Non-pharmacological Treatment for Alzheimer's Disease: A mind ...

Non-pharmacological Treatment for
Alzheimer’s Disease: A mind-brain approach

John Zeisel, Ph.D., President, Hearthstone Alzheimer Care, Lexington, MA &
Paul Raia, Ph.D., Director, Family Support & Patient Care, Alzheimer’s
Association of Eastern Massachusetts, Cambridge, MA1


Abstract

A new paradigm is needed that focuses on minimizing the symptoms of Alzheimer’s disease and
related dementias rather than focusing only on a search for a cure. To include Alzheimer’s in the
same class of diseases as cancer, multiple sclerosis, diabetes, congestive heart failure, and
degenerative arthritis places Alzheimer’s in the realm of medically and psychosocially
understandable and manageable. A critical first step toward making this shift is to examine
carefully the way in which we define the disease. An approach to care for people with
Alzheimer’s disease results in treatment when it systematically compensates for functional losses
of dementia by linking caregiving actions and environments to specific brain dysfunctions;
namely the neuropathology of the disease. The ultimate measures of success of such a treatment
approach are improved quality of life, delayed institutionalization, slowed rate of progression of
the disease, people who achieve their potential, and reduced need for medication.


A new paradigm
Over a decade ago Winograd and Jarvik, in their aptly named book Treatment for
the Alzheimer Patient: The Long Haul1, questioned the widely held assumption
that Alzheimer’s disease is a hopeless and untreatable condition. “The
unrelenting downward spiral of Alzheimer’s disease,” they wrote, “frequently
leads to a sense of pessimism and therapeutic nihilism among physicians and
other health care professionals.”

In their holistic approach towards Alzheimer’s disease--a disease which then was
and now still is incurable--lies a sound basis for taking a new approach to treating
dementias. Emphasizing non-pharmacological treatments linked to our growing
understanding of neuroscience, this new vision appears to be sparking the
imagination of caregivers, clinicians, designers and others concerned with people
living with dementia. Common sense and a knowledge of the history of other
diseases demonstrates that “..physicians routinely treat people with diseases for
which there are no cures. People with cancer, multiple sclerosis, or Lou Gehrig’s
disease receive treatment and medical attention even though there is no cure for
their maladies. Alzheimer’s patients deserve no less.”

A new paradigm is needed that focuses on minimizing the symptoms of
Alzheimer’s disease and related dementias, rather than focusing only on a
search for a cure.


1 The authors would like to acknowledge the gracious assistance of Marilyn Silagy-Albert, Ph.D.,
Professor of Psychiatry and Neurology at the Harvard Medical School in reviewing this paper
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... despite lack of medications to reverse the underlying etiology,
physicians need not feel helpless or hopeless, because management
strategies do exist that can help treat the manifestations of this disease.
Incurable does not mean untreatable. As with other chronic diseases,
such as diabetes mellitus, congestive heart failure, or degenerative
arthritis, curative remedies for the underlying disorder do not exist.
Treatment is often symptomatic rather than pathology-specific. (pp. 6-7)

Including Alzheimer’s in the same class of diseases as cancer, multiple sclerosis,
diabetes, congestive heart failure, and degenerative arthritis places Alzheimer’s
in the realm of the medically and psycho-socially understandable and
manageable. Making this link turns Alzheimer’s into a treatable, although
incurable, disease rather than the hopeless condition it and these other diseases
were thought to be a century ago. This seemingly simple shift can bring back to
the realm of the living, tens of millions of people worldwide who our limited
thinking has condemned to a limbo in which they are merely waiting to die.

Labels and definitions control our behavior
A critical first step towards making this shift is to examine carefully the way we
define this disease. This step is necessary because we tend to gather and
organize knowledge according to the way we define the world around us, then
act and behave according to what we think we know. Ancient astronomers who
believed the sun revolved around the earth found “scientific” facts that supported
this definition--creating a generally accepted, but incorrect, earth-centered theory
to explain the cosmos

Over the years Alzheimer's disease has been culturally defined in different ways;
and each label resulted in a dramatically different approach to care. First there
was no definition at all; memory loss, confusion and disorientation occurring later
in life were labeled “senility” and considered just a facet of normal aging. With
dementia symptoms seen as “normal," no specific approach to care was needed.
This nihilistic view is reflected in the “one size fits all" model of residential elderly
care still ubiquitous today.

