Most people will need to be hospitalized for one reason or another at some point in their life. This is particularly true of people with long-term illnesses, like Parkinson’s disease (PD). Common reasons for hospital admissions from the emergency room can include infections of the urinary tract or lung (such as pneumonia), cardiac issues, injury from falls, and dementia-related behavioral issues. Common reasons for non-emergency hospitalizations are elective surgeries such as knee and hip replacements.
Hospitalization can be devastating for PD patients and tremendously stressful for their caregivers for a number of reasons:
- The neurologist who takes care of you and manages your PD medications may not have privileges at the hospital where you are admitted.
- The physicians responsible for your care in the hospital may not know a lot about PD.
- The nursing staff may not have much experience with PD patients, and for various reasons including nursing shortages and/or cuts in staffing, they are not likely to have the time to learn best PD practices while you are admitted.
- If you need to undergo surgery or other invasive medical procedures, you may not be able to take any medications—including your PD meds—until the surgery or procedure is complete.
It is important for the person with PD and the caregiver to plan and to anticipate what is likely to happen during a hospitalization. The combination of education and planning can alleviate many of the problems encountered in the hospital.
Downloadable Documents | Online Articles | Podcasts & Webinars | Relevant Resource Kit | Expert-level Resources
Consensus Statement for the Optimization of Parkinson's Medicines in Hospital
Published by UK Parkinson's Excellence Network, 2017
The consensus statement includes a medicines optimisation algorithm outlining how to ensure people with Parkinson’s get the medication they need, questions to ask on admission, management of non-oral medications, supporting a good hospital admission for people with Parkinson’s, an admissions checklist, building the case for medicines optimisation for people with Parkinson’s, and evaluating practice of medicines optimisation for people with Parkinson’s
Hospital Safety Guide
Published by the Parkinson's Foundation, 2023
This 68-page booklet (PDF) helps readers understand the risks people with PD face in the hospital, prepare to play an active role in the hospital before a crisis occurs, organize care information to use in the hospital (whether a planned or emergency visit), and provides step-by-step instructions to get your PD needs met.
Ask the MD: Being in the Hospital with Parkinson’s
By Rachel Dolhun, MD. Published by the Michael J. Fox Foundation, July 13, 2022
Having Parkinson’s does increase the risk of hospitalization. But that doesn’t mean it’s inevitable. This short article shares several steps you and your loved ones can take to make hospital visits as safe and productive as possible.
Parkinson’s Disease: Moving Forward - Hospitalization and Parkinson’s Disease
Published by ATrain Education
This comprehensive page sites references showing higher admission rates and longer hospital stays for Parkinson’s patients; hospital-related issues; risk factors for deterioration in hospital; medication issues; increased risk for aspiration; mobility, falls, fractures and other medical issues; perceptions of hospital care and the Parkinson’s Foundation’s Aware in Care Program.
The Perfect Storm: When Parkinson’s Patients Enter the Hospital
By Hooman Azmi, MD, FAANS. Published by The Health Care Blog, January 23, 2019
Studies show that Parkinson’s patients are at higher risk for developing hospital related complications. Awareness about Parkinson’s and its treatment is critical in ensuring reduced risks. There has been a push in recent years to encourage hospitals to develop education programs for staff to learn Parkinson’s disease management during hospitalization.
Ask the Expert: Parkinson’s & Hospitalization
By the Parkinson’s Foundation, April 8, 2020
In this 1-hour webinar, Dr. Michael S. Okun answers questions about Parkinson’s disease and hospitalization. Tips are shared about what to do if you or your loved one with PD is hospitalized and how to get the best care possible during a planned or emergency hospital stay.
Webinar notes for the Stanford PD Community Blog
Helping individuals with PD Stay Safe While in the Hospital
By LSVT Global, February 16, 2022
This one-hour webinar introduces the Parkinson’s Foundation Hospital Care Initiative, which aims to ensure that all people with PD are “Aware in Care,” meaning that they (1) understand the risks they may face in the hospital, (2) have the tools they need to play an active role in their care and (3) are heard, valued and respected throughout their hospitalization.
Hospital Safety
By the Parkinson's Foundation), December 13, 2023
In this 57-minute webinar introduces the Parkinson's Foundation's new and improved Hospital Safety Guide, including a review of "My Five Parkinson's Care Needs" and other resources built into the guide. Hear from community volunteers with personal and professional experience navigating hospital visits.
Hospitalization
By the Stanford Parkinson's Community Outreach Program, June 2024
This six-minute video shares how to advocate for yourself or someone with Parkinson's in the hospital to get PD medications on time, stretch, and exercise safely in the hospital, and maintain the medication regimen prescribed by your neurologist.
Hospitalization and Parkinson's
By Parkinson's Community Los Angeles, August 27, 2023
In this one hour webinar movement disorder specialist Adrienne Keener, MD, spoke about the hospital environment and preventable medical errors, reasons people with PD are hospitalized, medication Issues, advice to patients, infections, delirium, falls, low blood pressure, blood clots, neuropsychiatric symptoms, DBS or Duopa, caregiver challenges, advice for caregivers, and what to bring to the hospital.
