More than 55 million people worldwide are living with dementia, and many of them also have psychosis. You may hear doctors use the term “psychotic episodes.” It’s when a person struggles with determining what is real and what is not.
It can include things like:
- A false belief that a caregiver is trying to harm them
- An insistence that they see someone in their room, like a long-dead sibling or friend, or even someone famous, who isn’t there
Often, experts say, the signs of dementia-related psychosis go undetected and untreated for too long. That can have a big impact on both the health of the person with dementia and the well-being of their families and other caregivers.
“If somebody has dementia, the doctor or the family may not take seriously some of the things the [person is] saying, and not recognize that it’s a false disbelief or a hallucination, and they just think it’s a problem with cognition,” says Gary Small, MD, the director of the UCLA Longevity Center.
“People tend to assume that dementia is just a cognitive illness. But it’s clear that it affects behavior and all kinds of aspects of the patient’s and the family’s life.”
Psychosis is a wide-ranging term. Included in its definition are two main terms:
- Hallucinations (seeing or hearing things that others don’t)
- Delusions (false beliefs)
The psychosis part of dementia-related psychosis can sometimes be difficult to grasp.
“Oh, my goodness, it’s very poorly understood,” says Zahinoor Ismail, the principal investigator at the Ron and Rene Ward Centre for Healthy Brain Aging Research at the University of Calgary’s Cumming School of Medicine. “People have all sorts of preconceived notions about what these terms mean. They use them interchangeably.
“There’s a stigma around them, because they relate them to schizophrenia or major mental health issues that happened earlier in life. It’s an area in which often explanation is really required: What are the definitions? What do we mean?”
It seems pretty clear that if a person with dementia says that a dead spouse came to visit, or that the people in the nursing home are conspiring to poison the food, that’s a sign that something’s up, and the person’s care team needs to know about it. But people with symptoms of psychosis sometimes aren’t very forthcoming with that information. Even caregivers may keep things like that to themselves.
“I would tell people, I do tell people … they may feel fear or shame or stigma around these symptoms: Please don’t,” Ismail says. “It doesn’t reflect on a loved one with dementia, it doesn’t reflect on you. These are just symptoms of the changing brain. It doesn’t mean they’re a bad person, it doesn’t mean they’re ‘crazy.’ None of that.
“Just like the brain is changing and causing them to forget, the brain is changing and causing them to believe things that might not be real.”
In addition to some people’s unwillingness to be honest about hallucinations or delusions, some doctors or professional caregivers just don’t have the time, experience, or expertise to dig into symptoms to see if they’re a sign of psychosis or something else. Combined with the many symptoms of dementia, a diagnosis is not always clear.
“[These signs] rarely happen in isolation,” Ismail says. “You can have psychotic symptoms with agitation, you can have agitation with psychotic symptoms. One might be primary. For some, as [dementia] progresses, they can get them all.”
To find out if someone may have dementia-related psychosis, experts say, first ask yourself questions, like:
- How is the person with dementia feeling?
- Has anything changed recently?
- What, if anything, is concerning or upsetting the person?
- Has the person seen or heard things that might not be real, or acted in such a way that may suggest that the person is having delusions or hallucinations?
If the answer is “yes,” on that last one, doctors will try to rule out any medical conditions that might cause the delusions or hallucinations. Urinary tract infections, for example, can lead to hallucinations. Severe depression may come with auditory hallucinations.
“The key is, the patients themselves may not tell you if there’s anything wrong. But [as] the caretaker, or care partner, or caregiver, if you ask them about any changes, anything unusual, anything different, they’re going to give you the information,” says George Grossberg, MD, the director of geriatric psychiatry in the Department of Psychiatry and Behavioral Neuroscience at the Saint Louis University School of Medicine.
“If you ask the right kind of questions, and you spend the right amount of time, it’s not difficult.”