It started with Don Kent’s sense of taste—he couldn’t tell the difference between a jalapeno pepper and a piece of steak. A few months later, he started seeing things that weren’t really there, from odd shapes in his peripheral vision to an encounter with a pet dog who had died long ago. Though he didn’t know it at first, Kent, who lives in Tyler, TX, was experiencing symptoms of psychosis from Lewy body dementia, a debilitating disease that slowly chips away at memory and brain function.
Dementia, which affects 8 million people in the U.S. alone, refers to the constellation of symptoms associated with numerous neurological brain disorders including Lewy body, Alzheimer’s, Parkinson’s disease, and vascular dementia. Symptoms include loss of memory, language, problem-solving skills, and other essential cognitive functions, according to the Alzheimer’s Association. The risk of developing dementia rises with age. It usually first presents in people over 65, making it both an all-too common and unwelcome possible byproduct of getting older (although dementia sometimes occurs in younger adults, too).
Memory loss (both short-term and long-term) is the hallmark symptom of dementia, along with confusion and difficulty concentrating. Yet a less-discussed and often disturbing symptom occurs in as many as 30% of people with dementia: dementia-related psychosis. Just like when Kent was certain he was petting his deceased pet, during a period of psychosis a person has difficulty distinguishing what is real from what is not. This can include sensory experiences (mistaking a jalapeno pepper for steak) or false beliefs (feeling afraid that you’re being followed every time you leave the house).
“Dementia causes more than cognitive decline,” says Erin Foff, M.D., Ph.D., executive director of the Dementia-Related Psychosis Program at Acadia Pharmaceuticals in San Diego, CA. “An estimated 2.4 million Americans also experience dementia-related psychosis at any given time.” The unpredictable and, at times, unsettling symptoms of psychosis can have an overwhelming impact on dementia patients, their caregivers, and their families, she adds.
Here, we break down the top 10 things you need to know about dementia-related psychosis and how to manage it when it affects someone you love.
1. Psychosis can accompany every form of dementia.
The first thing to know is that you and your family are not alone in dealing with this. Dementia-related psychosis isn’t limited to one condition—it can occur across many neurological diseases that affect cognition. “People with all forms of dementia are at risk for experiencing hallucinations and delusions,” Dr. Foff says. “Dementia-related psychosis can occur at any time over the course of the disease and can be persistent and debilitating.” Like other symptoms of dementia, psychosis may start in subtle ways and grow gradually more frequent over time.
2. Dementia-related psychosis can cause sensory hallucinations.
You can break psychosis down into two separate categories of symptoms. The first is hallucinations, which are often vivid sensory experiences that no one else can see, hear, taste, smell, or touch. “To the patient, these experiences feel very real,” Dr. Foff explains. “It’s common for people with dementia-related psychosis to see small insects or animals, hear music or voices, or smell distinct aromas (like smoke or food cooking), for example.” In other cases, they might hear the voice or see the figure of a loved one who has died.
3. This condition can also cause delusions.
Delusions are fixed beliefs that are factually incorrect. “A common delusion is one of theft, when a person believes that someone, even a loved one, is stealing their money, jewelry, or other valuables,” Dr. Foff says. The patient may fear they are being abandoned by their family or that their spouse is having an affair. Even when this is demonstrably untrue, it’s very difficult to get someone to abandon this belief. Their brain has convinced them of a different—if untrue—reality.
4. Psychosis is likely caused by serotonin changes in the brain.
“Serotonin is this neurotransmitter that truly plays a critical role in multiple central nervous system or brain disorders,” explains Richard Isaacson, M.D., a neurologist at New York-Presbyterian/Weill Cornell Medical Center and founder of the Alzheimer’s Prevention Clinic at Weill Cornell Medicine in New York City. “It’s used to communicate from one brain cell to another.” When serotonin-influenced neurotransmitters become hyperactive, this disrupts the brain’s ability to communicate crucial information about what is happening around you. This can lead someone to have sensory experiences that don’t make logical sense, like having a conversation with a long deceased loved one.
5. It’s often difficult for a person with psychosis to know when it’s happening.
It’s never obvious to the patient when they are in the midst of a hallucination or delusion—after all, they believe that experience is very real. “Symptoms of hallucinations and delusions can often be difficult for patients to describe, or even realize they're experiencing, which can make detecting them more challenging for both caregivers and clinicians,” Dr. Foff explains. The best thing patients and caregivers can do is to communicate with one another. Loved ones should listen closely to what the patient thinks and feels, advises Dr. Foff. Rather than pushing back or correcting them, ask thoughtful questions about what they are seeing, hearing, or feeling. If they describe experiences that that seem indicative of psychosis, report this to their doctor at once, she adds.
