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What It Isnt, What It Is

This book is not a primer on dementia. It does not describe in detail

the natural history of dementia, nor its symptoms, varieties, diagnosis,
or treatment options. There are many authors who have done a thorough job of explaining these.
This is also not a review of the newest research studies attempting to find a cure or a means of arresting the progress of dementia. Like
everyone, I hope we will find better treatments for this life-altering
condition. Based on our history with other neurological disorders, however, we must accept the fact that an out-and-out cure will likely elude
us; meanwhile, there are millions of people living with dementia today
who still need our care, support, and attention.
If you have picked up this book, you may be a healthcare professional or a family member who cares for someone with dementia, or
possibly you yourself have been diagnosed with some form of cognitive
change. You may have read other books about dementia, studied it for
your career, listened to talk shows on the topic, or contacted your local
Alzheimers support organization for more information. Perhaps you
work in a care setting where dementia is prevalent.

10Dementia Beyond Drugs

My own work in elder care has followed a unique, dual pathway.

As a board-certified internist and geriatrician and a full-time nursing
home practitioner for 18 years, I treated thousands of people with all
forms of dementia.
I am also an Educator for The Eden Alternative, the largest of the
growing number of movements worldwide that are working to transform elder care and, with it, our societal view of aging. Being both a
practicing physician and an advocate of culture change in elder care
puts me in a unique position to assemble all I have learned about the
biomedical approach to dementia and reframe it within a new model
of care.
Much of the information in this book comes from the pioneering efforts of other people whose work has greatly affected me. These
people are too numerous to mention here, though you will read about
them throughout the book. There are, however, a few individuals who
have profoundly influenced my thinking.
Dr. William H. Thomas, a Harvard-trained physician, decided to
try his hand at working in a nursing home in the early 1990s and became
the architect of The Eden Alternative, which now boasts hundreds of
member nursing homes in North America, Europe, Oceania, and Asia.
More than 35,000 people worldwide have had formal training in the
Eden philosophy and process, and (along with other innovators, represented by organizations such as the Pioneer Network) they are turning
our sterile institutions into more vibrant, life-affirming homes where
the frailest elders and their care partners can thrive and grow. Bill and
his wife, Jude Meyers-Thomas, continue to be outspoken advocates for
elders worldwide.
But the work of such pioneers represents only a few waves in an
ocean of elder care settings around the world, and nowhere is the need
for transformation more critical than in our care and support of people
living with dementia.
Another pioneer who deserves significant credit for my personal journey is the late Professor Tom Kitwood, a psychologist who
founded the Bradford Dementia Group in England, and whose personcentered approach to people with dementia helped form much of the
foundation for my early transformational work. His group continues to
serve as an important resource for a more humane, relationship-rich
approach to people with dementia.
Over the years, many more people have influenced my thinking,
none more than those who live with the diagnosisthe experts in


the lived experience. You will read about many of these people on the
following pages, and I quote them regularly in my talks and seminars. It
takes a team effort to change the culture of care, and I will share many
of the insights they have brought to my work.
We need to do more than simply adjust our thinking about this
disorder. We need to radically alter the way we look at the challenges
so commonly encountered in supporting people living with dementia.
As I will relate, our biomedical approach is inadequate to the needs of
our rapidly increasing population living with dementia, and it compromises the well-being and personhood of millions of people around the
world. Only by radically transforming our system and approach to care
can we hope to turn the tide.
Thus, I am adding yet another volume to the mountain of books
on this condition. My hope is that this book will help rebalance our attitudes and approach toward people living with dementia and motivate
us to promote a change of direction in their support and care.
The first part, Paradigms and Problems, begins by looking at
the prevailing view of dementia and our usual responses to peoples
words and actions and then demonstrates some alarming medication trends worldwide. Next, it examines the research upon which
current prescribing patterns are based, but with a different perspective from most of the medical establishment. The next chapters in
this part describe in detail the problems with our current model of
elder care. There are other books on culture change that address
the topic very well, but I believe it is important to review this in
a manner that speaks directly to the care and support of people
with dementia.
There are those who believe that this topic doesnt require a lot
of explanation because the problems with our institutional model of
care are well known by now. I disagree. There are many people giving lip service to person-centered care. Even the government entities in many nations have adopted the buzzword. But when it comes
to the support of people with dementia, either our understanding of
this concept is so limited or else our traditional approach is so deeply
ingrained that we dont even realize how institutionalized our attitudes
have become!
In his video Everyday Creativity (1999), photographer Dewitt
Jones observes that patterns and structures are incredibly important.
We cant function without them. But we all know that if we let these
patterns go too long unquestioned, they become our prisons. For this

