Incontinence is a common symptom of FTD and other dementias. But for both care partners and persons diagnosed, incontinence can be one of the more difficult symptoms to manage or even talk about, given its associations with private bodily functions and a perceived loss of dignity and independence. As FTD progresses, some persons diagnosed become unable to recognize their illness and may refuse or resist incontinence care or give off the “impression” they don’t care they are having accidents, further complicating matters.

FTD’s behavioral symptoms can contribute significantly to episodes of incontinence. Such symptoms include apathy, disinhibition, compulsive behavior, distractibility, and a lack of awareness about one’s condition (a symptom known as anosognosia) and movement changes. As the disease progresses, a person diagnosed with FTD may lose their ability to respond to the urge to use the bathroom; they may so do in a socially inappropriate location and may try to dispose of it in an unsanitary manner. Care partners should remember that such behavior is a result of FTD and is not done willfully by the person diagnosed.

Managing FTD Incontinence Episodes

While managing incontinence in FTD can be challenging for the person diagnosed and their care partner, the following guidelines can offer help:

• Request a referral for an occupational therapy consult to assess supports needed to maximize independence.
• Make a toileting schedule, with bathroom breaks scheduled every two to three hours, and try to follow it as closely as possible. It should include a scheduled toilet break right before bedtime.
• Regularly provide verbal and visual cues to use the bathroom. For example, leaving the bathroom door open throughout the day can promote more frequent toileting, as can leaving the light on at night.
• To further aid nighttime bathroom trips, use colored tape to make a path on the floor between the bedroom and the bathroom.
• Limit the amount of liquids consumed after dinner. And avoid caffeine, which is a diuretic and causes increased urination.
• Increase toilet visibility by painting the wall behind it or installing a floor surface in a contrasting color around the toilet.
• Using incontinence briefs can limit accidents. Depending on their other FTD symptoms, the person diagnosed may resist wearing incontinence briefs, so care partners may have to be creative: replace the contents of their underwear draw with the briefs or explain that they have been prescribed by their doctor.
• Have the person diagnosed wear clothing that is easier for them to remove when the urge to use the bathroom arises, particularly if FTD is deteriorating their fine motor skills. For example, they can wear pants with elastic waistbands rather than pants with buttons.

Accidents Will Happen

While the above strategies can help to reduce the frequency of accidents, they may still happen. Accidents are not merely messy – they can, potentially leading to infections.  Consider use of incontinent products such as Depends or sanitary pads. Keep on hand nitrile gloves, towels (paper or cloth), wet wipes, soap (hand sanitizer will work in a pinch), and disinfecting spray or wipes. Finally, when out of the house, toilet before leaving and bring a second set of clothing and extra supplies in a plastic bag; you can use the empty bag to store any soiled clothes.

People living with an FTD diagnosis may exhibit an involuntary grasp reflex, making clean-up difficult. Care partners can hand a rolled towel or other small object to the person diagnosed so they have something to grab besides their care partner.

Whether they occur in the home or in public, episodes of incontinence can be embarrassing for the person diagnosed, contributing to depression and feelings of social isolation, both of which are already common in FTD. Care partners therefore should try to remain calm and empathic. But accidents are inevitable. Give yourself grace if you become frustrated. And be sure to reach out to an AFTD support group or the AFTD HelpLine for additional advice, information, or words of encouragement.

To learn more about incontinence management, read Issue #10 of AFTD’s “Partners in FTD Care“. You can also receive additional guidance from the books “The 36-Hour Day,” by Nancy L. Mace, MA, and Peter V. Rabins. MD, MPH, and “What If It’s Not Alzheimer’s?,” edited by Gary Radin and Lisa Radin.