Tips for Managing Incontinence with Frontotemporal Dementia


By Geri Hall, PhD, ARNP, GCNS-BC, FAAN

Always make sure the doctor does an evaluation to rule out infections, tumors, etc. for both urinary or bowel incontinence.

If the patient is still early in the disease, there are two frontotemporal dementia-specific issues:

Many people with this condition have bowel and bladder accidents when over stimulated, such as at a shopping center. I would use this as an indicator of how much stimulus the individual can manage and try to avoid crowds, loud places, etc.
Try to get him/her to wear a protective garment. Many refuse the bulkier garments. A one-size pull-up brief might be more comfortable. You are not going to ask permission, but say, “If you are coming with me, put these on.”

Make sure he/she is taken to the toilet (or insist they go) 20 minutes after the first meal. There is a normal reflex that makes us want to have a BM then, so you can try for an evacuation.

Avoid all caffeine as it irritates the bladder.

Do not leave him or her outside to wait for you as anxiety will build.

Increase general fluid intake during the day to enhance the urge to urinate.
Plan “pit stops” every two hours while out.

People with this condition have abulia (failure to initiate) and do not recognize they need to find a toilet when the urge presents. I had one client who would wake each morning and then have a BM in bed. It upset his wife as she thought he was doing it to be rude to her. He was continent the rest of the day. All she had to do was wake him at 6 am and tell him to go to the bathroom and he evacuated normally. So, prompting and directing should become a way of life after noting what the patient’s usual schedule is.

In later dementia, the person may have incontinence that may not respond to prompting. This is usually managed by continuing to try to prompt, but using the incontinence products even doubled when necessary. Pad the bed with lawn and leaf bags under the sheets and make a draw sheet to minimize the amount of late night changing.

Provide adequate fiber using two large oatmeal raisin cookies each afternoon with a glass of liquid.

Incontinence briefs need to be changed two or three times per day even if not soiled because of the risk of urinary infections.

To help the individual adapt to the briefs, take the underpants out of the dresser drawer and replace with pull-up briefs. After a while, they will “get it.”
Finally, if there are “accidents” on a rug, use a pet disinfectant. Standard cleaners do not kill the fecal bacteria.

Geri Hall is a Gerontology Clinical Nurse Specialist who has been working with families and dementia since 1978. A retired professor from University of Iowa, Geri has been a consulting professional to the Washington University in St. Louis “The Alzheimer List” for 13 years.