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 | Expert-level Resources
Manejo de la Enfermedad de Parkinson en su Etapa Avanzada
Published by the National Parkinson Foundation (Now the Parkinson's Foundation)
Este libro de 28 páginas (PDF) proporciona información sobre la enfermedad Parkinson, y como a manejarlo.
Motor Fluctuations in Parkinson's Disease: What You Need to Know
Published by the American Parkinson Disease Association, May 2021
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 Treatment and Therapies
Published by Parkinson’s UK
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
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
It can be a challenge for families to know when their loved one with Parkinson’s is eligible for hospice care, due to the progressive nature of the disease. This webpage provides information about the end stages of Parkinson’s, and eligibility criteria for hospice.
Falls, Extreme Immobility and Secretion Management
Published by the American Parkinson Disease Association
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
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.
Advanced Parkinson's and Palliative Care in the 21st Centurey
By the Parkinson's Foundation, November 27, 2018
In this one-hour webinar movement disorder specialist Janis Miyasaki, MD, reviews the World Health Organization (WHO) criteria for palliative care, various models of delivery, U.S. hospice criteria, and the various challenges of palliative care coordination utilizing subspecialists.
Care of Late Stage Parkinson’s Disease
By CurePSP, September 26, 2012
Therapists Educated & Aligned in Managing - Parkinson’s Disease (TEAM-PD) presents part of its therapist-oriented conference on PD PLUS and Advanced PD held on April 7, 2012 at Oregon Health and Sciences University (OHSU). Care of Late Stage Parkinson’s Disease presented by Julie Carter, RN, MS, ANP.
Care of Patients with Advanced Parkinson’s Disease
By the UCSF Parkinson’s Disease Clinic and Research Center, May 20, 2017
Presenting at the UCSF 9th Annual Conference of Parkinson’s Disease for Patients and Caregivers, Dr. Maya Katz spoke for 38-minutes about caring for those with advanced Parkinson’s disease, including a definition of advanced PD, medication considerations, non-motor symptoms, wellness and exercise, goals of care and taking a supportive care approach.
CareMAP. Your Guide to Managing Advanced Parkinson’s
By the National Parkinson Foundation (Now the Parkinson's Foundation), 2014
A series of 21 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.
Late-stage Parkinson’s disease
By M. Coelh and J. J. Ferreira. Published by Nature Reviews of Neurology, 2012, Aug: 8 (8): 435-42. Abstract
A review of the changing landscape of the later stages of PD due to improved treatment and survival times. The authors propose a definition of late-stage PD to designate patients who have progressed beyond the advanced stage.
Palliative Care in Parkinson's Disease
Published by Royal College of Physicians of London, Parkinson's Disease: National Clinical Guideline for Diagnosis and Management in Primary and Secondary Care, Chapter 11, 2006
In the absence of any curative treatment, the principles of palliative care should be applied throughout the course of the disease and not limited to the terminal end-of-life period. This chapter defines palliative care and discusses the palliative phase of Parkinson's disease, palliative carers, care homes, social costs, withdrawl of drugs, pressure ulsers, end-of-life issues, recommendations and ethical issues.
Therapeutic Management of Late-Stage Parkinson’s Disease: Review of the Movement Disorder Society’s Guidelines
By Aggarwal Loved, MD, and Frank A. Cervo, MD. Published by Managed Health Care Connect, December 12, 2011
This review of the Movement Disorder Society’s guidelines for therapeutic management of late-stage Parkinson’s applies the guidelines to a case scenario. The guidelines first appeared in the European Handbook of Neurological Management. This review cites the Annals of Long-Term Care: Clinical Care and Aging, 2011; 19 (12) : 42-46.
Treatment of Advanced Parkinson’s Disease
By Sara Varanese, et. al. Published by Parkinson’s Disease, 2010
Patients at late stage Parkinson’s disease develop several motor and non-motor complications that should be managed by a balance between benefit and side effects of medications, physical, occupational and speech therapies, and nursing care.
Untreated Pain and Suffering in End-Stage Parkinson Disease Prompts Call for Improved Palliative Care
By Dan Hurley. Published by Neurology Today, June 19, 2007, vol. 7 (12) : p 16-17
Palliative care specialists agree with study results, presented in May 2007 at the American Academy of Neurology meeting, that severity of pain and suffering in PD at the end of life is about equal to that of patients with ALS but is significantly under-treated.
Last updated August 2020 by Stanford Parkinson's Community Outreach.
