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For people with Down syndrome, family members, caregivers and professionals.

Urinary Incontinence

April 2024 | Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

Key Points

  • Urinary incontinence or urinary "accidents" are more common in people with Down syndrome.

  • There are many potential causes. 

  • The inability to empty the bladder completely (urinary retention) is more common in people with Down syndrome and can cause urinary incontinence.

  • A thorough evaluation by a health care provider can find the cause and indicate the appropriate treatment.

  • There are several strategies to use at home to reduce urinary incontinence. 

 

What is urinary incontinence?

Urinary incontinence is the inability to control urination resulting in “accidents” or involuntary passing of urine. Urine is made in the kidneys and passed through the ureters to the bladder. When we urinate, the urine passes through the urethra to outside the body. The normal urinating function (voiding) involves both voluntary and involuntary components.

As the bladder fills, nerves pass a signal to the brain alerting us to the need to urinate. In the normal situation, when we are ready to urinate, signals are sent from the brain back to the bladder. The automatic part of the nervous system (the autonomic nervous system) takes over by relaxing the sphincter (the muscle that does not allow urine to pass from the bladder to the urethra). This causes the muscle of the bladder to contract to reduce the size of the bladder and push the urine into the urethra.

Interruption in normal function of any of those steps can cause urinary incontinence. 

  • Abnormalities in the autonomic nervous system sending signals away from the bladder or to the bladder. 

  • Lack of awareness or acknowledgement of the signals received in the brain.

  • Poor function of the bladder muscle.

  • Obstruction of the urine from passing through the urethra to outside the body.

 

Causes

There are many possible reasons why a person may become incontinent. Some of them are directly related to the urologic system and some are related to problems affecting other body systems. Causes include:  

  • Urinary tract infections (UTIs)

  • Overflow incontinence

    • This occurs when a person has a large volume of urine and, in effect, the urine spills out or spills over. This can be caused by an obstruction that reduces the passage of urine out of the bladder. It can also occur if the bladder muscle is weak or not contracting well. In either case, the bladder is not emptied in the usual fashion and urine leaks when it overflows. The inability to empty the bladder completely is called urinary retention. 

  • Intellectual disability

    • Decreased cognitive ability may contribute to not understanding or acknowledging body cues that signal the need to urinate. It may also limit the person's ability to respond appropriately to those cues by going to the bathroom to urinate.

  • Spasmodic or hyperreflexia of the bladder

    • This is also called overactive bladder opens in new window. In this condition, the bladder muscle tends to contract frequently and in response to smaller amounts of urine being present in the bladder. This can cause the person to urinate frequently and to have incontinence. 

  • Medication side effects

  • Diabetes mellitus

    • In uncontrolled diabetes, a large amount of urine is made. It may be difficult to acknowledge the full bladder and get to the bathroom in a timely fashion.

  • Any condition that makes it more difficult to get to the bathroom in a timely fashion (e.g., osteoarthritis)

  • Atlantoaxial instability (AAI) or spinal cord impingement at any level.

    • This can impair the nervous system function of the bladder.

  • Seizures

    • Incontinence often occurs when someone has a seizure.

  • Alzheimer's disease

    • ‚ÄčImpaired cognition can contribute to incontinence. The autonomic nervous system also seems to develop impairment in Alzheimer's disease.

  • Behavioral or psychological issues

    • They may cause the individual to have incontinence for a variety of reasons.

 

Why is it important in Down syndrome?

Urinary incontinence is more common in people with Down syndrome for a variety of reasons.

Urinary tract infections (UTIs)

Some individuals with Down syndrome seem to be more susceptible to UTIs (or bladder infections). Some risk factors for UTIs in people with Down syndrome include:

  • Some individuals do not response to the sensation of a full bladder in a timely fashion. Regularly not emptying a full bladder increases the risk of getting a UTI.

  • The hygiene habits of some individuals can increase risk. Inadequate wiping or wiping from back to front after a bowel movement may increase risk. 

Overflow incontinence

The function of the autonomic nervous system is different in people with Down syndrome, which may contribute to urinary retention being more common in people with Down syndrome. When the bladder is not emptied appropriately, it can become distended or enlarged and then urine can leak out or overflow.

Intellectual disability

Some degree of cognitive impairment is part of nearly all individuals with Down syndrome. They may have limited perception of the body's cues that they need to urinate. They also may not take the appropriate steps in response to those cues and not get to the toilet.

Spasmodic or hyperreflexia of the bladder

In our experience, this is not more common in people with Down syndrome and may be less common or at least not commonly reported. The treatment for this relaxes the bladder and reduces the frequent contraction of the bladder. People with Down syndrome seem to be particularly sensitive to the action of these medications. Therefore, treatment for spasmodic bladder may cause the opposite problem in people with Down syndrome (urinary retention). See below on medication side effects.

