Parkinson's Disease Caregiver Resources

When someone is diagnosed with Parkinson's disease (PD), he/she is usually able to continue to provide self-care for some time.  However, since Parkinson's is a progressive disorder, over time the person will need more and more assistance.  Often someone close to the person with PD will step in to help out.  Usually this is a spouse or adult child, but it can a sibling, parent, friend, even ex-spouse. 

As the person with Parkinson's becomes more dependent on the primary caregiver, the burden or stress on the caregiver increases.  The resources listed here will help you understand what to expect as a Parkinson's caregiver and how to look after your own needs so your health is not impacted by caregiver stress.


Downloadable Documents | Online Articles | Podcasts & Webinars | Self-Paced Courses


Downloadable Documents (PDF)

Becoming a Care Partner

Published by the American Parkinson Disease Association, 2018

This two-page educational supplement offers tips on being a care partner for someone with Parkinson's disease and taking care of yourself. Included is a list of online resources useful to families managing long term illness.


Caring and Coping

Published by the National Parkinson Foundation (Now the Parkinson's Foundation), 2018

This 176-page comprehensive guide for caregivers of people with Parkinson’s may be helpful at any stage.  There are "Tip sheets" with pointers from every day care to travel concerns.  And there are "Worksheets" to prepare for medical appointments, keep track of medications on a scheduling sheet, maintain a symptoms diary, and preparing to interview and trained hired caregivers.  
En Español: Enfermedad de Parkinson: El Cuidado y la Adaptacion Necesaria


A Comprehensive Guide for Parkinson’s Caregivers

Published by Parkinson Society British Columbia, March 2018

This 67-page guide covers building a care team, best practices of daily living, motor and non-motor changes, accessing support, preparing for the future, caring for the caregiver, references for further reading and an index of worksheets for care planning.


Parkinson’s Care Partners: Rewriting the Rule Book

Published by the Davis Phinney Foundation, 2019

This 9-page digital booklet walks you through writing your personal rule book for living well with Parkinson’s as a Parkinson’s care partner.  Having a rule book allows you to "reset your relationship with your person with Parkinson’s; define decision making and focus on the well-being of yourself and your person with Parkinson’s; identify and clarify challenges, wishes and expectations; and avoid feelings of anger or guilt that arise out of lack of clarity.”
See also the 112-page "Every Victory Counts...for Care Partners" manual.


Roadmap to Care: Planning for Your Loved One’s Needs at Each Stage of the Disease

Published by PMD Alliance, 2023

This comprehensive, easy to read, 6-page guide highlights the motor and nonmotor symptoms common in early, mid, and late stage Parkinson's, treatment needs, and what to do at each stage. Because the health of primary care partners often suffers, especially in mid-to-late stages, this guide considers the physical, emotional, and financial needs of both the person with PD and primary care partner so you have the support you need and get ahead of the stressors.


You, Your Loved One and Parkinson’s Disease

By Lonnie Ali and the Michael J. Fox Foundation.  Published by the Michael J. Fox Foundation, undated

In these four pages, originally published in Reader’s Digest, Lonnie Ali and the Michael J. Fox Foundation offer advice about the impact of Parkinson’s disease on relationships and how best to balance caring for a family member and oneself.


Online Articles

Caring for the Care Partner

Published by the Parkinson’s Foundation

This series of web pages encourages new Parkinson’s care partners to build your knowledge base so you can be prepared for the special challenges of caring for someone with Parkinson’s.  They outline what you can expect from a new diagnosis to advanced PD with links to information about making meaning in caregiving, balancing work and caregiving, self-care, caring from afar, getting outside help, and more.


The Parkinson’s Care Partner’s Digital Toolbox

Published by the Davis Phinney Foundation, March 14, 2018

This blog post is a good page to bookmark.  It provides links to over 30 worksheets for Parkinson’s wellness and lifestyle self-assessments, and symptom checklists.  Also provided are links to caregiver tools, like calendars/organizers, contacts/communication tools, digital legacy management, general caregiving tips, legal information, meal planning, medication/medical management, safety, self care for the care partner, transportation, and more.


Parkinson’s Disease and Caregiving

Published by the Family Caregiver Alliance

This webpage, with a printer-friendly version, provides an overview of Parkinson’s disease symptoms, treatment/symptom management, Lewy Body Dementia (related diagnosis), support for the caregiver and resources.