12Dementia Beyond Drugs

reason, I will expend some effort to show that our approach to care
needs a radical overhaul.
In the second part of the book, Shifts, we will use what we have
learned to craft a new experiential model for viewing dementia. This
model will enable us to create a world in which even people with advanced cognitive changes can experience well-being and growth, without taking psychoactive medication. The chapters in this part will also
begin to lay out the process for transforming from a biomedical to an
experiential approach to care in all settings.
The final part, Solutions, applies the experiential model to offer specific approaches to supporting people with dementia and gives
concrete suggestions for understanding and responding to many common situations. The book closes with stories of people who are already
making this transformation. Their successes will show us where we
need to go.
I have an important reason for saving the discussion of specific
approaches for the very end. Despite much information on nonpharmacological interventions, in practice most care staff fall back
on medication use at some point. My work in nursing home culture
change has helped me to understand why this happens. Nonpharmacological approaches will never fully succeed until the underlying culture of care can be transformed. I cannot emphasize this enough. If you
try to use the suggestions offered in the back of the book without doing
any of the difficult and challenging work of truly changing the care
environment, then you will not realize the full benefits. There are no
gimmicks; this is not a 10 Quick Steps to Success book. Hard work
and dedication are required, but the need is critical and the rewards
are great.
In my own practice, I was able to care for people who lived with
dementia using only a small fraction of the psychiatric medication that
most people use, even though St. Johns Home was still at a fairly early
stage in the transformation process. Sustaining such success, however,
requires the ongoing effort of the entire organization.
Nevertheless, we can take these successes and the very real benefits that many of us have seen and create a road map that shows where
this journey can take us, if we dare to embark. This book also explains
what each of us can do today, no matter where we are, to take the
first steps.
When I first wrote this book, my wife and I were in the process of
downsizing to a smaller home. I packed old files, mementos, and other


pieces of my life so far into boxes. At some point after we relocated,

I simply unpacked the boxes and retrieved the contents. But how would
I have felt if I had opened a box and didnt find what I was looking for?
What if one or more boxes were lost by the movers and I could never
retrieve that piece of my life and all of its meaning?
This must be the dilemma of a person who faces progressive memory lossthe inability to retrieve important pieces of ones life, which
can lead to a loss of ones sense of self. After living with dementia for
6 years, Dr. Richard Taylor shared his experience:
Sometimes, when I am alone with my thoughts, I wander aimlessly
around the corridors of my mind. I open various doors to see if they
are still full of the memories I stored there years ago. To my pleasant
surprise, most of them seem to contain all that I remember putting in
the room. However, as I move from the past toward the present, I find
more and more empty rooms. Not only are they empty, they are dark.
They offer no clue, other than the label on the door, as to what they
once contained.
. . . It is very unnerving to be in the midst of a conversation and
all of a sudden need to open the door to a room to access its contents
andthe room is dark. I dont have a clue. (2007, p. 35)

This loss of access to memories can be accompanied by the inability to

perform other previously simple functions, such as balancing a checkbook, driving to the store, even putting on ones clothes in the morning. As I reflect on this, it is all too clear that if we are to provide the
best care for people with dementia, we need to spend a lot more time
trying to understand what it feels like to live with dementia. This is
what I call an experiential approach to dementia, and it will challenge
many of the truths about the disorder.

