While being a caregiver to unusual
or so-called “difficult” behaviors, it is quite common for persons
with dementia to display these types of behaviors and while many of
these behaviors are predictable, like repetitive questioning,
pacing, forgetting how to use common objects, etc., there are others
that are more upsetting to both the caregiver and the individual
with dementia. Agitation in the form of shouting, pushing, resisting
care; spitting out food; urinating in inappropriate places,
disrobing; wandering, etc., are the kinds of behaviors that are
truly unsettling and should prompt investigation. Special note
should be made of the fact that medication in the form of sedatives,
tranquilizers, and other “behavior” medications like antipsychotics
need not be the first step. Many of the medications given to help
control these behaviors can cause more harm than good. It is true
that in certain instances these types of medications are warranted,
but far too often these medications are prescribed as a knee-jerk
response when no or few other strategies have been attempted to
reduce the problem or are continued for far too long without
attempts to reduce the dosage or discontinue the drug.
Current thought on best practices
with regard to understanding difficult behaviors in persons with
dementia focuses on the concept of unmet need. As human
beings, we all have certain, basic physical and emotional needs:
air, food, water, sleep, comfort, love, safety, security, belonging,
etc. Individuals with dementia continue to have these needs despite
their disease; their disease, however, may make it more difficult
for them to express or satisfy these needs. For example, if I no
longer am capable of explaining an abstract concept like insecurity
due to the cognitive impairment I have related to Alzheimer’s
disease, yet I feel that way, how can I express it? If I have
physical discomfort due to arthritis pain in my hips and lower back
but cannot articulate the words to describe it due to the language
impairment I have related to Alzheimer’s disease, how can I tell you
that I am in pain when you try to get me out of my chair? I may
“show” you by resisting, or withdrawing, shouting, striking out or
any number of other ways that seem like difficult behavior. When in
fact, I am trying to “tell” you that I have an unmet need: I am in
pain; I need comfort.
As caregivers, you know your loved
one well. You may be surprised when he or she does something out of
character or behaves unusually. You may be tempted to respond
abruptly or seek strong medication to curb the problem. Better
strategies would include an analysis of the potential causes of the
behavior focusing on unmet need. Some common themes related to
physical need: Is your loved one in pain? Many older adults have
chronic pain that research tells us is inadequately or even
un-treated. The addition of a regularly scheduled mild analgesic may
be of tremendous benefit. Could your loved one have an infection?
The most common infections that we see in older adults with dementia
are urinary tract infection, pneumonia, and skin infections from
scratches or open wounds. This can be very uncomfortable for the
individual and definitely contribute to exaggerated behaviors. You
would need to see a physician for treatment of these. Could your
loved one be dehydrated? As we get older, we have a diminished
thirst response and coupled with common medications that older
adults take, like diuretics (“water pills”) that further dehydrate
them, you could see increased confusion. Is your loved one
uncomfortable due to constipation? Again related to poor fluid
intake and certain medications (add calcium supplements to the
list), lack of exercise, and limited dietary fiber, older adults are
at risk for constipation which can be very uncomfortable. Simple
strategies like providing regular liquids throughout the day, adding
fiber to the diet and a daily walk can help.
Some common themes related to
emotional need: Is your loved one bored? Are they wandering or
trying to leave your home to find something more interesting to do?
Conversely, is the day too busy or too overwhelming and they are
looking for more quiet time? The best days for persons with dementia
are when they have balance between sensory stimulating and sensory
calming activities. Is your loved one frightened of being left at
home alone? Are they feeling sad or depressed? The research tells us
that the rate of un or under-treated depression is quite high in
older adults with dementia. Providing social times and opportunities
for continued belonging are important; consider a pet, plant or an
indoor garden to offer care responsibilities and purpose to the
individual with dementia.
It may take some time before you are
able to identify the potential causes of the challenging behavior,
but understanding that it may be the result of an unmet need is an
important first step. Unfortunately, there are behaviors that we may
never be able to understand as they are part of the mystery of this
challenging illness. Finally, it is very important to have a care
team that accepts this approach to behaviors as well. Understanding
challenging behaviors is key to meeting your needs as a caregiver!
Sharon Roth
Maguire is the Senior Director Healthcare and Resident Services for
Alterra Health Care Corporation and serves as Clinical Assistant
Professor (Adjunct) at Marquette University College of Nursing. She
has written and taught extensively on the subject of gerontology,
particularly in relation to designing appropriate environments for
people with dementia and frequently coordinates the development of
geriatric education programs and facilities. She has great
experience in helping caregivers who are coping with the challenges
of loved one’s living with Alzheimer’s disease and other dementias.
Send your comments or questions to editor@caregiver.com
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