Sibling communication tips for Parkinson’s psychosis care

Parkinson’s psychosis is a relatively common, progressive non-motor complication of Parkinson’s disease. It can cause hallucinations and delusions that may be upsetting and confusing for loved ones.

Talking to family about hallucinations and delusions and about creating a Parkinson’s care plan is especially important for adult children who are working together to support a parent.

Why sibling communication matters

Parkinson’s psychosis can be unpredictable. Some people experience mild illusions that aren’t distressing, while others may lose the ability to distinguish what is real from what is not.

A person with Parkinson’s may believe in nonexistent threats or see people who aren’t there. They may refuse help, medications, or supervision. These false perceptions can increase safety risks, such as wandering, leaving the house, or taking other unsafe actions.

In some cases, delusions can lead to anger or agitation. Over time, these symptoms may increase the need for supervision, disrupt routines, strain relationships, contribute to burnout, and reduce the overall quality of care.

Education about what to expect and communication tips for families dealing with Parkinson’s psychosis can help improve care by creating a shared, unified approach.

Common challenges siblings face in care coordination

When siblings come together to care for a parent, emotional and practical challenges often arise. These challenges may be compounded by long-standing family dynamics or differences in caregiving expectations, and can include:

• unequal caregiving responsibilities (one sibling carrying more of the burden)
• communication problems (miscommunication about care)
• conflicting opinions about care decisions
• financial stress and disagreement
• emotional strain (grief, burnout, anxiety, guilt)
• historical family rivalries
• problems balancing family life and care demands

Communication tips for families

Knowing how to talk to a sibling about Parkinson’s psychosis can be difficult. Disagreements can arise over how to best care for a parent, how to coordinate schedules, and how to manage symptoms like psychosis.

It can also be confusing to know what to say to a parent when they are experiencing a hallucination or delusion. It’s natural to want to tell them that what they are seeing is not real.

If your parent has insight, gently explaining that the experience isn’t real may be appropriate. If they do not have insight, it’s best to avoid arguing. Instead, respond calmly and offer reassurance or distraction.

For siblings, maintaining a focus on quality care while supporting one another emotionally requires regular, consistent communication. The following steps can help promote balance and ensure accurate information is shared with the medical care team:

• Create consensus: Hold a meeting, either in person or by phone, to discuss the best Parkinson’s psychosis care. Create a plan and continue regular meetings. Share updates through email or group texts.
• Share responsibilities: Divide caregiving tasks based on each sibling’s availability and strengths. Be flexible and ready to step in when the primary care partner needs support.
• Ask for help: Primary care partners should be open and clear about what support they need to avoid burnout and resentment.
• Seek guidance: If long-standing resentments or rivalries surface, counseling may help. Working together is often the best way to ensure your parent receives the best possible care.

Creating a shared Parkinson’s care plan

Having a Parkinson’s care plan is one of the most effective ways to coordinate care among siblings, their parent, and the healthcare team.

A care plan helps divide responsibilities and coordinate appointments, medications, and safety measures. It can include critical information and may reduce emergency room visits by supporting timely care. Whenever possible, the plan should reflect the wishes of the parent, and creating it early is ideal.

The Centers for Disease Control and Prevention (CDC) offers a downloadable template to help families get started. The National Institutes of Health (NIH) also provides caregiver resources, including a Coordinating Caregiver Responsibilities worksheet and a Caregiver’s Handbook.

Maintaining sibling relationships while managing care

While frustrations and disagreements may occur, maintaining respect for each other and each other’s time is essential. The following tips may help preserve sibling relationships while managing care:

• Use “I” statements instead of “you didn’t…” language to reduce defensiveness and keep discussions focused on care needs.
• Avoid criticizing primary care partners. Try reframing concerns in a solution-focused way.
• Offer help from a distance if needed, such as managing finances, researching resources, or making phone calls.
• Watch for signs of burnout. If one sibling is struggling, look for ways to help ease their workload.

Burnout is common among care partners, particularly as care needs grow. The following strategies may help reduce burnout:

• carve out time for self-care
• set realistic goals
• celebrate small victories
• delegate tasks and accept help
• seek emotional support
• exercise regularly and prioritize sleep
• stay organized
• incorporate stress-relief techniques into daily routines

Final takeaway

During stressful moments, it can help to remember Parkinson’s disease — and not your parent — is driving behavior during an episode of psychosis. Keeping that distinction in mind may help manage emotional responses to hallucinations or delusions. A united, calm approach among siblings is essential.

Overall, open, coordinated, and compassionate communication among siblings about Parkinson’s psychosis can strengthen family relationships and improve care for a parent.