Social workers can help people with Parkinson’s and their families navigate the health care system, work through common disease transitions and connect to community resources. To learn more about a social worker’s role on the Parkinson’s care team, we spoke with Amy Chesire, LCSW-R, MSG, a licensed clinical social worker at the Parkinson’s Foundation Center of Excellence at the University of Rochester in Rochester, New York.
The Michael J. Fox Foundation (MJFF): What is a social worker?
Amy Chesire (AC): Social workers are health care professionals who work with people of all ages (children, young adults and older people) in different care settings (clinics or hospitals, for example). They have a variety of roles, including:
- Helping patients and families access community services (such as support groups), work though insurance and afford medications, figure out home care services, look at placement out of the home (if necessary), and understand and apply for social security or disability benefits. This is the “bread and butter” of social work that is critical to a person’s quality of life.
- Counseling patients individually or as a part of a couple or family. Social workers provide support to help people and their caregivers work through specific problems or situations.
- Educating patients and families about the disease and available resources. Some things, such as issues around money, religion or even sexuality, may be harder to talk to doctors about. Sometimes these are easier conversations to have with social workers.
MJFF: How can social workers help people with Parkinson’s?
AC: Social workers can help broadly across the course of Parkinson’s disease (PD), especially with some of the common transitions. When people are first diagnosed, there are a lot of questions — what now, what next, what can I do, what should or shouldn’t I do? We can help you think through the here and now and also a year and five years from now. Other common transitions may include starting treatment or giving up employment, especially for people with young-onset PD. Further along, we may discuss what happens when people don’t have as good of a response to medication or when other symptoms (such as cognitive or balance problems) put stress on the family. Parkinson’s also commonly brings depression and anxiety, particularly around transitions. Social workers can help people and families talk through these and other feelings. We do a lot of listening and provide emotional support and counseling.
We are patient coaches and advocates and bridges to the rest of the care team. We can help you figure out how to explain things to your doctors (and others) and, if necessary, speak to your care team for you, especially about life goals. For example, I advocated for a deep brain stimulation (DBS) evaluation in younger man with PD as he felt strongly this was the best treatment option to achieve his goal of remaining in the workforce.
MJFF: What other resources can social workers help patients and families access?
AC: For people who are newly diagnosed, the initial days and months may be mostly about education and absorbing what Parkinson’s means and what role it will play in their life. (We also may connect to appropriate Parkinson’s-specific resources within the community.) As disease moves forward, there might be more interest in a support group (recognizing they’re not for everyone), planning for the future or end of life, and focus on the caregiver, if they need relief or help figuring out in- or out-of-home care services (such as a home health aide, social day program or temporary respite) and costs. We work to match each individual patient and family with community resources that are going to be successful for them.
As much as possible, we also try to bring end-of-life planning into regular visits and break it down into manageable pieces so it’s not overwhelming and people have time to discuss it with loved ones and family. We begin conversations about the many things we can control, such as identifying a health care power of attorney and completing a living will. We also may recommend getting in touch with an elder law attorney (a lawyer who specializes in helping families manage their assets and put financial plans in place to cover potential future in-home, nursing or other care). We encourage you to think ahead because we know the best decisions are not made in a crisis. We want to stay with our patients and families where they are at any given point in advance care planning and try to not get too far ahead, but not fall behind either.
MJFF: Why is it important for social workers to be part of a Parkinson’s care team?
AC: Social workers are “the glue” of the team. We keep the multidisciplinary team (one that combines several different experts) working and talking together. Social workers advocate for the patient and help them navigate life across the Parkinson’s journey. We’re also the point person to help you navigate the care team and work best with other care team members. Parkinson’s can be complicated and sometimes also isolating for patients and their family members. New problems and even frustrations with care can come up. Social workers are a consistent, accessible point of contact. We may not always know the answer, but we can point you in the right direction.
MJFF: When should a person add a social worker to their care team?
AC: Sooner rather than later. From the beginning, if possible. You may not need a lot of ongoing contact early on, but you can know that person is in that role for you. You know how to reach them and you know they are accessible. There is no downside.
MJFF: How do you find a social worker?
AC: In some academic medical centers, such as the University of Rochester, social workers are built into the neurology or movement disorders clinic. If you don’t have a social worker as part of your neurology care, ask your doctor or people with Parkinson’s for a recommendation. You also can search an online database, such as helpPRO.com, for a social worker in your area.
MJFF: What qualities should people look for in a social worker?
AC: Of course, you’ll want to make sure they have a fair amount of education and experience behind them. Social work doesn’t offer training specifically in Parkinson’s, but some of us develop expertise by working with PD patients and families over time. You may want to ask whether a social worker has experience with Parkinson’s, neurological disease or, if applicable, older people.
A lot of it comes down to the relationship piece — you need to be able to relate to and feel comfortable with a social worker. If possible, have an extended phone conversation or, even better, talk with them in person to see if they are a good fit.