Dementia

Beyond
Disease
REVISED EDITION
 Prologue
Read This First (and Last)!

My first book, Dementia Beyond Drugs: Changing the Culture of Care

(Power, 2010; second edition [2017]), was an exercise in delayed grat-
ification. It demanded a great deal of patience from the reader, as I
slowly unwrapped an argument for a new approach to this constellation
of experiences we have labeled “dementia.” I even cautioned readers
not to jump to the end to try and find the “answers.” Some readers no
doubt enthusiastically absorbed many of the suggestions in the last part
of the book, but those who were able to remain “in the moment” tell
me they found their rewards throughout.
This time around, I will not make you wait for the punch line. I
have put it right here, at the top, so that even the casual reader will
know where I am heading. This book discusses what I consider to be
the central problem that plagues us in our work to create holistic, per-
son-centered approaches, along with a new framework to help us move
forward in the most successful way.
As I type these words, a vigorous debate rages over the proper way
to respond to people living with dementia who exhibit various forms of
distress. The frequent use of psychotropic drugs has been challenged—

1
2  Dementia Beyond Disease

first by a small but growing minority of authors and practitioners, and

more recently fueled by increased media attention and government ini-
tiatives to reduce the use of such medications. Predictably, advocates of
drug use are pushing back, and the debate rages on.
At one extreme are those who view dementia purely from a re-
ductionist, biomedical perspective. This view holds that distress is the
product of damaged brain cells and the chemical imbalances that r­ esult.
They view such distress as “behavioral symptoms” and are quick to use
such labels as “psychosis” to describe what they see. Drug therapy, in-
cluding the use of antipsychotics, is a central part of their approach.
At the other end are the advocates of holistic, person-centered ap-
proaches. These disciples of the late Tom Kitwood, who have built upon
the concepts he espoused in his seminal work, Dementia Reconsidered
(Kitwood, 1997), look to unmet needs as a genesis for much of the dis-
tress we see. They believe that drugs are not the answer, and that distress
should be met with an array of “nonpharmacological interventions.”
In between these camps are the diplomatic “fence sitters,” who al-
low that one should try nonpharmacological approaches first and fore-
most, with judicious use of psychotropic medications when the former
are unsuccessful. The latter two groups compile algorithms and laundry
lists of interventions that can be tried for a person who is distressed.
Most of the available education on nonpharmacological approaches is
centered on generating such lists and teaching how best to apply them.
In fact, all three camps are wrong. Or, if “wrong” is too strong a judg-
ment, all three camps are addressing the wrong aspect of the situation.
We have framed the debate around viewing distress as the problem, rather
than as a sign of something larger, and, therefore, the vast majority of our
approaches are reactive, not proactive. This explains why no amount of
medication, and no array of nonpharmacological interventions, serve to
eliminate the distress experienced by most people who live with demen-
tia. It explains why both the medications prescribed to “calm” people and
the nondrug interventions that are designed to do the same need to be
administered over and over, day after day, week after week.
Granted, there are times when a situation suddenly presents itself
and some sort of response is needed. But that acute situation should not
be seen as the problem, and the subsequent intervention should not
frame the way in which we try to meet the person’s needs over time,
with or without the use of drugs. Let us take a look at each of the two
approaches.
 Prologue  3

Pharmacological Approaches

In Dementia Beyond Drugs, I devote a substantial chapter to critiquing the

use of medications, particularly antipsychotic drugs, for the various personal
expressions seen in people living with changing cognitive abilities. In that
chapter, I also challenge the design, execution, and analysis of the studies
that purport to show a benefit of such medications and review the emerg-
ing research showing the previously unrecognized dangers of these medica-
tions. I discuss the ways in which we improperly measure “improvement”
and how we often make incorrect assumptions about cause and effect. Fi-
nally, the chapter concludes with a number of stories about the “awaken-
ings” I witnessed when these medications were successfully withdrawn.
I will not revisit that very thorough discussion here. Suffice it
to say that over the past few years since the first edition of Dementia
Beyond Drugs was written, further studies have strengthened those
challenges and revealed these drugs to be even less effective and riskier
than previously thought. Updated evidence is presented in the second
edition of Dementia Beyond Drugs (2017).
I make other observations about the drawbacks of drug therapy
at various points in this book. These observations, however, build on
a foundation set forth in my first book, and the reader who wishes to
fully engage in these debates might wish to review that discussion (see
Chapter 2, Dementia Beyond Drugs).
At this juncture, all I will add is that perhaps the greatest argument
against the biomedical view that supports the use of such drugs is the mul-
titude of cases in which a person’s distress was solved through other ap-
proaches. These cases put the lie to the idea that we somehow needed to
change that person’s brain chemistry in order to relieve distress. Every time
we see such a success, we should wonder how many other people’s needs
could be met without drugs, if we only could better identify the root causes.

Why Nonpharmacological
Interventions Do Not Work
This provocative heading may seem out of line for the author of a book
called Dementia Beyond Drugs. Rest assured, I remain firmly rooted in
the belief that most distress arises as expressions of unmet needs, and
that drugs are not the answer. The problem lies not in that underlying
4  Dementia Beyond Disease

