How to Deal With Dementia-Related Psychosis
It can be overwhelming and even scary when your loved one’s brain starts playing tricks. Here’s how to help.
For Don and Cynthia Kent of Tyler, TX, dementia is a deeply personal affliction. After visiting seven different neurologists to try to understand his disturbing cognitive symptoms, Don was diagnosed with Lewy body dementia in March 2017. Don wasn’t just experiencing memory loss, the hallmark symptom of dementia; he also had sensory experiences he couldn’t quite explain. “One of the first symptoms I had was a lack of sense of taste,” he says. “I couldn’t tell the difference between a jalapeno and a piece of steak in my mouth.” He didn’t initially understand why this was happening.
As he later learned, Don was experiencing—and continues to battle with—something called dementia-related psychosis—a common side effect of dementia, where patients’ brains convince them of things that aren’t real. Psychosis can occur in two different forms: hallucinations (sensory experiences) or delusions (false, fixed beliefs). At any given time, 30% of people with dementia have some form of psychosis. That’s 2.4 million Americans.
“Dementia-related psychosis can occur at any time over the course of the disease, and can be persistent and debilitating,” says Erin Foff, M.D., Ph.D., executive director of the Dementia-Related Psychosis Program at Acadia Pharmaceuticals in San Diego, CA.
It also places enormous stress on the caregiver. Cynthia, Don’s wife, expresses the pain of navigating Don’s ever-changing condition: “As a loved one of someone who is living with dementia, there’s a great sadness.” She is witness to a gradual, but nonetheless gut-wrenching, loss.
Notice and Understand the Signs
If you love or care for someone with dementia-related psychosis, it helps to be able to recognize symptoms when they occur. “It’s important to monitor people living with dementia and listen to what they are describing so that care partners can report the onset of new symptoms or experiences to a health care professional,” Dr. Foff says. These signs can be both subtle and obvious, but they fall into two distinct buckets.
Your loved one describes a sensory experience that no one else is experiencing. This is a hallucination. “A person sees, hears, feels, tastes, smells, or even ‘senses’ something that no one else can perceive,” Dr. Foff explains. “To the patient, these experiences feel very real.” For example, Don once saw spiders and tried to swat at them before realizing they weren’t really there. Another time, he heard train sounds from his living room with no train nearby. One morning he got up to make coffee and saw his dog in the living room—a dog that had died long ago. “I knew in my mind that that was not possible,” he says. “But it seemed real to me then.”
Your loved one holds a strong belief based on something that didn’t really happen. This is a delusion. Perhaps they believe a partner has been unfaithful, or that someone is spying on them. “Even when faced with evidence to the contrary, a patient who is experiencing a delusion will hold tightly to their belief,” Dr. Foff says. “People with delusions may become fearful or suspicious,” she adds, and they may even lash out at the person they think has wronged them.
How to Respond in the Moment
It can be tricky to respond when your loved one is seeing or hearing strange things. “It’s a very uneasy situation,” Cynthia notes of dealing with Don’s hallucinations. “You get very sad, but also frustrated.” Appealing to logic won’t help—this person’s brain is playing tricks on them, and they can’t understand the difference between what’s true and what isn’t.
“When the hallucination or delusion is occurring, there is no need for the caregiver to go to great lengths to reason with their loved one,” says Richard Isaacson, M.D., a neurologist at New York-Presbyterian and founder of the Alzheimer’s Prevention Clinic at Weill Cornell Medicine in New York City. “Whatever that patient is seeing, hearing, or believing feels real.”
The best approach really depends on your unique situation. Here are a few tips for caregivers:
Try to redirect the patient’s attention. Sometimes you can distract your loved one by gently changing the subject. “For example, if they see a strange cat in the house, you might instead ask them what they want for dinner,” Dr. Isaacson suggests. “A change in topic can help them to stop focusing on the hallucination.”
Play along if the delusion won’t harm anyone. Try embracing the other person’s reality, even if for a short time. “It’s often better to play along with their belief until it runs its course,” Dr. Isaacson says. Cynthia explains how she does this with Don: “As long as it’s a safe hallucination, I can sort of let him go with it, and try to cope with the paranoia and delusion as best [I] can.” A safe hallucination is one that doesn’t put anyone in harm’s way—for instance, seeing spiders, a pet who has died, or hearing voices in the hall. While certainly disturbing, if these hallucinations don’t lead the person to act out in violence, you can try to go along with them.
Avoid trying to rationalize them out of their beliefs. If you can help it, don’t try to change your loved one’s mind. “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. Do what you can to comfort them without causing additional conflict or strife. This might be easier said than done, especially when the delusion is emotionally hurtful to you (such as a person's belief that loved ones no longer care about them). Again, the correct response really varies in every situation. “The approach will depend on the severity of the symptoms and whether the hallucination or delusion poses a threat to the person or those around them,” she notes. If the patient believes someone is stealing from them, for instance, they might be angry initially but calm down or forget after a few minutes. But if the conflict escalates and the person lashes out, you may need to more overtly and firmly correct that delusion to keep everyone safe. (If you are in immediate physical danger, the best action is to call in a medical expert, a family member, or—if absolutely necessary—911.) The patient’s doctor is your best resource for helping you navigate these tricky scenarios.
Be an empathetic listener. The person experiencing the psychosis might be feeling just as afraid and confused as you are. Hallucinations “can be a disturbing thing for us,” Don says. Even if they don’t recognize the psychosis in the moment, the patient may later realize that sensory experience wasn’t real. This can cause a great deal of grief and inner turmoil. “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. Do what you can to comfort the patient without causing additional conflict or strife. Listen to them, empathize with them, and help them connect with grief counselors and mental health experts who can walk with them through this time of loss.
Report these experiences to a healthcare provider. The patient’s doctor will be your best resource for specific advice on dealing with their psychosis. “It’s important for the patient, caregiver, and provider to understand how the dementia is progressing and presenting, and to develop a care plan that is best for that person,” Dr. Foff explains.
Take care of yourself. Caring for someone with dementia can be draining and isolating. Dementia caregivers report higher levels of stress, depression, anxiety, and lower feelings of well-being than non-caregivers. Don’t wait until you have a mental health crisis to seek out the support you need. “Online resources can be helpful,” Dr. Foff suggests—check out the Alzheimer’s Association's tools for caregivers—“and caregiver support groups and speaking with a doctor can be helpful as well.”
There is no perfect way to navigate this unpredictable and debilitating disease. “Coping with and managing these symptoms in the moment can be hard,” Dr. Foff admits. Currently, no FDA-approved treatment exists specifically for dementia-related psychosis—although there could be one available as soon as April 2021.
As unsettling as it can be, dementia-related psychosis doesn’t have to hold someone back from living a full life. “It’s overwhelming to learn you have a disease like this,” says Don. He’s became an advocate to help move the needle forward in the search for new treatment options. “I don’t want to be known as someone dying with dementia,” he says. “I want to be known as someone living with Lewy body dementia the best I can for as long as I can.”
- Dementia-Related Psychosis & Symptoms: American Family Physician. (2006). “Behavior Disorders of Dementia: Recognition and Treatment.” aafp.org/afp/2006/0215/p647.html
- Caregivers’ Mental Health: American Journal of Geriatric Psychiatry. (2011). “Issues in Dementia Caregiving: Effects on Mental and Physical Health, Intervention Strategies, and Research Needs.” ncbi.nlm.nih.gov/pmc/articles/PMC3774150/