When someone is diagnosed with Parkinson's disease (PD), the person 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.
We also have a page with recordings of webinars for caregivers.
Becoming a PD Caregiver
Becoming a Care Partner
Published by 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.
Being a PD Caregiver
By Stanford APDA Information & Referral Center, March 10, 2025
In this 90-minute webinar, Lianna Marie, a caregiver who cared for her mother with Parkinson's disease for 30 years (including eight years with dementia), shares lessons learned from her caregiving journey. She has authored several books about Parkinson's caregiving and founded a website offering resources, posts, and a free 22-page ebook with practical tips to make living with Parkinson's easier and safer.
Questions a Caregiver Should Ask about Parkinson’s Disease
By Anne-Marie Botek. Published by AgingCare.com, 2015
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.
Caregiving in Middle Stages
Advice for Parkinson’s Care Partners
By Davis Phinney Foundation, October 24, 2018
In this 24-minute podcast, Kelsey Phinney interviews her mom, Connie Carpenter Phinney, about being a Parkinson's care partner for over 18 years. Topics include how Davis was diagnosed, telling their young children, family life changes, self-care and communication, household safety modifications, coping with good and bad days, and maintaining their marriage despite Parkinson's.
Caregiving at Home: A Guide to Community Resources
Published by Family Caregiver Alliance, 2017
Includes information on assessing needs, values & preferences to determine what kind of help/support will best work, and how to hold a family meeting. Also, community care options, like friends/family/neighbors/religious community, California’s Caregiver Resource Centers, AAAs, senior centers, adult daycare, respite care, meals, Caregiver managers and more.
Caring for Someone with Parkinson's Disease
By WellMed Charitable Foundation, 2020
In this one-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 are on the Stanford PD Community Blog.
Communicating and Staying Connected with Parkinson’s in the Relationship
By World Parkinson Coalition, February 3, 2022
Good communication is key to any healthy relationship, but PD and its common symptoms offer unique communication challenges. In this hour-long webinar, a virtual panel focuses on challenges and solutions related to maintaining effective communication between care partners and their loved one with PD.
Parkinson's Caregiver Video Series
By Stanford Parkinson's Community Outreach Program, June 2024
Ten short videos (three to six 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.
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, six-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.
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-Care
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.
See also You, Your Loved One and Parkinson’s Disease, where Lonnie Ali and the Michael J. Fox Foundation offer advice about relationships and how best to balance caring for a family member and oneself.
Parkinson’s Care Partners: 9 Ways to Get the Care You Need
Published by Davis Phinney Foundation, 2025
This article lists nine tips to ensure that you are receiving the care you need to avoid burnout, be the care partner your loved one with PD needs, and ensure you both have the best quality of life possible.
Parkinson’s Care Partners: Rewriting the Rule Book
Published by Davis Phinney Foundation, 2025
This 20-page digital booklet guides care partners in creating a personal rule book for living well with Parkinson's. It helps reset relationships, define decision-making, focus on mutual well-being, clarify challenges and expectations, and avoid anger or guilt from lack of clarity.
Preparing for Doctor Appointments
Preparing for a Medical Appointment
Published by Parkinson's Foundation
This comprehensive page is directed at care partners, including tips for scheduling an appointment, what to bring, managing your appointment time, and how to follow up if you have more questions. Links to printable symptom diary, medication list, and more worksheets are handy.
Adult Children Caregivers
Adult Children Providing Care for People with PD
By Parkinson Association of Alberta, May 27, 2020
In this one-hour webinar, movement disorders specialist Janis Miyasaki, MD, provides insight and information for adult children of people with Parkinson disease, including the rewards and many challenges like changing intergenerational dynamics, difficult decision making, family conflict, balancing everyone's needs and so much more.
Being There for Your Parent with Parkinson’s
Published by Parkinson's Foundation, December 27, 2022
In this 20-minute episode of the podcast, Substantial Matters, Kelly Arney, MSSW, has several good pieces of advice for different situations, including communicating with the parent about how much help they will accept without giving up their autonomy.
Care Planning for a Parent Living with Parkinson's
Published by Davis Phinney Foundation, August 1, 2019
This article offers seven considerations for planning and managing the care of an aging parent as suggested by a man who cared for his mother with PD. These are elements of care that you will want to understand and plan for prior their need, so you aren't making complex decisions in the midst of a health or safety crisis.
A Family's Guide for Caring for a Parkinson's Patient at Home
By Claire Samuels. Published by OurParents.com, March 29, 2023
Although titled for the whole family, this article speaks directly to adult children. In addition to providing an overview of PD, including treatment options, there is good advice for how to help your parent as symptoms progress and how to take care of yourself at the same time, including mental health considerations for both parent and child.
