Having dementia can be very difficult -- for both those going through it and for their loved ones and caregivers. When it also includes psychotic episodes -- times when the person seems to have lost touch to some degree with reality -- it can be even more unnerving.
But dementia-related psychosis is very common. More than 2 million people in the U.S. have it, according to the Gerontological Society of America.
"Instead of thinking psychotic features as this taboo, icky subject, I just want people to understand that it's a normal manifestation of these illnesses. An expected manifestation. A disease talking," says Pierre N. Tariot, MD, the director of the Banner Alzheimer's Institute in Phoenix, AZ.
"Your loved one is not 'crazy.' They're ill. Their brain isn't functioning properly," Tariot says. "We can evaluate that, and we can help you understand that. And we can help relieve the distress -- yours and your loved one's."
What 'Dementia-Related Psychosis' Means
To understand dementia-related psychosis, it helps to break down the terminology:
Some experts now call dementia a "neurocognitive disorder." But doctors still use the word dementia. It's a broad term that includes a wide range of conditions caused by changes in the brain.
Alzheimer's disease is, perhaps, the best-known type of dementia. Others include:
- Lewy body dementia
- Frontotemporal dementia
- Vascular dementia
These conditions include a decline in thinking and problem-solving that often makes daily life and independent living hard.
Common symptoms of dementia include:
- Memory lapses (forgetting the name of a loved one, for example)
- A waning attention span
- A hard time communicating (using unusual words, for example, to refer to familiar objects)
Broadly, psychosis is when a person has trouble figuring out what is real and what isn't. People with psychosis may have delusions, like a firm, false belief that someone's trying to kill them. They could also have hallucinations: seeing or hearing something or someone that others don't.
"There's a tremendous lack of understanding and knowledge about these terms," says Gary Small, MD, the director of the UCLA Longevity Center. "Those terms are scary. Dementia sounds pejorative. And a term like psychosis or psychotic is scary, too.
"What I try to do is explain what those things are, what those phenomena are, and try to help them understand it."
Symptoms of Dementia-Related Psychosis
As the term suggests, people with dementia-related psychosis have the decline in thinking and problem-solving skills of dementia, as well as delusions or hallucinations of psychosis. (Delusions are more common.)
All of that can trigger other problems, like:
- Apathy
- Anxiety
- Aggression
- Sleeplessness
- Agitation
- Lack of inhibition
Diagnosis and Ruling Out Other Causes
The first step in finding out if your loved one has dementia-related psychosis is making sure that a hallucination or delusion isn't the result something else. A urinary tract infection (UTI), for example, can lead to hallucinations.
Diagnosing dementia-related psychosis is mainly about gathering information; ruling out other causes; and then observing, listening, and asking questions.
"What I do is, I never see [people] by themselves," says George Grossberg, MD, the director of geriatric psychiatry at the Saint Louis University School of Medicine. "I always see them at least with one or more -- but at least with one -- personal caregiver or care partner. Usually, it's a spouse or an adult child.
"I ask them questions about what kinds of things they're noticing with the loved ones with dementia." For instance, he might say:
- "It's been about 3 or 4 months since we've seen you and Mom. How are things going?"
- "'Have you or she noticed anything unusual or different?"
- "'Has Mom maybe either heard or seen things or imagined things that you're concerned about because you don't see or hear or imagine them?"
His goal is to open up the conversation.
It's not always easy. Those with dementia may hide their symptoms, for fear of the stigma that often comes with mental health problems. Others -- nurses, doctors, professional caregivers -- may not notice the signs for various reasons. That makes observing, talking, and asking the right questions even more important.
"I tell all my trainees, the medical students and residents, 'This is detective work,'" says Zahinoor Ismail, MD, the principal investigator at the Ron and Rene Ward Centre for Healthy Brain Aging Research at the University of Calgary.
"You have to look, and you actually have to ask for information from all the sources."
Treatment: When Does Dementia-Related Psychosis Need Medication?
There's no cure for Alzheimer's and other dementias. So the first line of treatment for dementia-related psychosis isn't drugs or medicine.
In fact, sometimes people with milder psychosis may not need treatment. If a hallucination or a delusion doesn't bother the person with dementia, there's often no need to treat it. If it does bother them, some simple methods can help, such as making sure that the environment around the person with dementia doesn't trigger the episode.
Tariot recalls a woman with dementia who believed someone was in the room with her. But she's just glimpsed her own reflection. Covering up a mirror eased her anxieties.
Another patient thought someone was spying on them. That wasn't really happening. Simply lowering a window shade helped, Small says.
Getting the person's mind off an upsetting episode can also work. Calmly redirect them, Small says.
If those kinds of methods don't work, doctors may consider prescribing medication. The FDA hasn't approved any drugs specifically for dementia-related psychosis. So doctors often go "off-label" to prescribe antipsychotic medicines that aren't approved for dementia-related psychosis.
"The problem is the medications we've had available … they just don't work very well," Tariot says. "They have, at best, about a 1-in-5 chance of helping enough to notice, and about an 80% or 90% chance of causing harm."
Psychosis with dementia can be challenging to diagnose and to treat. But understanding it, realizing its effects on both the person with dementia and the people around them, and treating it with care and compassion can make things much better for everyone involved.
"People ask me all the time, 'Gee, Dr. Grossberg, I know you specialize in Alzheimer's disease. How do you do it? Don't you get depressed? Don't you get despondent?'" Grossberg says.
"And I say, 'No. Just the opposite.' There's a lot that we can do to really improve the quality of life for the [person] and the care partners, to really make whatever remaining days they have left more pleasant and more comfortable. That gives me a lot of satisfaction."
