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Tips for Parkinson Disease Caregivers

October 20, 2017

An article from Parkinson’s News Today outlines 10 quick tips for caregivers to help them effectively care for patients with Parkinson disease while also taking care of themselves.

The list includes practical suggestions for ways caregivers can try to make their lives easier as they care for patients with a challenging and often stressful disease. Their advice is based on information from the Michael J Fox Foundation and Partners in Parkinson’s and should not be used as a substitute for professional medical advice (published online October 19, 2017).  

1. Be organized.

Devise an organizational strategy to keep track of the patient’s medical notes, insurance, records, appointments, phone numbers of providers, etc, so they are easily accessible and transportable.

2. Remember to care for yourself.

You can’t adequately care for another person if you are neglecting your own physical and emotional needs. Schedule time for yourself to unwind and relax. Ask for help from others if you need a break. Regularly treat yourself to activities/hobbies that you enjoy.

3. Be aware of the patient’s medical insurance.

It is helpful to educate yourself on the patient’s medical insurance policy—what is and is not covered and how to make sure available reimbursements are taken advantage of. This is especially important for family caregivers to know.

4. Join a support group.

Becoming part of an active support group in your area may be able to provide you with emotional and practical support, allowing you to share your experiences and gain advice from others going through the same challenges.

5. Educate yourself on Parkinson disease.

Studies and advancements make medicine an ever-changing field, so keep up-to-date on the latest news and recommendations on the disease. Talking to the patient’s doctors is also a great way to stay informed on news and guidance specifically applicable to your patient.

6. Expect patient moods swings.

Parkinson disease is often accompanied by mood swings and depression, which my strain your relationship. Open and honest communication is critical in order to maintain a healthy and productive relationship.

7. Watch for changing symptoms.

As a caregiver, you will likely be the first person to observe any changes in or worsening of behaviors or symptoms. Report changes to the patient’s physician as soon as possible.

8. Encourage independence.

Your job is to care for your patient, but try to help them hold on to their independence for as long as possible. Ask them if they need help and respect their answer.

9. Know your rights.

Make sure you know and understand caregivers’ rights and disability rights. As a family member caregiver, you may be entitled to disability and/or carer benefits.

10. Don’t procrastinate advance care discussions.

Discussing future care and end-of-life care is difficult to approach, but it is important to understand what your patient may or may not want in the future. Discuss wills, treatment options, and end-of-life preferences.


—adapted by Amanda Del Signore



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