assert “the best ones challenge us, trust us, are willing to spend time
with us, and are consistent in their behavior” (p. 330).
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Educational resources can also provide Resident-Care Aides with vicarious
learning experiences. Training programs which employ a variety of experiential and
interactive teaching methods such as on-the-job coaching, role playing, case studies, and
self-reflective assignments (Boeitcher, Kemeny, DeShon & Stevens, p. 2004) have been
found to be more “productive and beneficial than lecture and video trainings, [and]
recognizes that people have different learning strengths; some learn best visually, others
by hearing information and still others by doing” (CEAL, 2010, p. 19). Role-playing is
an educative process designed to bring about a change in attitude, set, and behavior of
trainees” (Bellows, 1959, p. 227) “by allowing them to act out solutions to problems
without a script, promoting transference from learning situations to performance on the
job” (Bass, 1960, p. 216).
The third way self-efficacy is developed is through social persuasion (Bandura,
2011). According to Bandura (2011) “if people are persuaded to believe in themselves they
are more perseverant in the face of difficulties, [as] resolve increases the chance of success”
(p. 13). However, this manner of efficacy expectation is weak and short-lived as it can
create expectations without providing an authentic base for them” (Bandura, 1977, p. 82).
Therefore, leaders must “pay attention to be sure they observe followers doing the right
things and doing things right and compliment workers on their successes, encouraging their
hearts through verbal recognition to keep working toward the vision” (Boone & Makhani,
2012, p. 19), coupled with practical models of success to provide needed reinforcements.
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Understanding the barriers to staff buy-in allows for better leadership to emerge and
social persuasion to occur. For example, Bellows (1959) asserts that “people resist change if
they do not see a need or if they feel they are being pushed into it” (p. 226). Therefore, the
leader must communicate and inspire a shared vision as “visions seen only by leaders are
insufficient to create an organized movement or a significant change in the company (…);
leaders cannot command commitment, only inspire it. (…) To enlist support, leaders must
know their constituents and speak their language” (Kouzles & Posner, 1995, p. 11). They
must “display an individualized consideration and to develop a high quality dyadic
relationship with each [Resident-Care Aide], paying particular attention to their special
needs and wants, and provide the information and resources needed for successful
completion of tasks” (Tse & Chiu, 2014, p. 2829). This conveys to staff that they are truly
valued members of the team and integral to the success of person-centered care and the
organization (Dementia Initiative, 2013). Additionally, “people resist change if there is lack
of visible reward for changing” (Bellows, 1959, p. 226). Not only do people seek out and
stay at organizations that offer the rewards they want or are lacking at other companies
(Bass, 1960), but rewards can reinforce the behaviors valued by the organization and
increase their willingness to support the values and goals of the organization (Bellows,
1959). Therefore, good leaders “take care to recognize both individual contributions and
team achievements through rewards, awards, gifts, and thank-you’s of many types;
presenting a plaque, naming an employee-of-the-month, or honoring a retiree are
opportunities to [highlight staff’s] successes and to reinforce the community’s shared values
48
and vision” (Boone & Makhani, 2012, p. 19). While initially the Resident-Care Aide may be
motivated by the reward, in time and with practice the real reward will come when they see
the benefits of person-centered care which equates to overall-wellbeing of the residents and
satisfaction in their jobs.
The fourth way self-efficacy is developed is through physical and emotional
states (Bandura, 2012). According to Bandura (1977) when evaluating self-efficacy
“people rely partly upon their anxiety and vulnerability to stress; because high arousal
usually debilitates performance, individuals are more likely to expect success when they
are not beset by aversive arousal than when they are tense, shaking, and viscerally
agitated” (p. 82). Dementia-care poses complex challenges that make the Resident-Care
Aide prone to experiencing states of stress. However, leaders within person-centered care
organizations must recognize that “no one does their best when they are feeling
incompetent or alienated” (Kosner & Posner, 2005, p. 12) and therefore, provide their
workforce with effective instrumental and emotional supports needed to develop their
knowledge and skill (Chou, 2012). In doing that, leaders must also recognize that if the
Resident-Care Aide’s is to learn and thrive, they have to attend to the safety needs of staff
by ensuring that the structural element social environment is effective, as Rogers (1951)
asserts:
Only in an atmosphere of safety, protection, and acceptance, the firm boundaries
of self-organization relax (…) [enough to] explore his perceptual field more and
more fully. He discovers faulty generalizations, but his self-structure in now
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sufficiently relaxed so that he can consider the complex and contradictory
experiences upon which they are based (…) and is able to assimilate this
contradictory experience into a new revised pattern a process of disorganization
and reorganization. (p. 193).
With new gained knowledge and with leadership’s support the Resident-Care Aide “can
gain confidence in [their] ability to handle the stresses, anxieties, and problems”
(Maslow, 1959, p. 127) associated with care giving.
Accountability. Person-centered care is multifaceted and requires the full
commitment and action by those in governance and leadership positions within the
organization. It is this structural element which ensures that the integral components of
person-centered care are in place and producing desired outcomes. Accountability, refers
to “a system [to] regularly evaluate the performance (culture, operations, processes,
systems) and be collected through internal and external means, including resident, family,
and staff satisfaction surveys” (Dementia Initiative, 2013, p. 24). The goal is to ensure
that all components are functioning and maintained so that quality dementia care can be
provided; where staff receive the necessary supports to perform their jobs effectively,
which above all else entails the development of close bonds with residents, which is at
the heart of person-centered care. Therefore, the operational practice for accountability is
“ensuring that all of the person-centered dementia care practices and processes are, in
fact, producing intended outcomes” (Dementia Initiative, 2013, p. 24).
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Summary
This chapter outlined the key research regarding dementia care with respect to the
provision of person-centered care approach, and in assisted living. As was presented,
dementia poses multiple and complex challenges for caregivers which are integral to
success of resident-care. The person-centered care approach was developed using the
theoretical framework of Abraham Maslow’s hierarchy of needs and Carl Roger’s clientcentered therapy and is collectively concerned with preserving personhood and
promoting the growth of all people within the organization. As was discussed, it is the
role and responsibility of governance and members of the leadership team to ensure that
that a person-centered culture is created, achieved and maintained (Dementia initiative,
2013). Leadership was juxtaposed the structural element workforce (Resident-Care Aide)
and was examined through the lens of Albert Bandura’s self-efficacy theory. This pairing
allowed for a better application of the leadership needed to meet the safety and esteem
needs of the Resident-Care Aides employed in the organization. The next chapter, chapter
three, will explain the methodology used in this research study which focuses on the
person-centered care provided in assisted living community.
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Chapter 3
METHODOLOGY
Overview
An assisted living community (ALC) is “home to more than one million of the
U.S.’s older adults in 36,000 settings nationwide filling the gap between independent
living and nursing home care” (Harris-Wallace, et al., 2011, p. 98). While ALC’s are
licensed by the state as non-medical, Residential Care Facilities for the Elderly, more
than 50 percent of residents present with dementia (CEAL, 2010); and with the aging of
the baby-boomers the demand for this type of housing and the prevalence of dementia
will only increase over the next thirty years (Alzheimer’s Association, 2013). This will
only complicate current staffing challenges that affect the assisted living industry and
place greater demands on the Resident-Care Aide. Staff turnover has negative
implications for both the organization and for persons with dementia. For the
organization, staff turnover results in high costs in terms of hiring and training new staff;
for the person with dementia, turnover can result in unmet needs (Gitlan, et al., 2009) as a
new staff member may not be familiar with their preferences or understand the meaning
behind their behavioral expressions (Dementia Initiative, 2013). For these reasons, the
assisted living industry must find a way to retain a stable workforce.
Research Design and Data Collection
This study uses ethnographic research methods to collect qualitative data from the
selected research site for this study. “Ethnographic research is grounded in field work that
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enables the researcher to study the activities of people in their everyday setting” (Palmer,
2001, p. 301) in order to discover what daily life is like for the members of that group.
This research is important because “the culture of a social group [is] a shared way of
viewing the world, its definitions of what is real and true; what is important in pursuing;
sense of history, and the personal qualities that are to be esteemed” (Kitwood, 1990, p.
164). Culture emerges in verbal exchanges, attitudes, behaviors, and through workforce
practices despite marketing resources which may state otherwise. The ethnographic
research approaches used in this study included participant-observation visits, surveys,
and informal interviews with staff as questions arise during these visits to the assisted
living community.
The procedure for distributing and collecting the survey instruments will take
place during the participant-observation visits that has been approved by the community.
During these visits I will follow/shadow the Resident-Care Aides as they carry out their
daily routines caring for residents and record my observations in a field note book.
During this face-to-face interaction, the researcher took the opportunity to request that the
Resident-Care Aides participate in the study which entailed taking the paper-based
survey instrument on-site and agree to an informal interview as questions arise. The
researcher provided written information on their rights as voluntary research participants
and had them sign the prepared consent form and then give them my survey. Between
the data gathered from the participant-observation visits, informal interviews and survey
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responses a rich source of information for answering the research questions was expected
to be obtained.
Research Questions
The intent of this research study was to keep an open-mind and not bring
assumptions about what the researcher expected to find. However, in light of the literature
reviewed in Chapter Two, the following research questions were developed to guide the
research design:
Primary Research Question
1. In what ways are the qualities of person-centered care expressed, or not expressed, in
the staff-staff and staff-resident interactions? (i.e., nutrition, mood, behavior,
socialization, and therapeutic activity, teamwork, support, feedback, etc).
Secondary Research Question
2. In what ways are the qualities of satisfaction mitigated and/or displayed in specific
settings or contexts.
Research Instruments
The research instrument to be used in this research study was a qualitative survey
that assisted the researcher to answer the research questions. The researcher developed a
survey that collected data about the participant’s care giving background, person-centered
care values and workforce practices, and their level of satisfaction with their job and the
organization. The survey use a five-point rating scale for responses with designated
spaces after each question that will allow staff the option to expand or explain any of
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their survey responses. Four of the eleven survey questions included four caregiver
background questions which include:
1. How long have you been caring for older adults?
2. Please indicate the age group you belong to (optional)
3. Please share the ethnicity you identify with (optional)
4. How long have been working for this organization?
By asking these questions it allowed the researcher to look for anomalies/correlations
between years of experience, duration of employment, age and ethnicity which will
permit me to better analyze the survey and observational data gathered during the
participant-observations visits.
