More than 2 million Americans suffer from dementia-related psychosis. When you have a loved one with dementia, you know that it can be a frightening condition – both for those who are going through it and for their caregivers. If they also have to deal with psychotic episodes, it can be even more troubling.
“But instead of looking at psychotic traits as this taboo, gross subject, I just want people to understand that it is a normal manifestation of these diseases. An expected manifestation. A disease that speaks,” says Pierre N. Tariot , the director of the Banner Alzheimer’s Institute in Phoenix, AZ.
“Your loved one is not ‘crazy’. You are sick. Your brain is not working properly. And we can evaluate this and help you understand that. And we can help alleviate the distress – yours and those of your loved ones.”
What is it
To understand dementia-related psychosis, it is helpful to break down the terminology:
Some experts now refer to dementia as a “neurocognitive disorder”. But doctors still use the word dementia. It is a broad term that encompasses a wide range of conditions caused by changes in the brain.
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Alzheimer’s disease is perhaps the most well-known form of dementia. But there are others, including:
- Lewy body dementia
- Frontotemporal dementia
- Vascular dementia
These conditions include a decline in thinking and problem solving that often makes daily living and independent living difficult.
Common symptoms of dementia are:
- Memory deteriorates (for example, forgetting the name of a loved one)
- A decreasing attention span
- Difficult to communicate (using unusual words to refer to familiar objects, for example)
In general, psychosis is when a person has difficulty figuring out what is real and what is not. People with psychosis can have delusions, such as having a firm, false belief that someone is trying to kill them. You might also have hallucinations – seeing or hearing something or someone that others don’t see.
“There is a tremendous lack of understanding and knowledge of these terms,” says Gary Small, MD, the director of the UCLA Longevity Center. “These terms are scary. Dementia sounds derogatory. And a term like psychosis or psychotic is also scary.
“I’m trying to explain what these things are, what these phenomena are, and help them understand.”
Symptoms
As the term may suggest, people with dementia-related psychosis have fewer thinking and problem-solving skills with dementia, as well as delusions or hallucinations with psychosis. (Delusions are more common.)
All of these can trigger other problems, such as:
- apathy
- anxiety
- aggression
- insomnia
- agitation
- Lack of inhibition
diagnosis
The first step in determining if your loved one has dementia-related psychosis is to make sure that a hallucination or deception is not the result of something else. For example, a uterine infection can lead to hallucinations.
Diagnosing dementia-related psychosis is primarily about gathering information. rule out other causes; and then watch, listen, and ask questions.
“What I do is I never see [people] for himself, “says Dr. George Grossberg, director of geriatric psychiatry at Saint Louis University Medical School.” I always see them with at least one or more – but at least with – a personal carer or a care partner. Usually it is a spouse or an adult child.
“I ask them questions about what kinds of things they notice about loved ones with dementia.”
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What could these questions be?
“I could say, ‘It’s been about 3 or 4 months since we saw you and mom. How’s it going?
“‘Did you or she notice anything unusual or different?
“‘Has Mom heard or seen things or imagined things that you worry about because you don’t see or hear or imagine them?’
“And that opens up some kind of whole space for them to talk about.”
It’s not always easy. People with dementia can hide their symptoms for fear of the stigma that often accompanies mental health problems. Others – nurses, doctors, professional caregivers – may not be able to perceive the signs for various reasons. It is all the more important to observe, speak and ask the right questions – for everyone involved.
“I tell all of my trainees, medical students, and local residents, ‘This is detective work,” says Dr. Zahinoor Ismail, the lead investigator at the University of Calgary’s Ron and Rene Ward Center for Healthy Brain Aging Research.
“You have to look and actually request information from all sources.”
treatment
There is no cure for Alzheimer’s and other dementias. So the first line of treatment for dementia-related psychosis is not medication or medication.
In fact, sometimes people with milder psychosis don’t need treatment. If a hallucination or deception doesn’t bother the person with dementia, there is often no need to treat it. If it bothers you, a few simple methods – like making sure the environment around the person with dementia isn’t triggering the episode – can help.
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Tariot remembers a woman with dementia who thought someone was in the room with her. Indeed, the woman had caught a glimpse of her own reflection. Covering a mirror alleviated her fears. In another instance where a person believed someone was spying on them, Small said lowering a window shade alleviated the problems.
Also effective for people with dementia: just to distract yourself from an episode that might upset them.
“The best way to react is to be calm and distracting people,” says Small. “I often remind them of what it was like when their children were wild and young. They redirected them with a game to play with or so on and so forth.”
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When these methods don’t work, doctors can prescribe medication. The FDA has not approved any drugs specifically for dementia-related psychosis. Instead, doctors often go “off-label” to prescribe antipsychotics that are not specifically intended for dementia-related psychosis.
“Where [methods that involve drugs] don’t work, we use medication. The problem is with the drugs we had available … they just don’t work very well, “says Tariot.” You have a 1 in 5 chance, at best, of helping enough to notice, and about an 80 or 90 percent chance of causing damage. “
Psychosis with dementia can be difficult to diagnose and treat. But when you understand it, understand its impact on both the person with dementia and those around you, and use care and compassion in treating it, this can become much better for everyone involved.
“People keep asking me, ‘Gee, Dr. Grossberg, I know you specialize in Alzheimer’s. How do you do that? Don’t you get depressed? Don’t you get desperate?'” Says Grossberg.
“And I say, ‘No. Just the opposite.’ We can do a lot to really improve people’s quality of life [person] and the care partners to make the remaining days really more pleasant and comfortable. That gives me a lot of satisfaction. “
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