TDavis_GRO651_IntegrativePaper

Trish Davis GRO651 April 17, 2014
Trish Davis
GRO 651
Integrative Review
Does the Implementation of Person-Centered Care as a Standard of Long Term
Care Demonstrate a Mutually Beneficial Outcome Between Staff Performance and
Resident Response
Abstract
Background:
Dementia is a degenerative brain disease that can cause behavioral problems such as
agitation, apathy, depression or aggression, which may lead to stigma and
institutionalization. Once a person with dementia is in long term care, the treatment for
disturbing behaviors is often the use of a medical model of antipsychotic drugs and task
protocol as opposed to a more holistic plan and humanistic model of care based upon
personhood. This is often due to lack of training, staff burden and not knowing the
resident as a person, only as a respondent to a disease. This paper examines the concept
of person-centered care, its benefits, and the training and sustainability of this model
within long term care settings, as well as positive outcomes for staff and residents.
Methods:
A search of the literature on person-centered care using the terms, Alzheimer’s disease,
personhood, person-centered care, dementia and long term care produced 47 applicable
articles and books for this paper, and 30 were included in this review. Assessments and
training models were analyzed, including Validation Therapy (VT), Dementia Care
Mapping (DCM), VIPS Communication Skills Training (VIPS), the Person-Centered
Care Assessment Tool (P-CAT) and the Personhood in Dementia Questionnaire (PDQ).
Additionally, study outcomes were summarized which analyzed resident responses to
person-centered care and positive influences resulting from person-centered care staff
training.
Results:
The aforementioned assessments and training models were valid and reliable tools for
implementation and use in the care of dementia residents in long-term care. In particular,
VT and DCM were meaningful care models, and were used in ways to investigate better
care needs and outcomes for residents utilizing person-centered care. The VIPS, P-CAT,
and PDQ training modules were useful in identifying and implementing ways for staff to
create impactful person-centered care for their residents. These instruments and
interventions are the beginning of an important transition of care for persons with
dementia from a medical, clinical model to one of personhood and of a holistic nature.
More research and discussion must take place to evaluate the best models for person-
centered culture change within the industry of long term care.

Conclusion:
Person-centered care methods help long term care staff identify areas of individual,
physical, emotional, or environmental need to reduce a resident’s negative behavioral
responses. This can improve care and reduce staff burden or job-related stress. Staff that
is trained in person-centered care can increase a resident’s comfort and well being,
making it easier to care for that individual in a meaningful way. Additionally, “knowing
the resident, and not just “treating” a disease validates personhood and allows for
increased positive relationship of care between staff and individual with dementia as well
as a decrease in negative behavioral symptoms.
Introduction
The facts and figures for Alzheimer’s disease (AD) are staggering, and as they continue
to increase, healthcare for older adults, particularly those with memory loss and their
caregivers, soar into a stratosphere the likes the United States has not yet seen. As of
2013, 5.4 million Americans have been diagnosed and are living with AD (the number of
cases that remain undiagnosed are not known), and by 2050 that number is expected to
increase to 16 million. Alzheimer’s disease is now the 6th leading cause of death in the
United States (the 4th leading cause for African Americans), and in 2012 carried a price
tag for care of $200 billion (Alzheimer’s Association, 2013). Throughout this paper, the
focus and reference will be on the umbrella of dementia, which includes Alzheimer’s
disease, Lewy body, vascular, and frontotemperal memory impairments. Dementia is
widely referred to as Alzheimer’s disease because 60-80% of all dementias fall into that
particular diagnosis. The implications for person-centered care culture change are
applicable for all types of dementia.
Facing this surging epidemic has tapped the attention of national leaders and created a
skeleton of policy. However, addressing a framework of how to implement policy and