The additional seven questions are delineated here in two clusters with respect to
their relationship to the above stated research questions. The first cluster of questions is
related to the job-satisfaction, which is the degree to which the Resident-Care Aides like
their jobs. These questions include:
1. Do you and your coworkers work well as a team?
2. Does your supervisor provide you with helpful feedback on the care you provide
to residents?
3. How meaningful do you find your work to be?
4. If you were to change jobs, how likely would it be caring for older adults?
5. In what areas of resident-care is most challenging?
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These questions are important for assessing qualities of staff job-satisfaction which Chou
(2012) asserts is the outcome of the measure and quality of the presenting stressors and
the availability of emotional and physical workplace support. Workplace emotional
support can be “acts of caring, such as showing concern, respect, and trust, or listening
sympathetically (…) while instrumental support can be offering tangible assistance such
as materials and resources necessary for the job, guidance or knowledge needed to
complete a task or actual physical aid” (Chou & Robert, 2008, p. 209). The last question
regarding the most challenging aspect of resident-care was the only question on the
survey that was designated to be an open-ended question with the intent to see if the
challenges they experience is mitigated by other factors in the organization, leading to
satisfaction.
The second cluster of questions is related to resident-care, and asks:
1. How beneficial do you think outdoor activities are in relation to resident mood
and behavior?
2. How often in the past month have you spent time outside with residents?
3. What types of activities did you engage with residents outside?
4. During mealtimes do you sit down with residents and engage them with
conversation?
5. How beneficial do you think music programs are in relation to resident mood and
behavior?
6. How often are musical activities enjoyed by the residents?
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The basis for asking these questions is that they are indicators of the practice of personcentered care in relation to resident-wellbeing. In particular, two of the questions are
asking for the Resident-Care Aide’s value-base in regards to the effectiveness of outdoor
activities and music programs on mood and behavior; and two of the questions are asking
for the frequency in which they actually engage in those activities. The question
regarding mealtimes is critically important in relation to person-centered care which
strives to provide pleasant and supportive dining experiences because it promotes wellbeing and quality life for residents.
Research Participants
The primary focus of this thesis is the Resident-Care Aide employed in assisted
living. This focus was selected in acknowledgement of the incredible role they have in
resident-care and the high turnover rates that plague this population of workers which
detracts quality dementia-care. The participants in this research design are the ResidentCare Aides employed at the selected research site. These Resident-Care Aides split their
time between assisted living community and the specialized Memory Care neighborhood.
To protect their confidentiality they will be given pseudonyms, or fictitious names, in the
findings of this research study.
Research Setting
The setting for this research study was one ALC with a specialized Memory Care
neighborhood located in Northern California. This site was selected because of its
commitment to providing person-centered care to its aging residents. The Director of
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Quality and Compliance was more than welcoming of my research study and allowed me
to select the level of care which best suited my study design. The options were: assisted
living or Memory Care program. Because this thesis is centered on dementia-care, the
Memory Care program was selected because it will allow me to observe the
organizational practices and the interactions between staff-staff, staff-resident, and
resident-resident in a community where all of the residents have severe enough dementia
that they can no longer live without secured, 24-hour supervision.
Data Analysis Procedures
The qualitative data sought in this research study was analyzed in terms of distinct
major themes or subject areas worthy of discussing that emerged from the data collected.
By examining the survey data and field notes collected during the participant-observation
visits and informal interviews, the researcher hoped to assess the Resident-Care Aides
care giving experience, perceived adequacy of ongoing support and training, and their
level of job-satisfaction. Upon this investigation and from the data collected assertions
about the data collected were made which the researcher found to be substantive. These
claims were supported with the qualitative data provided as well as an analysis of that
data. The findings of this research are presented in ethnography format. An ethnography
is “a style of social science writing which draws upon the writer’s close observation of
and involvement with people in a particular social setting and relates the words spoken
and the practices observed or experienced to the overall cultural framework within which
they occurred” (Watson, 2011, p. 205) Therefore, the qualitative information gained
58
through the interviews, surveys and participant-observations were thoughtfully reflected
on and presented as a story of how things work in this organization (Watson, 2011).
Summary
This chapter provided information regarding methodology used in this research
study which focuses on the Resident-Care Aides employed in the research site. Through
participant-observations visits, surveys and informal interviewing the researcher hoped to
gain insight into their experience as an employee at this community as well as to the
experience of residents in the Memory Care neighborhood. The information gathered
from these rich data sources were analyzed for emerging themes and were presented and
supported in a written ethnography in Chapter Four.
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Chapter 4
FINDINGS AND ANALYSIS OF THE DATA
Overview
This research study took place at an assisted living community, with specialized
Memory Care, in Northern California. The community is situated in the beautiful,
country-side surrounded by nature and open-air. In exploration of the grounds, the
researcher was pleased to hear the beautiful chirping of the birds against the backdrop of
the sound of running water from the seven rock gardens through the property. Along the
perimeter of the property, visible low-hanging bird-feeders and park-like seating are
inviting and peaceful. Inside, the community was beautifully decorated with inviting
houseplants and an aviary with two canaries, and two beautiful fireplaces which were
being quietly enjoyed by several residents, as soft symphonic music played in the
background, creating a pleasing environment. To the side there was an open coffee and
pastry bar available for the residents to enjoy. To the other side there is a community
library and a family dining room which provide residents with reading materials and a
place for an intimate dining experience with friends and family.
Towards the rear of the building, behind a code-secured entrance, lies the
specialized Memory Care neighborhood. Inside this community, the wall art are enlarged
pictures of the memory care residents which immediately provides an intimate
experience. Outside of each of the resident’s rooms, hangs a personal biography of each
resident, which provides care givers with unique information about their past experiences
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and preferences which are what person-centered care plans are based. Within the
memory care neighborhood, are two dining halls, one large and the other, small. There is
also a common activity and television room which are used for various scheduled
activities and programs. In the middle, is the nursing station, where the medication
technician stores and prepares for distribution the resident’s prescription medications and
supplements. The researcher’s overall evaluation of the esthetics of the community was
that it was pleasing and comfortable place to be.
The participants in this study included seven Resident-Care Aides and the
residents they care for within the memory care neighborhood. In this community the
Resident-Care Aides are referred to as R.C.A.s. All seven of these R.C.A.s were female
and were between the ages of eighteen to forty-seven years and older. The demographics
identified by these R.C.A.’s fell into three ethnic groups: three were Caucasian; two were
African American; and two were Hispanic. All seven R.C.A.’s reported having prior care
giving experience, with one aide reporting one to two years of experience; two aides
reported having three to four years of experience; one aide reported having five to six
years of experience; and three aides reported having ten or more years of experience.
The length of their employment with this particular ALC reported by these R.C.A.’s
varied as well, with two of the aides reporting being employed there for 90 days or less;
two aides reported being employed for six months or less; and three aides reported to
having been employed there for one or more years. While it was not one of the available
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options on my survey, two of the R.C.A’s shared with me that they had been employed
with this assisted living community for ten years.
Findings & Analysis
Upon completion of the research at the Memory Care neighborhood and after
analyzing the data, the researcher was able to find five overarching themes or major
subject areas which were substantive and which can be connected to the structural
elements of person-centered care. These include:
1. Consistent Assignment Equates to Greater Resident-Knowledge and Relationship:
Because of the memory and communication impairments caused by dementia,
persons with dementia need care partners who know them well, otherwise they
may have unmet needs. Therefore, in order to develop this knowledge it is
important that the same care partners are assigned to the same residents which is a
factor of the structural element four: Workforce; however, it is ultimately
connected to the structural element three: Leadership as they are responsible for
“ensuring that workforce practices are based on personal interactions and
relationships” (Dementia Initiative, 2013, p. 20).
2. Understanding the Dining Program Improves the Dining Experience: In order to
provide a person-centered dining experience it is important that staff be educated
on all aspects of the company’s adopted dining program and be given the
rationale behind it so that staff can see the benefits of following it, as opposed to
being forced into something they see no need for. This finding correlates with the
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structural element three: Leadership because it is the responsibility of leadership
to “ensure that person-centered operational practices are implemented, achieved,
and sustained (…) [and that staff] are oriented and trained in person-centeredness
and dementia-care competencies” (Dementia Initiative, 2013, p. 20).
3. Embracing Emergent Leaders within the Organization: Because of the costs
associated with turnover, it is important that organizations hire the right people
for the job. For leadership positions, it is critical that the person have leadership
qualities or potential. The first place the organization should look is at the talents
of their current staff. Those that have such attributes should be given a pathway
and training into a leadership position. This finding correlates with the personcentered care structural element three: Leadership, and structural element four:
Workforce as “investing in staff by fostering a continual learning environment
(…) and promoting staff members who are good at their jobs into leadership
positions” (CEAL, 2010) are ideal as Coogle, Parham and Rachel (2011) found
that the development of new skills and career ladders were found to be important
for career commitment and the greatest deterrent of turnover.
4. Ambiguity Leads to Lower Family and Staff Satisfaction: People prefer the fulldisclosure of information. In assisted living, family members are paying for a
service and expect that a quality service will be rendered; and the Resident-Care
Aides are the providers of that service. If pertinent information is not given, either
to staff or to family, their level of satisfaction with the organization decreases.
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Therefore, in order to raise satisfaction effective education and support and
decentralized communication is important for conveying the right information to
the right people. This finding correlates with the structural element eight:
Accountability, which refers to the “practice of ensuring that desired personcentered outcomes are actually being achieved and is effective. Such evaluative
data can be collected through internal and external means, including resident,
family, and staff satisfaction surveys” (Dementia Initiative, 2013, p. 21).
Resident-Care Aides Find Meaning in Their Work: Providing care to older adults
and persons with dementia pose many challenges for care partners. However,
despite these challenges the Resident-Care Aides in this study were able to
identify positive attributes of their job that outweighed the challenges. When
people find their work to be meaningful they are more likely to remain in that job.
