In her articles, Angela Lunde of Mayo Clinic remarked that, for a long
time I have said to caregivers "Blame
the disease, not the person. It's a way to help caregivers separate
the person with Alzheimer's disease from some undesirable behaviour, and to
appreciate that the person with dementia is not intentionally acting bad or
trying to upset, frustrate or annoy caregivers. I still maintain this notion, and
certainly we should not blame the person for their disease. Yet, I want to be
cautious that we do not simply dismiss or blame the behaviours on the dementia.
To do so can have tremendous consequences on the overall well-being of the
person with dementia, as well as to you, the caregiver."
It makes sense that behaviours such as agitation, yelling, hitting or uncooperativeness are part of a brain
dysfunction linked to dementia, but here's what we want to make clearer —
dementia itself does not create these behaviours. The environment, physical discomfort (pain for example), our
approach and communication style are just a few things that can have a person
with dementia behaving in a particular way.
Dementia has been described as a type of disability where one's experience
of the world is shifting over time, and that the distress or behaviours
exhibited by a person with dementia are purely an expression of need. Most of us probably believe that much of
human behaviour is motivated by specific needs that have to be met. Abraham
Maslow, a psychologist, talks about basic human needs — food, warmth, sleep,
safety and security, as well as higher order needs such as the need for
affection, belonging, love and self-esteem.
A person with dementia has both basic
and higher order needs, including those for social contact, physical touch,
praise, and a sense of belonging, purpose and control. Yet for people with
dementia, their ability to satisfy these needs on their own diminishes over
time and can go unrecognized. And as persons with dementia lose their ability
to communicate their needs effectively through words and language, overt behaviours
fill the void. In other words, behaviour is communication.
Caregivers as well as doctors and other professionals tend to label behaviours
with words such as difficult, disruptive or, worse yet will label a person with
dementia as combative, resistive or challenging. Yet behaviours are simply communication tools when language and other
means of coping are no longer available. I believe one of the best things we
can do for a person with dementia is to shift our way of thinking and view behaviours
as neither good nor bad, but as a bold sign that there is an unmet need that
requires attention.
If you accept that, then we as caregivers (family, friends) can play an
enormous role in easing (and preventing) distress for the person with dementia
and ultimately ourselves. Teepa Snow, an extraordinary dementia education and
care specialist said recently, "If we can help care partners see the 'behaviours'
as the tip of the iceberg and as something to be curious about, to investigate
and to explore, rather than to judge, then we can change the entire
paradigm."
As a family or professional caregiver how do you begin to investigate,
explore and figure out the unmet need? Family caregivers may have an upper hand
here because they understand better than anyone the personality traits, life
history and personal preferences of the person with dementia. This
understanding offers important clues. Yet family members can also struggle the
most because this shift requires letting go of the person as they once were,
altering expectations and changing well established patterns of communication.
There are more insights as well as specific techniques and strategies
for uncovering the message (unmet need) behind the behaviour.
It is important to see challenging
behaviours as symptoms instead of problems. Think about this analogy:
You have an infection and develop fever. The fever is a symptom of the
infection. If we simply see your fever as the problem, we will only treat the
fever. While this might reduce some of your discomfort for a time, the fever
will eventually return and you will get worse because nothing was done for the
real problem — the infection. Similarly, to
better manage behaviour symptoms
in a person with dementia, we need to uncover and address the real source of
the problem.
As a caregiver this can seem like one more role to take on — that of a
detective assigned to uncover the real problem. Yet the goal here is not to add
more burden or pressure to the caregivers. If caregivers can identify triggers,
learn some techniques and skills, and are willing to employ them, the result
will be fewer unmet needs and consequently less behaviour that challenge and
wear down caregivers. In this regard, the quality of life for the caregiver can
improve.
Just what potentially are these unmet needs, the real problems? Unmet needs generally fall into one of
three broad areas:
·
Personal health
·
Physical environment
·
Social environment
In other words, behaviours can be an expression of a health need or an
outcome of the interaction between the person with dementia and their physical
or social environment.
