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.
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.
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
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.
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.”
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.)
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.
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
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.
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.
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.
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.