For quality dementia-care, job-stability of the care partner is essential. This
finding correlates with the structural element three: Leadership as they must
“continually recognize and appreciate staff work efforts through genuine praise
and encouragement [as well as] take the time to periodically recognize and
celebrate successes that can be easily identified through regular monitoring and
evaluating outcomes” (CEAL, 2010, p. 14) which is connected to structural
element eight: Accountability.
Each of these themes are further described and supported with evidence from the
data collected from the participant-observational visits, survey instrument and informal
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interviews of this study to support these claims along with pertinent research from the
review of literature outlined in Chapter two. The participants in this study have been
assigned pseudonyms in the presentation of these findings to protect the confidentiality of
their identity.
1. Consistent Assignment Equates to Greater Resident-Knowledge and
Relationship.
The person-centered care approach values the relationship-building between the
R.C.A. and person with dementia. The more the care partner knows about the person
with dementia, the greater their understanding and competency in responding to their
needs will be (Kitwood, 1997). Therefore, the quality of the person-centered care is
dependent on a stable care staff as relationships and person-knowledge develops
overtime.
The qualitative data collected for this study revealed that an ideal relationship
between a care partner and a person with dementia had been formed between long-term
employee, Ashley, and resident, Jane. Ashley is an R.C.A in her early 40’s and has been
employed with the company for ten years. Jane has late-stage dementia, uses a wheel
chair, and requires full assistance during meals. And, although Jane cannot engage in
dialogue, per se, she communicates through verbal perseverations and clearly asserts her
agency to unwanted care. The knowledge Ashley has about Jane is evident in the
following interactions between Ashley and Jane:
Ashley: Hello, good morning! Do you want to sleep longer?
(Ashley kneels down on her knee next to Jane’s bed).
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Ashley: I like to get down to their level and make eye contact with them. They
may not always understand what you are saying, but they know tone of voice,
body language and hear movements.
Ashley is aware that although Jane does not have the capacity to understand all of her
words, she knows that by making eye contact, adjusting her tone and monitoring her body
language are modes of communication still intact for Jane.
(Jane’s eyes open; however, she has eye problems which cause her eyes secrete a
discharge that hardens during the night)
Ashley: I know, I will wash your face for you. Let’s get you up and see if you
need to use the bathroom. The water takes forever to get warm so I turn it on
right away so it will be warm by the time I am done helping her use the restroom.
(Ashley pulls down Jane’s blankets to get her out of bed)
Ashley: Oh, the morning shift must have already gotten her up. Oh I wish I could
have shown you how I like to get her dressed. I love dressing her in pretty clothes.
Oh well, let me help her use the bathroom. Jane, hi! Let’s go to the bathroom.
Ashley: Can you shut the door to the room? I like to give them privacy. We
would.
Ashley and Jane’s morning routine is well versed. She knows that Jane’s eye condition
makes it hard to see and that the water takes time to warm to a comfortable temperature.
She also looks forward to dressing her for the day and enjoys making her look pretty.
She also respects Jane as a person and affords her with the privacy that most people
prefer while dressing or using the restroom.
Ashley: I think Jane really needs a bed rail because she has been falling and that
is how she got that bruise.
(Ashley points to the huge bruise on the side of Jane’s face)
She used to use a walker but she is too weak now. But sometimes she will just
want to get up and try to stand like she did with her walker.
Because Ashley has been a consistent employee with the company and knows Jane well,
she has seen her decline and knows the measures that need to be taken to prevent her
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from future injuries in bed. She also has the background knowledge about Jane’s previous
use of a walker that allows her to rationalize her attempts to stand.
Ashley: Hello Jane, how are you? You were just sleeping away.
(Ashley smiles at Jane)
Ashley: I love my job because I like to be a family member for them. I like to talk
to all of the residents each day. I love it when they smile, just like with my own
kids.
Having a positive regard for persons with dementia is key to person-centered care.
Ashley’s regard for Jane and the other residents is high as they are like family members
to her; she enjoys being in relation with them as she likes to talk to them and see them
smile.
Ashley: Ok Jane, can you hold onto the bar for me?
(Jane grabs the bar with two hands and stands up)
Good Job! You did it!
Ashley: Now can you sit down on the toilet?
Jane: No! No! No!
Ashley: Ok, you don’t need to go to the bathroom? Well let’s put a fresh depend
on for you then and wash your face.
Ashley: Good job!
Ashley is supportive and encourages Jane to participate in her activities of daily living
which allows her to employ the functional abilities that are she still intact for her. She
also respects Jane as an agent by welcoming her expressions to unwanted care and
accepting her as the authority of her toileting needs.
Jane: (perseverating)
Ashley: Did you know Jane sings? That’s what I call it. I love it. If she wasn’t
making that sound, I would be worried something was wrong.
(Ashley takes a small blanket off of the bed and folds it and hands it to Jane)
Ashley: Here Jane! I like to give her the blanket because she likes to hold onto it
and it makes her calmer; otherwise she tries to hold onto everything and becomes
more stressed.
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Ashley: Jane, I will be right back I am going to get you some yogurt ok?
Ashley has developed unique insights about Jane. She has learned Jane’s specialized
form of communication that allows her to monitor Jane’s disposition and needs. She has
learned that providing Jane with a blanket makes her experience less stress and to feel
more secure.
The person-centered care approach values the relationship-building between the
R.C.A. and person with dementia. The more the care partner knows about the person
with dementia, the greater their understanding and competency in responding to their
needs will be (Kitwood, 1997). Ashley clearly knows Jane well. She has developed the
insight needed to better meet Jane’s needs. She is also very attentive to Jane’s experience
and engages in non-verbal forms of communication by adjusting her tone, maintaining
eye contact and caressing her face often. According to Jootun and McGhee (2011) these
behaviors are appropriate in dementia-care because “non-verbal communication accounts
for 93 percent of communication in humans” (p. 42); and Hadley, et. al., (1998) found
that emotional intensity is strongly congruent with facial expressions and is universal.
Ashley’s attentiveness, compassion and regard for Jane, indicates that her position in the
Memory Care neighborhood is both warranted and essential for the delivery of quality
person-centered care.
2. Understanding the Dining Program Improves the Dining Experience.
It is imperative that Resident-Care Aides be given education on the organization’s
adopted dining program if a person-centered dining experience is to be provided.
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Otherwise, in the absence of this knowledge, or without the buy-in from staff, an untherapeutic dining experience is likely to occur.
This study revealed two very different dining experiences; one dining service was
near ideal for person-centered dining, and the other was less supportive. A lack of
knowledge about the dining program, or a lack of assertion of that knowledge by other
staff, was responsible for the less than ideal dining service. The supportive dining
experience was a lunch service. The dining room was bustling with the sounds of
silverware hitting plates and residents busily eating and conversing with one another.
Ashley, the R.C.A. that cared for Jane, was as attentive and knowledgeable about other
residents as she was with Jane and is evident in the following dialogue:
Ashley: I like to get a smaller plate for “Ms. B” (Ashley retrieves a small plate
from the cupboard and takes it to Mrs. B, a resident who appears uninterested in
eating) because if there is too much on her plate she won’t eat. But if there is only
one thing at a time she eats a lot! I think she gets overwhelmed.
Ashley: Here you go, Mrs. B. (Ashley sits close to Mrs. B, putting one item on
the plate at a time; and Mrs. B begins to eat each food item Ashley puts on the
plate).
Kat: Do you always sit down with the residents and eat with them?
Ashley: Yes, we sit down and eat with them and encourage them to eat. They
won’t if you are not eating.
Ashley knows that Mrs. B gets overwhelmed during meal times but has learned that by
placing one food item on the plate at a time, it allows Mrs. B to better manage the
experience and increases her nutritional intake. Because Ashley understands the dining
program and the rationale for it she knows that dining is much more than merely the
intake of food; it is also a very social experience. By eating with the residents and
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providing the necessary resident-support she is able to provide a supportive social dining
experience.
During the lunch service, the researcher observed Marie, another R.C.A. who has
been with the company for ten years, in a small dining room with a small group of
residents. The researcher inquired about it to Ashley:
Kat: What is Marie doing in there?”
Ashley: Oh, that’s the hospice feeding room. You can go in there if you want.
Kat: Thank you.
Hospice is end-of-life care. In dementia, as it progresses, feeding becomes a challenge
and therefore, food must be mechanically chopped or pureed to prevent choking.
The researcher approached the small dining room and observed Marie dining with
five residents. Four of the residents’ meals were chopped (carrots, chicken, and corn
bread), except for a leg of barbeque chicken; and one resident, Jane’s, was pureed and
needed direct feeding assistance. The researcher knocked on the door and the
conversation went as follows:
Kat: Hi, can I sit in here with you?
Marie: Sure.
Kat: What do you do in here?
Marie: I am the hospice feeder, I help the residents who need their food chopped
or pureed, or feeding assistance. Except sometimes they don’t eat the food
because it doesn’t look like a carrot or sandwich. I saw this video called Dining
with Friends and the top chefs make their food actually look like the food they are
supposed to look like.
Kat: How long are meals?
Marie: I like to give them a lot of time, so they can let their food settle and they
don’t have to feel rushed. But they usually take an hour.
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Marie understands the dining program and the aspects related to dining which affect
interest in and the consumption of food. Rather than a rushed, task-focused dining
experience, Marie allows ample time for residents to eat, socialize, and let their food to
settle which equates to a more pleasant dining experience. She is also aware of the dining
program’s potential as she has seen a model by top chefs who prepare appetizing meals
for persons needing chopped or pureed foods.
Marie stands up to get the desserts; a white cake with a whipped cream topping.
Marie takes the diabetic (sugar-free) dessert, which looks exactly the same, and sets it in
front of Shirley. Shirley does not hesitate to partake in the delectable treat with her
fingers; Marie makes the following comment about Shirley:
Marie: Shirley likes finger foods. That’s how she prefers to eat, so when the food
is chopped she can’t do that as well. And she loves sweets.
(Shirley looks up and makes a huge grin as she licks her fingers).
Marie has developed the knowledge about each of the residents in the small hospice
dining hall. She knows Shirley’s preferential mode of eating is with her hands and that
she likes sweet desserts.