change in order to carry the weight of caring for people with dementia and their
caregivers has been elusive. In 2011, President Obama signed the National Alzheimer’s
Project Act (NAPA) and there have been announcements and hearings from national
offices calling for person-centered care for those with dementia in hospital, home health
and long term care settings (HHS, 2013).
Despite these policy intentions, little has been done to address on a national level the
importance of person-centered care or how to implement such care in institutions for
those with dementia, especially in light of heightened antipsychotic drug medications
used in treating dementia patients (Love, 2013). The historic norm of healthcare
practices in the U.S. has been based on a clinical, task oriented, medical framework, yet
the long term, prolonged nature of dementia demands a culture change which reflects a
humanistic, care oriented, holistic framework that is best expressed in person-centered
care.
Individualistic Needs
Due to the diverse population, and age differences of those affected by AD (those with
AD under age 65 are the fastest growing population of dementia diagnoses) and other
dementias, a “one size fits all” medical based approach to caregiving (professional and
non-professional) will not suffice, and one of the benefits of person-centered care is the
focus of knowing and understanding the person with dementia as an individual. An
individual who retains life dimensions that contribute to a multi-spectrum way of caring
for that person in a whole, humanistic manner (Maslow, 2013).

A person-centered care model represents four core life dimensions of an individual,
which build upon strengths rather than highlighting deficiencies, and honors his/her
values, preferences and life story. These four life dimensions are biological (medical
history, current physiological needs), psychological (autonomy, self-esteem, feeling
safe), social (belonging, accepted, being known, relationships) and spiritual (belief
systems, world view, values) (Love, 2013).
As noted by Fitzsimmons and Buettner (2002), there is a spiral of deterioration that
happens in dementia. There is an indication through research that 70% of people
suffering from dementia display disturbing responses, which lead to increased disability,
which lead to greater disturbance in behaviors, resulting in caregiving difficulties and
eventually institutionalization, where the greatest deterioration occurs (Fitzsimmons
2002).
When a loved one is placed in a nursing home, a detailed life history, likes and dislikes
survey is usually completed at admission to help plan future interventions. One such
tool, called the Treatment Routes for Exploring Agitation (TREA), “provides a
systematic methodology for individualizing nonpharmacological interventions to the
unmet needs of agitated persons” (Cohen-Mansfield, 2007, p. 909). Using the TREA,
collected data from caregivers (informal and family) and observations of the individual
formulate a treatment plan to best meet the need responses of the older adult (Cohen-
Mansfield, 2007). A treatment plan based on one’s personal background and

physiological needs is a better holistic treatment approach as opposed to immediately
deferring to medication.
According to the American Geriatrics Society and American Association for Geriatric
Psychiatry Expert Panel on Quality Mental Health Care in Nursing Homes (2003),
nonpharmacological interventions are recommended before prescribing drugs for
treatment (Cohen-Mansfield, 2011). With the emerging basis on the efficacy of these
person-centered treatments, it is important to present more studies that support training
and implementation of early and sustained nonpharmacological, multimodal interventions
for the overall benefit of persons with dementia and their caregivers.
An emphasis on person-centered interventions has been proven to be an important aspect
of successful nonpharmacological therapy. Providing enriched environments based on a
person’s needs, stage of disease, history and preferences are beneficial in retaining
cognitive and physical functioning for a longer period of time (Burgener, 2007).
Emphasis should be made on “seamless care” beginning at home, and supported by
community-based programs to provide respite to caregivers, to provide socialization for
an individual, and to prevent decline (Burgener, 2007).
In order for health care providers, caregivers within long-term care and similar
institutions to create culture change and implement person-centered care models into
their facilities, there must be empirical evidence and cohesive frameworks for training,
implementation and sustainability. This paper will first summarize person-centered care

and provide evidence that it is a necessary component of dementia caregiving. Second,
the paper will review the current literature on the philosophy of person-centered care and
its role in long term care staff performance and improvement of resident need-driven
behavior responses. Lastly, there will be a review of researched based training programs,
their implementation and sustainability.
Responses as opposed to Simply Behaviors
The nature of AD and other dementias is like a series of deadly attacks, destroying
neuronal circuitry, ending distinct pathways of thought, reasoning and memory, leaving
only select well-worn roadways intact as the deterioration from the disease pursues hearty
portions of its innocent prey. This individual has progressively limited choices of
pathways to go to that lead to logical, filtered, or memory-dependent communication to
everyday stimuli or circumstances (“I am in pain, I am afraid, I am thirsty, I am lonely”).
Throughout the course of dementia research, the tagline to an individual’s reactions to the
disruption of cognitive thought, memory and discipline has been labeled as “behaviors.”
The word behaviors connote choice (although the definition states that behaviors are
responses, and may or may not result from a choice); if one behaves badly, it is assumed
that one had the choice, or free will to behave in an opposite manner. This, within the
cultural definition of behavior is the presumption of choice. An individual with AD or
another dementia has progressively limited freedom to choose how he/she reacts to
internal or external stimuli or circumstances. In this paper, I will exchange the word
“behavior” with “behavior response” to describe a symptomatic reaction to unmet