Over time a second, equally disturbing, definition emerged: Alzheimer's care as a
“low tech” backwater area of medical science and professional caregiving with
minimal challenges and scant rewards. This label lead to emphasizing the
palliative, hospice-like dimension of dementia care--basic comfort measures as
patients wait to die.

At the same time a closely related third definition emerged. With little hope seen
for people with Alzheimer’s except to alleviate the pain and suffering associated
with the disease, society’s resources were dedicated to biomedical research. In
the context of a vigorous and well-funded search for an ultimate cure, people with
the disease today are still written off. Biomedical research, it is thought, can offer
them very little. They are seen as too early in the long-term research process to
benefit from the “magic pill” which, although years away, is being held out as a
promise.

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The most recent and positive view of Alzheimer's and related disorders to
emerge defines these diseases as disabilities, albeit caused by a progressive
and fatal neurological illness. Caregivers employing a disability model
emphasize active treatment of symptoms by focusing on supporting the
capacities a person retains, particularly, the person's psychological capacity.
Developing a better understanding of the psychology of dementia--how a person
thinks, feels, communicates, compensates, responds to change, to emotion, to
love--can lead to breakthroughs in treatment.

Popular and professional acceptance
One indicator of the success of a new label is its popular acceptance. A recent
broadly distributed pharmaceutical industry health guide reflects this approach:

AD Can be Treated2
Although there is no cure for Alzheimer’s disease at this time, there is
much that can be done to manage the disease and to treat its symptoms
to provide a better quality of life for those afflicted and their caregivers. (p.
4)

In addition to medication to treat the symptoms of AD, physical exercise
and social activity are important in maintaining overall good health, as is
proper nutrition.

Calm structured surroundings may also help the afflicted person to
continue functioning as well as possible for as long as possible.
Modifications to the living environment can help the afflicted person
maintain comfort and dignity (p. 6)

Another important indicator of a label’s influence is its appearance in scholarly
articles by respected researchers and authors. Barry Reisberg and his
colleagues at New York University Medical Center discuss “treatment” for
Alzheimer’s disease in a 1998 article3:

A stage 6 AD patient who is frustrated or mistreated will frequently
respond with what has been termed a “catastrophic reaction”…A stage 5
or 6 AD patient who is insecure, whose pride has been wounded, or who
experiences their current life as intolerable, will frequently develop
delusions. we might consider treating the AD patient’s catastrophic
reactions by removing the sources of frustration or mistreatment [and] we
might use “delusion therapy” in AD to explore and treat the source of the
AD patient’s insecurity, wounded pride, etc. (pp. 16-17)

This shift in the paradigm, prophetically predicted by Winograd and Jarvik over a
decade ago, is now taking form as a distinct treatment.

An Ethical Dilemma with Practical Implications
Alzheimer’s poses a significant ethical and practical dilemma for those who care
for people with the disease. Because Alzheimer’s is a terminal illness, people
with the disease face a death sentence. It is as if someone said to them: “You
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have only a certain time to live.” If that time were two days, we would clearly
treat that person as if he were dying. If that time were 75 years we would clearly
treat that person as if they were going to live, and provide them with the highest
quality of life possible. But for those with Alzheimer’s disease the term lies
somewhere in-between—closer to twelve years. The question raised is whether
to provide care for these people as if they were dying or living. with Alzheimer’s
disease the term lies somewhere in-between—closer to twelve years. The
question raised is whether to provide care for these people as if they were dying
or living.

When people with Alzheimer’s disease are seen as dying, it is reasonable to
focus on making them



A Higher Quality of Life as Long as we Live



high








treatment
Quality
of

palliative care
Life




custodial care
low
Early Stage Time Late Stage



as comfortable as possible in a custodial environment. If those with the disease
are seen as people who are living, we need to think differently; we need to
concern ourselves with their treatment and quality of life.

In this century significant diseases have posed the medical and non-medical
professions with this same dilemma: diabetes, manic depression, and now AIDS.
Each was first thought of as a hopeless condition, a plague from which there was
no way out. But each has become a treatable disease through the use of proper
medication, life style changes, diet, and environmental design. Alzheimer’s is
now at the cusp of this shift from hopeless condition to treatable disease.

