Table Of ContentMaureen Nash · Sarah Foidel
Editors
Neurocognitive
Behavioral Disorders
An Interdisciplinary
Approach to
Patient-Centered Care
123
Neurocognitive Behavioral
Disorders
Maureen Nash • Sarah Foidel
Editors
Neurocognitive
Behavioral Disorders
An Interdisciplinary Approach to
Patient-Centered Care
Editors
Maureen Nash Sarah Foidel
School of Medicine School of Occupational Therapy
Oregon Health & Science Pacific University
University Hillsboro, OR
Portland, OR USA
USA
ISBN 978-3-030-11267-7 ISBN 978-3-030-11268-4 (eBook)
https://doi.org/10.1007/978-3-030-11268-4
Library of Congress Control Number: 2019934813
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Preface
A Call to Act
We must learn to regard people less in the light of what they do
or omit to do, and more in the light of what they suffer. [Dietrich
Bonhoeffer, Letters and Papers from Prison.]
Simply stated, persons living with dementia suffer. This
textbook serves as a call to recognize and address the suffer-
ing inherent in dementia. Dementia, now referred to as major
neurocognitive disorder (MNCD) in the 2013 edition of the
Diagnostic and Statistical Manual of Mental Disorders (DSM-
5), is conceptualized as a cognitive disorder with concomitant
functional impairment. Although behavioral disturbance is
briefly mentioned, there is little emphasis on neuropsychiat-
ric symptoms in the DSM-5. The authors of this book posit
that there is a practical, clinical, and moral imperative to
remedy the neglect of the impairments that those living with
dementia experience, namely, neuropsychiatric symptoms
(NPS) and the suffering caused by NPS. Suffering can be
decreased only when it is recognized.
We note that Frau Auguste, the first person diagnosed with
what is now known as Alzheimer’s disease, came to the atten-
tion of Dr. Alzheimer in the early 1900s due to persecutory
delusions, hallucinations, screaming, and other neuropsychi-
atric symptoms (Maurer 1997). Similarly, it is the suffering
due to NPS that often brings persons living with dementia
into the health-care system. A large cohort study in Europe
showed that those who were later diagnosed with dementia
were significantly more likely to be treated with antipsy-
v
vi Preface
chotic, antidepressant, anxiolytic, and hypnotic medications
months or even years prior to their dementia diagnosis
(Martinez, 2013). A path to address and minimize these
symptoms, inflicted on both the person living with dementia
and the individuals that love and care for them, is the focus of
our book. The authors offer a roadmap for the assessment
and treatment of those with MNCD.
The philosophical notion of being present – human to
human – and understanding another’s experience is central to
caring for those with dementia. In this book, we travel to the
depths of NPS and its impact on persons living with demen-
tia, as well as those of us who care about and for them. We
propose a paradigm shift to an interdisciplinary team model
that incorporates a deep understanding of cognitive domains
and objective testing of actual functional abilities. We encour-
age interdisciplinary teams to truly understand the areas of
personal strengths contained in each person living with
dementia. By understanding these strengths, we posit that
one can truly develop a strength-based care plan. Person-
centered care is embodied when we accompany the sufferer
on the journey; in fact, the journey itself creates meaning
from the experience (Rose and Armstrong 2003).
The fundamental philosophy underlying person-centered
care is to create a human relationship between the person
living with dementia or other MNCD and those of us who
care about and for them. The personal, rather than clinical,
relationship is central to creating this paradigm shift. We
strive to intervene in the lives of those living with MNCD by
providing education and practical information for providers
and caregivers in a compassionate and pragmatic manner.
Dementia includes a wide spectrum of illnesses and symp-
toms related to cognitive dysfunction, behavioral symptoms,
and functional deficits. We encourage providers to routinely
incorporate assessment and treatment of NPS when working
with those living with dementia. We therefore outline the
NPS considerations that accompany specific types of d ementia
in the context of functional abilities. With this approach, we
Preface vii
promote positive outcomes for those living with dementia
and hope to mitigate suffering.
Through the use of a shared decision-making model, we
are able to transform a person-centered model into a truly
person-directed model. Early attention to advanced care
planning is essential. Teaching the person living with demen-
tia and their family about the trajectory common to their
specific type of dementia allows for realistic planning.
