By: Diane Breslow, MSW, LCSW
Northwestern University's Parkinson's Disease and Movement Disorders Center
People who live with a chronic, progressive illness like Parkinson’s disease (PD) face many different and changing challenges over a long period of time. Social workers play a key role in helping persons with PD and their care partners and families to deal with those challenges, and to navigate the health care system and the many feelings and issues that result from living with PD.
For example, social workers can help patients and families
- to better understand PD and to discuss reactions to receiving the diagnosis
- to talk about when and how to share the diagnosis with family and friends, or at the workplace
- to cope with feelings such as sadness, depression, anger, frustration, and worries
- to plan for the future, including understanding advance directives, insurance issues, home care and housing options
- to express and deal with physical and emotional losses
- to adapt to changes in the family, e.g. the role of care partner
- to build communication with family members about the impact of living with Parkinson’s
- to deal with different kinds of reactions and misinformation of family, friends, and general public
- to learn about and access resources, community services, and support groups.
Social workers are trained in the biopsychosocial model of assessment and care, i.e. the theory that individuals and families are a composite of complex physical (biological), emotional (psychological) and socio-cultural and family aspects, all of which combine to play a role in one’s behavior and relationships. Because problems impact people on any and all of the 3 levels, social workers and other allied healthcare professions intervene at all the levels. The goal is to offer patients and families a comprehensive, holistic approach to care.
Ideally, social workers can provide the best care in an ongoing relationship with clients in which trust can be built over time. Regular visits afford the social worker the opportunity to understand the client’s perspective, strengths and unique challenges--and to work with clients to develop a mutually agreed-upon treatment plan. Sometimes people talk with a social worker only once--for a specific issue, for information about a service, or at a point of transition or crisis. Some persons with Parkinson’s and their families also meet with social workers at periodic intervals, as specific needs emerge during the course of the disease. Social work intervention is not a “one size fits all” approach. Social workers aim to understand each person or family’s unique situation and goals. Therefore, every case is approached individually.
At the Northwestern University Parkinson’s Disease and Movement Disorders NPF Center of Excellence, the social worker’s clinical roles include:
- Individual and family counseling, both short- and long-term
- Facilitating monthly PD Support Group
- Facilitating monthly PD Caregiver Support Group
- Providing resource and educational information to patients and families
- Linking patients and families with appropriate community services
- Care management or case coordination with patient’s other healthcare providers
- Peer-to-peer (one-to-one) pairings of patients with other patients, or caregivers with other caregivers
- Telephone consultation to patients and families
- Telephone Information and Referral to outside callers
- Advocate for comprehensive care approach to PD treatment
The social worker’s roles on a programmatic level include:
- Planning annual patient-family educational symposia
- Coordinating and co-teaching PD 101
- Training and consulting to PD support group leaders in the community
- Developing new programs aimed at enhancing patients’ qualify of life, e.g. creative arts classes, exercise classes, dance class, caregiver training
- Coordinating and co-writing PD Fact Sheets and new-patient materials
- Outreach and PD education to community agencies such as home health, Department on Aging, assisted living and long-term care facilities, and organizations in underserved communities.
Regardless of the role I play or the intervention I make, I feel immensely privileged to be a part of our patients and families’ lives, to learn and grow from witnessing their journeys, trials, and strengths. The work is richly rewarding – truly a blessing.
Diane Breslow, MSW, LCSW, is the coordinator for the NPF Center of Excellence at Northwestern University's Parkinson's Disease and Movement Disorders Center. A specialist in Parkinson's disease and movement disorders, Diane understands how illness and disability impact not only the patient, but also the entire family system. Having counseled Parkinson's disease patient sand their families in every type of setting and level of care, Diane has a unique knowledge of, and perspective on, all aspects of PD. As one caregiver-spouse noted, “Diane knows about our concerns and our cares, and makes it comfortable for us to talk about our feelings.”