Living with Uncertainty: Tips for Having a Parent with Parkinson’s
Published by Parkinson's Foundation, November 16, 2023
In this post from the Parkinson's Today Blog, shares five tips for coping with the uncertainty around having a parent with PD, including concern over whether PD is genetic, how to reduce your risk of also developing PD, ways to maintain a positive outlook and manage anxiety, tending to feelings of grief and loss, and living life to the fullest.
Manuals for PD Caregivers
Caring and Coping
Published by 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.
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.
The Parkinson’s Care Partner’s Digital Toolbox
Published by Davis Phinney Foundation, March 14, 2018
This blog post provides links to over 30 worksheets for Parkinson's wellness, lifestyle self-assessments, and symptom checklists, plus caregiver tools including calendars, communication aids, digital legacy management, legal information, meal planning, medication management, safety resources, care partner self-care, transportation, and more.
See also the 112-page "Every Victory Counts...for Care Partners" 2021 manual.
Self-Paced Courses for Family Caregivers
Parkinson’s Care Partner Training
By Davis Phinney Foundation, October 24, 2018
This ten-part program led by a movement disorder specialist, clinical social worker, registered dietician, and care partner mentors offers education, confidence-building tools, and strategies for managing Parkinson's complications. Includes a 56-page digital handbook with journal prompts, educational links, and homework ideas.
Parkinson’s Foundation Care Partner Program
By Parkinson's Foundation
A series of self-paced online courses designed for anyone caring for someone with Parkinson's, including spouses, partners, family members, and friends. Courses feature clinical experts such as movement disorder neurologists, social workers, psychologists, and rehabilitation therapists, along with experienced care partners who share insights from their lived experiences.
Supporting Meaningful Engagement
By Lewy Body Dementia Association
This free, six-part course is presented by an occupational therapist. Each video focuses on a different aspect of daily life, providing insights into how to adapt activities and environments to meet the unique cognitive and physical needs of those with Lewy Body Dementia. Care partners will learn to encourage participation in ways that foster a sense of accomplishment and well-being.
Self-Paced Courses for Professionals
Parkinson Education Program for Community Caregivers
By 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.
Family Conversations with Older Drivers
Driver Planning Agreement
A printable sheet which both the older driver and family sign. The family agrees to help the older driver to explore all options to remain mobile, and the older driver agrees to explore other forms of transportation.
How to Understand and Influence Older Drivers
Published by National Highway Traffic Safety Association
This comprehensive webpage is intended to inform and broaden the discussion about older driver safety and mobility. In it you will find detailed guidance to help older drivers make informed decisions about their driving behavior and suggestions on how to begin a conversation about safety concerns.
Seniors and Driving: A Guide
Published by Caring.com
Comprehensive webpage covering causes of driving difficulties with age, warning signs of an unsafe elderly driver, professional assessments of driving safety, how the DMV can help ensure an older adult drives safely, how to have 'the talk' about giving up the keys, ways tohelp a senior transition from driving, transportation options for seniors who no longer drive, and top ridesharing options for seniors.
Two Resources for Family Conversations
Published by The Hartford Insurance Group
Family Conversations with Older Drivers
This short web page highlights changes that occur with age that make driving more risky for older drivers, changes in driving behavior many people naturally make to continue to drive safely as they age, best practices for bringing up the issue if you think someone is no longer safe to drive, and some tips for situations in which the older adult refuses to make any changes to their driving habits.
Safe Driving for a Lifetime: Family Conversations with Older Drivers
By The Hartford Insurance Group, May 2018
This 24-page booklet, published in 2018, helps families understand in what situations an older person should restrict their driving or stop driving. Best practices in how to talk with someone about the issue, including how to help them plan for alternative transportation is included.
We Need to Talk: Conversations About Driving
Published by AARP
This online seminar, produced by AARP, The Hartford, and MIT AgeLab, will help you determine how to assess your loved ones’ driving skills and provide tools to help you have this important conversation. The video is free, but requires a free account to watch.
Spanish: See En español, below
Conversations with a Driver with Dementia
How Not to Take the Car Keys and How to Take the Keys
By Teepa Snow, OT
These are two videos by occupational therapist Teepa Snow. In the first, three minutes long, she discusses the wrong ways to take car keys from someone with dementia. In the second, five minutes long, she demonstrates an effective technique for getting someone with dementia to relinquish car keys.
Anxiety in PD
Moving with Mood Changes in Aging and Parkinson’s: A Look at Depression and Anxiety
By The Michael J. Fox Foundation, June 2020
In this one-hour webinar, a panel of physicians and people with PD that include a psychiatrist, neurologist, and a music producer discuss how and why mood changes, such as depression and anxiety, happen in Parkinson’s, how you and your loved ones can talk about these symptoms with each other and with your providers, and what treatment options are available.
Mood & Cognition: Non-motor symptoms of Parkinson’s disease & how it impacts relationships
By Parkinson’s Canada, March 3, 2020
This 1-hour webinar will help you deal with relationship issues stemming from mood and cognitive changes that occur as a result of living with Parkinson’s disease. The webinar also focuses on various communication strategies.
