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The Expert Care Experience: The role of a social worker in caring for someone with Parkinson’s disease

The Expert Care Experience: Social Workers

This blog is the first in a series detailing the roles of each member of a comprehensive care team. Read the second post on occupational therapy hereLearn more about the healthcare professionals that are part of a comprehensive care team and how you can put your care team together today.

More than a movement disorder

As many of my patients describe, Parkinson’s disease (PD) does not simply impact them in a physical or medical way. Being diagnosed with Parkinson’s can feel like a label; living with the disease for many years has the power to alter one’s sense of self, roles in society and in the household, lifestyle, and plans for the future.

Social workers play an integral role in the multidisciplinary approach to PD and work collaboratively with the neurologist and rest of the care team to assist our patients in living as well as possible with PD. Social workers hone in on the psychological, emotional and logistical coping challenges. As a result, we support people with PD and their families in verbalizing and normalizing these experiences and help them plan how to move forward with this complex, chronic disorder.

Support and empowerment

I was initially drawn to the field of social work because this profession uniquely fights for social justice, values diversity, and recognizes the worth and dignity of a person. In the world of PD, this can mean helping patients and care partners distinguish what may not be in their control, such as balance issues or having to stop driving, and what is in their control, like establishing a regular exercise routine or choosing to try public transportation.

As a social worker, I try to view each person through the lens of their strengths and potential, and then work to empower my patients by helping them appreciate these qualities in themselves. Despite over 1 million Americans living with the diagnosis, PD can feel isolating. When this happens, social workers are there for supportive counseling, empathy and validation.

A family disease

Living with PD frequently impacts more than just the individual with the diagnosis. People with PD may find themselves needing to give up roles, which usually means that someone else must pick up new responsibilities. This was the case with Mr. Page. His wife has Parkinson’s, and he approached me after her recent appointment.

He told me he was feeling “exhausted and overwhelmed.” He said that he loves his wife, who has had PD for 11 years, but he feels like he has to watch her all of the time out of fear that she will fall or need him. He has also taken on the driving, bill paying, most of the cooking, and reminding his wife of her medications. I helped Mr. Page and his wife discuss how the changes in roles and relationship must be a difficult transition for both of them. I explained the importance of maintaining open and honest communication around care needs, sharing household tasks when possible, and Mr. Page taking time to focus on his own self-care. I also told them about options for respite care (time away from caregiving) and help around the home, including calling on neighbors, hiring in-home care and using adult day care. After a time, the couple called me to say they had hired a part-time caregiver to help Mrs. Page, as well as help with meal preparation and transportation. They thanked me for bringing a focus to their needs as a couple and supporting them through a plan that we problem-solved together.

Finding meaning in PD

Social work embodies the idea of “meeting people where they are.” A neurologist may recommend that a person with PD participate in speech therapy, but if that person has anxiety that prevents him from leaving the house to go grocery shopping, let alone to a speech therapist, it is necessary to first explore that anxiety, including the history, triggers, fears, and treatment options. A social worker can play that critical role.

My PD patients, care partners, and support group members often describe how living with PD revealed to them their own resilience, what they can be grateful for, and recognition of their own capacity for growth. As with other curve balls that are thrown at us, a PD diagnosis is one that can be learned from. Social workers offer a safe space for discussion and reflection around finding meaning in the unplanned challenge of adaptation to PD. PD is complicated, often frustrating, and impacts many facets of life. Still, every day I witness people affected by PD move forward with grace, tenacity and candor, and I take pride in my profession for focusing on the whole person and supporting them through this experience.

Jessica Shurer, LCSW, is the Clinical Social Worker & Center Coordinator at the Movement Disorders Center at UNC Chapel Hill, a NPF Center of Excellence.