Towards the end of the meal, Ms. W, the youngest and only Asian resident,
begins to engage in the repeated folding of her cloth napkins on the table. The dialogue
regarding this experience is as follows:
Ms. W: Sorry, we are all booked up.
Marie: Ms. W is very fidgety. She likes to stay busy.
(Ms. W gets up and takes the napkin in front of me and folds it perfectly).
Ms. W: No, bank is closed today.
(Marie hands Ms. W. a napkin from a resident who had finished eating and Ms. W
returns to her chair to fold it)
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Kat: Do you know her background? Maybe she owned or worked in a restaurant
before?
Marie: I think so…for sure, because she seems like she used to wait on tables or
something.
(Marie gives her another napkin to fold)
Marie: She is doing so much better. When she first came she was not doing good
and never wanted to come out and be with the other residents.
Kat: What do you think was the change?
Marie: She started a new medicine and she is doing so good. She is so pretty too.
(Marie stops and smiles adoringly at Ms. W).
Person-centered care seeks to find the meaning behind expressed behaviors and holds the
person with dementia in a positive regard. Marie has found ways to honor each resident
in the hospice dining hall. She respects that Ms. W. prefers to stay busy and so she
provides her with napkins to fold that are not being used by other residents. She also has
seen the progress to Ms. W.’s health since coming to the Memory Care neighborhood and
strives to provide a therapeutic social environment for her.
The lunch dining experience was near ideal and beautifully captured the values of
person-centered care. The success of the service can be attributed to the fact that both of
the R.C.A.’s on duty understood and conveyed their knowledge about the dining program
and the importance of providing a supportive environment. Only in my absence could it
have been improved as the time and attention they gave to me would have been solely the
residents. However, throughout the meal Ashley and Marie remained attentive to the
residents. The small dining room afforded Marie with a small ratio of residents to care for
which was one R.C.A. to five residents. This provided an effective seating arrangement
that allowed for greater visibility of the resident’s facial and bodily expressions which
allowed her to better monitor the residents in her care.
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The second dining service I observed was dinner and proved to be a less
supportive dining experience. I attribute this experience to the evening shift’s lack of
knowledge about the dining program by newer R.C.A.’s and a lack of assertion of this
knowledge by more experienced staff. This claim is evidenced in the following dialogue
with Amy, a newly hired R.C.A. prior to the dinner service:
(The kitchen staff entered with the food; she first turned on the lights to the small
dining room, and then proceeded to the large dining hall to begin serving the
residents).
Amy: I wonder what’s going on in there.
Kat: Oh, that’s for the residents who need feeding assistance.
Amy: Oh, ya…I hate that room. It doesn’t make sense to have them separated
over there when we all fit in here. I say just keep everyone in one room.
(We all enter the same dining room and everyone takes a seat).
Amy: See, we all fit in here. And look they are all eating just fine.
Amy had been employed with the company for 90 or less days. In that time, she had not
acquired knowledge about the company’s dining program or the rationale for the hospice
feeding room. And, consequently, she did not see a need for holding separate dining
services.
During the dinner service the R.C.A.’s engaged in light socialization with the
kitchen staff and each other. During this time, Mary, a resident who staff cited as the
community’s more challenging resident, and who was seated at a table in the back of the
room, engaged in a dispute with another resident, Ms. T. The dialogue is as follows:
Mary: Oh my God. Oh my God. I don’t feel good! I am going to throw up!
Ms. T: Can you please stop saying that?
Mary: Bastard, Crap! I’ll go kill myself.
(Mary takes her glass and pours it on Ms. T’s shirt).
Ms. T: Why did you do that?! She poured that cup right on my shirt!
Mary: No I didn’t! I put my cup right in front of me!
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Ms. T: No you did it on purpose!
(Ms. T leaves the room to change her shirt).
Mary: Oh my God. Oh my God. I don’t feel good! Bastard, Crap! I’ll go kill
myself.
Amy: Mary can you stop talking like that it is upsetting people.
Mary: What did I say?
Amy: You really upset her.
Mary: How?
Amy: Never mind. It’s ok, just eat your food.
Mary’s use of foul language is upsetting to the other residents. Her disturbing behavioral
tendencies and aggressiveness towards others deems it necessary to seat her in a location
in which she and others around her can be closely monitored.
In the confusion caused by the dispute and because the residents on hospice were
dispersed throughout the dining room, the kitchen staff almost caused a dietary mishap
during her distribution of the desserts and is evidenced in the following dialogue:
(The kitchen staff passes out the desserts, placing one in front of Shirley)
Kitchen staff: Oh that was close! I forgot she is a diabetic.
(The kitchen staff quickly grabs the plate and switches it with a sugar-free
dessert).
Amy: Good catch!
The kitchen staff almost distributed a non-diabetic dessert to Shirley, the resident with
diabetes from the hospice feeding room. If the residents on hospice were seated closer
together, the kitchen staff may have experienced less confusion.
Near the end of the dinner service, Ms. W., the resident from the hospice room
who prefers to stay busy, had taken off one of her shoes and began roaming from table to
table taking the napkins of residents who had not finished eating yet. The staff’s response
to this occurrence is as follows:
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Amy: She does that all of the time. By the end she will have no shoes on.
In the short time that Amy has been employed with the company she has come to accept
Ms. W.’s after-dinner behaviors as the norm. While her acceptance is respectful to Ms.
W., allowing her to roam from table to table is inconsiderate of the other residents who
also deserve to have a pleasant dining experience.
The dinner staff chose for all residents to dine together in the large dining hall.
Although Amy was well-intended she did not see a need for separate dining and
consequently the outcome was a less supportive dining experience. The researcher
attributes this provision to a lack of knowledge, or assertiveness of knowledge, about the
organization’s adopted dining program. While Amy had only been employed with the
company for a short time, there were two other R.C.A.s on-shift that evening: Ana,
another employee of 90 days or less, and Sandra, a ten year employee with the company.
Although Sandra was busy attending to resident-needs outside of the dining hall during
the service, the researcher was surprised that she did not assert her knowledge of the
program to the newer staff when she saw them dining in one hall. Consequently, the
residents that required feeding support were dispersed throughout the large dining hall,
making monitoring the resident’s needs difficult. Moreover, because the dinner staff was
engaged in their own conversations with the kitchen staff rather than with adjacent
residents, it made monitoring the social environment impossible. As a result of this
laxity, Shirley almost received a non-diabetic dessert; Mary poured a drink on Ms. T; and
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Ms. W. took her shoe off and took the napkins of her fellow resident’s before they
finished dining.
Caring for persons with dementia and older adults in group-settings pose complex
challenges for Resident-Care Aides that are not completely preventable. However, good
social interactions could be better encouraged by appropriately grouping residents at
tables in the dining room, making dining together more possible. For example, Reimer
and Keller (2009) reported that it has been hypothesized that there should be four
different groupings for meals to allow for closer monitoring and support interventions
and include: “residents who are aware of their social environment and usual social
boundaries; residents with less awareness of social boundaries; residents with greater
tendencies for disruptive behavior; and residents who respond to stimuli but have no
awareness of their social environment” (p. 336). These seating arrangements will
contribute to the overall goal of person-centered dining, which Hung and Chaudhury
(2011) assert is to provide a pleasant dining experience for all residents as it significantly
impacts nutritional intake and overall well-being.
3. Embracing Emergent Leaders within the Organization.
Turnover is costly in terms of hiring and training new staff. Therefore, it is
important that organizations employ the right people for the job they are seeking to fill.
To fill leadership positions, the first place human resources should look is at the natural
leadership talents of staff in the organization and to develop the skills of those with
leadership potential.
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Marie is an R.C.A. who has been employed with the company for the past ten
years. Observing her in action as she cared for residents was very impressive, as was her
ethical assertions regarding her position within the company. Throughout the
researcher’s time with Marie, she remained busy attending to resident-care needs. The
following dialogue is evidence of these ethical assertions and leadership qualities:
Marie: My job is to take care of the residents. I shower them; I help them go to
the bathroom. I ask them how they are feeling, if they are in pain. And to report!
And I talk to them.
(Marie walks down the hall and enters each room to check on the residents)
Marie: I go up and down the halls and make sure everyone is taken care of. I do
everything right! It is really hard for me to sit long, so I do more work than I have
to. It is supposed to be housekeeping that takes care of cleaning the trash bins out,
but I usually take care of it. But if I see that their (residents) floor needs
vacuuming, housekeeping needs to come and do their job.
Kat: Does that cause you problems?
Marie: I don’t care who hears. I am not afraid. I am here for the resident. The
other staff don’t always like me because I make them do their job right. And
management plays favoritism; if they like you, you get scheduled better. But I am
hoping that the new manager, which is also African American, will be fairer. And
not be on my side or anything but just be fair.
Marie is confident in her role as an R.C.A. and is efficacious in her work performance.
However she is expressing a desire for justice and equity in the workplace by other staff
and by the management team.
Marie: I want to be a trainer some day because all the problems that do come up
boil down to a training issue.
Kat: I definitely could see you doing that. You would be a good trainer!
Marie understands that most challenges within the workplace can be remedied with
training. She also expressed an interest to provide such training to others in the future.
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Marie’s ethics were further evidenced in the hospice dining hall when she noticed
a safety issue of the prepared meal. The following is her assertion:
Marie: Look at this! (Marie points to the chicken) I am going to have to say
something about this. That’s the only way to get things to happen, is if you ask
questions. I mean, there are bones in the chicken and someone could choke. What
were they thinking?
Resident-safety is a top priority. Because Marie works closely with residents on hospice
and serves their food, she is in a prime position to communicate these concerns with the
kitchen and supervisory staff. Her acting on that concern is further evidence of her
leadership potential.
Marie is very certain of her role as an R.C.A. and clearly understands the roles
and responsibilities of others in the organization. This allows her to specify her concerns
and to give positive attributes where the organization’s performance is strong while
holding people accountable for their roles and responsibilities. This is evidenced in the
following assertions:
Marie: But I give them (the assisted living company) an “A” plus-plus for the
outings they do. They go to restaurants like Subway. A lot better than where I
used to work. But if I see something wrong I am going to say something because
my duty is to observe and report. If they take a bowel, or don’t. If they shower, or
refuse. Like at 2:00 pm. is when the shift change is and we meet so that the next
shift will know of any problems or issues so they can be there for the resident. I
can’t stand it when someone knows something happened and then they don’t let
the next shift know because it takes away from the resident.