Warm-Up Exercise: The Birthday Cake

Before you shift paradigms, you may find it helpful to stretch your
mind with a warm-up exercise: You have a problem. Its your birthday,
and you are celebrating with seven of your close friends, one of whom
has made a delicious chocolate cake. The baker, however, is a bit of
a prankster. She has told you that you have to cut the cake in a special manner or else you cant have any. Your task is to cut the cake in
eight pieces of equal size and shape, but you can only make three slices
through the cake with your knife.

14Dementia Beyond Drugs

Now, cutting a cake in eight pieces is not particularly difficult.

Most of us do it the same way. Assuming the cake is round, you begin
by cutting the cake at ninety-degree angles to split it into quarters:

Next, you make two cuts on the diagonal, to split each of these pieces,
creating eight equal wedges:

Thats easy enough; the problem is that it took four cuts of the knife.
How can you possibly do it with only three?
Ive posed this problem in many teaching sessions, and its a rare
person who can get the answer quickly. After each group struggles for a
while, I remind them that the drawings I have shown do not truly represent the cake, which of course is a three-dimensional object. Usually
at this point, a couple of people will figure it out.
The answer, you see, is to start by cutting the cake in quarters with
two slices of the knife as we did in the first figure above. The third slice,
however, is cut through the side of the cake, as if making a horizontal


cut between the layers of a two-layer cake. Now you have created eight
pieces of equal size and shape, with only three cuts of the knife.

Why is this so hard to grasp at the outset? The reason, of course, is that
no one ever cuts a cake this way. We have a system for cutting a cake
into slices. Each of us has our own style, but we all tend to look down at
the cake from above. In doing so, we view the top of the cake as a twodimensional surface and plan our cuts from this point of view. That
works fine until someone asks us to think outside the box. Then, our
habits blind us to other possibilities.
So why did I start a book on dementia with a puzzle about cutting birthday cake? Dementia is becoming increasingly prevalent
as our population ages; it will affect more than a hundred million
people worldwide over the next few decades. Our approach to this
changing demographic, however, is a deeply flawed system of care
that isolates people with dementia at home or moves them into cold,
institutional settings. Both situations fail to create the environment
a person needs in order to thrive, and our response to their resultant
distress is to overmedicate and sedate them. The more that people
with dementia suffer, the more we pile on the medications and institutionalize their lives.

16Dementia Beyond Drugs

Like the birthday cake, we look at the person with dementia from
a single viewpointthat of a broken person in need of medication to
mitigate the decline. Our standardized tests reduce ones personhood to
a list of disordered thinking processes and ignore the complex cognitive
and emotional qualities that can be retained even in advanced stages of
the disorder. As a result, our attempts to treat dementia involve repeating or intensifying failed strategies, and like the person who keeps trying to cut the cake from the top, we never succeed in finding a solution.
Part of the disability of dementia lies in the disorder itself, which
robs people of the capacity to experience and enjoy life as they have
in the past. However, another disability of dementia is the way our
medical and social systems further deprive each person of the chance to
truly grow and thrive despite his or her cognitive changes.
Much attention is paid to the frosting and decorations that adorn
a birthday cake. Yet only when we cut into the cake do we discover
the rich substance that lies beneath the surface. In this book you will
discover novel ways to cut the cake to discover the rich tapestry that
exists within each individual.
By creating a world that provides more holistic care and nurtures
individual growth, we can reclaim lives and restore hopenot only for
those who live with dementia, but also for their families and other care
partners. Do you care for one or more people living with a diagnosis
of dementia? Do you feel frustrated by the distress and challenges that
persist despite the best medical treatments? Then make a wish. Blow
out the candles. And read on. . . .