Incorporating palliative care at the time of diagnosis and
encouraging open conversations between the person living
with dementia and their loved ones help to minimize suffer-
ing throughout the disease.
This book also focuses on behavior as communication.
Behaviors are ubiquitous and normal and serve as a principal
mode of communication. In fact, behaviors can become the
only mode of communication for those who have trouble
understanding or using language. We strive to demystify
behaviors by recognizing and characterizing them in terms of
underlying emotional expression. By doing so, we are able to
interpret the message that is being communicated, thus
strengthening the promotion of person-centered care.
In this book, we also address the social justice struggles
inherent in caring for this vulnerable population. We look at
ethnic and racial discrepancies that lead to inequitable distri-
bution of pain management modalities. We raise questions
about the conflicting standards of care for individuals living
with both a dementia and a concurrent psychiatric illness. We
strongly advocate for treatment of psychiatric illness, even in
the context of potential conflict with institutional or regula-
tory guidelines, specifically in regard to well-meaning efforts
for gradual dose reduction (GDR) of psychotropic medica-
tions in care facilities that may cause unintended conse-
quences for individuals with concurrent psychiatric illness.
We advocate that individuals with preexisting psychiatric ill-
ness deserve to have their illness treated without exposure to
risk of the suffering that accompanies decompensation sim-
ply because they also have dementia.
viii Preface
Finally, we provide solid and clinically useful strength-
based care plans from a person-directed viewpoint. We give
examples of ways to teach caregivers how to create meaning-
ful activities by focusing on the journey. Viewing the process
as a road trip without a destination enables the person with
dementia, as well as those that care for them, to discover the
scenery along the way.
With that said, we invite you to use this book as your own
Call to Action on behalf of this vulnerable population and
use it to instill hope for persons living with dementia as well
as those of us that love and care for them.
Human progress is neither automatic nor inevitable... Every step
toward the goal of justice requires sacrifice, suffering, and strug-
gle; the tireless exertions and passionate concern of dedicated
individuals. [Martin Luther King, Jr.]
Portland, OR, USA Maureen Nash
Hillsboro, OR, USA Sarah Foidel
Vancouver, WA, USA Susan S. Rose
References
Bonhoeffer D, Gremmels C, Bethge E, Bethge R, Tödt I, De
GJW. Letters and papers from prison. Minneapolis: Fortress
Press; 2010.
King, Martin Luther Jr. 1929–1968. Stride toward freedom; the
Montgomery story. New York: Harper & Row; 1958.
Martinez C, Jones RW, Rietbrock S. Trends in the prevalence of anti-
psychotic drug use among patients with Alzheimer’s disease and
other dementias including those treated with antidementia drugs
in the community in the UK: a cohort study. BMJ Open 2013:
1–11.
Maurer K, Volk S, Gerbaldo H. Auguste D and Alzheimer’s disease.
The Lancet. 1997;349(9064):1546–9.
Rose SS, Armstrong CJ. “The Journey of the Sufferer.” Arizona
Geriatrics Society Journal 8.1: 18–19; 2003.
Contents
1 Neuropsychiatric Symptoms Are a Core
Feature of Neurocognitive Disorders . . . . . . . . . . . . . 1
Maureen C. Nash
2 The Team Approach for Those with MNCD:
Interdisciplinary and Collaborative . . . . . . . . . . . . . . . 13
Maureen C. Nash
3 Neurocognitive Disorders and Neuropsychiatric
Symptoms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39
Susan S. Rose
4 Evaluating Cognition and Performance Through
Cognitive Domains . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 71
Sarah E. Foidel
5 Behavioral Interventions for Those Living with
Dementia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 99
Sarah E. Foidel
6 Pain in Older Adults with Neuropsychiatric
Symptoms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .115
Susan S. Rose
7 Frailty, Resilience, and Palliative Care
Considerations for those Living with Dementia . . . .135
Maureen C. Nash
8 Strength-Based Person- Centered Dementia
Care: Activities of Daily Living . . . . . . . . . . . . . . . . . .157
Sarah E. Foidel
ix
x Contents
9 Person-Centered Care and Care Planning
for Those with MNCD . . . . . . . . . . . . . . . . . . . . . . . . . .199
Sarah E. Foidel, Maureen C. Nash,
and Susan S. Rose
Index � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � � �233