Medication side effects

People with Down syndrome are more susceptible to some medication side effects including anticholinergic side effects. Medications with these side effects (such as diphenhydramine/Benadryl, some antidepressants, and others) increase urinary retention and urinary incontinence.

Diabetes

Type 1 diabetes typically has onset in childhood and requires insulin. This is more common in people with Down syndrome. Type 2 diabetes typically has onset in adulthood and is often associated with being overweight or obese. Type 2 diabetes is usually treated with oral or injectable medications but may require insulin.

There are conflicting studies on whether type 2 diabetes is more or less common in people with Down syndrome. Increased volume of urine is a common symptom of an elevated blood sugar due to uncontrolled diabetes. The increased urine volume sometimes causes urinary incontinence. 

Osteoarthritis and other conditions that affect mobility

People with Down syndrome are at increased risk for a variety of conditions that impair function of joints. Immobility can make getting to the bathroom in a timely fashion more challenging and can contribute to urinary incontinence. Some individuals with Down syndrome have difficulty verbally expressing that they have pain from arthritis. It might only become clear when they start having immobility or other decreased functional abilities which can result in changes such as urinary incontinence. 

Atlantoaxial instability (AAI) or other spinal cord problems

People with Down syndrome are more at risk for developing AAI, a condition that can result in compression and injury to the spinal cord. Spinal cord injury can affect a person's walking ability as well as impair neurologic function of the bladder. Both can contribute to incontinence. 

Seizures

Seizures are more common in people with Down syndrome and incontinence is common during a seizure.

Alzheimer's disease

Alzheimer's disease is more common in people with Down syndrome. Urinary incontinence may be caused by the neurologic impairment, immobility, or decreased cognitive awareness of the need to urinate. Dysfunction of the autonomic nervous system also seems to be a complication of Alzheimer's disease. 

Behavioral or psychological issues

Behavioral challenges and psychological conditions are more common in people with Down syndrome. An adult with Down syndrome might become incontinent due to behavioral or psychological issues. They can contribute to some individuals not using the toilet when they feel the urge, purposefully urinating in inappropriate places, or other reasons. Sometimes, stress can contribute to incontinence. Some individuals become incontinent, particularly in new settings, because they do not know where the bathroom is located, or they feel they do not have permission to use the bathroom. 

 

Diagnosis

If an individual with Down syndrome develops incontinence (assuming the individual was continent and not having accidents previously), the first step is to get an assessment by a health care provider. The assessment can often be performed by the person’s primary care provider. The assessment will include a history and physical exam to check for the problems noted above (and perhaps others as well). Based on the history and physical, additional testing may include: 

  • Urinalysis and urine culture to assess for infection, blood in the urine, and other abnormalities.

  • Blood testing to assess kidney function, diabetes, and other abnormalities.

  • Bladder scan or ultrasound of the bladder before and after an individual urinates to assess how the bladder fills with urine and empties; also, to look for abnormal anatomical changes of the bladder.

  • Lateral cervical spine (neck) x-ray to assess for AAI.

  • A cystoscopy to assess for obstruction or other abnormalities. This test is usually done by a urologist. It involves passing a scope through the urethra into the bladder to visualize the urethra and bladder.

  • CT or MRI of the spine and/or brain to check whether anything is impinging on the spine and to assess for a brain mass or other neurologic abnormalities. These tests might be ordered by the primary provider, a urologist, a neurologist, or a neurosurgeon. 

  • Electroencephalogram (EEG) to assess for seizures.

If these problems are all ruled out, the next step would be a psychological evaluation performed by the primary provider, a psychologist, a clinical social worker, or a psychiatrist to assess for behavioral or psychological issues.

 

Treatment

The treatment for urinary incontinence depends on the cause. Specific treatments for a variety of conditions are included in the links above.

An additional treatment that a health care provider can prescribe is desmopressin/DDAVP.  This is a medication sometimes prescribed if incontinence occurs during sleep (bedwetting/enuresis).

At-home treatments

A variety of techniques and strategies can be used at home or in various settings:

  • Encouraging the individual to urinate every 2 to 3 hours to avoid overfilling of the bladder.

  • Using a timer that reminds the individual to urinate every 2 to 3 hours.

  • Ensuring the individual knows where the bathroom is in new environments.

  • Reminding the individual that they have permission to use the toilet as needed.

  • Instructing on appropriate wiping techniques. Some individuals benefit from the use of a bidet. Additional suggestions are included in our Toilet Hygiene article. 

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Please note: The information on this site is for educational purposes only and is not intended to serve as a substitute for a medical, psychiatric, mental health, or behavioral evaluation, diagnosis, or treatment plan by a qualified professional. We recommend you review the educational material with your health providers regarding the specifics of your health care needs.

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