When Parkinson's Disease (PD) progresses to advanced stages, "treatment" usually moves to "management," and caregivers play an important role. These resources are specific to management of late-stage PD.
Downloadable Documents | Online Articles | Podcasts & Webinars
Motor Fluctuations in Parkinson's Disease: What You Need to Know
Published by the American Parkinson Disease Association, October 2024
This two-page fact sheet outlines what motor fluctuations are and six ways they may manifest as Parkinson's progresses, as well as causes, and and several treatment options.
Thinking About Advanced Parkinson’s
Published by Parkinson’s UK, August 2014
This 104-page booklet (PDF) defines advanced Parkinson’s disease with chapters about managing Parkinson’s through its many stages, personal relationships, employment and financial support, personal care and housing, end of life decisions, counseling and support.
Advanced Parkinson’s: Symptoms, Complications, and Care Strategies
Published by the Davis Phinney Foundation, August 18, 2023
This blog post begins with a discussion of the symptoms scales doctors use to define advanced Parkinson's as well as proposed changes to those scales. Advanced Parkinson's symptoms associated with significant complications are explained, along with strategies that can help each.
Advanced Parkinson’s Treatment and Therapies
Published by Parkinson’s UK, August 2014
This series of seven webpages primarily discusses medication management in advanced Parkinson’s, although there are links to alternative treatments such as surgery, DBS, PT, OT and speech-language therapy. Adding palliative care to your care team is also recommended.
Bowel and Bladder Issues in Advanced Parkinson’s Disease
Published by the American Parkinson Disease Association, July 7, 2020
Bowel and bladder issues can be problematic throughout the course of PD, but can also pose unique challenges in advanced disease. This page focuses on urinary and gastro-intestinal issues in advanced PD, including abdominal pain and fecal incontinence.
End Stage Parkinson’s: What to Expect
Published by Crossroads Hospice and Palliative Care, April 4, 2018
A summary of end stages of Parkinson’s symptoms, how to care for someone in end stages, and eligibility criteria for hospice for someone with PD.
End-Stage Parkinson’s Disease & Risk of Death
Published by the American Parkinson Disease Association, February 8, 2022
This blog post explains the symptoms of advanced Parkinson's Disease (PD) that put a person at an increased risk of dying and explains the steps you can take to manage advanced PD symptoms and minimize certain risks. In addition, enrollment with palliative care and hospice is encouraged.
Falls, Extreme Immobility and Secretion Management
Published by the American Parkinson Disease Association, February 4, 2020
In this blog post, movement disorders neurologist Pravin Khemani, MD, addresses three difficult topics of advanced PD: falls, extreme immobility, and drooling and swallowing difficulties. She emphasizes a team-based comprehensive approach as imperative in recognizing and addressing disabling motor and nonmotor symptoms.
Managing Advanced Parkinson’s Disease
Published by A Train Education
Module 13 of a continuing education course on Parkinson’s disease for health care professionals outlines the complications of advanced of Parkinson’s disease. Topics covered include medication issues, motor issues, nonmotor complications, sleep disorders, orthostatic hypotension, severe dysphagia, gastric dysfunction, constipation and urinary problems, managing falls, malnutrition and dehydration, impaired communication and the benefit of palliative care and hospice at home over nursing home care.
Managing Care in Late Stages
Published by ParkinsonDisease.net, March 3, 2017
What to expect in the late stages of Parkinson's disease and the challenges of caring with those difficulties and needs. Tips for helping someone overcome freezing, accomplishing activities of daily living as long as possible, managing medications and swallowing issues, and ways to minimize caregiver stress.
Mental Health Concerns in Advanced Parkinson’s Disease - Psychosis and Behavioral Problems
Published by the American Parkinson Disease Association, December 3, 2019
This comprehensive page outlines general principles when facing mental health issues in PD and discusses in some detail psychosis and behavior problems in advanced PD, including treatment approaches. There's a quick tips & takeaways section at the end.