environmental, physiological, nutritional, social, psychological or biological needs.
Therefore, one’s symptoms to an unmet need (pain, fear, thirst, loneliness) often
expresses itself in agitation, apathy, frustration, depression or aggression. I propose that
this type of communication is due to the lack of choice from limited brain circuitry as a
result of the disease, and thus, these should be referred to as behavior responses as
opposed to behaviors.
Person-Centered Care
What is it and why is it needed?
The fundamental core of person-centered care is the notion of personhood. That is, an
individual continues to exist beyond only biological functioning as cognitive impairment
ensues, and is in fact a complex, dynamic person with experiences, beliefs and
preferences who continues to experience life in an interactive way. Key components of
personhood are treating the person, not the disease only; recognizing an individual’s
unique history and preferences; ceasing dehumanization; maintaining dignity and
autonomy and valuing the centrality of relationships (Byrne, 2012). In 1993, Tom
Kitwood published a theory for the need of person-centered care for persons living with
dementia. His theory of personhood espoused an environment that attended to
humanistic basic needs such as comfort, identity and inclusion as well as personalized
understanding and interactions for one’s personal routines and lifetime experiences
(Black, 2010).

Person-centered care is an organic requirement in the care of persons with dementia in
order to decrease the use of antipsychotic medications for nursing home residents, and to
reduce negative responses from residents associated with unmet needs. The Inspector
General of the U.S. Department of Health and Human Services has cited the overuse of
antipsychotic drugs given to persons with dementia, and a hearing of the U.S. Senate
Special Committee on Aging called for alternate interventions to treat negative response
expressions by persons with dementia (Love, 2013). Although this serious issue has been
given attention on the federal level, there have been two decades of talk by leaders in
aging and health concerning person-centered care and no paradigm shift towards an
accepted framework.
Alternatively, there is a fractured national understanding of dementia and person-centered
care, and hesitancy for many long term care providers to invest in training and
sustainability of person-centered care. There remains a mentality of clinical, task-
oriented care backed by a medical model, which treats the disease, not the person.
Within the past ten years, however, research has begun to shed light on evidence that
person-centered care is a natural, holistic model of caring for a person with dementia that
enables long term care staff to provide more effective and humanistic care, while
reducing antipsychotic drug use and negative responses by residents.
Need Driven Behavior Responses
For every action, there is a reaction and for every unmet need there is a response. The
natural, human response to needs by a person with dementia takes place in the form of

verbal or nonverbal communication and when not understood, is commonly interpreted as
negative behavior. Four common behavior responses to unmet needs are agitation,
aggression, anxiety, and apathy, or “the four A’s” (Zeisel, 2010).
Agitation presents as nervous behavior, and is usually a response to boredom from an
inability to initiate activities. Aggression is expressed through shouting or physically
striking out. It is the reaction to not understanding what is happening, or to one’s
situation (the resident wants to leave “to go home,” but is redirected away from the
doors), and results from not being able to control impulses. Anxiety produces worry and
nervousness, and results from not being able to engage in actual time or experience
causal relationships. Perhaps it is also a memory or experience within a person’s psyche
that produces anxiety. Apathy is the absence of affect and could be a result of the
inability to plan for the future and have nothing to look forward to. Due to the fact that
these residents cause few problems, they are often overlooked and offered little
stimulation (Zeisel, 2010).
A theory-based model for response communication is the Need-Driven Dementia-
Compromised Behavior model (NDB). This was first introduced in research by Algase
and colleagues (1996) and explained that response systems stem from background risk
factors such as cognitive deficits and physical function as well as proximal precipitating
factors in one’s physical and social environment. The verbal or nonverbal
communication of NDBs presents itself in passivity or agitation, or one of the “four A’s”
(Kolanowski, 2011, Zeisel, 2010).