Communication and shared decision-making are hallmarks of person-centered care.
Marie values the communication and collaboration between the day and evening shift
staff because it allows her to provide more effective care to the residents.
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Marie also believes in taking precautionary measures to keep residents from harm
and is evidenced in the following statement:
Marie: That is why I am a good R.C.A. I am all for prevention. Like I put
Desitin on with every diaper change...so that they don’t get a rash in the first
place; like I do for my babies. I care for the residents like I do for my kids.
Marie regards the residents as family members and takes the same preventative measures
as she would for her own children. Marie attributes having these qualities to what make
her a good R.C.A.
Marie has a solid understanding of what would detract from being a good R.C.A.
and is evidenced in her following statement:
Marie: But the biggest problems are with management. And you are not
supposed to be understaffed. I don’t say it…the State says it. And with staff… do
your job! I don’t do no favors for no one. Like if a resident is supposed to have
oxygen, I am not authorized to do it. Do your job!
Again, Marie is expressing a desire for equity and accountability within the ALC and to
abide by the rules and regulations of the state. Marie’s ethics regarding for her role, her
coworker’s role, and the responsibilities of the organization provide clear examples of her
leadership potential.
Marie has been with the company for the past ten years and has expressed her
desire to become a teacher. She understands her duty as an R.C.A. is to observe and
report. She knows how important it is that the day and evening shifts communicate and
collaborate on any changes in resident-health and/or behaviors during shift-change
meetings. According to Spears (1996) she embodies the values of a servant leader as she
is committed to “teamwork and community; involving others in decision making; is
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strongly based in ethical and caring behavior; and to enhancing the growth of people” (p.
1). These qualities make her, what Kitwood (1998) refers to as, a moral agent which is
someone “who can engage consistently in the right action, even in the face of
countervailing pressures; moral character is learned primarily through practice, by facing
up to real opportunities, difficulties and dilemmas” (para. 1). Because Marie has these
qualities and consistency, it warrants investing in her leadership training for a leadership
position within the company. According to CEAL (2010) when leaders emerge from
within the organization, like Marie, they possess a thorough understanding of the
organization’s values and practices and bring with them invaluable insight on the needs
and challenges affecting the Resident-Care Aide. This is ideal as Coogle, et. al., (2011)
found that the development of new skills and career ladders were found to be important
for career commitment and the greatest deterrent of turnover.
4. Ambiguity Leads to Lower Family and Staff Satisfaction.
The Resident-Care Aide learns much of their skill on-the-job which can create
problems within the organization and lead to lowered staff-, family-, and residentsatisfaction. The following dialogue exemplifies how ambiguity can lead to family
and staff frustration:
Family member: Excuse me, how do I talk to the nursing supervisor?
Amy: The nursing supervisor? Uh, good question.
Family member: What do you mean? You don’t know?
Amy: I haven’t met her myself yet?
Family member: You mean the nursing supervisor has not met the staff yet?!
Amy: Well she just started today. Go to the end of the hall and ask the med-tech!
(Amy points to the end of the hall).
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Amy’s lack of knowledge about the new nursing supervisor and poor communication
with family was upsetting to both Amy and the resident’s family member. However, her
response itself was genuine as Amy had not met the supervisor and seemingly had not
been instructed in how to respond to family inquiries on this matter.
The frustration Amy experienced as a result of lacking this information about the
nursing supervisor spilled into the care environment and is evident in the following
dialogue between Amy and the more experienced R.C.A., Sandra:
Amy: Oh my God! That lady was like “where is the nurse supervisor?” and I said
I didn’t know, and she said “what do you mean you don’t know?” and I said well
she just started today!
(Sandra looks confused but uninterested in getting involved),
Sandra: Oh, well I have to get the maintenance man to bring the big scale over
here.
Despite Sandra’s ten years of experience, she did not provide Amy with helpful feedback
about how to work with families or emotional support to diffuse or redirect her
frustrations.
Amy’s lack of knowledge was further evidenced in the following conversation with
Sandra regarding the purpose or procedure for weighing the residents:
Amy: For what?
Sandra: To weigh the residents.
Amy: Weigh the residents?
Sandra: Ya, every first of the month the residents have to be weighed.
Amy: Oh…how are you going to do that with the wheelchairs?
Sandra: It’s a big one; and wheel-chair accessible.
Amy: Oh.
In Amy’s short-time with the company she had not seen the process of weighing the
residents, nor did Sandra offer Amy a rationale for the purpose of weighing the residents
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each month which represents a missed mentoring opportunity. Weighing the residents
every month is mandated by state regulations as it provides key information regarding
their nutritional intake and health-status.
Amy’s dissatisfaction with the family member continues to bother her and is
evident in her statement to me after Sandra left to go get the scale:
Amy: But I do not like dealing with the family members. They are barely ever
here and when they are they want to find all of the things wrong.
Amy does not have the insight to see the validity of the family member’s discontent.
This detracts from person-centered care which views family members as integral to the
care planning process and their satisfaction as key for the resident’s continued residency
at the assisted living and Memory Care neighborhoods.
The R.C.A.s at this community expressed having lowered satisfaction with the
extent and supportiveness of their initial training with the company and is evident in the
following dialogue:
Kat: Do you like working here?
Amy: Yes, I mean the positives outweigh the challenges.
Kat: How was the training for the job?
Amy: Terrible! It was barely any at all. I think it was two days in memory care
and three days in assisted living.
Gina: For me it was more like two days in memory care and one day in assisted
living.
Ana: Well see for me it was different! I started in assisted living and just moved
over here. So this is all new to me. And my whole thing is I want to do a good
job. And over there (in assisted living) they tell you (because the residents are
more cognizant).
Amy: Yes, but the thing for me is they never even gave you a radio over there (in
assisted living) so you were just running all over the place. Then you would get to
a residents room and you didn’t have what they needed so you would have to go
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all over the place. I mean put me where you put me, but give me a radio so I can
know what I am supposed to do or need to know!
Sandra: Yes, they didn’t give me a radio over there either.
These three R.C.A.s reported not having the proper training, equipment and support to
learn and perform their jobs effectively. They all stated that having access to a radio
during that initial training period would have permitted them to communicate more
effectively with management regarding resident-care and would have improved the
quality of care they provided to the community’s residents.
Further ambiguity by the R.C.A.s was discovered through question two of the
administered survey, which asks: Does your direct supervisor provide helpful feedback
on your job performance? Of the seven study participants, 57% responded that they
sometimes receive helpful feedback on their performance; and two of the R.C.A.s added
the following comments to this survey question:
Marie: Right now we don't have one, this lady works from her house she's not
with the company but she is still in charge of our day's job and status.
Amy: If you ask.
When Resident-Care Aides perceive themselves to be under-supported or lack helpful
supervisory support, their satisfaction with their job and the organization is lowered and
they are unable to improve the effectiveness of their care interventions.
Resident-Care Aides learn much of their knowledge and skill on-the-job, often
through trial and error. The R.C.A.s in this study expressed great ambiguity regarding
their role and responsibilities with the company during their initial training period which
lowered their care giving efficacy. They also expressed dissatisfaction with the lack of
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support from their supervisors and from not being given the tools needed to do their jobs
effectively, which was having access to the radio so that they can communicate more
efficiently with management regarding resident-care. Staff satisfaction was also lowered
due to a lack of knowledge regarding the organization’s protocol for communicating with
family and in the absence of clear instructions. The CEAL (2010) reported that ResidentCare Aides “are put in situations that require unusually sophisticated interpersonal and
communication skills,” (p. 18) which they often lack at the start of their employment.
Because of Amy’s short duration with the company and limited experience working with
families, she lacked the insight needed to understand the reasonability of the family
member’s inquiry and so became upset and frustrated with them, lowering her
satisfaction and the satisfaction of the family member. Family members want to know
that their loved one is well taken care of and not knowing who is supervising the care
warrants their lowered satisfaction. Unfortunately, Sandra, who has been with the
company for ten years failed to assert her knowledge to the newer staff. This represents a
missed mentoring opportunity, as Chou and Robert (2008) found that “job-satisfaction
(…) was positively associated with supervisor instrumental and emotional support and
coworker emotional support” (p. 208). Sources of emotional support can be “acts of
caring, such as showing concern, respect, and trust, or listening sympathetically (…)
while instrumental support can be offering tangible assistance such as materials and
resources necessary for the job, guidance or knowledge needed to complete a task or
actual physical aid” (Chou & Robert, 2008, p. 209).
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Person-centered care recognizes that “no one does their best when they are feeling
incompetent or alienated” (Kosner & Posner, 1995, p. 12). Believers in the approach
understand that “people rely partly upon their anxiety and vulnerability to stress. [And]
high arousal usually debilitates performance; [especially when they are] tense, shaking,
and viscerally agitated” (Bandura, 1977, p. 82). Therefore, it is imperative that the
governance and members of the leadership team provide these aides with the training and
support needed to improve the effectiveness of their job-performance and satisfaction
with the company. This is critical because when family- and staff- satisfaction goes
down, the organization is vulnerable to a poor reputation and high turnover. However,
Chou and Roberts (2008) assert that “when turnover is decreased by 20 percent, resident
and family satisfaction increases by 30 percent” (p. 209).
5. Resident-Aides Find Meaning in Their Work.
Despite the many challenges facing Resident-Care Aides they are able to find
meaning in their work. The one open-ended question on the survey asked the R.C.A.s:
What is the most challenging aspect of your job? The following are their responses:
Ashley: Memory care and physical changing.
Marie: Well there is a lot of redirecting to do that comes with the job.
Amy: Dealing with care for combative residents.
Sandra: Dealing with resident’s family.
Gina: For me it would have to be the loss of the ones I care so much for.
Ana: Communication with residents in memory care.
