Understanding bowel incontinence in dementia care — what caregivers need to know

(Aging Untold) — Bowel incontinence is one of the most difficult — and least discussed — challenges in dementia caregiving.

We are breaking down why it happens and the practical systems that can make daily care more manageable for everyone involved.

“It’s neurological. It’s not intentional.”

The first thing caregivers need to understand is that bowel incontinence in someone with dementia is not a choice — it’s a breakdown in the brain’s communication system.

“It’s neurological. It’s not intentional, it’s not an accident. It is really a disruption in the communication system,” Dr. Rhea Rogers, a board-certified physician, said. “The gut and the brain are in constant communication always. And so what affects one affects the other — and it is through the vagus nerve.”

As dementia progresses, that communication can fail at multiple points.

A person may not receive the signal that they need to go. They may receive it but be unable to interpret it. Or they may understand it but be unable to execute the steps required — finding the bathroom, managing clothing and completing the process, Rogers said.

Sam Cradduck, a gerontologist, said it’s not laziness, stubbornness or a refusal to go to the bathroom.

“How many steps do we have to go through just to go to the restroom?” Cradduck said. “And if one of those steps gets broken — and it often does in dementia — then how does that person execute successfully?”

Why correcting the behavior makes things worse

Many caregivers instinctively respond to incontinence the way they might respond to a child having an accident — with correction or redirection.

“Please understand these people know how to do it — or they’ve known,” Cradduck said. “And because of brain damage, not because of any other reason, because of true brain damage they now are no longer able to execute it. And no matter how you correct them or shame them and treat them, it’s not going to bring that back.”

Amy O’Rourke, an aging expert, added that people living with dementia are highly attuned to the emotional energy around them. Frustration, judgment and distress from a caregiver can escalate the situation rather than resolve it.

“You could actually make it worse by trying to correct them,” O’Rourke said.

“You’re making it worse for yourself and you’re making it worse for them,” Katherine Ambrose, an aging-well coach, added.

Key takeaways for caregivers

• Recognize signs of discomfort. Before an accident occurs, watch for signs that your loved one may need to use the restroom — hiding, pacing, agitation or pulling at clothing.
• Create a restroom schedule. Cradduck recommends taking the person to the restroom approximately 30 minutes after meals and adjusting based on their individual pattern.
• Support personal privacy. Do not stand over someone while they are attempting to have a bowel movement. “None of us want to do that in front of somebody else,” Cradduck said.
• Modify the environment. Consider adding visual contrast to the toilet area, signage on the bathroom door or colored dye in the toilet bowl to help someone with memory impairment locate and identify the space, O’Rourke said.
• Be mindful of your response. Frustration, judgment and distress from a caregiver can escalate the situation rather than resolve it.
• Don’t fear incontinence products. Cradduck encouraged caregivers to set aside embarrassment and use available products. Reusable options have made them more affordable, O’Rourke said, and they exist to benefit both the caregiver and the person receiving care.
• Systems are the solution. Rather than reacting to each incident, build routines and environmental supports that reduce the likelihood of accidents and lower stress for everyone involved.

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