CAREGIVING FOR PERSONS WITH PARKINSON’S DISEASE 

Category: Newsworthy Notes

Assistant Professor Northern Illinois University School of Nursing and Health Studies Informal caregivers such as spouses, partners, adult children and other family members and friends play a crucial role in caring for persons with Parkinson’s disease. The caregiving journey is a unique one. At some point you may see yourself as a care partner, care taker or caregiver. Regardless of how you see your role, it is vital to have a network of support that can include friends, family, support groups, healthcare providers and the community.

This community includes the Parkinson’s Resource Organization (PRO) that is deeply committed to helping families maintain those important connections.  Specifically, Jo Rosen, the Founder and President of PRO, has been instrumental in emphasizing the needs of caregivers. It is so important to remember that caregiving can be challenging due to the unpredictable ways Parkinson’s symptoms progress and the uncertain course of the disease. Caregivers can be vulnerable to illness and may be at risk for strain but not realize it due to their focus on the needs of the person with Parkinson’s disease. If you are a caregiver, it is vital to have your own support network which should include the valuable resources that PRO can provide. Spanning your connections in different directions builds a lifeline that promotes health and well-being. A simple phone call to a friend can lead to other connections and feelings of knowing there is someone out there who hears your voice.

Over the years, I have conducted studies focusing on caregivers of persons with Parkinson’s disease and have found that those who have reached out to others for support and carved out a little bit of time for their own needs, were better able to meet caregiving responsibilities.  I remember a caregiver once saying, “If you have a pitcher of water and you pour water for everybody in your family over and over and you don’t save any for yourself, you will run dry. You will have nothing left to give. You have to nourish yourself and take time for yourself so you can give to others.” Our research efforts have been very important. A few years ago, Jo Rosen and PRO helped to spread the word about one of my research studies which resulted in better ways to measure strain risk in caregivers of persons with Parkinson’s disease. A measure such as this helps the medical community assess caregiver well-being at any point in time during the caregiving journey.

Currently I am conducting another research study specific to caregivers of persons with Parkinson’s disease. It is sponsored by Northern Illinois University and the American Nurses Foundation.  Jo Rosen and PRO are again supporting my efforts to spread the word to the Parkinson’s community. This study consists of a 20 minute online survey which has questions about your caregiving experiences related to your health and well-being, and some demographic information. All responses are confidential and names are not identified. In order to participate in the study, caregivers need to be 18 years of age or older and currently living in the same household as the person with Parkinson’s disease. The research study survey can be accessed online at tinyurl.com/2015caregivers.

Our current research efforts will continue to help health care providers better assess the needs of caregivers of persons with Parkinson’s disease. If you are a caregiver, please consider participating and please share this information with others who may be interested!  If you would like to learn more about this research, send an email to Dr. Maryann Abendroth at mabendroth@niu.edu or call at 815-753-0812.

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Updated: August 16, 2017