MDS Addresses Wellness in Parkinson's Disease with New Task Force
We are excited to kick off the inaugural meeting of the Task Force on Parkinson’s Wellness and Holistic Health. I had the honor of speaking on wellness during my talk on “Social Prescribing: Mental and Physical Health in PD” at the PAS Congress.
Our hope is to create a framework for systematically addressing wellness in Parkinson's disease (PD). Wellness is “ ‘the active pursuit of activities, choices and lifestyles that lead to a state of holistic health.” This model is a multidimensional approach to health, encompassing lifestyle, mental and spiritual well-being, the vitals of general health (vision, hearing, cognitive, sexual, dental, bone and gut health), family, environment, social settings, sleep and physical health, and the individual’s environment. The World Health Organization defines health as “a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity,” which aligns directly with this model.
In the traditional medical paradigm, the emphasis is on treatment and finding a cure for symptoms or disease. There is a belief that something is wrong with the individual and the physician’s responsibility is to fix, remove or cure. This paradigm, however, makes the patient the passive recipient of care and the health care provider as the person responsible for delivering that care and ensuring its effectiveness. This intermittent interaction with a health care system is more compartmentalized and separate from the patient’s day to day life, which has its limitations.
In contrast, the wellness model places the patient at the center of the care team. What is important to the patient and what defines a meaningful quality of life for them is the goal of care. The patient is responsible for making choices in their daily life (with individualized recommendations from their healthcare team) that influence their health outcomes and hence has self-agency. This wellness pathway leads to a broader outcome of the patient thriving, not just feeling better or being cured of a particular symptom. Lifestyle choices and actions are integrated into daily life and are not just intermittent, thus the concept of seeking health becomes a continuous lifestyle pursuit.
Cultural and Diversity Considerations
Most healthcare disciplines are encouraged to provide culturally competent care as part of ethical practice. This means that individual cultural components are taken into consideration when making clinical recommendations, including aspects such as gender, race and ethnicity, language, culture (including family-specific culture), socioeconomic status, sexual orientation, religious/spiritual affiliation, and disabilities. Individual personality aspects and patient choice also play an important role and are key aspects of personalized medicine delivery. The wellness model approach also embraces this practice, emphasizing the individual’s environment and culture context as key components in treatment. It is also noted that competing demands and values may vary in importance over time for an individual, depending on changing life circumstances and their general health.
The “vitals” underpin wellness in PD. The aetiology is complex and comprised of physical, psychological and drug-related factors that affect day-to-day functioning in Parkinson’s. Addressing holistic health using a wellness-based model invites a culturally informed multidisciplinary approach, ranging from pharmacological and medical treatments to social, psychological, and lifestyle interventions. The desired outcome will represent not just a decrease in overall physical dysfunction, but an experience of thriving within self-efficacy and social connection.
We aim to proactively help this vulnerable population during the ongoing COVID-19 pandemic and beyond. Specifically, we will focus on gaps related to disparities in care among minority communities of both high- and low-income nations, to outdated health care system infrastructure, to lack of use of the multidisciplinary team and wellness approaches.
This is a novel initiative within Movement Disorders, an area now regarded as a key unmet need by many policy-making bodies globally. It also focuses on inclusivity and diversity and will bring together many professionals with diverse interests and promote working in a themed harmony rather than in a silo.
The current 2022 timeframe has highlighted major issues underpinning chronic issues of social disconnection, loneliness, economic hardship and barriers to accessing care across PD patients, especially in people of black and other minority ethnic populations and other populations worldwide. For many people with Parkinson's and their caregivers, this has spiraled into a mental health crisis and diminished quality of life also underpinned by unmet care for the enablers of wellness, as articulated above. Addressing this in a focused manner by a diverse panel of experts (including global and allied health care representation) and providing evidence base where possible to ensure there is awareness among treating physicians and health care professionals across the world is a key unmet need.
Our call for applications was met with over 200 passionate applicants, from which we chose 20. We are so excited to work with our task force members on this really important topic. We look forward to presenting our offerings to the membership in the next few years and hopefully helping people with Parkinson's to live better.
Learn more about the new Task Force on Wellness:
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