According to a study by Kolanowski (2011), one’s functional level and lifetime
personality interests determine enjoyment, engagement and time on task in an
individualized activity as opposed to a non-individualized activity. This randomized,
control trial of 128 residents with dementia concluded that NDBs like agitation and
passivity can be treated with activities that are determined based on one’s interests and
function level.
This leads to an important aspect of person-centered care as it relates to need driven
responses. Knowing an individual, their life story, who they were and who they are as a
person is vital in predicting and understanding one’s responses to internal or external
stimuli and environment. Staff often treats the behavior response rather than the
underlying cause. For example, if a resident has an undetected urinary tract infection,
that person will experience pain. However, if communication functioning is
compromised due to dementia, that individual might pound his/her fist or call out to
express the need to stop the pain. The staff might misinterpret that behavioral response,
and remove the person from a public area, or try to redirect the behavior instead of
treating the cause of the response. Allowing the underlying primary symptom to continue
leads to cascading responses layered upon the original issue. This is a common
precipitator to antipsychotic medication use of long term care institutions to “treat” these
responses and not investigate to find the primary cause of behavior (Kovach, 2005).

Validation Therapy
An effective way to understand underlying needs and human experiences of a person
with dementia is a technique developed by Naomi Feil during the 1960’s known as
Validation Therapy (VT). This way of knowing an individual with memory and
cognitive function loss uses empathetic listening, emotional and physical mirroring and
therapeutic touch to join that person in his/her own reality (Parkinson, 2008). In utilizing
this therapy, a caregiver examines and listens to the responses of the individual with
dementia and identifies the emotional undercurrent of that person’s communication. In
recognizing physical pain, fear, sadness or boredom, the caregiver can then step into the
resident’s reality to try to understand the underlying cause of the particular behavior
response (Feil, 1989).
For example, a female resident might call out at certain times of the day, “somebody help
me, somebody help me.” Without knowing her background story but utilizing VT, a staff
member might say, “it sounds like you are afraid, is that how you feel right now? I am
here with you, and everything is all right. What can I do for you to help?” Instead of
telling her to calm down or be quiet, the caregiver is reassuring her that she is not alone
and is validating her emotional feeling. This may quell the response and allow the
resident to regain peace. If the staff member knew the background to this woman’s story,
perhaps he/she would have even more information about the behavior response, which is
anxiety due to finding her husband dead in their bed 20 years ago. The memory is strong
and resurfaces often, causing her worry, fear and panic.

The goal of VT is not to change the person with dementia, but rather to give that
individual a place through which painful feelings, unresolved conflicts and inhibiting
physical experiences can be expressed, and for that individual not to feel alone in those
expressions (Parkinson, 2008).
Hierarchy of Needs
Each person with dementia has needs, as does every human, however these needs as
discussed earlier may not be communicated effectively due to cognitive decline.
According to a review by Scholzel-Dorenbos (2010) of unmet needs in dementia, there is
a hierarchy of needs based upon Maslow’s hierarchy of needs model that assesses gaps of
care for persons with dementia. The author analyzed studies utilizing three dementia-
specific needs instruments and incorporated these findings into two of her previous
studies, which looked at dementia health-related quality of life (HRQoL). From this, a
new theoretical framework of consequences of needs and HRQoL was created to assess
possible unmet needs of persons with dementia.
The resulting Hierarchy Model of Needs in Dementia (HMND) presented five areas,
which if met, could promote a positive HRQoL in a person with dementia. This model
(figure 1) is in pyramid form, much like Maslow’s original hierarchy of needs (Maslow,
1943), and represents areas in importance from the bottom up. In other words, the higher
a person with dementia reaches on the pyramid, the less disturbing behavioral responses
may occur (Scholzel-Dorenbos, 2010).

Interventions for
these needs should
be individualized
to match a
person’s cognitive,
physical and
sensory abilities
and should take
into account one’s
lifetime roles, habits and values (Fitzsimmons, 2002; Kovach, 2005; Scholzel-Dorenbos,
2010).
Assessments and Training
Due to an increase in life longevity, there is a corresponding increase in AD and other
dementias. Utilizing a person-centered care environment, especially in nursing home
settings for this growing demographic, emphasizes care based on human needs such as
comfort, social connectedness, personhood, validation and dignity (Black, 2010).
Unfortunately, nursing homes are understaffed and lack education and training to
implement interventions and therapies that utilize person-centered care. Communication
between the family and staff are vital to encourage person-centered care, however,
enabling one to remain in the community is best, and is where person-centered care
naturally occurs due to continued familiar surroundings. The validation of personhood
leads to ways in which to combat the stigmas and stereotypes of dementia, and give

