Dementia is a devastating disease
that affects approximately 24 million people
worldwide; its most common form, Alzheimer’s
disease, affects more than 4.5 million people in the
U.S. according to the Alzheimer’s Association. The
disease slowly robs individuals of their memory,
cognitive functioning, and eventually renders the
person almost completely dependent upon others for
their daily care. Though the causes are not
completely understood, caregivers feel the strain of
the disease daily as they help those affected with
dementia to navigate the simplest of tasks such as
getting dressed or eating meals.
Urinary and fecal incontinence can
also be present in those who are affected with
dementia. Though this loss in bodily functioning may
be inevitable, it can be uncomfortable and
embarrassing to the patient and the caregiver.
Incontinence can be caused by a variety of issues,
and it may help to understand some of those causes
to help the household cope with it. The National
Association for Continence (www.nafc.org) relates
that most people wait an average of seven years
before seeking treatment. This delay in seeking help
often exacerbates an already stressful situation for
both patients and caregivers.
In its simplest form, urinary
incontinence is when someone does not have complete
control over when he or she urinates. It may appear
due to several reasons, and to make certain which
one it is, the patient should be examined by a
physician as soon as possible.
Stress Incontinence - women who have
had a baby or two may understand this type of
incontinence the best. A forceful sneeze or cough
may cause urine leakage since the muscles in the
pelvic region can be loosened by childbirth.
Normally Kegel exercises (tightening and releasing
the pelvic muscles several times per day) can
provide some strengthening, although it may not work for all women.
Urge Incontinence - the urge to
urinate may develop suddenly, resulting in urine
leakage. Many people who have this type of
incontinence are not given ample warning to get
to the bathroom in time before leakage occurs.
It is fairly common in the elderly, although it
can be a sign of a bladder or kidney infection.
If an infection is causing the incontinence,
antibiotics can generally clear up the condition
within a short period of time.
Overflow Incontinence - this type of
incontinence is more common in men than women
and results from an overfull bladder that does
not empty effectively. It results in urine
leaking on almost a continual basis. A blockage
in the urinary tract system is generally the
cause, like an enlarged prostate or other
obstruction. A physical exam is a must for this
type of incontinence in order to accurately
diagnose and treat the condition.
Functional Incontinence - in this
type of incontinence loss of bladder control is
caused by other conditions. For example, the
person who is arthritic and does not move well
may develop incontinence due to their inability
to get to the bathroom in time. As dementia
develops over time, this type of incontinence
may be more prevalent and possibly more
frustrating to treat since the cause is a
symptom of the underlying disease and not easily
attributed to an infection or other issue.
This type of incontinence causes a
great deal of distress for many persons with
dementia and their caregivers. Bowel
incontinence can be partial when only a small
amount of liquid waste leaks before toileting.
Complete incontinence results when the person is
unable to control any aspect of the bowel
In order to understand why someone
has developed incontinence, a medical exam is
definitely in order. Since there may be special
complications due to dementia, it is best to
start with the patient’s primary physician since
he or she is most familiar with the patient and
their health history. He may order a visit to a
urologist, a specialist in urinary conditions
for men and women. It is important to remember,
however, that a urologist is a surgeon and may
not focus on non-surgical solutions, like the
ones that will be discussed later.
When visiting the doctor, bring a
description of how incontinence is affecting the
patient’s life, including an overview of their
daily routine. Some doctors recommend keeping a
continence diary to provide a four or five day
“snapshot” of what is happening at home. Be
prepared to answer questions like the ones
suggested by the National Association for
Continence. The questions below are only a few
from their suggestions.
- How much water does the
patient drink every day?
- What foods is the
- Does the patient have
any control over urination?
- Is the problem better or
worse during the daytime or at night?
- Is it linked to a
physical condition (inability to move quickly,
- When did the
incontinence first appear?
- Is the patient upset by
- How many episodes does
the patient have and in what time period?
