Granting dementia patients dignity and autonomy
by Ken Edmunds

Incontinence affects at least 60 to 70 percent of people living with dementia, and remains one of the top reasons why people are placed in long-term care communities. If the condition was not present before the diagnosis, it generally presents in the first few stages of dementia. This will often begin with urinary incontinence and will inevitably include fecal incontinence in the final stages. However, there are things caregivers and patients alike can do to delay, limit and even avoid episodes of incontinence—particularly in the early to mid stages. The first of these efforts begins here: We do not have to accept this symptom as a certainty of the disease.

The root causes of incontinence in the cloudy realm of dementia are not always physiological. In other words, the problem is not always the plumbing. Of course a physician consultation must be at the beginning of any strategy here, but when the cause is determined to be rooted in the disease (instead of the body), we can take action that will result in an improved outcome. Here are some common reasons that incontinence occurs in dementia:

  • Patients cannot recognize the urge to empty our bladder
  • Patients are wearing clothing that is a bit difficult to remove quickly
  • The path to the bathroom had confusing/difficult obstructions (furniture, TV, etc.)
  • The patient is taking prescribed medication to sleep
  • The patient is taking prescribed medication that affects the frequency of their need to eliminate either their bladder or their bowels (i.e. diuretics or stool softeners)
  • The patient has difficulty remembering where the bathroom is located

This list is certainly not exhaustive, but gives you an idea of the relatively minor hurdles that are easily remedied.

  • Watch patient voiding patterns and institute a scheduled toileting program or at least a scheduled “prompting” program (simply remind the patient to visit the bathroom and make an attempt). Just doing this will often eliminate or reduce episodes of incontinence in the early stages and helps form a schedule that could become habit
  • Eliminate clothing that presents disrobing challenges
  • Ensure that there is a clear path to the bathrooms and that bathrooms are very easily identifiable (sometimes just putting a picture of a commode on the door is helpful).
  • Review patient medications and be aware of how they manifest in symptoms. For example, if someone is taking a diuretic at breakfast, caregivers know they will be emptying their bladder frequently throughout the morning
  • Don’t limit fluids throughout the day, but taper them off as bedtime approaches
  • Find higher performing products that do not require as many changes and do not expose the skin to injury/chafing risk. This is especially true at night when patients need as little interruption to sleep as possible to enjoy a better disposition and more alertness to be able to enjoy more activities to make the next day as enjoyable as possible.

Lastly, there are ways that caregivers can respond to episodes of incontinence that will deflate the embarrassment and deliver dignity back to the person as quickly as it was lost.

  • Try to deal with an episode of incontinence as if they had a button undone on their shirt.
  • Diverting the topic of discussion to something else while you provide care is usually effective and calming.
  • Always offer as much privacy as safety allows.
  • Imagine it were you in this circumstance and let that govern your approach.

I would like to share an example from my own time as a caregiver in a memory care unit to illustrate the above points.

Stephen stood there, a wet stain quickly spreading over his pants and now beginning to drip onto the floor. He was obviously upset and his question to me was delivered with heart breaking urgency, frustration, embarrassment and confusion: “Where is the bathroom?”

At the time, I was standing just a few feet away from the large bathroom next to the dining hall in a memory unit. For those of us who have worked alongside of family members, loved ones and clients living with dementia, incontinence is a common occurrence as this terminal disease progresses.

How we respond to it has everything to do with the sense of dignity and confidence we can restore for our spouses, uncles, parents and grandparents living with dementia who are not giving us a hard time—but are having a hard time.

The plight of Stephen will grow more and more difficult. He is at the beginning of his embattled journey with dementia, which will ultimately consume the wonderful and unique person he is now. The only aspect that is unknown at this point, is how we can ease the burgeoning symptoms and maintain the highest quality of life possible for him during this time in his life. People such as Stephen are why I wrote this article, to share with you how to handle uncomfortable and difficult situations when dealing with dementia patients and incontinence tied to the disease.

With Stephen, I simply said, “I always have trouble finding this bathroom, too,” as I led him to the commode. As he prepared to sit down, I continued to talk about how it would be nice if there were more signs to aid us both. After I made sure he was seated, I closed the door and gave him the privacy we all deserve. While I waited, I asked one of the aids to bring a pair of pants from his room that would not clash with the blue shirt he had on.

When I checked on him, he had finished and I said, “I think something got spilled on these pants, why don’t you change into these before you come out and I’ll take the others to the laundry.”