6. Caregivers can learn how to respond to psychosis in the moment.
It can be difficult to know how to respond when your loved one is having a hallucination or delusion. “In less severe situations, it may be appropriate to try to redirect attention by offering an activity or a food that the person enjoys,” Dr. Foff explains. Sometimes the easiest thing to do is not to dispute your loved one’s reality, but to gently steer the conversation elsewhere.
“If the delusion is distressing but non-threatening, it may be appropriate to avoid disagreeing with the person or trying to ‘correct’ them,” Dr. Foff says. An example of this might be that your loved one believes they used to be famous, or that a family member stole a small possession from them. A more threatening delusion would be something like the belief that someone is stalking them, or that their spouse is stealing large amounts of money. In that case, you can listen, briefly offer your opinion to reassure them, and try again to redirect conversation.
Your approach will change based on the frequency and severity of psychosis symptoms. Dr. Foff encourages caregivers to talk with their loved one’s healthcare provider for advice and support.
7. Cognitive decline with psychosis can deeply upset and burden both the patient and caregiver.
Dementia affects every aspect of life, including relationships—so it’s no surprise that psychosis can be challenging and even emotionally painful for patients and their families to deal with. “For patients, these symptoms impact their overall health and quality of life, such as their ability to sleep, participate in family and social life, and their emotional state,” Dr. Foff says. In the beginning, hallucinations and delusions might be quite rare, but as the condition progresses, they may happen as often as every day.
Dealing with dementia can be isolating and distressing for caregivers. For Cynthia Kent, Don’s wife, his condition has brought on feelings of loss. “There’s a sadness that goes with losing your partner,” she says. Not to mention, the financial burden is real. A study in Journal of the American Geriatrics Society found that total care costs for dementia patients can be hundreds of thousands of dollars and are more than twice as expensive as caring for seniors without dementia. Unfortunately, family members bear the brunt of those costs.
8. Psychosis is associated with poorer health outcomes for all involved.
Tragically, people who experience dementia-related psychosis are more likely to be placed in nursing home care when the burden of care becomes too great—primarily because caring for them is basically a full-time job. Around 75% live in their own homes initially, but untreated hallucinations and delusions are associated with a faster transition to care facilities, more frequent hospitalizations, and increased mortality overall. Dr. Foff notes that the emotional and physical toll of caregiving can also have a negative impact. Dementia caregivers report higher levels of stress, depression, and anxiety, as well as decreased well-being, than non-caregivers, likely because of the stress of trying to manage their loved one’s condition.
9. Currently, there is no approved treatment for dementia-related psychosis—but new options are coming.
Though there are several medications on the market for the treatment of conditions that can trigger dementia (like Alzheimer’s), currently there is no FDA-approved treatment specifically for dementia-related psychosis (although one drug, Nuplazid, is approved to treat hallucinations and delusions associated with Parkinson’s disease). According to Dr. Isaacson, “over 40% of patients with these symptoms are actually not treated at all.” Traditionally, doctors have prescribed anti-psychotic medications off-label (meaning, drugs that were initially approved for other health concerns) to treat hallucinations and delusions. But these meds can have concerning side effects for dementia patients, including impaired motor function and an increased risk of death.
Thankfully, there is hope on the horizon for a safer pharmacologic treatment. In July 2020, the FDA accepted and began reviewing Nuplazid specifically to treat the hallucinations and delusions thar are associated with dementia-related psychosis. The drug has already made it through three phases of clinical trials and may be available as soon as early summer 2021.
10. Dementia-related psychosis needs more scientific focus in the future.
It’s pretty apparent that dementia-related psychosis is a huge concern for millions of Americans, one that requires our continued attention. “It’s vital that patients and caregivers learn to recognize and report these symptoms to their health care provider, and proactively develop a plan that supports patient and caregiver needs,” Dr. Foff says. Every person is different, and the best approach will depend on multiple factors including the severity of symptoms, burden on the caregiver, and overall quality of life.
For caregivers, joining a support group can help you better manage your own mental health. Try the Alzheimer’s Association, American Parkinson Disease Association, Lewy Body Dementia Association, or the National Alliance for Caregiving for local training classes and workshops.
Dr. Isaacson hopes to see continued emphasis on better treatment options for hallucinations and delusions. “There is an unmet need,” he says. “We manage these conditions the best we can, but at this time, we just don’t have the best options. I hope that our field keeps moving forward.” With new therapies coming soon, it seems he can count on continued progress.