For better or worse, dementia progresses slowly. If someone with dementia shows a sudden behavior change, my suggestion is always to consider whether they might have pain that they are unable to express verbally.
Obviously, pain can be a result of numerous physical conditions–but I recommend checking for a urinary tract infection (UTI) first. People always think I have some sort of magical powers when I correctly diagnose a UTI without seeing their loved one (and without being a medical doctor), but I’m just playing the odds.
UTIs are incredibly common among those with dementia.
First of all, dementia causes individuals to have a compromised immune system. Once a UTI sets in, it may spread quickly. I can think of about ten people with dementia that I have known who have passed away as a result of a UTI that was identified too late and not contained. Yes, UTIs can often be fatal in those with dementia.
A UTI can cause “delirium,” an acute state that might include hallucinations, delusions, agitation, and restlessness. For someone who typically shows symptoms of dementia, it often appears that their condition has worsened quickly. These sudden changes are not a result of dementia but rather an indicator that the person has another health issue.
Sometimes a person with dementia expressing UTI symptoms might be mistaken for being overtly sexual. For instance, I have known several of men whose loved ones were called by the nursing home staff because they were taking off their pants and fondling their genitals in front of other residents. In many cases, a quick urinalysis will show a UTI.
At the risk of TMI (e.g., too much information), I have had urinary tract infections. In a span of 24 hours, I have gone from “something might be wrong” to the type of pain that is constant and disrupts sleep. It is horrifying to me to think of not being able to express this pain to others around me and seek help. However, I have seen many individuals with dementia be accused of giving their caregivers a “hard time” when in fact they had no other way to express that they were in pain. (Even worse, this happens with kidney stones.)
Dehydration can also be an issue with people who have dementia, and dehydration makes one prone to UTIs. It’s important to keep fluids in reach of someone with dementia when they may not remember or be motivated to get beverages on their own. People should also be encouraged to use the restroom frequently. Not surprisingly, poor hygiene can increase one’s risk. If someone lives alone and doesn’t remember to change their underwear, it’s likely that they will eventually end up with a UTI.
So…here are some of the changes in people with dementia that caregivers have noticed when a UTI had set in (note that is not an all-inclusive list):
- The person is unusually cold or hot for the environment (shivering, fever, etc.).
- The person sleeps a lot more than usual–or the person doesn’t sleep when sleeping is usually not a problem.
- The person grabs at their genitals or tries to take their clothes off.
- The person becomes incontinent.
- The person becomes aggressive toward themselves and/or caregivers.
- The person appears to be in pain when urinating (perhaps indicated by change in body posture or facial expression).
- The person starts to fall more often or have issues with balance.
- The person is suddenly much more confused than usual.
Obviously, some of these are symptoms of dementia, but keep in mind that dementia is a slow-moving condition. Changes that occur quickly may be a result of a UTI or another medical condition.
A woman I know was recently concerned about how quickly her mother’s Alzheimer’s was progressing. In a period of about 72 hours, she went from being calm and good-natured to lashing out when someone tried to assist her. She was suddenly confused about who her daughter was and her environment. She also refused to get dressed and would fight anyone who tried to convince her to take off her nightgown. I was asked if it’s normal for Alzheimer’s to progress so quickly.
Although aggression and confusion are part of Alzheimer’s, it’s not normal for these changes to occur so quickly. I suggested starting with a urinalysis. Sure enough, she had a raging UTI.
I often tell caregivers to bring a urine sample (if possible) to any doctor’s office visit. The good news is that a urine screening is fast and cheap. The bad news is that collecting urine might become more challenging as dementia progresses.
I recently heard the term “dementia detective.” The term was used to describe someone who pays attention to someone with dementia with the goal of figuring out their needs. We need more dementia detectives.
When someone with dementia shows changes in behavior, we need to stop saying that they are giving us a hard time. We need to understand that they are having a hard time.
And sometimes when they are having a hard time, it’s because they are experiencing pain.