Parkinson's Disease and Palliative Care
Published by GetPalliativeCare.org
This page outlines the decline of Parkinson's disease and helps those coping with Parkinson's understand what a palliative care team provides. There is a brief discussion of when and how to get palliative care, an online quiz to determine if palliative care is right for your family and a link to a palliative care provider search tool.
Sleep Disorders & Advanced Parkinson’s Disease
Published by the American Parkinson Disease Association, August 4, 2020
There are many sleep disorders that are associated with PD and that can be problematic throughout the disease course. This blog post focuses on an extreme form of fatigue, or excessive daytime sleepiness (EDS), that can develop in advanced PD. The author addresses possible causes, strategies for improving nighttime sleep and wakefulness during the day.
What to Expect in End Stage Parkinson’s Disease
Published by Healthline, June 20, 2023
This comprehensive article begins by summarizing end stage Parkinson's symptoms followed by treatment options for each. Advice for caregivers of late-stage Parkinson's, including enrollment with Palliative care is included, along with a couple of resources and a few frequently asked questions.
Advanced Parkinson’s
By the Davis Phinney Foundation, April 3, 2024
In this episode of The Parkinson's Podcast, Cherian Abraham Karunapuzha, MD, covers multiple interpretations of what “advanced Parkinson’s” means, what symptoms are associated with advanced Parkinson’s, and possible ways to manage those symptoms.
Advanced Parkinson's Care Planning: Palliative Care, Hospice and End-of-Life Decisions
By the Parkinson's Foundation, July 7, 2022
In this 56-minute webinar palliative care specialist Martha Twaddle, MD, explains palliative care, hospice services and resources for end-of-life decisions.
Advanced Parkinson's Disease
By University of Wisconsin Health, May 13, 2019
In this 75-minute talk Jessica Baker, MD, discusses how Parkinson's Disease (PD) progresses, the motor, non-motor, and other symptoms of advanced PD, advance care planning, and what can be done to live well in earlier PD stages.
Advanced-Stage Parkinson's Disease
By M Health Fairview, January 2025
This series of five short videos offers an introduction to advanced-stage Parkinson's Disease (PD), some thoughts about planning ahead, information about palliative care, thinking and mood changes common to this stage of disease, and how to cope with day to day caregiving.
CareMAP. Your Guide to Managing Advanced Parkinson’s
By the Parkinson's Foundation
A series of 24 videos on home care, outside help, caring from afar, caring for you, end of life and resources, which provide practical suggestions for coping with the complex problems that arise as a result of advanced Parkinson’s disease.
Caring for a Person with Advanced Parkinson’s Disease
By Invigorate Physical Therapy and Wellness, November 26, 2018
In this 47-minute webinar Anne Wallis, Associate Director of Education at the Parkinson’s Foundation, talks with doctor of physical therapy, Sarah King, about when to look for outside help, how to lasso the power of your friends and family (even when you think you're alone), and how to build an allied healthcare team that decreases your stress and improves your loved ones care.
My Parkinson's Story: Advanced Parkinsons
By the Veteran's Administration
This 10-minute video alternates between an interview with a man and his wife and his palliative care team, including a doctor, nurse, clerg and social worker. The man and his wife shares his experience with late stage Parkinson's. The palliative care team explains that their job is to support the best physical, emotional and spiritual wellbeing of the immediate family as well as help the family make end of life decisions.
Parkinson's Progression Palliative and End of Life Issues
By Parkinson's Canada, February 23, 2016
This 38-minute webinar provides an overview of Parkinson's symptoms, and treatment challenges due to disease progression. 18-minutes in the topic turns to planning a good death, the euphemisms even doctors use to avoid discussing death, the most common cause of death in those with PD, putting your end-of-life preferences in writing. Palliative care can help families face these end-of-life issues.
Last updated May 2025 by Stanford Parkinson's Community Outreach.
