Challenging Situations with Dementia Care

Caregiver Corner
By Jennifer Beach

I had a conversation with Mr. Smith’s adult daughter, Sharon. She was upset, confused and embarrassed to even bring up a very difficult subject. Her father was diagnosed with dementia about two years ago and Sharon has witnessed the slow changes in her father. She is not prepared to handle what is now going on.

With trepidation, Sharon slowly shared the new and “disgusting” things her father has been doing. Not only has his bowel incontinence increased, but she has found him smearing or handling his stool in the bathroom. Last week, he walked naked out of the bathroom and there were brown footprints from the bathroom to his bedroom.

We often think dementia is memory loss, but it’s much more than simply forgetting things. It is a series of complex losses including neurons, loss of how our systems function and executive skills. When those circuits are not functioning or working well on a particular day, the primitive survival brain takes over. What is our primitive brain signaling us to do? Meet the basic needs: food, sleep and elimination. The primitive brain doesn’t care about bathroom tiles, new carpeting, bacteria or family reputation. Brain changes with dementia are biological. The difficult part is cultural; we have a hard time understanding and accepting these changes.

Touching briefs or smearing can feel shocking, but in dementia, it’s usually a sign of discomfort or confusion, not intentional behavior. First, we want to rule out the most common causes:

1. Comfort: Is the brief wet/soiled, too tight, sagging or rubbing?

2. Skin irritation: Redness, itching, rash, pressure marks, hemorrhoids.

3. Rule out bathroom need: Offer the toilet right away (even if they wear briefs).

4. Constipation/diarrhea: Any change in bowel pattern, straining, loose stools, gas?

5. UTI or illness: Sudden confusion change, pain, fever, strong odor, new agitation.

6. Access to Bathroom: Bright light, clear path, bathroom easy to spot, door open.

7. Simplify clothing: Pull-on pants, elastic waist, fewer layers, easy access.

8. Keep hands busy: Give a “replacement” item/activity before the usual trigger time.

9. Timing: Increase toileting prompts after meals, before naps, before bed.

10. Track patterns: When does it happen (evening, nap, overnight, after meals)? What changed?

If someone is touching their brief or putting their hands inside it may feel wet, itchy, cramped, or they may need to use the toilet but can’t interpret the body signal or explain it. What we can do when this happens is respond like any personal-care moment: calm voice, privacy, neutral tone. Avoid scolding or arguing, it usually increases distress. Use one simple line like, “Let’s get you comfortable,” guide them to the bathroom or changing area, and then reset the mood afterward with something soothing (music, warm drink, quiet activity).

This is not a time to tell the individual how disgusting this is, why on earth they have smeared feces?, etc. Typically, this is not being done “on purpose” or to make your life miserable. Rather, dementia can reduce inhibition and make problem-solving harder, so the person may act on an urge (itching, pressure, discomfort) without understanding the result. Smearing can also happen during attempts to clean up after an accident, especially if the steps feel confusing or the bathroom is hard to locate. Dementia can also make it harder to follow the steps of toileting and cleanup, so touching the brief can be a confused attempt to “fix” what feels wrong.

Other Things to Consider:

1. Keep a toileting routine – Follow a routine schedule daily. When the individual gets up in the morning, before lunch, after lunch etc., take them to the bathroom. Often individuals will follow a set schedule.

2. Access: Make the bathroom obvious and low-effort. Keep lighting bright, remove obstacles, and make the door easy to spot (door open or a simple sign).

3. Clothing: Reduce complicated clothing and layers so pulling down pants is fast. If they hesitate, use a simple cue: “This way,” and walk with them rather than explaining.

4. Skin: Skin care is prevention. Check frequently, change quickly after soiling, clean gently, and make sure the skin is fully dry.

Caring for someone with dementia is navigating the space where executive functions retire and the primitive systems keep marching. If you’re dealing with this, you’re not doing anything wrong, and you’re not alone. These situations are hard, but with patience and a few small adjustments, they often become more manageable over time. Be kind to yourself; you’re showing up and doing your best.