These responses reflect the evidenced-based literature regarding the challenges
experienced by direct care staff. However, despite these challenges, and as also stated in
the research, Resident-Care Aides are able to find meaning in their work. This was
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evidenced in this study by the R.C.A.s responses to question nine of the survey which
asks: How meaningful do you find your work to be? All of seven participants reported
they found their work to be extremely meaningful. The following dialogue was gained
through the informal interviews and the additional comments provided on this question
on the survey and support the claim that these R.C.A.s do find meaning in their work:
Amy: I mean you have to love your job if you are going to change diapers all of
the time. And it’s even worse over on the assisted living side because they can do
things by themselves, but will be extra needy. Like there is this one man who you
can tell not only pooped his diaper but try to make it messier than it needs to be.
Here (memory care) they don’t know they are being hard, but they (residents in
assisted living) know what they are doing. Gotta have compassion and enjoy what
you do.
Marie: I care, that’s what it takes to be a good R.C.A. and you have to listen.
Leslie: My language (Spanish) makes it hard to care for the residents. But I want
to do a good job for them. But I like to play Bingo with them and eat ice cream
and donuts with them.
Gina: I absolutely love what I do. My residents are my second family. I love each
one of them!
Ana: I wanted to be a nurse when I was seven years old.
These Resident-Care Aides identified factors which they find brings meaning to their
jobs. The residents and their compassion to care mitigated the stress they experienced
caring for residents’ hygiene needs or behaviors.
Question ten on the survey asked the R.C.A.s: If you were to change jobs, how
likely would it be caring for older adults? Of the seven participants, 43% said it is would
be extremely likely; 43 % said it would be very likely; and one said that it would be not at
all likely. Two of the R.C.A.s which stated it would be very likely provided the following
comments:
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Gina: I want to go back to school and get my nursing degree.
Marie: I say that because I rather teach.
Collectively, all of the R.C.A.s were able to find meaning in their work. When
Resident-Care Aides find their work to be meaningful they tend to stay with the
organization, despite the stressors of the job. In fact, although the one R.C.A. stated it
would be not at all likely that she would work with older adults if she were to change
jobs, she has remained employed with this company for ten years and reported on the
survey to that she found her work to be extremely meaningful. However, while this
correlates with the literature, organizations should not take this gift for granted. They
must build on this ability and ensure that workforce practices support their relationshipbuilding between the staff and residents and that the social environment to validate what
is meaningful to them.
Person-centered care values the incredible role that the Resident-Care Aide has in
providing quality dementia-care, and therefore, views staff not “as simply people being
paid to accomplish tasks, but integral to the success of the entity in general and for
individualized person-centered dementia care” (Dementia Initiative, 2013, p. 20). The
believers in the approach recognize that it was Resident-Care Aides “values for helping
elders and care giving jobs stemmed from past family experiences which attracted them
to assisted living” (Ball, et. al., 2009, p. 41) and understand that “all human beings prefer
meaningful work to meaningless work” (Maslow, 1951, p. 29). They recognize and
support the close emotional bonds that these R.C.A.’s are able to make with residents
because they understand that it serves as psychic income bringing meaning to their job
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(Chou, 2012) and therefore develop workforce practices which support these
relationships.
Due to the critically important role of the Resident-Care Aide in resident-care, it
is important that leadership “take care to recognize both individual contributions and
team achievements through rewards, awards, gifts, and thank-you’s of many types to (…)
reinforce the community’s shared values and vision” (Boone & Makhani, 2012, p. 19).
Likewise, it is important that leaders “display an individualized consideration and to
develop a high quality dyadic relationship with each [Resident-Care Aide], paying
particular attention to their special needs and wants, and provide the information and
resources needed” (Tse & Chiu, 2014, p. 2829). Marie, has been with the organization
for ten years, has demonstrated leadership qualities, and has expressed her desire to teach.
Developing this pathway is an opportunity for both Marie and the organization, as
Coogle, et. al., (2011) found that the development of new skills and career ladders were
found to be important for career commitment and the greatest deterrent of turnover.
Person-centered care is founded on the belief that all people want to feel safe and
that they belong. Close relationships with caregivers allow persons with dementia to be
well cared for and to thrive. Knowledge of person-centered care and the adopted dining
program allows staff to provide a therapeutic social and physical environment. Due to
their integral role in providing this care, the organization must show the Resident-Care
Aides that they are valued by providing them with effective training and helpful
supervisory support. Embracing the meaning that Resident-Care Aides find in their work
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and developing the natural leaders within the organization is an opportunity for both the
company and Resident-Care Aides as it can raise self-esteem and caregiver efficacy;
thereby improving the challenges associated with turnover.
Summary
This chapter provided ethnography of the information collected from one ALC in
Northern California. Through my participation-observation visits, informal interviews
and survey data, the researcher was able to find five distinct subjects that are of great
importance with respect to dementia-care provided in assisted living and Memory Care.
The first theme that was discussed was: consistent assignment equates to greater
resident-knowledge and relationship. As was supported, the more knowledge the
Resident-Care Aide has about dementia and about the resident, the more therapeutic their
care giving interventions will be. The second theme that was discussed was:
understanding the dining program improves the dining experience. This theme is
extremely important because the dining experience significantly impacts resident
nutritional intake and overall well-being. The third theme that was discussed was:
embracing emergent leaders within the organization. This theme focused on cultivating
the leadership talents within company which is organizational efficiency in terms of jobsatisfaction and turnover of staff. The fourth theme that was discussed was: ambiguity
lowers family and staff satisfaction. When people do not have the information or
resources necessary to do their jobs, satisfaction is significantly lowered and leads to high
turnover and a poor reputation. The final theme that was discussed was: Resident-Care
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Aides find meaning in their work. This theme depicted and supports the literature that
despite the many challenges experienced by the Resident-Care Aide, they want to provide
good care to residents and the positives of the job outweigh the negatives, which raises
satisfaction. The following chapter, Chapter Five, provides a discussion regarding the
significance of the data revealed from this research and their implications in relations to
person-centered care and the assisted living industry, as well as identifies the limitations
of this study and recommendations for future areas of research.
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Chapter 5
SIGNIFICANCE
Introduction
This thesis focused on the person-centered dementia care approach. As was
discussed, person-centered care requires a thorough understanding of the values and core
philosophy of the approach, as well as all eight structural element needed to support
person-centered operational practices. To review, the consensus philosophy, by experts in
the field, includes:
1.
“Every person has his/her own meaning of life, authenticity (personality, spirit
and character history, interests, personal preferences, and needs to continue to
experience life at all stages of dementia. The person is not their dementia illness;
rather the condition.
2. Focus on the strengths of the person living with dementia rather than on what
abilities
and capabilities have been diminished or lost.
3.
“Enter the world” of the person living with dementia to best understand,
communicate with, and interpret the meaning of his/her behaviors from their
perspective” (Dementia Initiative, 2013, p. 22).
Also to review, the eight structural elements essential for supporting the operational
practices of person-centered care include:
1. “Relationships and Community (belonging)
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2. Governance
3. Leadership
4. Care Partners/Workforce (Resident-Care Aide)
5. Services
6. Meaningful Life and Engagement
7. Environment
8. Accountability” (CEAL, 2010, p. 9).
This thesis focused on the delivery of person-centered care in assisted living and
Memory Care. It highlighted the critical role of the Resident-Care Aide in resident-health
and well-being and identified the challenges they experience on the job. Due to the
limited formal education Resident-Care Aides receive, quality dementia care is dependent
on the organization’s provision of all eight structural elements. Without them, personcentered care cannot be created or sustained and the Resident-Care Aide remains
vulnerable to lowered satisfaction and the incidence of turnover will continue to be high.
Discussion of the Findings
In Chapter Four, the findings of this research study were provided in an
ethnography using five distinct themes worthy of discussion in relation to personcentered care. The survey instrument, informal interviews with staff and from the
participant-observations visits during real-time interactions with residents and staff
revealed a rich source of information for understanding the challenges and opportunities
that are presented to the Resident-Care Aide in this assisted living. Because person-
92
centered is multi-faceted, all of the findings are connected to one or all eight of the
structural elements of person-centered care. However, for the purposes of clarity of the
discussion, the issues discovered from the findings are issues connected to the third
structural element: Leadership and ultimately an issue which must be identified and
addressed through the structural element: Accountability.
The findings of this study provided evidence that there was a disparity of personcentered care knowledge between the morning and evening shift staff and a lack of
person-centered care mentoring of the newer staff. Both Ashley and Marie from the dayshift had a strong understanding of the importance of providing a supportive dining
experience, and therefore, were able to provide a therapeutic environment and add
sincerity to their care giving. Marie was able to find ways to honor Ms W.’s preference to
stay busy in the hospice dining hall without compromising the dining experience of the
other residents by providing her with napkins, not being used, to fold. In contrast, the
evening staff members, Amy and Ana, had only recently been hired and were not
knowledgeable, or did not assert their knowledge, on the purpose of the hospice dining
hall. Unfortunately, these newly hired staff lacked mentorship from the more
experienced staff. In particular, despite her ten years of employment with the company,
Sandra did not assert her knowledge of the dining program when she saw that residents
were seated together in one dining hall, nor did she impart coworker support to diffuse
Amy’s frustration when her lack of knowledge regarding the new supervisor upset a
resident’s family member. Consequently, the evening dining service was ridden with
93
distractions which nearly led to Shirley, the resident with diabetes, to be given a nondiabetic dessert; permitted Mary, the more challenging resident, to disrupt the meal by
pouring her drink on Ms. T.; and Ms. W., the resident that prefers be active, to roam
around the dining hall with one shoe and disturb the other residents before they had
finished dining. While separated dining does not guarantee a distraction-free dining
experience, it does allow staff to better monitor the residents and the provision of dining
support. These issues are connected to structural element three: Leadership as it is their
responsibility “to ensure [that staff] are oriented and trained in person-centeredness and
dementia-care competencies” (Dementia Initiative, 2013, p. 20).
The findings also provided evidence that ambiguity lowers satisfaction. Some
staff members reported they were under-supported during their initial training and lacked
supervisory support. They stated that not having access to the radio prevented them from
communicating efficiently with management and from providing quality resident-care.
Both Amy and a resident’s family member experienced lowered satisfaction when Amy
lacked knowledge about the new supervisor and in the absence of mentorship by her
more experienced co-worker, Sandra. These issues, in addition to their connection to
leadership, are connected to the eighth structural element: Accountability. Family and
care partners are key stakeholders in person-centered care and therefore their satisfaction
is essential for the success of the business and quality dementia-care.
