Managing Incontinence
One of the most challenging aspects of being a caregiver for a loved one with Alzheimer’s can be dealing with incontinence of the bladder and bowels. Unfortunately, these are common conditions faced by up to 70% of those afflicted with Alzheimer’s particularly in the mid to late stages of the disease. With the right understanding of these conditions and a careful approach to helping your loved one, however, incontinence can be dealt with effectively while still maintaining your loved one’s sense of dignity and privacy.
Causes of Incontinence
The basic problem when incontinence is present is a lack of control of bladder or bowel function. When our mind and body is healthy, specialized neurons send a regular series of signals to the muscles of the bladder and bowels regulating movement of fluid and stool. Incontinence occurs when there is a disruption of the signals coming from the nervous system or weakness of the involved muscles.
If incontinence occurs, it’s best to check with your loved one’s physician, first, to review the wide range of possible causes. Your loved one’s incontinence may be due to a urinary tract infection, for example, an inability to respond to typical cues, a gastro-intestinal problem such as constipation, or for men, an issue with the prostate. Chronic illnesses such as Diabetes and Parkinson’s disease may also contribute to the cause, as can medications such as sleeping pills and other sedating medications such as anxiety-reducing drugs or pain medications and other medicines that might have diuretics (aka “water pills”) as a side effect.
Some causes of incontinence are unique to people with Alzheimer’s disease due to disruption in specific cognitive abilities. For example, your loved one may forget where the bathroom is located, be unable to express the need to go to the toilet/bathroom, or get confused about how to use the toilet; these changes reflect the damage done to memory and executive function centers in the brain. For some, these changes can lead to disorientation, even in familiar settings. In some cases, individuals cannot react appropriately to the biological signals for the need to use the toilet or have difficulty carrying out multi-step processes such as going to the bathroom and using the toilet properly.
How To Talk About Incontinence With Your Loved One
When talking to your loved one about incontinence, it’s important to keep in mind how truly upsetting it can be. Try to hide any upset and do all you can to avoid a scolding tone or say anything that might make them feel guilty. Avoid using the word “incontinence” altogether, and instead refer to “leaks.” Your ability to show patience and empathy, and not call too much attention to the issue, will go a long way to helping your loved one.
Here is an example: When talking to your loved one about a bout of incontinence, be matter-of-fact, taking pains to respect their privacy and dignity. You might use phrases such as “It looks like you’ve had a leak; that can happen to anyone” or “It appears that something spilled on your pants; such things can happen” and then simply “Let’s go and get changed”.
Should the need arise to use absorbent undergarments (see below), don’t use the word “diaper”, as it could cause them embarrassment and low self-esteem. Instead use the term “briefs” or “pads”, or the brand name of the product itself. If your loved one is resistant to the idea of such undergarments, point out that these products can help them “avoid leaks” (which most people want to do) just in case the bathroom isn’t nearby when they need it (blame the bathroom or the physical surroundings not your loved one).
MANAGING INCONTINENCE
Managing incontinence in your loved one can be broken down into three basic categories: Behavior, Environment, and Clothing.
BEHAVIOR: Pay attention to the cues that your loved one may be giving you.
Be supportive of your loved one and encourage them to let you know when they need to go to the bathroom.
Help your loved one go to the bathroom on a regular basis, such as every two hours, after every meal, when getting ready to leave home or another location (e.g. after church services).
For those in later stages, keep a look-out for fidgeting, agitation, anxiety, or facial cues that might suggest that they need to go to the bathroom.
Listen for “trigger words” that may indicate that your loved one needs the toilet. They may say something like “I need some water,” for instance, but it really means that they need to go to the bathroom.
If leaks do occur, make note of the timing and try to see if there is a pattern that you can get ahead of next time to avoid the leaking.
Cut down on the amount of fluids your loved one drinks prior to bed; however, do not cut down on fluids overall, except limiting the consumption of caffeine-containing drinks such as coffee, tea, and some soft drinks.
ENVIRONMENT: Create an environment that makes it easier for your loved one to find and use the toilet.
Make the bathroom stand out by painting the door a different color, putting a photo of a toilet on the door, or putting on a brightly-colored toilet lid cover.
Keep the door ajar to make it easier to open and make the toilet visible
Make sure the bathroom has adequate lighting and keep those lights on at night
If necessary, lay down colored tape on the floor that shows the pathway from your loved one’s bedroom to the toilet, and consider marking the toilet in a different color from the floor, to help distinguish it
In the bathroom, remove wastebaskets and other similar furniture that might resemble a toilet to your loved one.
In later stages, or if your loved one’s mobility is limited, consider using a portable commode which can be set next to the bed to allow easier toileting.
PERSONAL / CLOTHING: Adapting your loved one’s clothing and personal bedding can avoid multiple laundry efforts.
Make sure your loved one’s clothing is loose, easy to remove, and is easy to clean.
Encourage the use of one of the many brands of absorbent adult briefs and pads available at local drug stores and supermarkets. Keep in mind that there are overnight versions that are the most absorbent and can be used in the daytime as well.
Invest in mattress covers that are waterproof and absorbent bed padding to protect the mattress, and for chairs if necessary
Speak to a Urologist for men/women or a Uro-gynecologist for women about procedures or other strategies for managing urinary incontinence in daytime and overnight. As an example, a urologist can help you learn about a “continence” sheath that can be helpful for males, particularly during sleep.
Many caregivers say that coping with incontinence is one of the most challenging parts of their duties. But with patience, compassion, and the latest tools, you can manage this challenge while preserving your loved one’s privacy and dignity.
Please talk with your own/loved one’s healthcare provider before using any of this information.
