Managing Dementia Related Incontinence
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 (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.
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.
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.
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.
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 movement.
Dementia Related Incontinence
A person with dementia is more likely to have accidents, problems with the toilet or incontinence than a person of the same age who doesn’t have dementia.
The reasons for this can include:
- not being able to react quickly enough to the sensation of needing to use the toilet
- failing to get to the toilet in time – for example, because of mobility problems
- not being able to tell someone that they need to go to the toilet because of problems communicating
- not being able to find, recognize, or use the toilet. If someone becomes confused about their surroundings, they may urinate in an inappropriate place (such as a wastepaper basket) because they have mistaken it for a toilet
- not understanding a prompt from someone to use the toilet
- not being able to, or forgetting how to, perform the activities of using the toilet, such as undoing clothing and personal hygiene
- not letting others help with going to the toilet, perhaps due to embarrassment or not understanding an offer of help
- not making any attempt to find the toilet – this could be due to depression or lack of motivation, or because the person is distracted
- embarrassment after an accident, which the person unsuccessfully tries to deal with. This may lead to wet or soiled clothes or feces being put out of sight. For example, they may be wrapped up and put at the back of a drawer to be dealt with later, only to be forgotten about.
For some people, incontinence develops because messages between the brain and the bladder or bowel don’t work properly. This may mean people don’t recognize that they have a full bladder or bowel, or have the control needed to empty them. However, this is not a common cause of toilet problems and incontinence in people with dementia. It usually only occurs when the person’s dementia is more advanced.
Things to Try
If you can find a reason for the accidents, it becomes easier to find an approach that will help prevent them in the future. If, despite your best efforts, you are not able to determine a specific reason, try the following strategies:
Around the house
- Make the toilet easy to find. Clearly mark the path on walls and/or floors; ensure that there are no obstacles; label bathroom doors with words or pictures or both. Use nightlights in dark areas.
- Use a contrasting colored toilet seat.
- Colored masking tape around the perimeter of a toilet or colored water may prevent accidental misses due to perceptual or visual losses.
- Use garbage cans with lids, so they’re not mistaken for toilets.
- See if the mirrors in the bathroom are a problem: she may feel like someone else is in the room.
- Remove any obstacles in the way in the bathroom, for example, plants or wastepaper baskets, so he can get straight to the toilet.
- Leave the door open to the bathroom when not in use.
What the caregiver can do
- Watch for visible cues that the person needs to use the bathroom. For example, the person may get restless, make unusual sounds or faces, or pace around the room.
- Give her simple instructions.
- Give reminders to go to the toilet regularly, e.g., every two hours, in the morning upon getting out of bed, at bedtime or before going out.
- Choose easy-to-remove clothing, such as Velcro closings or elastic waists.
- Direct him to the front of the toilet before removing clothes.
- For men, try putting a decal inside the toilet bowl to have something to “aim at.”
- Give a cue to get started, such as running water or certain words. Try to ensure that the bladder is completely emptied.
- Leave her alone if she prefers, but stay nearby. You can tell her that you are “just outside the door if she needs anything.”
- If staying seated is a problem, distract him with favorite items to look at or hold.
- If incontinence during the night is a problem, make sure she doesn’t drink too much just before going to bed. But do not withhold fluids during the day.
- Make sure he uses the toilet before going to bed.
For safety’s sake
- Provide good lighting. See The Right Lighting Prevents Falls.
- Install hand rails beside the toilet to make sitting down and getting up easier. See Guide to Bathroom Grab Bars and Hand Rails.
- Install a raised toilet seat, to make getting on and off easier. See How to Buy an Elevated Toilet Seat.
If Accidents Continue
Once you’ve determined that there are no medical or medication problems causing the accidents, some of the above ideas might keep her dry and clean. If accidents continue to occur, products such as disposable underwear, incontinence pads, panty liners (for women) or protective bedding might be helpful. These may be useful at certain times or in specific situations. Use them only if necessary. Even when wearing pads, take him to the bathroom on a regular basis.
Incontinence can lead to skin irritation and make him feel uncomfortable. If clothing becomes wet or soiled, help him to change right away, wash with mild soap and warm water and dry afterward. Then provide dry clothes.
Day to Day
In the event of an accident, it is important not to get angry or draw attention to what has happened. This can cause embarrassment or more upset. Cleaning up after a parent or spouse is not pleasant.
Remember that accidents are caused by the disease; they are not his fault. He may be as distressed as you. Try to maintain his dignity with encouragement. Remain calm. It is important to remember that you are doing the best you can.
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 patient eating?
- 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, for example)?
- When did the incontinence first appear?
- Is the patient upset by their incontinence?
- 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 treatment course.
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 (commode) 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.
If you are caring for someone with Alzheimer’s Disease, there are two terrific books available on Amazon which I think you’ll find extremely helpful: Surviving Alzheimer’s by Paula Spencer Scott and The 36-Hour Day by Nancy Mace and Peter Rabins.
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