Despite the challenges and stressors facing the Resident-Care Aide each day, the
findings of this study also revealed that the close relationships they have with the
94
residents, which are viewed as extended family members, mitigates the dis-satisfaction
and brings meaning to their work. These dispositions represent opportunities for the
company in terms of structural element two: Leadership and structural element four:
Care Partners in terms of staff-retention and stability. Ashley, the R.C.A. who shared an
intimate relationship with Jane, has been with the company for ten years. In that time she
has developed a strong understanding of person-centered care and is dedicated to finding
ways to honor the residents she cares for, making her an asset to the Memory Care
neighborhood. Likewise, Marie, also a ten year employee, has gained a wealth of
knowledge about the organization’s practices and state regulations and is dedicated to
providing ethical care, team work and collaboration between shifts, and has aspirations to
teach one day which is the qualities of servant leadership which are needed in personcentered care organizations. These qualities indicate her leadership potential and which
should be cultivated by the organization into a leadership or mentorship position.
Harnessing such talents promotes the development of the company’s workforce and their
satisfaction and retention with the company.
Implications
The success of person-centered care is dependent on the provision and
maintenance of all eight structural elements. In particular importance with respect to the
findings discovered in chapter four, is the need for leadership. Because of the limited
initial training that these Resident-Care Aids receive, without strong leadership they
cannot develop their knowledge and skill of caring for older adults and persons with
95
dementia in person-centered ways. Not having access to such supervisory and leadership
supports is a major contributing factor in the high turnover rates among this population of
workers. Turnover is costly in terms of hiring and training new staff. Coogle, et. al.,
(2011) “estimated that the staff turnover cost for each [Resident-Care Aide] is
approximately between $1750 and $5000” (p. 521); and the CEAL (2010) estimated “the
annual cost associated with turnover in a typical assisted living residence with 67 staff
and an average turnover rate of 73 percent, to be approximately $84,537” (p. 18). In
addition to monetary costs, turnover compromises the quality of the care provided as new
staff lack the individualized knowledge needed for meeting the needs of persons with
dementia.
There is no dispute, even among the best care communities, that Resident-Care
Aides receive minimal formal training. This coupled by the challenges they experience
on the job and often limited supervisory support, increases their vulnerability to
experiencing role overload, burnout and lowered job-satisfaction (Chou, 2012).
Therefore, it is the responsibility of the governing officials and members of the leadership
team to ensure that the Resident-Care Aides are “effectively oriented, trained and
mentored to build person-centered care skills and competencies” (CEAL, 2010, p. 15).
This means that leaders must model “behaviors that motivate followers to achieve
performance beyond expectations by changing followers' attitudes, beliefs, and values as
opposed to simply gaining compliance” (Yucel, et. al., 2013, p. 2). For Amy, who did not
see the need for separate dining, it is the leadership’s responsibility to help her see the
96
benefits or rewards for changing (Bellows, 1959); which in this case is a reduction of
resident-conflicts and negative behavioral expressions and improvements to resident’s
nutritional-intake and overall well-being. By taking advantage of the natural leaders
within the organization, like Marie, to provide person-centered care mentoring to newer
staff, would fulfill both Amy’s need to learn and Marie’s need to teach and is a positive
contribution to the organization.
Reducing staff turnover and developing critically important aging and dementia
knowledge and skill needed for communicating effectively with residents, staff and
family is vital for improving the satisfaction of stakeholders. When staff is stable, the
Resident-Care Aide benefits from knowing the person with dementia well, and therefore,
is better able to respond to their communicated needs, spoken and behaviorally
expressed, which raises job-satisfaction. For family, this knowledge is priceless as they
can rest knowing their loved one is in good hands, and raises their satisfaction. Raising
their satisfaction is essential because family members are often the deciding persons who
determine the housing placement they see as best for their aging loved one. This is
important because Chou and Roberts (2008) reported that on average, “when turnover
decreased by 20 percent, resident and family satisfaction increased by 30 percent” (p.
209).
Limitations
The research conducted in this thesis provides a unique insight to the nature of
one assisted living community in Northern California. Despite the rich information
97
acquired, there were limitations to this study. The first limitation was the limited number
of visits to the community. It would have been interesting to have made an additional
visit after the newly hired supervisor had time to assume and adjust to her position within
the Memory Care neighborhood to see if the dynamics of the work teams improved
between the day and evening shift and within the same work team. Another limitation
was the survey instrument itself. Due to the busy schedule that the Resident-Care Aide’s
are responsible for following and because of potential language barriers of the staff, my
survey was designed using closed-ended questions with a five point rating scale for
responses. A closed-ended question prevents a richer picture from being discovered and
limits the range of responses that an open-ended question can elicit.
Recommendations
Strengthening the workforce and raising the satisfaction of all stakeholders is
essential for delivering quality dementia-care and attaining a reputable reputation.
However, the degree of improvements that can be made in an organization is dependent
on structural element one: Governance. Governing officials include “the owner, operator,
and the board, and are essential to establishing, implementing, and sustaining the
operational culture within their organization; without their active involvement and
commitment, and person-centered dementia care cannot be created or sustained”
(Dementia Initiative, 2013, p. 20). They must ensure that workforce “policies and
procedures support the [Resident-aide] decision making during real-time interactions
with residents” (Tilly & Reed, 2006, p. 8) and re-design those policies and procedures
98
that do not support staff decision making (Dementia Initiative, 2013). It is imperative the
workforce practices support the relationship-building between the person with dementia
and the Resident-Care Aide by having the appropriate number of staff on shift each day
(Dementia initiative, 2013).
Likewise, it is the responsibility of structural element three: Leadership to ensure
that all Resident-Care Aide are “effectively oriented, trained and mentored to build
person-centered care skills and competencies” (CEAL, 2010, p. 15). In recognition of the
valuable role of the Resident-Care Aide, they must be given the education and resources
needed to enable them to act (Kouzles & Posner, 1995). This means ensuring a more
supportive initial training and ongoing person-centered care mentoring of newer staff by
supervisors and the more experienced, in order develop person-centered care and aging
knowledge needed for raising satisfaction; this is critical for reducing the incidence of
turnover among this population of workers. It is also important that companies cultivate
the talents of the natural leaders within the organization by creating career ladders into
leadership positions for which they can aspire to attain as it is the highest deterrent of
turnover (Coogle, et. al., 2011).
While all components’ are integral the success of person-centered care, the
procedures for the eighth structural element: Accountability are crucial to ensuring that all
of the structural elements, are secured, maintained and producing desired outcomes
through both internal and external methods for analyzing performance (Dementia
Initiative, 2013). This means that family, staff and the resident’s satisfaction is valued,
99
considered and aligned with the core values and philosophy of person-centered care; and
if they are not, governance must take the necessary measures for correcting or realigning
those factors.
Conclusions
Currently, there are more than one million older adults residing in assisted living
communities (Teri, et al., 2005) and more than 50 % of them are affected by dementia
(CEAL, 2010). This coupled by the projection that the incidence of dementia is going to
rise to sixteen million people by the year 2050 (Alzheimer’s Association, 2013), signifies
that the need for both dementia care and assisted living will be astronomical.
Consequently, the need for competent, ethical and stable Resident-Care Aides will be
essential for the provision of quality care. Therefore, it is the responsibility of, and
requires, the commitment of governing officials who are dedicated to ensuring that all
eight structural elements of person-centered care are in place, maintained and producing
desired outcomes (Dementia Initiative, 2013).
100
References
Alzheimer’s Association. (2013). Alzheimer’s disease facts and figures. Retrieved from:
http://www.alz.org/alzheimers_disease_facts_and_figures.asp.
Ball, M., Leproe, L., Perkins, M., Hollingsworth, C. & Sweatman, M. (2009). “They
are the reason I come to work”: the meaning of resident-staff relationships in
assisted living. Journal of Aging Studies, 23, 37-47.
Bandura, A. (2001). Social cognitive theory: an agentic perspective. Annual Review of
Psychology, 52(1), 1-26.
Bandura, A. (1977). Social learning theory. Prentice-Hall, Inc., Englewood Cliffs, N.J.
Bandura, A. (1989). Regulation of cognitive processes through perceived self-efficacy.
Developmental Psychology, 25(5), 729-735.
Bandura, A. (2012). On the functional properties of perceived self-efficacy revisited.
Journal of Management, 38(9), 9-44.
Bass, B. (1960). Leadership, psychology, and organizational behavior. Harper &
Brothers: New York.
Bellows, R. (1959). Creative leadership. Prentice-Hall, Inc., Englewood Cliffs, N.J.
Boeitcher, I., Kemeny, B., DeShon, R. & Stevens, A. (2004). A system to develop staff
behaviors for person-centered care. Alzheimer’s Care Quarterly, 5(3), 188-196.
Boise, L. & White, D. (2004). The family’s role in person-centered care practice
considerations. Aging Matters, 42(5), 12-19.
101
Boone, L. & Makhani, S. (2012). Five necessary attitudes of a servant leader. Review of
Business, 33(1), 83-96.
Brockner, J. (1988). Self-esteem at work: research, theory and practice. Lexington,
MA: Lexington Books.
Brooker, D. & Wooley, R. (2007). Enriching opportunities for people living with
dementia: the development of a blueprint for a sustainable activity-based model.
Aging & Mental Health, 11(4), 371-383.
Brownie, S. & Nancarrow, S. (2013). Effects of person-centered care on residents and
staff in
aged-care facilities: a systematic review. Clinical Interventions in Aging, 8, 1-10.
CALA (2010). Assisted living employees: trained for success. Retrieved from:
http://www.caassistedliving.org/web/pdf/resources/staff_training.pdf.
Center for Excellence in Assisted Living. (2010). Person-centered care in assisted living:
An informational guide. Retrieved from:
http://www.theceal.org/assets/PDF/personcentered%20care%20in%20assisted%2
0living.pdf.
Chou, R. (2012). Resident-centered job satisfaction and turnover intent among direct care
workers in assisted living: a mixed-methods study. Research on Aging, 34(3),
337-364.
