Inequalities in mental healthcare and lack of social support are persistent challenges for people with Parkinson disease (PD), but they can be combatted with holistic wellness interventions targeted to patients, their caregivers and their communities.
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That’s the central takeaway from a recent “Point of View” article in Parkinsonism and Related Disorders (2021;93:97-102) by an international group of Parkinson’s disease clinicians and researchers. They reviewed the mental healthcare and social support challenges for people with PD and then developed recommendations for addressing them based on 90 interviews of people with PD and other PD stakeholders and thought leaders.
“Too many people with PD suffer from social disconnectedness, loneliness, economic hardship and barriers to accessing care,” says neurologist Hubert H. Fernandez, MD, Director of the Center for Neurological Restoration at Cleveland Clinic and a co-author of the paper. “The degree to which mental healthcare needs of people living with PD are unmet has been revealed and exacerbated by the COVID-19 pandemic. This prompted us to propose a framework to systematically and proactively address the mental health needs of this at-risk population.”
Barriers to mental healthcare in PD
The paper begins by reviewing the following major barriers to improving mental healthcare for people with PD:
- Under-recognition of PD and lack of awareness of non-motor and mental health issues. Individuals in communities with limited access to specialist care — including many rural communities — often experience delayed diagnosis and under-recognition of PD. Additionally, non-motor symptoms frequently go unrecognized and untreated, resulting in reduced quality of life, and many people with PD are unaware that apathy, depression and anxiety often are associated with PD.
- Disparities based on race, gender, age, geography, sexual orientation and disability. Clinical trials of PD have disproportionately involved aged white male participants, leading to poorer characterization of PD in other populations and the likelihood of delayed diagnosis and under-recognition in these groups. Moreover, centers for multidisciplinary specialty care are disproportionately located in or near large cities and are generally more accessible to affluent, married and urban-dwelling white people. Additionally, as patients become more disabled from PD, they have greater difficulty traveling to access care.
- Scarce resources. Neurologists with expertise in PD are in short supply worldwide, as are mental health clinicians with specialty expertise in the care of people living with PD. Unless specifically addressed, these shortages are expected to grow with increased life expectancy worldwide.
- Social stigma associated with both PD and mental health issues can deter many people with PD from seeking mental healthcare, particularly in communities of color.
- Pandemic-related issues. COVID-19 has made it more difficult for many people with PD to access mental healthcare while at the same time exacerbating stressors that contribute to mental health issues.
- Caregiver burnout. Those who serve as caregivers of people with PD are susceptible to burnout, and this risk has been intensified by the social isolation and stressors of the pandemic.
- Shortcomings in the healthcare delivery model. Fee-for-service care models discourage prioritization of mental health issues in PD care, which tends to make mental healthcare reactionary rather than preventive. The framework in which most patients are seen for PD — typically every six months for 15 to 30 minutes — does not permit mental health issues to be adequately elicited and addressed until they become a crisis.
Wellness-based strategies for overcoming the barriers
As a solution to these barriers, the authors propose wellness, which they define as “the active pursuit or activities, choices and lifestyles that lead to a state of holistic health.” Dr. Fernandez emphasizes that this is in contrast to “misconceptions propagated by the commercialization of the so-called wellness industry,” involving the purchase of expensive products, spa memberships and the like.
The authors note that while some proposals for holistic health in people with PD have focused on motor issues, the foundation of their model is education and empowerment, with the ultimate goal of wellness resulting from improved self-efficacy for people with PD and their caregivers. “Self-efficacy has been demonstrated to improve quality of life in people with PD,” Dr. Fernandez explains. “The goal of our model is to support patients in their ability to participate in activities they view as meaningful and to support them in self-management.”
To realize this goal, the paper calls for the following strategies and changes:
- Increased education and disease awareness. The authors call for creation and wide distribution of patient- and provider- facing videos and other educational resources on mental health and wellness issues in PD.
- Research into, and promotion of, teachable lifestyle choices. Tools are needed to empower patients by giving them a sense of agency and teaching them resilience, perseverance and how to promote positive attitudes. These can include counseling and education on modifiable lifestyle choices addressing sleep, diet, diverse exercise strategies, mind-body approaches to health and strategies to enhance social connections.
- Realignment of the healthcare team model. The authors propose consideration of a number of novel strategies, such as a social support system for patients centered on a friend or fellow patient who serves as a “mental health check-in buddy”; peer-to-peer mentoring with fellow patients; use of health coaches; and matching of mental health providers and allied therapists to serve greater numbers of patients with less-severe needs in order to reduce wait times.
- Proactive outreach to all willing providers. To meet the growing mental healthcare needs of people with PD, collaboration should be sought from all willing providers who can be engaged in mental health screening of these individuals, including geriatricians, primary care physicians, nurses, social workers and patients’ caregivers.
- “Social prescribing.” This is an intervention whereby a provider refers a patient to social support resources in their community with the goal of improving their health and well-being.
- Promotion of self-agency. This, the ultimate goal of any wellness strategy, involves making patients feel capable of impacting their health through lifestyle choices. It must be advanced by all clinicians caring for people with PD and integrated with additional recommendations above.
“One silver lining of the pandemic has been its unmasking of gaps in mental healthcare for many groups of patients with PD,” Dr. Fernandez concludes. “Clinicians caring for these patients have a chance to seize this opportunity to reshape care models to promote a more holistic approach to our patients’ health.”