In order to frame a treatment approach caregivers, clinicians, environmental
designers and others need a coherent way to envision the quality of the lives of
those with the disease, so that they can maintain that quality of life. For
Alzheimer’s disease, treatment must also take into account the quality of life of
family members and professional caregivers, not only of patients and residents

Quality of Life/Treatment Outcome Levels
Abraham Maslow4 defined the components of life quality for cognitively intact
people half a century ago as physiological, security, social, self-esteem and self-
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actualization. For those with Alzheimer’s disease a similar model can be
constructed, with three levels of needs necessary for them to experience life
quality; the highest level representing the highest quality.

The first two levels of needs that caregivers must meet to provide quality of life
require only brief explanation. The most basic set of needs is physiological: the
need for safety, health, nourishment and shelter. Meeting these basic needs






Quality of Life Treatment Outcomes










High
Self

Emotional
Actualization
• belonging
• individuation
• mood






Middle
Behaviors & Functions

Behavioral
• functional independence
• read the environment


Low


Physical Needs


Physiological
• safety
• health
• nourishment
• shelter



comes first because doing so forms the foundation for meeting the others. The
next set comprises behavioral needs for appropriate functioning and use of the
environment. Help is required to meet these needs because damage to the brain
of people with dementia specifically affects those areas that control social
behaviors, impulse control and environmental cognition.

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The highest life quality level deserves further explanation because popular
misconception would hold that people with dementias cannot feel the way
cognitively intact people can. However, one of the last parts of the brain affected
by this disease, the amygdala, receives, reacts to and expresses mood and
emotion. Mood and emotion are therefore readily accessible to caregivers until
very late in the disease; although it remains difficult to maintain positive mood
and emotion for this population because the amygdala processes both negative
and positive emotions equally. Many people with Alzheimer’s disease feel
negative feelings as readily as positive ones. In addition, people with dementia
face so many real frustrations and experience so many losses.

The goal of life quality treatment is not only to maintain positive mood, but also to
maintain emotional stability around social norms--recognizing and dealing with
other people--and personal norms--maintaining a sense of self.

Even those with Alzheimer’s disease can achieve higher emotional levels when
treated consistently in specially planned environments. They can develop both a
sense of self and of belonging to a larger community of residents.


Treatment, not random care
An approach to care for people with Alzheimer’s results in treatment when it
systematically compensates for functional losses of dementia by linking
caregiving actions and environments to specific brain dysfunctions; namely, the
neuropathology of the disease. In other words, treatment for Alzheimer’s
employs environment, activities, communication and programs to maximize use
of cognitive capacities that remain intact while compensating for those cognitive
capacities that decline. As neuropsychologist Marilyn Albert5 points out, the
more fine-tuned treatment approaches are to an individual’s specific configuration
of brain dysfunctions the more effective treatment is likely to be. Knowing, or at
least thinking about, the links between a person’s cognitive strengths and
weaknesses and that person’s brain function is particularly helpful for caregivers
who might otherwise treat the person with Alzheimer’s disease as globally
dysfunctional rather than as a person with certain strengths and other
weaknesses:

To make [neurological assessment] information useful to family members
one must explain the practical consequences of the cognitive profile one
sees and, whenever possible, relate it to the function of the brain. ... A
simplified explanation of brain function tends to allow family members to
better visualize the changes caused by the disease. ... For example, if a
patient is inappropriate, it may be useful to explain that the frontal lobes of
the brain enable people to monitor and inhibit their behavior ... While the
suggestion that the frontal lobes are involved may only be an educated
guess on the part of the neuropsychologist, this explanation will help the
family to think about behavior as caused by the brain...This may prevent
them from blaming themselves or the patient unnecessarily for the
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development of the troubling behavior and also help them to change their
expectations of the patient. (p. 68)

The brain works as an integrated whole, making it difficult to link specific
functions to single areas or lobes of the brain. Nevertheless, because
researchers over the years have mapped out where alterations occur in the
brains of people with Alzheimer’s and have begun to associate location of
changes with clinical symptoms, schematic associations between brain function
and functional capacity are possible. Making such schematic associations is
useful for diagnosis, family counseling and treatment planning, even though
Alzheimer’s disease is generally caused by non-uniformly distributed changes
that evolve over time in many areas of the brain.

