When “It’s Just the Dementia” Isn’t the Whole Story

One of the most important lessons I have learned as a clinical nurse advocate is simple: sudden behavior changes in dementia should never be dismissed as “just part of dementia.”

Recently, Nightingale Patient Advocates was contacted by an 80-year-old wife who was exhausted, heartbroken, and looking for answers.

Her 93-year-old husband had advanced dementia and lived in a memory care residence in Palm Beach County. For years, she visited him every day. She remained devoted to him through every stage of his illness.

Then his behavior changed.

Over several weeks, he became increasingly combative, especially in the evening. Staff struggled to provide his care safely. They often called his wife at night and asked her to help calm him.

At 80 years old, she continued answering those calls because she loved her husband. Still, she felt something was not right.

Sudden Behavior Changes in Dementia Need Attention

When I met with his wife, we reviewed his medical history, usual behaviors, and the timing of the change.

Dementia can affect mood, memory, sleep, and behavior. However, a sudden and severe change should always raise concern. It may point to pain, infection, dehydration, medication side effects, constipation, or another medical problem.

We agreed that he needed a full evaluation in the emergency department.

At first, the emergency physician believed there was no urgent medical problem. The recommendation was to return him to memory care because the behavior appeared to be dementia progression.

His wife could have accepted that answer. Many families would.

Instead, I respectfully asked the team to look deeper. We requested a more complete medical workup, social-services involvement, and overnight observation.

Fortunately, the hospital granted those requests.

The Medical Cause Was Beneath the Surface

Within 24 hours, the team found the cause of his decline. His chronic heel wound had progressed to osteomyelitis, a serious bone infection.

His recent behavior now made much more sense.

Older adults do not always show infection or pain in the expected way. This is especially true for people with dementia. They may not be able to explain what hurts. Instead, they may become restless, confused, withdrawn, fearful, or combative.

In this case, his behavior had become so severe that staff could no longer complete regular dressing changes for his heel wound. The infection caused pain and agitation. At the same time, the agitation made it harder to provide the wound care he needed.

He began intravenous antibiotics and received a PICC line for long-term treatment.

Without a thorough evaluation, this infection may have gone undetected.

Advocacy Is Not Always About a Cure

Despite treatment, his condition continued to decline over the next week. His appetite, which had always been strong, faded. His strength decreased. His body was no longer responding as everyone hoped.

His wife saw those changes clearly.

After thoughtful conversations with his attending physician, she made the loving and painful decision to transition him to hospice care.

Several days later, he passed away peacefully.

Some may ask whether advocacy was successful because he did not recover.

I believe it was.

Patient advocacy does not promise a cure. It helps ensure that treatable problems are not missed. It gives families clear information, support, and a voice during difficult medical decisions.

His wife later shared that she was deeply saddened by his death. Yet she also felt peace. Dementia had taken pieces of her husband over many years. She knew he was no longer suffering.

She was grateful she did not have to face those decisions alone. She had support, guidance, and another trained set of eyes during a frightening and emotional hospitalization.

A Message for Families

If your loved one has dementia and develops sudden behavior changes, do not assume the disease is simply getting worse.

Ask questions. Request a thorough evaluation. Share what is different from their normal behavior.

Ask the medical team to consider:

• Infection
• Pain
• Dehydration
• Medication side effects
• Constipation
• Urinary problems
• Low oxygen levels
• Changes in blood sugar
• Other medical conditions

Sometimes there is a treatable cause. Sometimes there is not. Either way, your loved one deserves a careful evaluation.

At Nightingale Patient Advocates, we believe every patient deserves to be heard, even when they can no longer speak clearly for themselves. Families deserve guidance, answers, and compassionate support when the healthcare system feels overwhelming.

No family should have to face those moments alone.