philosophy, but in how it is applied. I will devote a bit more space in

this book to this argument, because it is extremely important and not
as easily understood.
To begin with, I have two problems with the term nonpharmaco-
logical interventions: nonpharmacological and interventions. The first term
defines the approach by what it is not, rather than what it is. It keeps
medication use as our reference point, in spite of our rejection of that
approach. Even if it does not explicitly state that a drug approach is the
gold standard, it implies that it is at least a viable option, an “either–or”
choice for the care partner. This is not the language that will help us
shift our paradigm.
The second term brings to mind the act of “holding an interven-
tion.” In that context, an intervention is characterized by a group of
caring people who lure a friend or relative to a meeting place under
false pretenses, then hold him captive while they confront him about a
behavior of his that they feel is harmful, and demand that he get back
on the right track.
What strikes me is how much our nonpharmacological interven-
tions follow this same pattern. Generally they are devised and applied
by a group of caring friends, relatives, or paid staff in response to a
behavior that we have judged to be potentially harmful. There are of-
ten false pretenses involved, whether through distraction, diversion, or
even various degrees of deception (those “little white lies” we often use
to try to calm someone). Finally, we tend to remain centered on the
ultimate goal of bringing the person back in line with what we feel is
best for him, either not considering what it is the person truly needs or
discounting his stated needs as not being “realistic.”
There are many other reasons why nonpharmacological interven-
tions fail to provide a solution to distress, including the following:
1. They are reactive. They respond to a moment of crisis, and while
they may calm a situation, they often do not seek to understand
the underlying causes and how they can be prevented in the fu-
ture. For example, if a person in distress responds to being moved
to a quiet place and being given a hand massage, then that ap-
proach will be applied again and again, ad infinitum, without
turning our attention to how to stop the distress from recurring in
the first place.
2. They are treated like doses of pills. “Fold washcloths once a day” or
“Pet a cat three times a day before meals,” do not explore the root
 Prologue  5

cause of the distress. As a result, like doses of pills, the effect of

such interventions will wear off and have to be readministered.
3. They are not person-directed. A typical list of possible interven-
tions is often little more than a generic algorithm to apply in a
trial-and-error fashion, based on what we feel might work. We
may hit on something that seems to work once or twice and stop
there. What we too often fail to do is to understand the person
and let her unique perspective, needs, and abilities drive our ap-
proaches. As a result, they are often devoid of meaning for the
individual.
4. They are superimposed upon the usual living environment and ap-
proaches to care. If the living environment and approach to care
are an ongoing cause of the distress, then we can never achieve
lasting success.
5. They are not tied into domains of well-being. This is the main theme
of the book, and will be explored in detail in the pages that follow.
In summary, “nonpharmacological interventions” as they are most
commonly applied are attempts to provide person-centered care from a bio-
medical mindset. As such, it is only a half-hearted paradigm shift, and
so it falls short.
The fatal flaw with either approach is a focus on the distress as the
problem, rather than as a sign of a larger issue. I often equate it with treat-
ing pneumonia with cough syrup. People with pneumonia often have a
very bothersome cough. If a doctor sees the cough as the primary prob-
lem, then taking the cough away becomes the goal, and cough syrup is
prescribed. That may quiet the cough for a while, but eventually the
person will get worse, because the pneumonia is still festering and has
not been properly addressed.
In a similar manner, if we see the person’s distress as the prob-
lem, then our primary goal becomes the elimination of the distress.
This explains why so often we become stuck in the “pill paradigm.”
Of course, just like the cough syrup, a pill might quiet one’s distress
for a while (often through some degree of sedation). We get in trouble
when we conclude that we have successfully addressed the primary
problem, when all we really have done is covered it up by calming the
expression. And the person will eventually get worse, either because
we did not address the real cause or because the pill itself is causing
additional harm.
6  Dementia Beyond Disease

What Is Our Primary Goal?

All of the above suggests that, in spite of our efforts to reduce the use
of potentially harmful medications, we are still not going about it the
right way. Our federal government is right to be concerned about the
overuse of such medications in people living with dementia, but a di-
rective to reduce medication use by “X” percent by a given date (and
the pledges of long-term care organizations to do so) puts the cart be-
fore the horse and sets us up for short-term gains that cannot be sus-
tained over time.
In this book, I argue that although I am a strong supporter of re-
ducing our reliance on psychotropic drugs, this is not our primary goal.
It is a highly desirable outcome, but it is not the place to start. Fur-
thermore, I do not even believe that reducing distress should be our
primary goal. Once again, it is a very desirable long-term outcome, but
distress is the “cough,” not the “pneumonia.”
I believe that our primary goal is to enhance well-being. This is a
concept I discuss briefly in Dementia Beyond Drugs, but my subsequent
work has convinced me that it is the central issue in improving the lives
of people with dementia, and it provides the best vehicle for creating
sustainable success.
In this book, I will expand on this primary goal of well-being to
show how the concepts can be applied to the everyday lives of people
with dementia, regardless of where they live or who provides their
support.
I will present a framework for understanding well-being based on
seven “domains”: identity, connectedness, security, autonomy, meaning,
growth, and joy, (Fox, et al., 2005). A chapter is devoted to each of the
domains of well-being, and each is explored in a variety of ways. We
will look at the universal features of each domain and the intrinsic and
extrinsic factors that can threaten it for a person whose cognitive abili-
ties are changing.
The concept of “culture change” will again rear its head in this
book, as we examine what needs to be done to operationalize this ap-
proach in various living environments. I will share many true stories
that demonstrate the power of a well-being approach to greatly im-
prove the lives of people who live with dementia, and their care part-
ners as well.
 Prologue  7

I follow these chapters with a capstone chapter that demonstrates

a radically different pathway to understanding distress and support-
ing the person. I will show how the well-being framework supports a
new, strengths-based approach—one that can produce more sustained
success in reducing unnecessary medications than our usual “person-
centered” approaches.
As with Dementia Beyond Drugs, the voices of people living with
dementia (our “True Experts” and best teachers) will be heard through-
out the text. Ignore them at your peril!
Finally, for those who want to take the full measure of this well-
being perspective, I will digress here and there to explore concepts that
are deeper, further out, or otherwise occupy a more challenging realm
than much of our dialogue to date. No envelopes will remain unpushed.
Read on, and be well.