Chou R. & Robert, S. (2008). Workplace support, role overload, and job satisfaction of
direct care workers in assisted living. Journal of Health and Social Behavior,
49(2), 208-222.
102
Chung, J. (2009). An intergenerational reminiscence programme for older adults with
early dementia and youth volunteers: values and challenges. Scandinavian
Journal of Caring Science, 23, 259-264.
Coogle, C., Parham, I. & Rachel, C. (2011). Job-satisfaction and career commitment
among Alzheimer’s care providers: addressing turnover and improving staff
empowerment. American Journal of Alzheimer’s Disease & Other Dementias,
26(7), 521-527.
DeCarvalho, R.J. (1991). The growth hypothesis in psychology: the humanistic
psychology of Abraham Maslow and Carl Rogers. EMText: San Francisco.
Dementia Initiative (2013). Dementia care: the quality chasm. Retrieved from:
http://www.ccal.org/wp-content/uploads/DementiaCareTheQualityChasm_2-2013-final.pdf.
Ejaz, F., Noelker, L., Menne, H. & Bagaka’s, J. (2008). The impact of stress and support
on direct care workers’ job satisfaction. The Gerontologist, 48(1), 60-70.
Epp, T. (2003). Person-centered dementia care: a vision to be refined. Canadian
Alzheimer’s Disease Review, 14-18.
Fazio, S. (2001). Person-centered language is an essential part of person-centered care.
Caregiving Challenges, 2(2), 87-90.
Gavin, J. (2011). Exploring the usefulness of a recovery-based approach to dementia care
nursing. Contemporary Nurse, 39(2), 140-146.
103
Gitlan, L., Winter, L., Earland, T., Herge, E., Chernett,N., Piersol, C. & Burke, J. (2009).
The tailored activity program to reduce behavioral symptoms in individuals with
dementia: feasibility, acceptability, and replication potential. The Gerontologist,
49(3), 428-439.
Gotell, E., Brown, S. & Ekman, S. (2007). The influence of caregiver singing and
background music on vocally expressed emotions and moods in dementia care: a
qualitative analysis. International Journal of Nursing Studies, 46, 422-430.
Gray-Stanley, J. & Muramatsu, N. (2011). Work stress, burnout, and social and personal
resources among direct care workers. Research in Developmental Disabilities, 32,
1065-1074.
Hadley, C., Brown, S. & Smith, A. (1998). Evaluating interventions for people with
severe dementia: using the positive response schedule. Aging & Mental Health,
3(3), 234-240.
Harris-Wallace, B., Schumacher, J., Perez, K., Eckert, K., Doyle, P., Beeber, A. &
Zimmerman, S. (2011). The emerging role of health care supervisors. Seniors
Housing & Care Journal, 19(1), 97-108.
Hashmi, M. (2009). Dementia: an anthropological perspective. International Journal of
Geriatric Psychiatry, 24, 207-212.
Huang, H., Shyo, Y., Chen, S. & Hsu, W. (2009). Caregiver self-efficacy for managing
behavioural problems of older people with dementia in Taiwan correlates with
care receiver’s behavioural problems. Journal of Clinical Nursing, 18, 2588-2595.
104
Hung, L., & Chaudhury, H. (2011). Exploring personhood in dining experiences of
residents with dementia in long-term care facilities. Journal of Aging Studies
25(1), 1–12.
Isaac, C., Grifin, L. & Carnes, M. (2010). A qualitative study of faculty members’ views
of women chairs. Journal of Women’s Health, 19(3), 553-546.
Jootun, D. & McGhee, G. (2011). Effective communication with people who have
dementia. Nursing Standard, 25(25), 40-46.
Kane, R. & Wilson, K. (1993). Assisted living in the United States: a new paradigm for
residential care for frail older persons?
Kendell, B. (2011). Culture change in long-term care services: Eden-greenhouse-aging in
the community. Educational Gerontology, 37(6), 506-525.
Kirkley, C., Bamford, C., Poole, M., Arksey, H., Hughes, J. & Bond, J. (2011). The
impact of organisational culture on the delivery of person-centered care in
services providing respite care and short breaks for people with dementia. Health
& Social Care in the Community, 19(4), 438-448.
Kitwood, T. (1990). Concern for others: a new psychology of conscience and morality.
London; New York: Routledge.
Kitwood, T. (1993). Person and process. International Journal of Geriatric Psychiatry,
8(7), 541-545.
Kitwood, T. (1995). Positive long-term changes in dementia: some preliminary
observations. Journal of Mental Health, 4(2), 133-144.
105
Kitwood, T. (1997). The experience of dementia. Aging & Mental Health, 1(1), 13-22.
Kitwood, T. (1998). Professional and moral development for care work: some
observations on the process. Journal of Moral Education, 27(3), 401-411.
Koren, M. (2010). Person-centered care for nursing home residents: the culture-change
movement. Health Affairs, 29(2), 312-317.
Kouzes, J. & Posner, B. (1995). The leadership challenge: how to keep getting
extraordinary things done in organizations. Jossey-Bass Publishers: San
Francisco.
Lee, D. (2012). The role of transformational leadership styles in the home health care
industry. Home Health Care Management Practice, 24, 169.
Maslow, A. (1943). A theory of human motivation. Psychological Review, 50, 370-396.
Maslow, A. (1959). New knowledge in human values. NY: Harper & Brothers,
Publishers.
Maslow, A. (1965). Eupsychian Management. Richard D. Irwin, Inc. and the Dorsey
press.
Maslow, A. (1998). Maslow on management. Wiley, John & Sons, Incorporated.
Mcleod, S. A. (2007). Simply Psychology; Maslow | Hierarchy of Needs. Retrieved from:
http://www.simplypsychology.org/maslow.html
NAPA. (2010). U.S. Department of Health & Human Services. Retrieved from:
http://aspe.hhs.gov/daltcp/napa/NatlPlan.pdf.
106
Palmer, C. (2001). Ethnography: a research method in practice. International Journal of
Tourism Research, 3, 301-312.
Perry, J., Galloway, S., Bottorf, J. & Nixon, S. (2005). Nurse-Patient communication in
dementia: improving the odds. Journal of Gerontological Nursing, 31(4), 43-52.
PHI Facts (2013). Quality care through quality jobs. Retrieved from:
http://phinational.org/sites/phinational.org/files/phi-facts-3.pdf.
PPACA. (2010). HR .3590. Retrieved from: http://www.gpo.gov/fdsys/pkg/BILLS111hr3590enr/pdf/BILLS-111hr3590enr.pdf.
Reimer, H. & Keller, H. (2009). Mealtimes in nursing homes: striving for personcentered care. Journal of Nutrition for the Elderly, 28(4), 327-347.
Residential Compendium. (2007). Residential care facilities for the elderly (RCFEs):
Title 22, Division 6, Chapter 87100-87730. Retrieved from:
http://aspe.hhs.gov/daltcp/reports/2007/07alcomCA.pdf
Rogers, C. (1951). Client-centered therapy: its current practice, implications, and theory.
Boston: Houghton Mifflin.
Rogers, C. (1967). On becoming a person: a therapist's view of psychotherapy. London:
Constable.
Social Security Act, 1986, 101 STAT.1330-165.
Spears, L. (1996). Reflections on Robert K. Greenleaf and servant-leadership. Leadership
& Organization Development Journal 17(7), 33-35.
107
Stone, G., Russell, R. & Patterson, K. (2004). Transformational versus servant
leadership: a difference in leader focus. Leadership & Organization Development
Journal, 25(4), 349-361.
Teri, L., Huda, P. Gibbons, L. Young, H. & Leynseele, J. (2005). STAR: a dementiaspecific training program for staff in assisted living residences. The Gerontologist,
45(5), 686-693.
Thornton, L. (2011). Person-centered dementia care: an essential component of ethical
nursing care. Canadian Nursing Home, 22(3), 10-14.
Tietleman, J., Raber, C. & Watts, J. (2010). The power of the social environment in
motivating persons with dementia to engage in occupation: qualitative findings.
Physical and Occupational Therapy in Geriatrics, 28(4), 321-333.
28(4), 321-333.
Tilly, J., & Reed, P. (2006). Dementia care practice recommendations for assisted living
residences and nursing homes. Chicago: Alzheimer’s Association.
Tse, H. & Chiu, W. (2014). Transformational leadership and job performance: a social
identity perspective. Journal of Business Research, 67, 2827-2835.
Watson, T. (2011). Ethnography, reality, and truth: the vital need for studies of ‘how
things work’ in organizations and management. Journal of Management Studies
48(1), 202-217.
108
Weitzel, T., Robinson, S., Barnes, M., Berry, Holmes, J., Mercer, S., Foster, T., Allen, L.,
Victor, D., Volmer, C., Steinkruge, K., Fredrich, L., Plunket, D. & Kirkbride, G.
(2011). The special needs of hospitalized patients with dementia. Academy of
Medical-Surgical Nurses, 20(1), pp.13-8.
Williams JW, Plassman BL, Burke J, Holsinger T, Benjamin S. (2010). Preventing
Alzheimer’s disease and Cognitive Decline. Evidence Report/Technology
Assessment No. 193. (Prepared by the Duke Evidence-based Practice Center under
Contract No. HHSA 290-2007-10066-I.) AHRQ Publication No. 10-E005.
Rockville, MD: Agency for Healthcare Research and Quality.
Williams, K., Harris, B., Lueger, A., Ward, K., Wassmer, R. & Webb, A. (2011). Visual
cues for person-centered communication. Clinical Nursing Research, 20(4), 448461.
Wilson, K. (2007). Historical evolution of assisted living in the United States, 1979 to
present. The Gerontologist, 47(11), 8-22.
Woods, B. (1999). The person in dementia care. Generations, 23(3), 35-39.
Yucel, I., McMillan, A. & Richard, O. (2014). Does CEO transformational leadership
influence top executive normative commitment? Journal of Business Research,
65(6), 1170-1177. Retrieved from: http://dx.doi.org/10.1016/j.jbusres.05.005
Zimmerman, S. Williams, C., Reed, P., Boutansi, M., Pressier, J., Heck, E. & Sloane, P.
(2005). Attitudes, stress, and satisfaction of staff who care for residents with
dementia. The Gerontologist, 45(1), 96-105.