Doctors must address Parkinson’s patients’ hidden burden of stigma, report says

Even one of the best treatment approaches for Parkinson’s disease are inadequate in the event that they don’t address patients’ feelings of social rejection, isolation, loneliness and other psychosocial effects of stigma, based on a report from experts specializing in Parkinson’s and other movement disorders.

A brand new report co-authored by UCLA Health neurologist and researcher Dr. Indu Subramanian says many misconceptions and biases cause patients with Parkinson’s to be stereotyped, devalued and shunned, which, together with a progressive lack of functionality and independence, often result in “self-stigma,” with declining self-esteem and increasing anxiety and depression. The report appears in Parkinsonism & Related Disorders.

Although the motor symptoms and limitations of Parkinson’s disease should be a significant focus of diagnosis and treatment, if we goal only neurological dysfunction without also pursuing causes and effects of mood disturbance, we can be doing a significant disservice to our patients. Stigma just isn’t merely a minor inconvenience related to this disease. It significantly contributes to quality of life.”

Dr. Indu Subramanian, UCLA Health neurologist and researcher

Parkinson’s disease, a progressive brain disorder, causes wide-ranging symptoms; some should not visible but others eventually cannot be concealed. These may include tremor, involuntary movements, difficulty with balance, stooped posture, drooling, and “facial masking” – a lack of muscle control that ends in an inability to properly show facial expressions.

“Any chronic illness may end up in changes in physical appearance and bodily function, distorting not only an individual’s self-concept, but in addition how the person is perceived by others. People often make judgments about those with Parkinson’s disease, particularly in the event that they have visible symptoms like stooped posture, gait abnormalities, facial masking and tremor. These perceptions of ‘disability’ perpetuate negative stereotypes and subsequent social devaluation,” said Subramanian, who has written extensively concerning the disease, with recent articles on meeting the unique needs of female patients and making dietary and other practical treatment decisions to optimize patient care.

Subramanian and colleagues say stigma is thought to negatively impact quality of life for patients with Parkinson’s, but there was little research dedicated to the topic. The brand new article reviews findings from previous studies on stigma, social isolation, stress, shame and other related aspects before specializing in how doctors, medical teams, patients and supporters can work together to administer the results of stigma.

Awareness is a start, and health care professionals have to develop a tool to routinely assess stigma and discover its effects on patients. “And if not physician-initiated, patients must feel empowered enough to bring these issues to the eye of their medical team,” the authors said.

Subramanian and colleagues emphasized the necessity for:

• Patient empowerment through individual counseling and focus, “with interventions directed at knowledge, self-concept, self-esteem, and developing coping skills.”
• Support groups to enhance self-esteem and coping skills and lessen isolation.
• Education, including “providing most people with accurate information concerning the illness, the lived experience and countering false assumptions upon which stigma relies.”
• Formal interventions using therapies that discover and address the various aspects that may end up from stigma.

“Parkinson’s disease ends in an illness burden that features each visible and invisible symptoms. The resulting stigma can result in social anxiety and isolation, reluctance to hunt medical care, loneliness, depression and anxiety,” the authors write. “Having a greater understanding of the role of stigma and its impact may allow clinicians to supply proactive care and greater empathy for those living with the challenges of this disease.”