APDA American Parkinson Disease Association
Information & Referral Center

PD Caregiver Resources

Here are some print, online, and video resources that are specific to Parkinson's Disease caregivers:

Relevant Publications - Downloadable

The Caregiver’s Notebook
Published by Springwell, Inc.
An excellent, comprehensive and free caregiver notebook includes 36 templet pages that allow you to fill in and keep track of medical, personal care, financial and legal information, and to reprint and update as often as needed. 

“Caring and Coping”
Published by the National Parkinson Foundation (Now the Parkinson's Foundation), 2014
176-page comprehensive guide for caregivers of people with Parkinson’s at any stage, with practical suggestions including both ’Tip sheets’ with practical pointers from every day care to travel concerns, and ‘Worksheets’ to prepare for medical appointments, keep track of medications on a scheduling sheet, a symptoms diary, even interviewing and training hired caregivers.  
En Espanol: Enfermedad de Parkinson: El Cuidado y la Adaptacion Necesaria

"Caring for the Care Partner"
Published by Parkinson's Disease Foundation (Now the Parkinson's Foundation), 2011
In this two-page fact sheet, readers are told: "You may not think of yourself as a care partner or see the new tasks in your life...as acts of caregiving. ...[Because] the role of the PD care partner lasts for decades, ... care partners ... can benefit from understanding how this role affects their lives in the long term and how to ask for help."

“Keys to Caregiving,” by Caryn Crenshaw, RN
Published by the American Parkinson Disease Association, 2007
In this four-page educational supplement, readers are encouraged to educate yourself; understand that PD is unpredictable; acknowledge your feelings; develop coping strategies; and ask for and accept help.


Relevant Online Information

“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.

“Caring for You”
Published by the Parkinson’s Foundation
This series of eight related web pages includes links and videos with advice for Parkinson’s caregivers to help balance life and caregiving, consider your own health needs, identify caregiver fatigue and prevent caregiver burnout, anticipate what to expect emotionally, recognize and deal with dementia, engage spiritual tools to manage caregiver stress and cope with grief.

“Caring from Afar”
Published by the Parkinson’s Foundation
This series of three related web pages uses links and videos to help both primary and secondary Parkinson’s caregivers plug into resources to assist their loved one with Parkinson’s disease from a great distance.  Advice includes what to do and what not to do, how to stay in touch and be organized.

"Guide for Caregivers"
Published by Michael J. Fox Foundation. Last updated July 2011
Authors of this webpage are those with PD, offering tips and suggestions for dealing with the emotional, social, and basic medical issues of caregiving. Questions addressed include: "So, if physical problems are minimal, what kind of help does a caregiver provide?" and "It sometimes seems that my whole life revolves around caring for my PWP, and I feel frustrated, angry, and worn out. Do other caregivers ever feel this way, and is there anything I can do about it?"

“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.

“Make Caregiving easier with a Caregiver Notebook Template”
Published by Daily Caring
This user’s guide has a detailed walkthrough with recommendations for the most useful pages to help you get the most out of the The Caregiver’s Notebook, 36 templet pages that allow you to fill in and keep track of medical, personal care, financial and legal information, and to reprint and update as often as needed. 

“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.


Relevant Online Lectures and Webinars

"Building a Care Partnership: Supporting a Loved One with Parkinson's Disease"
By Partners in Parkinson's
This 1-hour webinar is a conversation with Lonnie Ali, wife of Muhammad Ali, and Diane Breslow, MSW about assisting a loved one with Parkinson's disease, the importance of communication, some resources for education and support of the caregiver, and advice for taking care of oneself as a caregiver.

“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.
Register to view the webinar
Slide presentation

“Caregivers of People with Parkinson's Disease,” by Julie Carter, RN, MS, ANP
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.

“How to Take Care of the Caregiver”
By the Parkinson’s Disease Foundation (Now the Parkinson's Foundation), November 17, 2009
This 60-minute webinar is presented by a doctor of nursing.  She explores strategies to ensure the caregiver takes care of him or herself, which will also benefit the person with Parkinson’s disease.  She discusses signs of depression in the person with Parkinson’s and the care partner.  She points to specific areas where the care partner may require help or assistance, and identifies resources available to care partners.
Register to view the webinar
Slide presentation


"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.

“Lifting Patients, Safely,” by Allison Powell
By The Caregiver Space, May 27, 2017
This series of six short videos demonstrate how to avoid injuring yourself or the person you’re caring for while propping them up in bed, changing bed linens, applying adult diapers and briefs in a lying position, getting someone out of bed, and transfer skills.  There’s a bonus video on stretching to relieve back discomfort and ease calves, ankles and feet.

“NPF Caregiver Summit 2016”
By the National Parkinson Foundation (Now the Parkinson’s Foundation, November 11, 2016
This series of 12 videos (from 15-56 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 by Denise Dagan in November 2017, this list was originally compiled by Robin Riddle with the Stanford APDA Information & Referral Center, April 2012.

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