Questions a Caregiver Should Ask about Parkinson’s Disease

By Anne-Marie Botek.  Published by AgingCare.com

When faced with the diagnosis of Parkinson’s disease this list of questions will help you become an advocate.  In addition to commonly asked questions, there are five you should not fail to ask, including questions about treatment options, why a particular treatment path, exercise, diet, and prognosis. 


Podcasts and Webinars

Advice for Parkinson’s Care Partners

By the Davis Phinney Foundation, October 24, 2018

In this 24-minute podcast, Kelsey Phinney inverviews her mom, Connie Carpenter Phinney, about being a Parkinson’s care partner for over 18 years.  Kelsey asks Connie several questions, including how Davis was diagnosed; how the couple told their young children; how life changed for their family; how Connie cares for herself and communicates her needs to Davis; what household changes were made for safety the well-being of both Connie and Davis; how to cope with the good days and bad days; and how Connie and Davis care for their marriage, despite Parkinson’s.


Ask the MD: Caregiving and Parkinson’s

By the Michael J. Fox Foundation, October 23, 2015

Movement disorder specialist Rachel Dolhun, MD, packs dozens of practical tips on caring for yourself and your loved one with Parkinson’s in this 3.5-minute video.


Being a PD Caregiver

By the American Parkinson Disease Association, October 19, 2020

In this installment of Dr. Gilbert Hosts, the featured guest is Lianna Marie, RN, whose mother had Parkinson's disease.  Lianna shares a few tips to make Parkinson's caregiving easier, then answers several questions about Parkinson's caregiving over the course of an hour.


Building Stronger Caregiving Partnerships Through Better Communication

By the Parkinson’s Foundation, December 1, 2018

Diminished communication significantly impacts the social, emotional and physical burdens of caregiving.  In this hour-long presentation at the Parkinson’s Foundation Caregiver Summit, Angela Roberts, PhD, explains how changes in speech, cognition and hearing due to PD (and normal aging) affect communication.  She offers specific strategies for optimizing communication.


Caring for Someone with Parkinson's Disease

By the WellMed Charitable Foundation, 2020

In this 1-hour teleconference, clinical social worker Elaine Book, addresses some of the challenges unique to PD caregiving, by stage of PD.  She also talks about management of caregiving responsibilities and self-care.  And there are some good tips about communication. Sadly, only the first 12 minutes of the teleconference was recorded. Fortunately, staff at the Parkinson's Community Outreach Program attended and took notes of the entire hour.
Teleconference notes on the Stanford PD Community Blog


Parkinson's Caregiver Video Series

By the Stanford Parkinson's Community Outreach Program, June 2024

10 short videos (3-6 minutes) on tips for newly diagnosed, avoiding nausea with Sinemet, adult day care programs, apathy and exercise, low blood pressure, resistance to in-home care, hospitalization, hospital discharge planning, home health vs. home care, and respite grants.


Top 10 Ways A Care Partner can Support someone with Parkinson’s disease

By Connecting Caregivers Radio, November 2, 2021

In this one-hour webinar, Yazmil Soriano, with Neuro Challenge, offers tips for caring for a person with PD. This information is especially useful for care partners of someone in early to mid stages.


Self-Paced Courses for Family Caregivers

Parkinson’s Care Partner Training

By the Davis Phinney Foundation, October 24, 2018

This 10-part comprehensive educational program is led by a movement disorder specialist, clinical social worker, registered dietician, and care partner mentors. These experts offer education, tools for building self confidence, strategies for managing change, and a game plan for navigating the various complications Parkinson’s may throw your way. In addition to the pre-recorded program, participants receive a 56-page digital (printable PDF) handbook with journal prompts, links to educational materials, foundational content, and homework ideas.


Parkinson’s Foundation Care Partner Program

By the Parkinson's Foundation

This series of eight free, self-paced, online courses is recommended for anyone caring for a person living with PD.  The aim is to promote awareness, create actionable strategies for self-care, develop clear networks for support, and provide relevant tools to empower Care Partners.  Create an account or sign in with LinkedIn, Facebook, or Google.  Chrome web browser is required.


Taking Care of the Person with Advanced Parkinson's Disease

By the American Parkinson Disease Association

This free one-hour APDA Training & 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 (CEU). 


Self-Paced Courses for Professionals

Parkinson Education Program for Community Caregivers

By the Parkinson Society Southwestern Ontario

This eight-module online educational series is for professionals working in community settings (home health, retirement homes, long-term care homes, and hospitals) who provide care to individuals living with moderate to severe PD.  


Last updated December 2024 by Stanford Parkinson's Community Outreach.