Caregiving for a Loved One with Parkinson’s Disease Psychosis

Psychosis is a group of symptoms that occur when a person’s perception or thinking becomes disconnected from reality. When psychosis is associated with Parkinson’s disease, it is referred to as Parkinson’s disease psychosis or PD psychosis.

It’s common for people with Parkinson’s disease to require the help of a family caregiver, a loved one who assists with day-to-day tasks, healthcare, and provides emotional support. With up to 40 percent of people with Parkinson’s disease experiencing at least some psychosis symptoms, caregivers should be familiar with psychosis—and know how to navigate this aspect of caregiving.

Recognizing psychosis symptoms

Both caregivers and people with Parkinson’s disease need to be aware of the different ways that psychosis symptoms can manifest:

• Hallucinations. This involves seeing, hearing, or otherwise sensing something that does not exist. Visual hallucinations are the most common type.
• Illusions. A misrepresentation of an existing object in the environment. For example, a closet full of clothing may appear to be a crowd of people, or a handbag may appear to be a cat.
• Delusions. A delusion is a false belief that is not tied to reality. For example, a person may believe that others are conspiring against them. Delusions are less common than hallucinations.

Working with healthcare providers

With Parkinson’s disease, caregivers often play a role in different aspects of healthcare and treatment. It’s common for a caregiver to accompany their loved one to healthcare appointments and communicate with the healthcare team.

Like other aspects of Parkinson’s disease, psychosis affects different people in different ways. As a caregiver, good communication with the healthcare team is one of the most essential steps you can take to ensure your loved one is getting the care that they need.

Psychosis symptoms are different than symptoms like tremors, slowed movement, or difficulty walking, since they cannot be observed by anyone other than the person experiencing the symptom. You and your loved one will be your healthcare provider’s best source of information about what symptoms are occurring and how those symptoms are affecting your loved one.

Keep a symptom journal

• Collaborate with your loved one in keeping a symptom journal for psychosis symptoms.
• It is important to keep your loved one involved in this process. Psychosis can involve delusions, and delusions can involve paranoid thoughts.
• For hallucinations or illusions, include the date, time, location, and a description of the symptom.
• Ask your loved one how they felt—was the symptom distressing, upsetting, amusing?
• Encourage your loved one to speak openly about what they are thinking and feeling, and watch for signs of jealousy, persecution, or obsessive thoughts, which can be signs of delusions.

Responding to symptoms

• Talk to your loved one’s healthcare provider about how to respond when your loved one is experiencing a hallucination or delusion.
• It’s important to understand that psychosis symptoms are very real to the person experiencing them, even if symptoms are not based in reality.
• Generally, you want to avoid alarming your loved one or creating stress.
• If a symptom is not causing a problem, it may be best to leave it be rather than doing something that might cause distress. However, do not engage or join in hallucinations or delusions.
• If a symptom is causing distress, you will want to react quickly. Speak in a calming manner, move your loved one to a quiet location, and distract them from the hallucination.
• Your healthcare provider will be your best source of guidance about how to respond to psychosis symptoms.

Treatment for psychosis

Treatment begins with an evaluation by a healthcare provider. Based on that evaluation, treatment may involve addressing coexisting health conditions that are contributing to symptoms, adjusting the medications your loved one is taking, or medications to ease psychosis symptoms.

It’s also important to recognize that Parkinson’s disease and psychosis can lead to emergencies. Talk to your loved one’s healthcare provider about what to do in case of an emergency and create a written plan. This plan should include an emergency contact list and information on your loved one’s diagnosis, health conditions, and medications

A plan should also include a list of medications that need to be avoided because they can make Parkinson’s disease symptoms worse or interact with other medications.

You will need to share this information with hospital staff if your loved one requires emergency medical treatment.