Alzheimer’s disease tends to begin in the medial temporal lobe, then spreads to
other regions of the brain. Alzheimer’s disease tends to affect most severely the
association cortex of the parietal, temporal and frontal lobes and the cingulate
cortex of the brain. By contrast, the motor cortex and major sensory areas are
less affected. Memory dysfunction, emotional and personality changes tend to
arise from damage to the limbic system--the hippocampus and amygdala--while
damage to the temporo-parieto-occipital association cortex results in different
forms of language, visual, and movement disorders. Social graces and habitual
personality traits are relatively preserved until late in the disease.

In this context, it may be easier to accept the simplification presented here to
explicate the nature and organization of a non-pharmacological approach.

The Temporal lobe may be the first part of the brain to be affected by
Alzheimer's disease. Grossly speaking, the temporal lobe controls new learning,
short-term memory, and, in conjunction with other parts of the brain, language
and perception of music and rhythm--all of which may be profoundly impaired by
mid stage of the disease. The hippocampus, a key structure in the limbic system
located in this area of the brain, can be seen as a computer chip with the
following functions: recording new information, partially processing that
information and sending the newly learned information to other parts of the brain
to be processed further and eventually stored in memory. By mid stage of
Alzheimer’s disease the person will have almost no capacity to learn new
information, or hold on to experience. Because these connections between new
learning and response cannot be made, traditional forms of treatment such as
behavior modification do not work with this population.

The Occipital lobe, the rearmost part of the brain, controls vision and other
functions related to visual performance. Depth perception, acuity for objects,
recognition of faces and objects and what environmental psychologists call a
“cognitive map”, that is, holding a picture of an environment in mind that enables
a person to make their way from one place to another, are occipital lobe
capacities affected by the disease. Because of deficits in processing and holding
visual information as well as hippocampal deficits that lead to an inability to hold
other information about the recent past, the person with Alzheimer's lives in the
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present moment. What a person sees at any moment makes up his or her
reality.

The Parietal lobe, together with the temporal lobe, is involved in understanding
written and spoken language, and processing spatial relations. The progressive
loss of these with advancing Alzheimer’s typically means that the person with
Alzheimer's has difficulty making him or herself understood as well as
understanding written or spoken language. Because of this, many people with
Alzheimer's become extraordinarily dependent on body language to understand
meaning.

The Frontal lobe is the site of judgment, reasoning, decision making and
sequencing tasks. It also controls our ability to look inward to understand our
own and others’ deepest motives. Planning and carrying out a task and
understanding how others feel are capacities dependent on this part of the brain.
By mid stage or sometimes even early stage of Alzheimer's disease many of
these capacities are seriously compromised. Overall, people with frontal lobe
damage in mid stages of Alzheimer's disease have difficulty with personal care
and the everyday tasks of life.

As the disease progresses, psychiatric symptoms such as hallucinations,
delusions, paranoia, agitation, panic and denial are seen in some people.
Towards its end stage, other more primitive parts of the brain are affected.
Changes in the Cerebellum lead to impaired coordination of voluntary movement
such as sitting, standing, opening a door, and walking. Changes in the Pons and
the Medulla areas of the brain late in the disease even affect basic functions
such as breathing, heart rate, temperature control, digestion, swallowing and
blinking.

Why treatment can still be effective
Looking at all the neurological damage caused by Alzheimer's one might logically
ask how can treatment take place. Traditional forms of treatment such as reality
orientation, behavior modification, talking therapies require at least some memory
and introspective capacities, none of which Alzheimer’s caregivers have to work
with. What neurologically based capacity remains for treatment?

The amygdala in the brain’s limbic system gives us the ability to respond to
emotion, to evoke or hold emotion, and to perceive emotion. Remaining
relatively intact late into the disease, the amygdala retains enough function so
that those with Alzheimer's disease continue to relate to others emotionally.
What is lost is the personal insight into what may have triggered a particular
emotion, and how to control it. Treatment ultimately targets the person’s ability to
hold and respond to emotion.

Two treatment modalities are available to maintain quality of life for those with
Alzheimer’s disease and related dementias. They are environmental design and
staffing/programming. Before either of these treatments can be effectively
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employed or evaluated, however, medical intervention must be taken into
account.

Specifically, it has been found that when other illnesses are present, symptoms
associated with dementia can be exacerbated. 6,7 Such additional symptoms are
one type of “excess disability”--labeled this way because they are not strictly
symptoms of the dementia itself. For example, a person with Alzheimer’s
disease who is also clinically depressed is likely to appear more demented than
an Alzheimer’s patient whose depression has been treated medically and
psychiatrically. It is for this reason that the first steps in treatment need to
include thorough diagnosis and treatment of those illnesses that may be present
but are not integral to dementia.

