FOR THE CAREGIVER OF A PARENT WITH PARKINSON’S

Handling hallucinations: Talking to a parent with Parkinson’s psychosis

Last updated Sept. 16, 2024, by Susie Strachan
Fact-checked by Patrícia Silva, PhD

Parkinson’s disease psychosis can cause your parent to see people who aren’t there or hear voices that don’t exist. It can be confusing and frightening for them and you.

These hallucinations and delusions can lead to misunderstanding, conflict, and even trust issues. And they can make it difficult for you to maintain the same kind of relationship you previously have had with your parent.

Realizing that these symptoms can be caused by Parkinson’s disease — and are not a reflection of your parent’s character or your caregiving — may help you better navigate the situation and empathize with what your parent is experiencing.

By having a plan for managing these episodes, knowing when to seek medical help, and by taking care of yourself, you can gain a sense of control in what can feel like an overwhelming situation at times.

What is Parkinson’s psychosis?

Parkinson’s psychosis is a nonmotor symptom of Parkinson’s disease that affects more than half of people living with Parkinson’s. Parkinson’s psychosis can cause hallucinations, delusions, or other forms of altered reality.

Parkinson’s disease, which is more common in men than women, typically causes motor symptoms, such as tremors, slowed movement, and balance issues.

But as Parkinson’s disease progresses, changes in brain chemistry also can lead to psychosis.

Symptoms can include:

hallucinations, which include seeing, hearing, and sensing things that don’t exist
delusions, which mean having beliefs that are not true, such as someone trying to poison them.

“The most common hallucinations patients tend to experience are visual — often of animals, little people, strangers, or even deceased people,” says Ling Pan, MD, a neurologist at Robert Wood Johnson University Hospital and Rutgers Health in New Brunswick, New Jersey, who works with patients who have Parkinson’s psychosis.

Pan notes that early signs of hallucinations to watch for include your parent feeling there is movement near them, or that someone is present, but when they look, there isn’t anything or anyone there.

“Another is visual illusions,” she says. “This is when a patient will look at a stationary object, such as a sign, and it will start to look like a face, or when looking at lines on the floor, they will start to move.”

Parkinson’s psychosis symptoms may get worse from sickness, hospitalizations, and unfamiliar environments.

Hallucinations are not always a sign of cognitive decline or dementia. Sometimes, they are a side effect of medications that treat Parkinson’s. When the medication dosage is adjusted or no longer taken, hallucinations may stop.

While most hallucinations are brief and nonthreatening, they can sometimes become disturbing or worrisome, especially as the psychosis worsens and your parent no longer knows what is and isn’t real.

Caring for your parent with Parkinson’s psychosis

Witnessing your loved one coping with Parkinson’s psychosis can be distressing, especially when their perception of reality is altered.

While trying to stay calm and being reassuring, you’re also facing the task of helping them feel safe in a world that suddenly seems unfamiliar.

Making the emotional shift from being their child to becoming their caregiver also can be challenging. The weight of this transition can feel overwhelming and be upsetting as you navigate the responsibility of caregiving while trying to preserve the bond you have with your parent.

Seeking support, whether through therapy, conversations with other family members, or joining a support group, can provide you with the guidance and reassurance you need.

Managing hard conversations

When talking with your parent during a hallucination or delusion, approach the conversation with empathy. Keep in mind their altered sense of reality is a symptom of Parkinson’s psychosis, not their true thoughts or feelings.

Despite their delusions, your parent still has emotions and awareness, and they want to feel valued and important.

Try to remain calm if the conversation becomes difficult. Focus on de-escalating the situation by avoiding confrontation or arguing about their perceptions of reality.

If you sense your emotions are getting out of control, take a brief pause to collect your thoughts before continuing.

Strategies for managing tough conversations include:

not telling them the hallucinations aren’t real, as this can increase their stress
acknowledging their emotions to help them feel understood and respected
using short sentences and simple words to keep your communication clear
steering the conversation toward a neutral topic or one they find comforting
turning off the TV and radio and reducing other distractions.

To help your parent maintain their dignity and show your respect for them, try starting your sentences with affirming and supportive statements such as:

I’m here to listen and help in any way I can.
Your feelings are important to me.
We can handle this together.
You are safe.

Speaking with a doctor about hallucinations

Before making an appointment to speak with a doctor about your parent, it can be helpful to take notes about the frequency, duration, and intensity of psychosis symptoms.

“Usually, we start with determining if there is a trigger for the hallucinations or delusions,” says Pan. “For example, any underlying illness, such as an infection, can trigger psychosis, and treating the underlying illness can help resolve the psychosis.”

If illness is ruled out, Pan says the doctor may then consider if any medications are triggering the psychosis, such as sedatives, and other psychotropic medications.

During the appointment itself, talk with the doctor about whether making adjustments to their medication or having mental health therapy might help their psychosis.

Managing this condition may require careful adjustment of Parkinson’s disease medications to address motor symptoms and psychosis. These drugs are designed to alleviate motor symptoms by boosting dopamine levels in the brain. However, elevated dopamine levels can sometimes trigger Parkinson’s disease psychosis.

In some severe cases, your parent’s doctor might prescribe antipsychotic medications.

Therapy, including counseling and cognitive behavioral therapy, may be able to help your parent cope with their symptoms.

You might also want to consider talking to the doctor about:

signs that might indicate a need for further intervention
long-term management strategies for both Parkinson’s disease and psychosis.

Avoiding caregiver burnout

Caregiver burnout can be a consequence of the emotional and physical demands that are part of supporting your parent who is experiencing Parkinson’s psychosis.

Give yourself a break to rest and recharge by looking into respite care, or hiring someone to look after your parent. You could also ask another family member or a close friend to step in for a while.

For instance, Pan suggests delegating household chores can alleviate some of the burden on the primary caregiver.

“Outsourcing tasks like shopping, cleaning, and running errands helps prevent caregivers from becoming overwhelmed by managing both the household and the care of their loved one,” she says.

You might consider:

booking respite care for a temporary break from your caregiving duties, which can be provided in various settings, including at home, in a healthcare facility, or at an adult day care center
seeing a mental health therapist, as they can offer support and strategies for coping with the emotional and mental challenges of caregiving, and provide a safe space to express your feelings and gain insights
using relaxation techniques, such as meditation, deep breathing, and yoga, to reduce stress and strengthen your emotional resilience.

By establishing boundaries and increasing your self-care to maintain your own well-being, you can better sustain the energy and resilience needed to support your parent.

Resources and support

Reaching out for support can help relieve stress and improve your ability to talk with your parent when they have episodes of Parkinson’s psychosis. It may include:

hiring a professional caregiver experienced in Parkinson’s disease to assist with daily tasks and manage symptoms
joining a support group for Parkinson’s caregivers to share experiences and learn from others.

Parkinson’s News Today is a resource for the latest news about Parkinson’s, columnists writing about life with the disease, and online forums and social media platforms, including Facebook and Instagram.

Other ways to get more information about support groups for Parkinson’s caregivers include:

Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.