The Family Is Part of the PD Medical Team

It is not widely discussed in the Parkinson’s world, but the primary deliverer of medical care is the family, not the neurologist and the health care team.

Visit any Parkinson’s website, pick up any of the popular books about the disease, or attend any PD 101 conference and chances are you will hear something about the caregiver. However, the information is disproportionate compared with medical information about causes, symptoms, treatments, and great hopes for the future of PD. All too often, the available information about the family is focused on the partner avoiding burnout or despair over their role as primary caregiver. Rarely, if ever is there any mention in these Parkinson’s resources that the family provides nearly all the day-to-day care, thereby managing the bulk of the medical management of Parkinson’s.

Typically, treatment and follow-up for PD entails a neurologist’s orders transmitted to the patient. With worsening disease, the family becomes the primary mode of execution. Medications as well as ancillary services like speech and physical therapy are ordered as necessary but administration and execution of these orders is ultimately charged to the family member to monitor compliance. The family also serves as a primary clinical observer who provides valuable information to the paid health team. For more advanced cases of PD, a family member fills pill cases, reminds the patient to take the meds in a timely manner and sometimes supervises the patient’s self-care. They perform transfers from beds and chairs, lift patients who have fallen, and schedule all medical appointments. Family care for someone with PD can be more than a full time job with elements of nursing care, administration, courier service, custodial work and responsible adult.

Most of these services are learned via on the job training because there are few, if any, organized training programs. I find this disheartening because family is the most important component for highest quality of life for a person with PD and this is a prime area for meaningful intervention. Many organizations are raising money to cure Parkinson’s but there is not much focus on enhancing daily living by helping the family provide better day to day care.

I think this would be money well spent.

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Beating Parkinson's One Family at a Time