- Does the patient
understand the signal or urge to urinate or are
they unaware of the need?
- Is there a burning or painful sensation when
the patient needs to urinate?
If the incontinence is due to an
underlying medical condition, such as a urinary
tract infection or a bowel obstruction,
treatment can range from antibiotics to surgical
intervention. The decision, of course, will be
based on the severity of the condition and the
best course of action for the patient. It is
important to remember that incontinence is not a
disease, but rather a symptom of an underlying
issue that has developed with the patient.
If a medical condition is readily
ruled out, the doctor may move on to other
options like medications that treat the
bladder’s urge to urinate or the frequency with
which the bladder sends the “alarm” to the body
that urination is about to occur. These
medications are generally anticholinergics and
have the effect of reducing frequent urges to
urinate when the patient is unable to make it to
a toilet fast enough. These urges may be made
worse by the dementia since the signal that
urination is about to occur may be misunderstood
or misinterpreted by the patient.
Recently, however, researchers with
the Wake Forest University School of Medicine
uncovered a serious problem with older
anticholinergic medications and medicines that
are used to lessen the mental decline in
cognitive functioning in some dementia patients.
In many patients, the anticholinergic
medications that treat incontinence interfere or
counteract the medications that are also
treating dementia. In other words, patients with
dementia may experience a more rapid decline in
mental functioning while taking anticholinergic
medications. For these patients, treating the
incontinence with medication is worse than
finding alternative solutions for working with
the issue. There are newer anticholinergic
medications that were developed since the
study’s original test results in 2003 and 2004
which may or may not have this effect. This is
perhaps the best reason to discuss any
medications that a dementia patient takes with
their primary doctor before starting a new
There are other non-medication or
surgical methods that can be used to treat
incontinence at home. Adaptive clothing may be
able to help if functional incontinence is an
issue. Replacing hard-to-manipulate buttons and
snaps with Velcro and zippers may be a quick fix
if it appears that the patient is aware of the
incontinence and wants to correct it without too
much intervention on the part of the caregiver.
This approach gives the patient more control
over their environment and encourages
independence. It also affords the patient the
most privacy which is often a serious source of
angst for many patients. There are also
incontinence products for all ages and sizes
that may be helpful, although the patient may
have difficulty understanding their use and
disposal. Communicating the need for these
products may be a challenge, and the caregiver
may need to explain their use more than one time
in order for the patient to understand.
Other methods may be home
modifications or adding a portable toilet chair to
the room(s) where the patient spends most of his or
her time. This method is relatively easy to
implement, although it may need some additional
explanation since patients with dementia wonder why
the caregiver is altering the living situation or
the layout of a particular room. Any approach that
changes the daily routine of a dementia patient
drastically should be undertaken thoughtfully and
with as much input from the patient as possible.
The doctor may also recommend
changes in diet, both fluid and foods, that can help
treat incontinence. If bowel movements are not
regular or consistent, then changing foods in the
diet may make a significant improvement within a
relatively short period of time. The patient may or
may not resist such changes, especially if he or she
has developed a resistance or affinity to particular
foods due to dementia. It is important to discuss
dietary changes with a physician or dietician so the
patient is still eating balanced meals and snacks.
Fluid intake should also be closely monitored.
Caregivers of dementia patients
should understand that incontinence may be an
inevitable part of the overall cognitive decline. As
a person loses awareness of their surroundings,
lifestyle, and loved ones, it is not surprising that
loss of bodily functioning will also occur. It may
be a tremendous source of frustration for both the
caregiver and the patient. Communicating the
incontinence issues early with the patient’s
healthcare team can help reduce some of the
frustration that the household may have with the
issue. Even though it can be an uncomfortable
subject, it is important that the full needs of the
patient be addressed. The sooner incontinence is
addressed, the quicker the patient and the caregiver
can begin to work with options that may reduce the
frustration or embarrassment that is involved.
Subscribe to our weekly e-newsletter