Caregiving Topics

How to Work with Your Loved One's Care Facility

🧠 What will you learn in this article?

This article helps care partners work with a care facility to support their loved one with Parkinson’s disease (PD). Highlights include:  

  • Creating and updating a Parkinson’s care plan for your loved one. 

  • Prioritizing medication timing, swallowing safety and movement. 

  • Building trust and communication with the care team. 

  • Sharing helpful resources and documents. 

an elderly mother looking off in the distance while being hugged by her daughter not in the frame

When you care for someone with Parkinson’s disease (PD) there may come a time when symptoms and activities of daily living become harder to manage at home. Despite your best efforts to keep them home, a move to assisted living or a nursing home may be necessary. 

 

Whether you are exploring assisted living options or are already working with nursing home staff, it is important to help professional caregivers get to know your loved one’s Parkinson’s-related needs. Here’s where to start: 

 

Collaborate on Care Plans 

Parkinson’s symptom management can be complicated. When moving your loved one into a living facility, plan to explain PD care to the care staff and advocate for your loved one’s needs and preferences.  

 

Never assume every healthcare professional is trained in Parkinson’s. It’s a good idea to ask about the staff’s PD knowledge. This can reduce the risk of hospitalization and injury. Care facilities should work with you to create a tailored care plan and adjust it as needs and symptoms change.  

 

Read the Centers for Disease Control and Prevention’s Steps for Creating and Maintaining a Care Plan to learn what to include when planning for assisted living care. Important care plan elements for a loved one with Parkinson’s often includes:  

  • A comprehensive list of symptoms. Include symptoms that may impact activities of daily living or increase fall risk. 

  • Mealtimes and dietary needs. 

  • Medication names, dosages and timing. You can use this Medication Form. 

  • Personal preferences, including daily routines, hobbies and interests. 

  • Daily living support needs such as bathing, dressing and mobility. 

 

Explain Your Loved One’s Unique Needs 

Not all care facilities are familiar with the varied needs of people with Parkinson’s. Many PD symptoms are widely misunderstood, for example lack of facial expression (masking) caused by Parkinson's can look like depression, disinterest or confusion.  

 

A person with PD may walk smoothly after taking morning medications but might need assistance moving or experience freezing as their dose wears off. For a caregiver who doesn’t understand Parkinson’s or is unfamiliar with “off” times, these motor fluctuations can be misinterpreted as someone being difficult or uncooperative. 

 

Parkinson’s symptoms also vary from person to person. As a care partner, you likely understand your loved one’s specific symptoms, personal preferences, likes and dislikes. Sharing what you know with the care staff will help them respect your loved ones’ challenges, needs and values.  

Did you know?

The Parkinson’s Foundation has a program that helps senior living communities create environments where residents with Parkinson’s can thrive?  Look for the ribbon below at our Partner Sites.

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Exact Medication Timing Matters 

People living with advanced Parkinson’s require medication on time, every time to control tremors, stiffness and make movement easier. This reduces the risk for accidents, falls and complications. 

Healthcare facilities often have a routine schedule to distribute medications. This may not match the timing needs of a person with Parkinson’s. Ask to review your loved one’s medication list and schedule with the care team — confirm they deliver medications at the correct, specific times. It can help if your loved one’s neurologist prescription order lists the exact times medication should be given (for example, 8 a.m., noon, 4 p.m., 8 p.m., versus “every 4 hours”). 

Print these Forms for Your Loved One’s Chart 

Help familiarize staff with PD care. Print and fill out these forms and ask that the care facility keep them within your loved one’s chart: 

Share Swallowing Risks

Swallowing issues (dysphagia) are common in Parkinson’s. Swallowing symptoms put people with Parkinson’s at high risk for developing aspiration pneumonia, an infection that happens when a person swallows the wrong way and mouth bacteria is pulled down into the lungs. 

People with Parkinson’s need to be screened by a speech-language pathologist for swallowing changes to safely maintain their medication routine and minimize their risk for aspiration pneumonia and weight loss.The speech-language pathologist may recommend a modified or soft-food diet. 

Ask the care facility how they work with a speech-language pathologist or how they can help ensure your loved one has access to one as needed.  

Regular Movement is Medicine

Even as Parkinson’s advances, regular movement is important for managing symptoms, reducing stiffness and other complications related to inactivity.

Physical and occupational therapists can recommend safe stretching, gentle movements or other activity tailored to a person with Parkinson’s abilities and safety needs. 

Let professional caregivers know the importance of remaining calm, being patient, minimizing distractions and avoiding having multiple people giving directions at once. Ask them to use consistent cues like the below, especially when movement is difficult:

  • “Big steps” may help minimize shuffling.
  • “Stand tall” can encourage straighter posture.
  • “Try marching” or “Count your steps” might help someone begin moving during a freezing episode.

Build Bridges with Professional Caregivers

A 2020 study suggests that getting to know your loved one’s professional caregivers can make a meaningful difference. Regular communication helped families and caregivers build familiarity and trust, leading to stronger communication and more meaningful care involvement.

Introduce yourself as your loved one’s care partner, learn the names of staff members and their roles, and take time to say hello when you visit. A kind, patient approach can help build trust and make it easier to work together. Keep in mind staff are learning your loved ones’ needs while also caring for others. 

Collaboration with the care team can help you spot and correct misunderstandings or errors with medications, your loved one’s preferences and other points of care. 

Remember, even though your loved one may be transitioning to a different living situation, you will always be an essential part of the care team. Your advocacy helps ensure the best possible care. 

Learn More

It can feel like there are a lot of moving parts when it comes to ensuring your loved one is receiving the best care as Parkinson’s advances. Learn more with these resources: 

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