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:

Best Publications - Downloadable

“Caring and Coping,”
Published by the National Parkinson 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.  
A companion to the video series CareMAP Your guide to Managing Advanced Parkinson’s.
Print any of the worksheets from caremap.parkinson.org/worksheets.

"Caring for the Care Partner"
Published by Parkinson's Disease 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."

“Coping Skills for Parkinson’s Care Partners,”
Published by the Parkinson’s Disease Foundation, Fall 2013
This two page fact sheet summarizes an Expert Briefing video of the same name.  It encourages caregivers to practice self-compassion and offers specific tools for self-care.

"Coping With Dementia: Advice for Caregivers"

Published by Parkinson's Disease Foundation, 2003.
This two-page fact sheet draws upon lessons from the Alzheimer's community. On the second page is a list of "10 Tips for Managing Slowed Communication or Thinking."

"Keys to Caregiving"
Published by 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.

Best Online Information

"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?"

Best Online Video

“Coping Skills for Parkinson’s Care Partners,” by Julie Carter, RN, MS, ANP
Online webinar by the Parkinson’s Disease Foundation, November 20, 2012
This 70-minute audio lecture with slides addresses the health risks of caregiving and specific strategies for looking after one’s health as a caregiver through stress management techniques.

“CareMAP. Your guide to Managing Advanced Parkinson’s”
Published by the National Parkinson Foundation, 2014
A series of 40 videos in both English and Spanish on Home Care, Outside Help, Caring from Afar, Caring for You, End of Life and Resources which provide practical suggestions for coping with the complex problems that arise as a result of advanced Parkinson’s disease.

This list compiled by Robin Ridle with the Stanford APDA Information & Referral Center, April 2012. Last updated by Denise Dagan, January 2017.

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