dignity and purpose to the individual diagnosed with this disease.
Dementia Care Mapping
Dementia Care Mapping (DCM) was born from the work of Tom Kitwood (1997), and
was first referred to in his book, Dementia Reconsidered as “ a serious attempt to take the
standpoint of the person with dementia, using a combination of empathy and
observational skill” (p.4). This assessment tracks residents with dementia in a nursing
home setting during continuous set time frames over a specific time period. For example,
a trained observer, or “mapper” will track the responses of up to five residents during
five- minute time frames over a six-hour period. The mapping occurs in communal
spaces. After each time frame, two types of codes are used to document activity or
inactivity of each resident, the Behavior Category Code (BCC) and well- or ill-being
value (WIB). There are also codes to evaluate staff reactions, positive or negative
towards the resident, which can assess person-centered care (Brooker, 2005).
In her review, Brooker (2005) analyzed the consistency of reported behavioral terms in
34 studies utilizing DCM. The most frequent BCCs documented in long term care
involved social interactions, watching, and eating and drinking. Long-term care
communities with low overall WIB codes coded residents as withdrawn and displaying
repetitive self-stimulation, which could connote lack of activity, social stimulation,
depression or apathy. The long term care communities with higher WIB scores coded for
creative activity, exercise and engaging in media. This would predict that offering
engagement to residents might positively affect well-being, or quality of life.
It is interesting to note that during DCM training, mappers are taught to use empathy

towards the viewpoint of the resident with dementia and to use this in coding decisions
(Brooker, 2005). In addition to being an evaluation tool for resident responses, activity
and well being, it is commonly used as a way to provide feedback to staff in order to
motivate or improve performance and competencies. In this way, DCM can provide a
way to pinpoint resident needs so that staff can create individualistic interventions to
improve quality of life (Ervin, 2012).
A problem with DCM is how to implement its findings. Although it is useful to identify
gaps in person-centered care and quality of life issues, it does not on its own change the
quality of care. In many studies, DCM serves as the intervention, observational and the
outcome measure, but is not a tool of change, therefore should be used accordingly
(Brooker, 2005).
VIPS
Based on Dawn Brooker’s elements of person-centered care for persons with dementia,
Passalacqua (2012) developed a communication skills intervention for use by
paraprofessional caregivers in long term care facilities. Brooker (2004), based on a
review of person-centered dementia care literature, identified four main themes of this
type of care: valuing a person with dementia and his/her caregivers, individual
recognition of a person with dementia, seeing the perspective of one with dementia, and
providing a social environment for a person with dementia (V-value; I-individual; P-
perspective; S-social environment).
This intervention was part of a study in which 26 paraprofessionals (PFs) in a long term
care facility were trained during four interactive sessions to improve their communication

and caregiving skills for dementia residents within the facility. Paraprofessionals, or
nursing assistants are usually on the frontline of long-term care, receive low wages and
typically are required to care for multiple behavioral response issues at one time. During
focus groups in training sessions, PFs identified resistance when attempting care,
emotional needs, limited communication, aggression, and lack of coping ability as the
most challenging when caring for a resident with dementia.
Each of the four, one-hour sessions provided PFs exercises and education on how to
maximize their interactions with residents and improve their quality of care in order to
create a more rewarding atmosphere. The four components of VIPS were woven into the
sessions using role-playing, discussions, videotaped vignettes, power point presentations
and group activities. The training was done outside of work hours and the participants
were financially compensated.
Post-intervention assessments given six weeks after the training were positive, indicating
a deeper appreciation by PFs for residents’ needs. The caregivers were employing
alternate ways of communicating with dementia residents, and spent significantly more
time engaged in resident person-centered leisure activities after the intervention. Overall,
a more holistic, person-centered care was given to residents and the level of staff burden
decreased. The author suggested further research be done on the sustainability of VIPS
training using DCM in addition to staff self-report surveys (Passalacqua, 2012).
P-CAT
The Person-centered care Assessment Tool (P-CAT) was developed by Evardsson (2009)
to allow long-term care staff a way to measure the person-centeredness of their settings