Hospitalization and Parkinson's: What to Do, What to Know
By PMD Alliance, December 8, 2020
In this one hour webinar movement disorder specialist Stephen Reich, MD, talks about what you need to know in order to advocate for your care and make the hospitalization experience better.
Hospitalization in Parkinson’s Patients: Important Tips to Know
By University of Florida Health, September 10, 2019
In this 45-minute lecture, Dr. Joseph Legacy presents tips for patients and caregivers to keep in mind when patients need to spend time in the hospital.
How To Navigate A Safe Hospitalization with Parkinson's
By Neuro Challenge, March 2023
The information in this 30-minute talk by a movement disorder specialist applies not only to hospitalization, but wherever someone else is taking over your medication management (rehab, hospice, assisted living, etc). The speaker offers tips to get PD medication on time, avoid PD medication switching, avoid cessation of PD medications, and avoid contraindicated medications.
My Family Member is in the Hospital: Now What?
By DukeHealth, October 2021
This 24-minute video provides tips on what to do when your loved one is in a hospital. The speaker addresses patient rights, knowing hospital staff, understanding the vocabulary, the importance of advance directives and having a family spokesperson, discharge planning, and post-acute care. None of the information is specific to Parkinson's disease.
Registration is required, but is free.
My Parkinson's Story: Hospitalization
By the Veteran's Administration
This 6-minute video alternates between an interview with a man and several healthcare professionals. The man shares his history of spinal cord injury and Parkinson's disease. The healthcare professionals explain the importance of those with PD having a kit for hospitalization, what should be in that kit and how to communicate with hospital staff about how to care for you while you are in the hospital.
Navigating Hospitalizations with Parkinson's
By PMD Alliance, June 2, 2022
In this one hour webinar movement disorder specialist Michael Okun, MD, lists specific actions you can take to ensure the best outcome possible, whether your hospitalization is planned or an emergency room visit.
Parkinson's in the Hospital - Why Being Prepared Matters
By the Parkinson's Foundation, January 5, 2022
This 1-hour webinar helps listeners understand the risks associated with a hospital stay when living with Parkinson’s. Learn how to develop strategies to get the best possible care in the hospital and what resources are available to help you play an active role in a hospital visit, whether planned or unplanned.
Safe Movement in the Hospital
By the Parkinson’s Foundation, October 2, 2024
Regular movement has many benefits for people with Parkinson's, including reducing muscle loss, helping with sleep, improving focus and managing constipation. Staying active in the hospital is also key to a faster recovery,
preventing falls, and minimizing complications. In this one-hour webinar, experts share tips for moving safely in the hospital, even if nursing staff wants you to stay in bed.
Deterioration of Parkinson's Disease During Hospitalization: Survey of 684 Patients
By Oliver HH Gerlach, Martijn PG Broen, Peter MNF vanDomburg, Ad J Vermeij, Wim EJ Weber, BioMed Central Neurology, 2012.
In this Dutch study, Parkinson's patients answered a standarized questionnaire on general, disease, and hospital related issues. Many PD patients had been hospitalized at least once in the last year. Regardless of the type of admissions ward and whether or not the patients had surgery, incorrect medication during hospitalization was the most important risk factor for deterioration.
How Should Parkinson's Disease be Managed Perioperatively?
By Swati G. Patel, MD, Chad R. Stickrath, MD, Mel Anderson, MD, and Olga Klepitskaya, MD, The Hospitalist, June 2010.
This literature review of potential hospitalization risks in PD patients includes a discussion of techniques that may be uniquely required in the Parkinson's population. The authors note that other conditions, like cariodpulmonary disorders, already receive a great deal of attention with regard to perioperative risk assessment and PD deserves a similar level of attention.
Management of the Hospitalized Patient with Parkinson's Disease: Current State of the Field and Need for Guidelines
By Michael J. Aminoff, et.al. for the National Parkinson Foundation Working Group on Hospitalization in Parkinson's Disease, Parkinsonism & Related Disorders, March 2011; 17(3): 139–145.
This literature review identifies practice gaps in the management of the hospitalized PD patient. Medications, dosages and specific dosage schedules are critical. Staff training regarding medications and medication management may help avoid complictions, particularly those related to reduced mobility, and aspiration pneumonia. Treatment of infections and return to early mobility is also critical to management.
Managing Medications for Hospital Patients With Parkinson Disease
By Dorothy J. Moore, et.al. Published by American Nurse Today, 2017
A primer for nurses to improve care of people with Parkinson’s disease in the hospital, it focuses on medication management with a cursory explanation of the disease, assessment of swallowing and fall risk. Common PD medications, their uses and side-effects, medication interactions, and a note to listen to the patient, learn about their special needs, and communicate those to the healthcare team. Registration is required to read the full article, but there is no charge to do so.
Medication Management in People with Parkinson's Disease During Surgical Admissions
By C.P. Derry, K.J. Shah, L. Cale, and C.E. Counsell, Postgraduate Medical Journal, 2010.
In an 18-month study done at the Aberdeen Royal infirmary, UK, medical and nursing notes for PD patients admitted to surgical departments were reviewed retrospectively. Researchers found poor prescribing and incomplete drug administration were common. Measures to improve medication management are identified.
Last updated December 2023 by Stanford's Parkinson's Community Outreach.