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

Becoming a Care Partner

Published by the American Parkinson Disease Association, 2018

This two-page educational supplement (PDF) 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, including individuals and agencies 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 (PDF) 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 (PDF) 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.

Every Victory Counts...for Care Partners

Published by the Davis Phinney Foundation, September 2021 

This 112-page manual (PDF) offers three sections of inspiration and information for Parkinson's care partners, including what it means to be a Parkinson's care partner, the care partner role following a PD diagnosis, and managing the complications of PD.  Appendix includes tips on home safety, self-care, and communication with .

Parkinson’s Care Partners: Rewriting the Rule Book

Published by the Davis Phinney Foundation, 2019

This 9-page digital booklet (PDF) 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; helps you identify and clarify challenges, wishes and expectations, and help you avoid feelings of anger or guilt that arise out of lack of clarity.”

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 (PDF) 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

In these four pages (PDF), 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 & caregiving, self-care, caring from afar, getting outside help, and more!

How do you Define What it Means to be a Caregiver

By Nancy Ryerson.  Published by the Michael J. Fox Foundation, Foxfeed Blog, April 20, 2016

This short webpage highlights that Parkinson’s caregiving looks and feels different for everyone.  The author uses real comments from the MJF Facebook community to demonstrate wide-ranging caregiving perspectives, and how people define being a caregiver.

How to Be the Parkinson’s Care Partner Your Partner Needs

Published by the Davis Phinney Foundation, March 15, 2018

In this interview transcript husband and wife Davis Phinney Foundation ambassadors, Brian and Lily, talk about what life has been like since Brian’s Parkinson’s diagnosis and how they’ve adjusted to the new roles they play in each other’s lives.

How to Build Your Parkinson's Care Partner Team

Published by the Davis Phinney Foundation, November 15, 2021

Just as a person with PD has a care team, care partners  care team as they navigate that role. Who plays a supportive role may change over time, and you may not need the same care team that another care partner does. As you think about who is vital to have on your team, consider the suggestions on this list of professionals and laymen.

How to Stay Healthy and Avoid Burnout as a Parkinson’s Care Partner

Published by the Davis Phinney Foundation, March 16, 2018

This blog post lists the 24 most common signs of caregiver burnout and five actions you can begin today to start living well as a Parkinson’s care partner.

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

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. 

Who Am I Now? The Ever-Changing Role of the Caregiver

by Jennifer L Rowe, LCSW. Published by Today's Caregiver

Very succinctly this article validates that the standards are high by which family caregivers are judged and the demands on caregivers are ever changing as the care recipient's disease progresses. Caregivers often neglect themselves while providing care, yet find it difficult to ask for help because that would be admitting inadequacy or failure. In addition, hiring in-home care, day programs, etc. are costly and may be out of reach for some households. State funded programs are available, as are the support of family and friends. Its okay to ask for help.

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 Parkinson’s disease (and normal aging) affects communication.  She then offers specific strategies for optimizing communication.  (Registration is required, but is free.)

Caregiving and Parkinson's: Laying the Groundwork for the Road Ahead

By the Parkinson’s Disease Foundation (Now the Parkinson's Foundation), November 19, 2013

This 64-minute webinar (audio with slides) focuses on laying the groundwork for your care partnership within the first few years of a Parkinson’s diagnosis.  Skills and resources helpful to care partners in early Parkinson’s disease are discussed, as well as practical suggestions, solutions and lessons learned from a Parkinson’s disease nurse specialist and a care partner.
Presenter's slides

Caring for Someone with Parkinson's Disease

By the WellMed Charitable Foundation

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

Caregivers of People with Parkinson's Disease

By the Parkinson’s Disease Foundation (Now the Parkinson's Foundation), November 20, 2012

This 70-minute webinar (audio and slides) addresses the health risks of caregiving and specific strategies for looking after one’s health as a caregiver through stress management techniques.

My Parkinson's Story: The Caregiver

By the Veteran's Administration

This 12-minute video alternates between an interview with a man and his wife and doctors. The man and his wife share how the challenges his Parkinson's symptoms have imposed on them, both individually and as a couple. The doctors validate this experience and recommend couples get emotional support and counseling to facilitate communication and encourage getting outside help to ease the caregiving burden, relieve stress and recharge.

NPF Caregiver Summit 2016

By the National Parkinson Foundation (Now the Parkinson’s Foundation, November 11, 2016

This series of 12 videos (from 15 minutes to 56 minutes) are taped sessions from a conference on Parkinson’s caregiving covering topics including creative caregiving, maintaining dignity & identity, emotional rollercoaster, tools for family caregivers, non-motor symptoms, coping strategies like yoga, stretching, mindfulness, and more.

The Role of Caregivers in Parkinson’s Disease

Presented at the UCSF Conference on Parkinson’s Disease, November 13, 2010

This half hour lecture by Elaine Lanier, RN, MS, presents an overview of the responsibilities and stresses of caregiving for someone with Parkinson’s disease and outlines practical ways to manage those challenges with a resource list at the end.

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

By Connecting Caregivers Radio, November 2, 2021

In this 1-hour webinar Yazmil Soriano, Care Advisor with the Parkinson's nonprofit, Neuro Challenge, offers tips for caring for a person with Parkinson’s disease (PD).  Although the ten "ways" are very high level concepts such as communication and journaling, many specific tips are shared as part of the ten concepts.

Self-Paced Courses

Parkinson’s Care Partner Training

By the Davis Phinney Foundation, October 24, 2018

A 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-efficacy, 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 Education Program for Community Caregivers

By the Parkinson Society Southwestern Ontario

The Parkinson Education Program (PEP) for Community Caregivers is an introductory 8-module online educational series offered by Parkinson Society Southwestern Ontario. This program is for caregivers (i.e. nurses, personal support workers, allied health professionals) who provide care to individuals living with moderate to severe Parkinson’s disease (PD). The target audience is caregivers working in community settings e.g. home health care, retirement homes, long-term care homes, and hospitals, caring for those living with Parkinson’s disease.

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.

Parkinson's Foundation Cognition Talk Series

By the Parkinson's Foundation

This seven-part online course is focused on cognition concerns and challenges of living with Parkinson’s. Each section (30 mins) of the series is presented by a specialized health professional discussing cognition from their viewpoint.

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). 

Last updated December 2023 by Stanford Parkinson's Community Outreach.