and facility care. Upon evaluation of responses from 220 care staff, persons with early
stage dementia, and family caregivers, a 13-item instrument was tested and measured for
validity and reliability. The subsequent scale measures the following aspects of person-
centered care: Maintaining personhood; taking the patient’s standpoint; acknowledging
personal experience; and social environment as a therapeutic agent. It evaluates the
personalization of care, amount of organizational support and the degree of
environmental accessibility. Additionally, it is able to identify areas for staff
understanding needs and implementation of more meaningful interventions of care.
When staff are able to identify assets and liabilities of care for their residents, they are
then able to improve care to allow for a more person-centered care environment. This
could improve resident behavioral responses and therefore increase positive staff
interactions. A limitation to this training is that is lacks the implementation of
personalized communication skills that is woven into the VIPS training. It is important to
identify ways in which to better care for residents, but communicating that care is equally
as important.
PDQ
The Personhood in Dementia Questionnaire (PDQ) was created to operationalize the
concept of personhood in order to test the hypothesis that beliefs about a patient’s status
as a person influences how care is provided (Hunter, 2013). In particular, in light of the
high usage of antipsychotic medications, pain under-management was a primary focus in
this study on beliefs about the personhood of a resident with dementia. When unable to
communicate pain effectively, residents with dementia often cry out or become

aggressive when trying to express this need. These expressions can be misinterpreted by
staff as a negative behavioral issue, and thus treated with an inappropriate intervention.
The results of focus groups and surveys of 273 nurses and nurse aides in developing this
instrument support the hypothesis that, residents with dementia, as opposed to cognitively
normal residents, were more likely to receive anxiolytic medications (prescribed for
anxiety) as opposed to analgesic drugs for pain. The PDQ highlights the need in long
term care settings to further evaluate and understand the individual needs of a person with
dementia, particularly utilizing person-centered care methods. It also aids long term care
staff in identifying areas of resident assessment in which personhood should be
implemented into decision-making and care.
This particular assessment tool is useful for developing strategies of care that become
part of a facility’s plan of care, and can be useful in training staff. However, it does not
present a plan of action to implement the change needed, nor how to train the staff in
understanding or communicating that change into care.
Conclusion
Over the course of our recent history, the United States has stepped up to extricate its
citizens from the grasp of overpowering diseases. There have been movements to stamp
out heart disease, AIDS and breast cancer with billions of dollars spent on research for
each. The Alzheimer’s epidemic is fast becoming a disease that will bankrupt our
country, and has no definitive cause, treatment or cure. Taxpayers in the U.S. spend 400
times more on AD care than is spent on Alzheimer’s research, and it is estimated that the
cost of AD will exceed $1 trillion annually by 2050 (Alzheimer’s Association, 2013). In

light of these staggering numbers, the leaders in the AD field and government agencies
like Health and Human Resources are struggling to keep up with the growing numbers of
individuals who have this disease and other dementias. As we, as a nation wait for
substantial medical treatment, or a cure, there is a growing movement to incorporate
more holistic, dignified care into an antiquated medical-based model. This culture
change is also trying to catch up with an overwhelming number of adults who need
significant care over a long period of time, and will eventually need long-term skilled
nursing care.
There is no agreed upon conceptual framework for incorporating person-centered culture
change into long-term care, however, groups such as the Dementia Initiative, Pioneer
Network, the Greenhouse Initiative, and Eden Alternative have put substantial efforts into
changing the face of dementia care. Not only is person-centered care a core value for
maintaining dignity and personhood, it is necessary in light of the overuse of
antipsychotic medication use in nursing homes. The Center for Medicaid and Medicare
Services (CMS) has cited person-centered care as the first principle of nursing home care
in order to reduce the prescription of antipsychotic medicines (CMS, 2013).
More research should be funded, coinciding with medical research to operationalize best
practices for training, implementing and sustaining person-centered care for residents of
long-term care. Those individuals with AD or another dementia can no longer
communicate in a conventional sense for themselves, but they have a history,
personhood, and a lifetime set of values, which help them to express their needs. These
needs can be met in an empathetic and respectful way through person-centered care that
helps to retain one’s personhood and dignity. This method of care can also play a major

role in redefining staff perceptions of residents, job expectations and can reduce work
related stress and burden.
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