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


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.


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.”


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

Beginning Your Journey with Parkinson’s

Published by the Parkinson’s Foundation

This series of five related web pages encourages new Parkinson’s caregivers 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 with links to information sheets about symptoms, managing caregiver stress, recruiting or hiring help, completing legal documents, getting organized and tips for communicating with the healthcare team.


Caregiver Stress

Published by the Parkinson's Foundation

Recognize the warning signs of caregiver fatigue before it leads to clinical depression. To prevent caregiver fatigue and burnout place your own physical, medical and emotional needs on equal par with the person with Parkinson's. Start by recognizing your own feelings, speak up, accept help, manage your stress, get professional help if needed, be open with family and friends. Take a brief caregiver stress inventory and make a caregiving action plan. 


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 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 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.


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.)
Presenter’s slides


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 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.



Last updated August 2020 by Stanford Parkinson's Community Outreach.