Dementia-Related Psychosis: The Caregiver’s Role

Treatment for dementia-related psychosis is different for everyone. But one thing’s for sure: As a caregiver, you play a big role in your loved one’s care plan. With your help, they can have a better quality of life for as long as possible.

Monitor Their Behavior

Your loved one might act in strange ways. Their behavior might be harmless.

For example, it’s common for people with dementia to think they’re not in their own home. James Lai, MD, associate chief of clinical affairs for geriatrics at Yale School of Medicine, says people with dementia might even go to their room to gather some things. If all they want to do is pack a bag and unpack it, he says that’s OK. You can even help.

“As long as these [delusions] aren’t stressful, you can participate in them,” Lai says. “If you always tell them what they’re doing isn’t right, or you try to remind them that they’re not going to this place, I think you’ll see that creates more stress and anxiety.”

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It’s not always possible to calm your loved one on your own. They might get really upset or pushy.

“This is where you want to involve your doctor,” Lai says.

But psychosis symptoms aren’t always scary for the people who have them. Christopher van Dyck, MD, director of the Alzheimer’s Disease Research Unit at Yale School of Medicine, says those who have Lewy body dementia often see animals or people who aren’t really there. But these beings tend to be non-threatening and even comforting.

“The person having [the hallucination] can live very happily with extra dogs in the house,” he says.

Watch for Warning Signs

It’s not always easy to tell if your loved one has a delusion or hallucination. They might not know it themselves. Lai says to watch for signs, like if they:

• Move things around
• Get upset or aggressive in certain situations
• Are afraid to go into a room
• Avoid certain people or places

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And sometimes, psychosis can be a sign of other medical problems, Lai says. It’s especially true if symptoms come out of the blue. Your loved one might not be able to tell you they don’t feel well.

He says you should call the doctor if you notice: 

• Sudden changes in behavior, mood, or personality
• Weight loss
• Lack of appetite
• Periods of staring
• Lots of falls
• Serious sadness or low mood
• Much more sleeping than usual

Work With Their Doctor

You can help your loved one get to their visits on time. And you can make sure they get their hearing, eyesight, or overall health checked. But that’s not your only role. Arman Fesharaki-Zadeh, MD, a behavioral neurologist and neuropsychiatrist with Yale Medicine, says caregivers are a vital source of “objective session-by-session updates.”

He suggests you should keep an eye on things like:  

• What time do the symptoms happen?
• Do they show up around sundown?
• Do they happen around some kind of change?
• Does a new person cause them?
• Does your loved one get really anxious and scared in certain situations?

Jot down any information you have and bring it to their next appointment. Fesharaki-Zadeh says that’ll help you and your doctor look for patterns that might make your loved one’s dementia-related psychosis worse. You might be able to ease some symptoms if you can find and avoid certain triggers.

Carry Out the Treatment Plan

Your loved one might need medicine for their dementia or other health problems. You’ll need to make sure that they take it the right way.

If possible, Lai suggests you give them a part to play in their treatment routine. For example, put drugs in a machine that spits out the medicine when they press a button.

“Giving some kind of control back tends to be a good thing,” he says. “Even if it’s small.”

Carolyn Fredericks, MD, a neurologist who treats people with Alzheimer’s disease and other memory disorders at Yale Medicine, says medication probably won’t get rid of delusions. But it can help tone down symptoms that make psychosis worse, like agitation or confusion.

Some of these drugs come in patch form, she says, “which can be helpful if the person is suspicious and doesn’t want to take pills.”

Get Support for Yourself

It’s hard work to take care of someone with dementia. You might feel like you’re the only one who can or should do it. But that makes it more likely that you’ll get caregiver burnout. That’s a state of physical tiredness or mental exhaustion. It could lead to medical issues for you that might include anxiety and depression. That can affect the quality of care you give your loved one.

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“Even the world’s best caregiver needs rest and self-care,” Fredericks says. “That’s how you get to be a good caregiver, by giving yourself a chance to be well.”

You can get extra help in lots of ways. Ask your doctor about:

• Home health aides
• Senior centers
• Adult day care
• Long-term living facilities

Fesharaki-Zadeh suggests caregivers reach out to groups like the Alzheimer’s Association. You can find access to a large network of dementia-related support.

“These are people who are in the trenches dealing with these issues,” he says. “They can be quite helpful and quite therapeutic.”