Hi Mariah,

This is a complication that I haven't heard about but makes perfect sense when it comes to the disease. Many people with dementia, if they wear pads for incontinence, will remove the pads. They also tend to pick at scabs and anything else that grabs their attention. I think I'd ask a doctor or nurse who specializes in dementia for ideas, since her regular medical doctor may not have had to cope with this issue before. You can also ask this question of the Alzheimer's Foundation of America (www.alzfdn.org) or call your local AD organization. 

I'll be watching this space for practical ideas, as well. The only thing I can think of is to camouflage the bag and secure it as tightly as possible to keep her from taking it off. Hopefully, you'll hear some more creative suggestions from the Foundation.

Good luck,

Carol

mariah

8/23/12 11:21am

Thanks for your response.  We've tried a hernia belt, but she took that off and hid it (in a different room).  We also talked with the surgeon who has known her for years, who suggested meds for the dementia.  They put her on Halidol, which really didn't help and had the side effect of incontinence.  She was taken off the med, but the incontinence has stayed.  I will try contacting the Alzheimer Foundation and see if they have any ideas.  This is all so sad.

Hi Mariah

People with Alzheimer’s removing colostomy bags, dressing on wounds, IVs etc is a common problem. As you report it causes problems with many different aspects of personal hygiene, can cause infection, and if a patient becomes highly fixated on the colostomy site can become a major problem.

One thing that can be helpful is to identify at what times of day your Mum shows interest in the stoma site. Is it when the bag is full, your Mum has discomfort near a voiding time, or for instance, when she is bored and inactive? In other words, does it seem to be a response to a physical or mental stimuli? And then how does this lead to the behavior? Trying to work this out gives you something to work with. Your problem then is, who works with your Mom on an intervention program and establishes it into her daily activities!

Carol has some good ideas about keeping her hands away from the stoma site that can be worked on. Medication can be helpful but as you have found can cause side effects in some people and can restrict mobility. Either way it does highlight one big problem, as Nina says in her answer, your Mom requires higher staff input if this problem continues.

Christine

irst and foremost, I highly recommend discussing your mother’s behavior with her primary care physician. The colostomy bag can be causing her pain, which is why she may be removing it. There are different types of colostomy bags available today; perhaps your mother’s doctor can evaluate her to find out if a different one would be a better fit. I read in your post that your mother’s surgeon had started her on Haldol, but that medication has been discontinued. I would suggest your mother be evaluated by a psychiatrist, to find out if any other medications could be beneficial.

You should also consider behavioral interventions to help decrease removal of the colostomy bag.  If she is kept busy, and she is allowed to expend her energy in a safe, healthy manner, she may not remove her colostomy bag and hide them. Find activities that you think she may like that will require the use of her hands. Folding, gardening, mixing cooking ingredients, and coloring are good examples. Sometimes activities that have an instant gratification value are helpful too – such as popping a sheet of bubble wrap.

Since your mother is also hiding the colostomy bags, this can be considered a form of hoarding. Hoarding is a behavioral symptom that can be present in some individuals with dementia. Individuals with Alzheimer's disease or dementia may hoard not out of a need to collect things, but rather out of confusion about how to handle a particular situation. Your mother may be acting out her fear of the colostomy bag. She has a foreign object (a bag) connected to her, and this can cause her to become more confused, and agitated, which results in her removing it. Perhaps, the person putting on the colostomy bag on her can verbalize all the steps in a calm tone to help ease your mother’s anxiety over it.