TALKING ABOUT SOME COMMON SYMPTOMS
I think the hardest part of being a care partner is when the person with Parkinson's-related hallucinations and delusions can't communicate what they're feeling or experiencing because of doubt or shame."
—Connie, care partner, advocate
DISCUSSING PARKINSON’S HALLUCINATIONS AND DELUSIONS
It's essential to embrace open dialogue about Parkinson's-related hallucinations and delusions, especially during medical visits. These challenging symptoms may affect about 50% of people with Parkinson's over the course of their disease. Explore why they might go unmentioned, and learn how you can discuss them with your family.
Raise Awareness and Understanding
Educate yourself and your loved ones that hallucinations and delusions can be part of living with Parkinson's. This knowledge fosters a more compassionate and effective approach to managing these symptoms together.
Confront Stigma and Embarrassment
Open discussions can reduce the discomfort associated with these symptoms. Normalizing these conversations helps you and your loved ones speak honestly and more frequently.
Speak Up in Every Appointment
Always mention any hallucinations or delusions during doctor’s visits. Be sure to let your doctor know how these symptoms are impacting your daily life and relationships. These details may be overlooked during busy appointments unless specifically mentioned.
Hallucinations and delusions are progressive, but treatable
A Parkinson’s diagnosis can cause a swirl of emotions, leaving people feeling stuck. About 50% of people with Parkinson’s may experience hallucinations and/or delusions over the course of their disease. Because these symptoms are treatable, speaking up and being proactive can make a real difference.
BUILDING A SUPPORTIVE PARKINSON’S CARE PLAN
Supporting a loved one with Parkinson's disease (PD) is profoundly meaningful, though it can sometimes be overwhelming. Planning together and clearly understanding each person's role allows you to develop a care plan that readies you for the unexpected, strengthening your bond as a family. Use these tips to enable your family in creating a more effective and compassionate care plan.
Develop a Care Plan:
- Work with your healthcare professionals to create a comprehensive care plan that includes strategies for dealing with hallucinations and delusions. This plan might include specific changes you can make in your home or options for treatment. Remember, only your doctor can determine if a treatment option is right for you.
Define Roles Clearly:
- Ensure that everyone in the family understands their role in the care plan. Whether it's administering medication, attending doctor’s appointments, or providing emotional support, clear roles help improve the effectiveness of care.
Educate Everyone:
- Make sure all loved ones are informed about Parkinson's symptoms, treatments, and what to expect. Education is crucial for effective management and reduces uncertainty and fear.
A guide for families living with Parkinson's
From care partners to adult children, everyone is crucial in easing the emotional and physical challenges of PD. This guide offers supportive tips and practical advice to involve the whole family and includes strategies for managing hallucinations and delusions, smoothing the daily ups and downs of Parkinson’s.
Guide for care partners