Treatment Interventions
The goal of non-pharmacological treatment is deceptively simple; to bring about a
positive emotion and to maintain that positive emotion for as long as possible.
Clinically, this presents a challenge. It is not simple for a caregiver to increase
functional independence, reduce the need for psychoactive medications, prolong
life, reduce the need for restraints, reduce acute hospital admissions, reduce
depression and improve morale. Treatment has the potential for improving the
quality of life at any stage of the disease8,9,10,11,12,13,14,15 --early, middle or late, in
home, day care, assisted living or long-term care settings--but what are its
components?

“Habilitation” therapy16
An important conceptual stepping stone towards recognizing treatment
possibilities and shifting the caregiving paradigm away from hopelessness is
called “habilitation” therapy. The term reflects the realization that the brain of a
person with Alzheimer’s and its function cannot be restored to its prior condition--
hence therapy is not “re” habilitative. The term also implies that effective
treatment aims to help people “live and work through every day life”; namely, is
“habilitative.” In the definition of this unique and pioneering therapy, “using mood
to bring about a person’s ability to live and work to their full potential’ is a central
feature.

Six Treatment Domains

Naturally Mapped Physical Environment17 Treatment can be a physical
environment that promotes safety and reduces fear by directing cognition even
without the person's awareness. The literature is replete with environmental
intervention strategies that have proven effective in improving resident
behavior.18,19,20,21 The environment is like prosthesis for those who have difficulty
carrying a cognitive map. By being self-evident it compensates for neurological
losses. The environment has what Donald Norman calls “natural mapping” in
which the environment itself contains the knowledge necessary for its correct
use, rather than relying on knowledge held in the head of the user.22 Design
adaptations and enhancements work by reducing demands on the person's
already challenged perception, thus dramatically improving levels of functioning.
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More importantly, by promoting feelings of security, mastery and belonging, they
lessen the frustrations that often result in behavioral outbursts.

Accepting Residents’ Frame of Reference How we help the person to make
him or herself understood and how we make ourselves understood to the person
is the cornerstone of non-pharmacological treatment. It is in communication that
this treatment departs most dramatically from traditional forms of therapy with
older adults. Communication with people who have limited word recognition
starts with the premise that a person’s behavior is not changed by words alone;
rather, to change behavior, caregivers must change their behavior or change the
environment. Another tenet of treatment communication is never to try to bring
the person--especially with mid stage or later stage dementia--back to our sense
of reality, but rather to move into their sense of the world. A third principle is to
reduce fear by using validation therapy and limiting the range of options for the
person to a number he or she can manage. A fourth strategy is to use distraction,
refocusing and redirection to change goal-oriented behavior. The success of
specific treatment techniques such as validation therapy has been demonstrated
in previous research.23,24,25

Maintaining Positive Emotion while Assisting with Activities of Daily Living
All too frequently caregivers take away the opportunity a person with Alzheimer’s
may have to perform routine everyday tasks of life. Rather than helping the
person do what he or she still can do for themselves, the caregiver carries out
the entire task. People cared for in this way feel frustrated, dependent and
helpless, often losing the drive and ability to care for themselves. Such
dysfunction is a type of “excess disability.” It is “excess” because it is caused by a
caregiver’s well meaning actions, the person's own emotional reaction to their
disease or the lack of environmental support rather than in response to brain
damage. For example, if we present a person with a large plate of food and feed
her by hand when she can still eat finger food by herself, that person is likely to
lose the ability to eat by herself.

Scores of specific strategies and skills have been developed to keep the person
with Alzheimer's participating in their own care far into the disease.26,27,28,29,30
Treatment in this domain requires caregivers to discover and capitalize on
remaining skills, break tasks down into simple, easily sequenced steps and know
when to provide more and when less support.

Therapeutic Activities and Programming Structured therapeutic activities are
the motor that drives the entire treatment model. A broad range of specific
treatment techniques in the literature can be incorporated under this
modality.31,32,33 While people with dementia who spend long periods doing
nothing experience more psychiatric symptoms, such as depression, anxiety,
paranoia, delusions and hallucinations, therapeutic activities should not be
thought of as valuable merely because they fill time. Activities are therapeutic
because they change negative emotions quickly and promote feelings of purpose
and accomplishment.

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