PERSONAL HEALTH
Let's start with physical health. Persons with dementia are often
limited in their ability to identify, understand or articulate when they are in
pain, feel uncomfortable, are sad or are disorientated due to physical
limitations. The following represent some common health issues that are often
overlooked in people with dementia as potential problems leading to behaviour
symptoms:
· Fatigue due to poor sleep.
· Presence of a medical condition such
as an infection (for example, urinary tract infection).
· Clinical depression.
· Vision loss or lack of proper
eyeglasses.
· Hearing loss or lack of working
hearing aid (check batteries).
· Constipation.
· Dehydration.
· Need to urinate.
· Hunger.
It is important to always consider these and other health conditions
that may be contributors to the behaviour symptoms. It would make sense that if
a person is fatigued, hungry or in pain, and is unable to articulate or take
care of the need independently, that they would express anger, agitation or
even aggression.
PHYSICAL ENVIRONMENT
Behaviour symptoms also can be related to the physical environment. We
now understand how powerful environmental factors are in triggering behavioural
symptoms. Individuals with dementia experience increasing vulnerability and a
lower tolerance to stress in their environments. We may like to think of the
environmental contributors to stress in persons with dementia in three areas: physical
space, daily routine and structure, and sensory stimulation.
ü Physical space
The good news is that we, as caregivers, can use the environment to our
advantage because we can control and modify the environment. This means that we
can play a significant role in reducing environment-related stress. We can
often prevent problems, and therefore behaviours, by creating a supportive
environment. In addition, we can sometimes manage behaviour (unmet need) by
altering the environment in some way.
As we think about how someone with dementia interprets and perceives
their environment, we can make some basic modifications to help that person
feel less confused and more in control.
Strategies such as placing a clock and calendar in plain sight, reducing
clutter, and keeping household objects and furniture in the same places will
reduce confusion and maintain a feeling of control. Displaying familiar objects
and photographs will offer a sense of security. Labelling spaces with signs,
pictures or colour arrows will help people with dementia find their way around
the house.
ü Sensory stimulation
Ambiance, sound and light can all play a role in whether a person with
dementia experiences a sense of calm or stress. Well lit spaces without
confusing glares or shadows, low noise levels and generally quiet surroundings
can reduce confusion and stress for a person with dementia.
Some levels of activity can be over-stimulating for person with dementia
and a potential trigger for irritability. On the other hand, a person with
dementia may be irritable because they are bored or lonely, and lack sensory
stimulation. An environment that appropriately stimulates the senses, including
sight, sound, taste and smell, offers a unique opportunity to ensure the
overall well-being of the person with dementia (thus decrease behaviour
symptoms).
The use of aromatherapy is a growing field of complementary therapy.
Essential oils used in aromatherapy have been found to be safe and have shown
some positive results for promoting a sense of calm and even reducing
agitation.
Music has a way of having a positive impact on people with dementia.
Certain types of music calm and relieve tension and anxiety, while other types
of music can be uplifting and improve mood.
ü Daily routine and structure
People with dementia will benefit from routine and consistency. Keeping
regular times for activities, such as waking up, mealtimes, bathing, dressing,
exercising and bedtime, can help orientate the person and offer a sense of
security. Similarly, offering cues to distinguish the different times of day
can be done by opening the curtains in the morning to let the light in. An
evening ritual like playing meditative music or the use of aromatic oils may
help to signal the end of the day.
Sometimes, we simply cannot prevent behaviour but we can accommodate it
instead. For example, wandering or pacing is common in persons with dementia
and can be a symptom with many causes. Caregivers can accommodate this by
creating a safe physical space where the loved one can pace or wander with
minimal risk.
Dementia is clearly a condition where a person's ability to maintain his
or her own well-being is compromised. This results in expressions of distress.
(Source: Angela Lunde of Mayo Clinic)
