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

“Activities of Daily Living: Practical Pointers for Parkinson’s Disease”
Published by the National Parkinson Foundation (Now the Parkinson's Foundation)
This 44-page booklet offers suggestions for maintaining independence in, and use of adaptive aides for, bathing, dressing, sleeping, eating, toileting and mobility.  This resource includes tips for caregivers.
En Espanol: Consejos prácticos para la enfermedad de Parkinson

 

“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
Companion to the video series: CareMAP Your guide to Managing Advanced Parkinson’s.
Print worksheets: caremap.parkinson.org/worksheets.

 

"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.

 

“Managing Parkinson’s Mid-Stride, A Treatment Guide to Parkinson’s Disease”
Published by the National Parkinson Foundation (Now the Parkinson's Foundation), 2017
This 44-page book explains why symptoms may get better and worse throughout the day and how to treat an scope with them.  Find answers and read tips and stories that can help.

 

“Menejo de la enfermedad de Parkinson en su etapa avanzada”
Published by the National Parkinson Foundation (Now the Parkinson's Foundation)
Informacion sobre la enfermedad Parkinson, y como a manejarlo.

 


Relevant Online Information

“Addressing Your Loved One’s Communication Challenges”
Published by the National Parkinson Foundation (Now the Parkinson's Foundation)
This 1-page tip sheet has eight suggestions for better communication with someone who has Parkinson’s disease, including one-on-one or small groups, reducing distractions, close proximity, encourage deep breaths to enhance volume, patience, understand facial masking, recognize mood changes can be a symptom of PD, seek a referral to a speech pathologist.

 

“Caregiver Resources”
Published by the Parkinson’s Foundation
In addition to the Parkinson’s Foundation’s Helpline (phone and email), this webpage has links to services for older adults; caregiving assistance, education, support and networking; finding healthcare professionals; US government agencies; medication assistance programs; financial, legal and insurance support; products to assist with activities of daily living; and end of life planning organizations.

 

“Caregiver Stress Inventory”
Published by the National Parkinson Foundation (Now the Parkinson's Foundation)
Short self-assessment tool helps "to evaluate the amount of stress and isolation in your current caregiving situation, and to identify how to take simple actions to begin taking better care of yourself.”

 

"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.

 

“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.

 

“Simplifying Daily Care for Someone with Parkinson’s Disease,” by Denise Clark
Published by AgingCare.com
This webpage promotes adapting the home environment to deal with the challenges Parkinson’s presents and to make everyday routines easier - such as eating, bathing, and dressing to lengthen quality of life and lower stresses of completing activities of daily living.

 

“Tips for Common Symptoms of Parkinson’s Disease,” by Anne-Marie Botek
Published by AgingCare.com
Dr. Andrew Feigin shares how to cope with freezing gait, shaking hands too badly to get money out of a wallet, difficulty swallowing food, and leaning forward when walking,  In addition to tips for each, he recommends speech, physical, occupational, and art therapies.

 

“Tips for Dressing Someone with Parkinson’s”
Published by AgingCare.com
This webpage is a list of tips for dressing, including taking the right attitude, adaptive clothing, assisting with shaving and makeup, tips for hair care, manicure and pedicure, and creating a dressing routine that encourages ease of dressing, self care, and safety.

 


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.

 

“Care of Late Stage Parkinson’s Disease”
Published by CurePSP, September 26, 2012
Therapists Educated & Aligned in Managing - Parkinson’s Disease (TEAM-PD) presents part of its therapist-orisnted conference on PD PLUS and Advanced PD held on April 7, 2012 at Oregon Health and Sciences University (OHSU).  Care of Late Stage Parkinson’s Disease presented by Julie Carter, RN, MS, ANP.

 

“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

 

“CareMAP. Your guide to Managing Advanced Parkinson’s”
By the National Parkinson Foundation (Now the Parkinson's 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.

 

“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.

 

“Caring for a Person with Late Stage Parkinson’s”
By the Parkinson’s Disease Foundation (Now the Parkinson's Foundation), November 22, 2011
This 68-minute webinar (audio with slides) is presented by a registered nurse, and a physical therapist of the Struthers Parkinson’s Center in Minneapolis, MN.  They discuss in some detail what you can expect as Parkinson’s progresses to its advanced stages, how you can prepare for those challenges through education and training, use of adaptive equipment and use of appropriate cues to make daily life easier, promote safety, dignity, and quality of life.
Register to view the webinar
Slide presentation

 

“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

 

“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.

 

My Parkinson’s Story
By the Veterans Health Administration, May 31, 2013
This series of 20 short videos (3-10 minutes) tell the personal side of having Parkinson’s disease by interviewing a several people with Parkinson’s and their caregivers on topics such as early PD, pain, medications, DBS, hospitalization, dyskinesia, speech & swallowing, visual disturbances, and more.

 

“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.

 

"You, Your Loved One and Parkinson's Disease"
By Partners in Parkinson's
This 37-minute video is a panel discussion of strategies to help caregivers and their loved ones navigate a new diagnosis.  Dave Iverson interviews Jim (who has PD) and his wife, Roberta, Jenn Haraja, daughter of a woman with PD, and social worker, Marguerite Manteau Rao.

 


Expert-Level Resources

“Treatment of Advanced Parkinson’s Disease,” by Sara Varanese, et.al.
Parkinson’s Disease, 2010
Patients at late stage Parkinson’s disease develop several motor and non-motor complications that should be managed by a balance between benefit and side effects of medications, physical, occupational and speech therapies, and nursing care.

 


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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