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Partners in Parkinson’s: The Importance of the Caregiver

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Caregivers: The Heroes Among us

It will come as no surprise that most couples and adult children will at some point in their lives have to deal with a major illness. In the case of a chronic, progressive condition like Parkinson’s Disease, the need for caregiving is ever-present and extremely complex.

6 Tips for Parkinson’s Caregivers

  • Become a Parkinson’s Disease expert—familiarize yourself with the disease. Though Parkinson’s disease progresses differently for everyone, educating yourself and your loved one on future symptoms to look out for will help in the long run.
  • Join a support group— together, or separately. Support groups exist for people with Parkinson’s as well as caregivers, and can be a great way to share feelings and experiences and well as gather advice. Ask your loved one's doctor or call a local hospital for help finding one in your area.

    Check out online and virtual support groups. Web sites and Facebook have many online support groups for many patients and caregivers. They can be informative, inspiring, and often alleviate the feeling of isolation that can make life difficult when caring for someone with Parkinson's disease.

  • Add experts to your team— If possible, consider encouraging your loved one to see an allied care professional, such as a speech therapist or physical therapist, early in the disease. A movement disorder specialist, a neurologist with additional training in Parkinson’s disease and other movement disorders, can also help you and your loved one build the best treatment plan early on.
  • Be organized— Keep a calendar dedicated to your loved one, with doctor appointments, medication start dates and notes on changing symptoms. If you are providing in-home care to your loved one, consider automating as many bills or prescriptions for him or her as possible.
  • Take care of yourself— You may not realize that you have put yourself last, if a loved one has ongoing needs, it’s hard to stop and put yourself first. Take time to exercise or go to a movie with a friend, and particularly if you feel isolated, anxious or depressed it may be time to discuss your situation with a professional.
  • Be watchful of your loved one's mental health—As a caregiver, you likely spend the most time with your loved one and are very in-tune with his or her moods. If you notice any signs of depression or anxiety, talk with his or her doctor.

Check out these helpful resources for caregivers

The job of dealing with Parkinson’s is challenging because the disease never stands still. The caregiver is the most important role on the patient’s team. Caregiving improves quality of life, prevents nursing home placement, and offers hope. It is important as a caregiver to invite other people in, plan for the future, and acknowledge that you can’t do it all yourselves.

Research is ongoing in caregiving

Research shows the important role of caregiving in improving the sick person’s quality of life. Penn’s Parkinson’s Disease and Movement Disorders Center participates in the National Parkinson’s Foundation Parkinson’s Outcome Project (2009-ongoing), an observational study at Centers of Excellence around the country.

Currently there are over 8,000 people with Parkinson’s Disease. Preliminary results of this study show that approximately 10% of men and 20% of women with Parkinson’s do not have a regular care partner accompany them to their clinical visits.

Based on these findings, we are conducting a follow-up study to understand the causes of sex difference in caregivers and to help develop programs to better support caregiving. The care partner is often the most important member of the Parkinson’s Disease team.

The caregiver is the investigative reporter on symptoms of the patient where to focus a doctor visit, problems with medications, falls, or changes in behavior and memory. The caregiver also is the cheerleader, offering encouragement for exercise, mood and social activities.

When your loved one is diagnosed with Parkinson's disease, you're likely full of questions and some apprehension.

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