The Challenges of Parkinson's Care: Tips For The Primary Caregiver


The Challenges of Parkinson’s Care: Tips For The Primary Caregiver

Taking care of someone with a chronic, debilitating disease is difficult. Caregiving is a 24/7 job and, as the disease progresses, it becomes more demanding.

The demands of caring for someone with a disease such as Parkinson’s are constantly changing. Meeting these challenges requires attention and organization.

While we recognize that many healthcare professionals won’t find themselves in the role of primary caregiver, we wanted to share this resource so that you have the knowledge and tools necessary to help those you interact with who might be filling that role.

The Michael J Fox Foundation and the Partners in Parkinson’s have both come up with tips for the primary caregiver of patients with Parkinson’s disease. Below is an outline and discussion of those guides.

It is important to stay in touch with yourself by pursuing your own interests and keeping active. Asking family and friends for help or finding professional in-home care, can give you time to reenergize and refresh.

As a caregiver, keeping track of all the details associated with medical care can be overwhelming. Here are some tips to help:


  • Stay organized with a calendar that you can take on doctor visits. Note doctor and therapy appointments, start and stop dates of medicines, and any side effects you notice.
  • Keep a list of all doctors' phone numbers and addresses in case of an emergency.
  • Keep a separate and updated list of all prescription medications, their dosages, instructions, and prescribing provider. Note allergies or medication intolerances.
  • Familiarize yourself with the terms of your loved one's medical insurance. Know what services, including prescription medication coverage and therapy session benefits, are included. Talk with your physician about the long-term needs of your loved one, and make sure his or her current medical plan will meet those needs. Engage the services of a social worker if you need help navigating these issues.
  • Know your rights in terms of disability coverage, family leave, and elder rights.
  • Before appointments, prepare a list of your questions for the doctor. Your list may include questions on:
    • Long-term prognosis
    • Symptoms you need to be aware of -- both motor and non-motor
    • How existing medical conditions may affect the health of your loved one
    • Medicinal protocol
    • Non-medical treatments
    • Clinical studies that need you or your loved one with Parkinson's


    Discuss important plans and decisions for the future. Talk about wills, advanced directives, and other life issues. Talk about the future. This is a difficult topic to broach, but it’s important that you understand what your loved one wants further down the line.

    Discuss these important decisions early in the disease process when the patient can make a contribution with clarity.

    Look after yourself. In order to be able to look after your loved one, you need to be physically and emotionally well. Take time off — it’s important to unwind and de-stress. Ask other family members and friends to help out or look into hiring professional care. Spend some time doing something you enjoy and take your mind off things for a few hours.

    Join a support group. Find out if there are any active support groups in your local area. If not, then look online for a support group for caregivers of Parkinson’s disease patients. This will give you both practical and emotional support and you will be able to ask advice and share your experience with others who are going through the same thing.

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    If you wish to read more about the topic, please click the following links to learn more:

    Tips For Parkinson's Disease Caregivers

    Michael J. Fox Foundation: Caregiver Guidelines

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