Apathy and PD
Apathy and Parkinson’s
By Parkinson Canada, 2025
This 4-page fact sheet briefly outlines the prevalence, symptoms, and causes of apathy in Parkinson's before explaining how to distinguish apathy from depression and fatigue. Facial masking and softer, slower speech can complicate this distinction for families. The last two pages have tips on how to identify and cope with apathy for both people with PD and caregivers.
Apathy and Parkinson’s
By Parkinson TV, July 25, 2018
This 30-minute episode of Parkinson TV (episode 4, season 2) is an interview of two professionals, a woman with PD and her spouse. The conversation distinguishes apathy from depression. The focus is on how apathy affects both the person with PD and those who care for them plus what can be done to overcome apathy and relieve caregiver burden. Five minutes are spent interviewing a neurologist in Spain for an international perspective of PD.
Motivation and Parkinson’s disease: A discussion on Apathy & Impulsivity
By Parkinson Canada, February 4, 2021
In this 50-minute talk, psychiatrist Mateusz Zurowski, MD, walks listeners through the non-motor Parkinson's symptoms of apathy and impulsivity. He explains why people with Parkinson's experience apathy and shares what the patient, care partners, and the medical team can do to help.
Mental Health and Parkinson's
By Parkinson Society British Columbia, March 30, 2021
In this 1-hour talk, clinical counselor Courtney Doherty describes depression, anxiety, and apathy -- all common changes in mood in Parkinson’s disease (PD). And she provides extensive information for how these changes can be treated, particularly in non-pharmacological ways.
Cognition and PD
Caregiving Strategies for PD Dementia
By PMD Alliance, January 11, 2021
In this one-hour webinar, Angelo Domingo, Psy.D., does a good job of explaining the cognitive changes caregivers can expect in the later stages of Parkinson's and shared numerous tips for accomplishing daily tasks as smoothly as possible despite those changes.
Cognition, Caring and Coping
By World Parkinson Coalition, September 2020
This one-hour virtual panel begins with a series of short presentations on cognitive changes in people with Parkinson’s by four speakers with different experiences in this topic: a registered nurse, a social worker, and a person with Parkinson’s with his caregiver husband. Following the presentations, the discussion and question and answer period was focused on the role of PD caregivers when a person with PD is experiencing cognitive changes.
Depression and PD
Moving with Mood Changes in Aging and Parkinson’s: A Look at Depression and Anxiety
By The Michael J. Fox Foundation, June 2020
In this one-hour webinar, a panel of physicians and people with PD that includes a psychiatrist, neurologist, and a music producer discuss how and why mood changes, such as depression and anxiety, happen in Parkinson’s. Also discussed is how you and your loved ones can talk about these symptoms with each other and with your providers, and what treatment options are available.
Depression and Parkinson’s Disease
By Parkinson's Society of British Columbia, May 12, 2020
In this one-hour webinar, psychiatrist Fidel Vila-Rodriguez, MD, discusses the symptoms and treatment options for depression as well as the state of research into depression and PD, briefly touching on experimental forms of neurostimulation to address depression.
Apathy or Depression: Which One Is It?
By Parkinson’s Foundation, June 14, 2016
This 68-minute audio lecture with coordinated slide presentation features Dawn Bowers, Ph.D., speaking on the differences and overlapping aspects of apathy and depression, the difficulty in diagnosing for people with Parkinson’s disease, and treatments for both.
Hallucinations and PD
A Caregiver’s Guide to Parkinson’s Disease Psychosis
By Andrew J. Ridder, MD. Published by Michigan Health, Brain Health Blog, February 16, 2017
While more than half of those taking carbidopa-levodopa may experience psychosis (a break with reality), medication management of these symptoms is a balancing act. First, families must bring psychotic behavior (primarily hallucinations, delusions and illusions) to the attention of your medical team. Medical causes of the behavior, like infection must be ruled out, followed by a review of medications and possible medication adjustments before a lifestyle changes and possible medications for treatment are added.
Motor Fluctuations or "OFF" Times and PD
How to Understand and Manage OFF Times as a Parkinson's Care Partner
Published by Davis Phinney Foundation, November 18, 2020
Personal testimonies from Parkinson's care partners offer readers suggestions for how to help a loved one with PD to manage medications to minimize "off" times, exercise and move about safely, cope with frustrations,
Veterans
Caring for a Veteran with Parkinson's
Published by Parkinson's Foundation
Along with information and resources available to all Parkinson's caregivers, this page adds links and phone numbers to resources specifically available through the VA for Parkinson's care partners. Also included are the signs of depression, hospital preparedness, and the phone number to the Parkinson's Foundation's Helpline.
Last updated October 2025 by Stanford Parkinson's Community Outreach.