Late-Stage Parkinson's Disease
When Parkinson's Disease (PD) progresses to advanced stages, "treatment" usually moves to "management," and caregivers play an increasingly important role. Advanced PD brings complex challenges including motor fluctuations, cognitive changes, swallowing difficulties, and increased fall risk that require specialized approaches and often a multidisciplinary care team.
Often, that multidisciplinary care team can include palliative care and, at a later time, hospice care. Palliative care, also called holistic or supportive care, focuses on comfort, quality of life, and support for both the person with PD and caregivers. Understanding what to expect, when to consider palliative and hospice care, and how to navigate decisions about advanced treatments becomes crucial for families.
These resources help caregivers manage late-stage PD complexities with practical strategies and expert guidance. Some of the resources are from PD organizations though the concepts are not specific to Parkinson's.
Advanced PD Overviews
Advanced Parkinson’s
By 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.
See also Advanced Parkinson’s: Symptoms, Complications, and Care Strategies, a blog post from August 2023.
Advanced-Stage Parkinson's Disease
By M Health Fairview, January 2025
This series of five short videos offers an introduction to advanced-stage 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.
Challenging Late-Stage PD Symptoms
Bowel and Bladder Issues in Advanced Parkinson’s Disease
Published by 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.
Falls, Extreme Immobility and Secretion Management
Published by 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. He emphasizes a team-based comprehensive approach as imperative in recognizing and addressing disabling motor and nonmotor symptoms.
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, that can develop in advanced PD. The author addresses possible causes, strategies for improving nighttime sleep and wakefulness during the day.
Taking Care of the Person with Advanced Parkinson's Disease
By American Parkinson Disease Association, 2025
This free, one-hour APDA training and certification is intended to educate home health aides and nursing home staff about PD symptoms and treatments, specific challenges of PD as the disease advances, and strategies about how best to take care of a person with advanced PD. Professionals who complete the course can claim one continuing education unit.
Long Guides About Advanced PD
CareMAP. Your Guide to Managing Advanced Parkinson’s
By 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 PD.
Thinking About Advanced Parkinson’s
Published by Parkinson’s UK, August 2014
This 104-page booklet defines advanced PD 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.
Palliative Care and Hospice For PD
Advanced Parkinson's Care Planning: Palliative Care, Hospice and End-of-Life Decisions
By Parkinson's Foundation, July 7, 2022
In this one-hour webinar palliative care specialist Martha Twaddle, MD, explains palliative care, hospice services and resources for end-of-life decisions.
You can also watch More than PD - Managing Multiple Chronic Conditions, a one-hour webinar from October 2024.
Palliative Care: Caring for the Whole Person
By Stanford APDA Information and Referral Center and Stanford Parkinson's Community Outreach, January 15, 2024
Jocelyn Jiao, MD, is both a palliative care doctor and movement disorder specialist at Stanford University. In this talk to the Stanford Palo Alto PD support group she discussed the big picture about an individual's whole health and defined palliative care.
You can download the slides and Webinar Notes are on the Stanford PD Community Blog.
See also Quality of Life, Wellness, and a Neuro-palliative Approach, a one-hour video with Maya Katz, MD, and related slides.
My Parkinson's Story: Advanced Parkinsons
By Veteran's Health Administration
In this 10-minute video a man, his wife, and palliative care team share his experiences with his late stage Parkinson's.
Palliative Care for Parkinson's Disease
By American Parkinson Disease Association, September 7, 2022
In this episode of Dr. Gilbert Hosts, her guest is movement disorders specialist Jori Fleisher, MD. She responded to audience questions about how the palliative care approach can benefit people with PD and help improve your quality of life throughout the continuum of disease.
There is a related blog post, End-Stage Parkinson’s Disease & Risk of Death.
Parkinson's Disease and Palliative Care
Published by GetPalliativeCare.org
This page outlines the decline of PD 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.
There is also a two-minute video and webpage, What Is Palliative Care?
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. 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.
Palliative Care Overviews
Palliative and Hospice Care
Published by Parkinson’s Foundation
The information on this two-page fact sheet will help you better understand the differences between hospice and palliative care.
Palliative Care
By Parkinson Association of Northern California, October 23, 2021
This 34-minute question and answer session was part of PANC’s 2021 annual conference. UCSD palliative care physician Grace Amadi, MD, describes what “palliative care” means and its benefits to the person with PD, their caregiver, and their family. She also shares how to to get the maximum benefit out of the palliative care experience.
Palliative Care Roadmap
Published by Washington State Department of Health, July 2020
Serious conditions often cause difficult symptoms, challenging treatments, and caregiver stress. This 40-page booklet seeks to help you understand palliative care and how it can make your care more predictable and manageable.
Hospice Care Overviews
Expect the Best: How to Get the Most Out of Your Hospice Care
By Family Caregiver Alliance, January 27, 2021
In this one-hour webinar, registered nurse, Helen Bauer, and spiritual counselor, Jerry Fenter, both from The Heart of Hospice in Beaumont, TX, dispelled myths about hospice, offered suggestions for how to pick a good hospice service, explained the rights of patients, and who is involved on a hospice care team.
When is it Time to Call Hospice?
Published by Agingcare.com
This article speaks to how important it is to understand when to engage hospice, and how one qualifies for services.
Choosing a Hospice Agency
Find and Compare Hospice Providers
Published by Medicare
Using this online resource, you can search and find Medicare-certified hospices in your area and compare their quality of care.
How to choose a hospice provider
Published by Hospice Foundation of America, September 24, 2024
Families often receive a referral to a specific hospice service. However, where there is more than one hospice service, families may choose which to enroll with. This article outlines considerations in comparing hospice services, including questions to ask and special considerations.
How to Choose the Best Hospice for Your Loved One
By End-of-Life University, January 17, 2024
Karen Wyatt, MD, is host of the End-of-Life University podcast. In this episode she talks with hospice nurse and author Barbara Karnes, RN, about why they hope people will choose hospice for care at the end of life and how to choose the right hospice for your loved one.
Last updated April 2026 by Stanford Parkinson's Community Outreach.