APDA American Parkinson Disease Association
Information & Referral Center

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.

 

Relevant Publications - Downloadable

“Thinking About Advanced Parkinson’s”
Published by Parkinson’s UK
This 104-page booklet 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.

 


Relevant Online Information

“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.

 

“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.

 


Relevant Online Lectures and Webinars

“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 Late Stage Parkinson’s”
By the Parkinson’s Disease Foundation (Now the Parkinson's Foundation), November 22, 2011
This 68-minute webinar (audio with slides) is presented by a registered nurse and a physical therapist of the Struthers Parkinson’s Center in Minneapolis, MN.  They discuss in some detail what you can expect as Parkinson’s progresses to its advanced stages, how you can prepare for those challenges through education and training, use of adaptive equipment and use of appropriate cues to make daily life easier, promote safety, dignity, and quality of life.
Register to view the webinar
Slide presentation

 


"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.

 


Expert-Level Resources

“Late-stage Parkinson’s disease,” by M. Coelh and J. J. Ferreira
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.

 

“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.
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.
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
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.

 


Non-English Publications

“Manejo de la enfermedad de Parkinson en su etapa avanzada”
Published by the National Parkinson Foundation (Now the Parkinson's Foundation)
Informacion sobre la enfermedad Parkinson, y como a manejarlo.

 

This list compiled by Denise Dagan for Stanford Parkinson's Community Outreach Program, August 2018.

Design support by Kevin T. Boyd

Footer Links: