Don't Just Assume It's the Disease: Agitation May Have Causes You Can Fix
For Alzheimer's & Brain Awareness Month, we’re sharing a hard-won lesson from our caregiving community.
“One minute everything is ok. The next, she thinks she is not at home.”
Her husband had always been, in his wife's words, "gentle and infinitely patient." Now he flares up in "response to the complete lack of control he feels over his own body and mind." Another member describes how his wife, who’s lived in the same house for 15 years, suddenly doesn't recognize it.
These situations may sound familiar if you're caring for someone with Alzheimer's or another type of dementia. The person you love is suddenly more agitated, confused, and suspicious. They’re pacing at night, refusing medications, seeing things that aren't there, or turning on the very people trying to help. In these moments it’s normal to think: This is it. The disease is progressing.
But maybe it’s something else? Here is what the Smart Patients caregiving community has learned:
A sudden change in behavior often has a cause you can actually fix.
The key word is often. It’s not always the case that things are masquerading as decline and are actually treatable. Yet when they are treatable or preventable, that may bring your person back. Enough caregivers have lived through experiences which have morphed into a practical piece of wisdom that’s passed along hand to hand: Before you assume, check.
One member described a father who would be "completely out of it" with even a mild infection. Another added: "His UTI was missed for a few weeks. When we discovered it and treated it, many of his new symptoms improved." After that, the family checked for infection every time his behavior changed. This is why Smart Patients often ask each other: "Does your spouse have a UTI? It can cause strange effects."
Out of stories like these, caregivers in our community have learned to ask about a handful of things before accepting that dementia has advanced:
Infection — especially a UTI, but any bacterial infection can cause a steep, fast change in behavior, even without a fever or obvious signs. A "subclinical infection" can be a serious issue for any elderly patient.
A new or changed medication — a recent prescription, a dose adjustment, or an interaction between drugs. One member traced a loved one's new confusion to a steroid that's well known for affecting mood and thinking. More than one has watched a new prescription scramble a person who had been stable. Others have found a drug meant to calm agitation did the opposite, making their loved one "very aggressive."
Pain that can't be expressed — when someone can't tell you what hurts, the pain can come out as agitation instead.
Dehydration or not eating well — both can cloud thinking quickly. (Some members keep a nutrition drink on hand.)
Disrupted sleep — nights that turn into no sleep at all wreck the following days. Insisting it's bedtime at odd hours can cause dilemmas for the caregivers who either must sleep then or be groggily available when their loved one wakes up.
Overstimulation — too much noise, light, or activity. One caregiver realized a single trip to a big, busy store was enough to unravel her husband's whole day.
And here’s what caregivers do in response:
Track the timing and the triggers. When does it happen: a certain time of day, after certain activities, after a new pill? Write it down. Maybe take a short phone video of what you're seeing to share with the doctor.
Ask for the workup. Checking for infection, a review of every medication, and a closer look to rule out other causes are all reasonable requests.
Loop in a pharmacist. Several members point out that no one knows drug interactions better than a pharmacist. Don't assume the prescribing doctors have every bit of drug knowledge at their fingertips, especially when different doctors are prescribing for different problems. (Don't forget to consider over-the-counter meds, too.)
These caregivers all know the disease will progress. They also know that a sudden change can be a signal of something else rather than the “new normal." Knowing the difference can give you back a little time with a person who is still there.
This piece reflects the shared experience of members of our caregiving community. It is not medical advice and is not a substitute for professional care. Always consult your loved one's healthcare team about new or changing symptoms and before making any changes to medication.