Late-Stage PD

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


Downloadable Documents (PDF)

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.


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.


Online Articles

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.


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.


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.


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.


Podcasts & Webinars

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 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.


Expert-Level Resources

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.