Prologue

Read This First (and Last)!

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

(Power, 2010), was an exercise in delayed gratification. 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, person-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

2Dementia Beyond Disease

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

more recently fueled by increased media attention and government initiatives 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 reductionist, biomedical perspective. This view holds that distress is
the product of damaged brain cells and the chemical imbalances that
result. They view such distress as problem behaviors and are quick to
use such labels as psychosis to describe what they see. Drug therapy,
including the use of antipsychotics, is a central part of their approach.
At the other end are the advocates of holistic, person-centered approaches. 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 distress 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 allow that one should try nonpharmacological approaches first and foremost, 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 judgment, 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 symptom 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 dementia. 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 persons needs over time,
with or without the use of drugs. Let us take a look at each of the two
approaches.

Prologue3

Pharmacological Approaches
In Dementia Beyond Drugs, I devoted a substantial chapter to critiquing
the use of medications, particularly antipsychotic drugs, for the various
expressions of need seen in people living with cognitive disabilities. In
that chapter, I also challenged the design, execution, and analysis of
the studies that purported to show a benefit of such medications and
reviewed the emerging research showing the previously unrecognized
dangers of these medications. I discussed the ways in which we improperly measure improvement and how we often make incorrect assumptions about cause and effect. Finally, the chapter concluded with
a number of stories about the awakenings 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 book was written, further
studies have strengthened those challenges and revealed these drugs to
be even less effective and riskier than previously thought.
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 multitude of cases in which a persons distress was solved through
other approaches. These cases put the lie to the idea that we somehow
needed to change that persons brain chemistry in order to relieve distress. Every time we see such a success, we should wonder how many
other peoples 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

4Dementia 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 nonpharmacological 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 eitheror
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 intervention. 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 interventions 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 often 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 interventions 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 future. For example, if a person in distress responds to being moved
to a quiet place and being given a hand massage, then that approach 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

Prologue5

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

such interventions will wear off and have to be readministered.
(Readers of my first book may recall that I previously addressed
this idea, and did not quite get it right.)
3.

They are not person-directed. A typical list of possible interventions

is often little more than a generic algorithm to apply in a trialand-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 approaches.
As a result, they are often devoid of meaning for the individual.

4.

They are superimposed upon the usual living environment and approaches to care. If the living environment and approach to care are
an ongoing cause of the unmet need, 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 biomedical 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 symptom of a larger issue. I often equate it with
treating pneumonia with cough syrup. People with pneumonia often
have a very bothersome cough. If a doctor sees the cough as the primary
problem, 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 persons distress as the problem, 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 ones 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 symptom.
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.

6Dementia 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 directive 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 before the horse and sets us up for short-term gains that cannot be sustained over time.
In this book, I argue that although I am a strong supporter of reducing 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. Furthermore, 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 discussed 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 abilities are challenged.
The concept of culture change will again rear its head in this
book, as we examine what needs to be done to operationalize this approach in various living environments. I will share many true stories
that demonstrate the power of a well-being approach to greatly improve the lives of people who live with dementia, and their care partners as well.

Prologue7

I follow these chapters with a capstone chapter that demonstrates

a radically different pathway to understanding distress and supporting the person. I will show how the well-being framework supports a
new, strength-based approachone that can produce more sustained
success in reducing unnecessary medications than our usual personcentered approaches.
As with Dementia Beyond Drugs, the voices of people living with
dementia (our True Experts and best teachers) will be heard throughout the text. Ignore them at your peril!
Finally, for those who want to take the full measure of this wellbeing 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.