{"id":53702,"date":"2023-05-10T16:56:15","date_gmt":"2023-05-10T15:56:15","guid":{"rendered":"https:\/\/touchneurology.com\/?p=53702"},"modified":"2023-06-02T15:33:59","modified_gmt":"2023-06-02T14:33:59","slug":"wellness-in-parkinsons-disease-a-framework-for-management-using-a-holistic-culturally-sensitive-approach","status":"publish","type":"post","link":"https:\/\/touchneurology.com\/parkinsons-disease\/journal-articles\/wellness-in-parkinsons-disease-a-framework-for-management-using-a-holistic-culturally-sensitive-approach\/","title":{"rendered":"Wellness in Parkinson\u2019s Disease: A Framework for Management Using a Holistic Culturally Sensitive Approach"},"content":{"rendered":"
In modern medicine,\u00a0<\/span>t<\/span>he concept of\u00a0<\/span>wellness<\/span>\u00a0is accompanied by many misconceptions.\u00a0<\/span>Adopting wellness as a treatment\u00a0<\/span>approach<\/span>\u00a0has been well defined and\u00a0<\/span>implemented in cardiovascular disease, diabetes and some types of cancer management<\/span>\u00a0but has not yet been widely applied to neurologic diseases.1\u20135<\/sup><\/span>\u00a0The commercialization of the\u00a0<\/span>wellness industry<\/span>\u00a0has led to the misconception of wellness as expensive and only accessible to a niche population who can afford gym memberships, massages, personal chefs and spa retreats.6<\/sup><\/span>\u00a0Hence, it is important to\u00a0define<\/span>\u00a0wellness\u00a0clearly<\/span>.\u00a0W<\/span>ellness includes both preventative and holistic features and can best be defined as\u00a0\u201c<\/span>the active pursuit of activities, choices and lifestyles that lead to a state of holistic health<\/span>\u201d<\/span><\/span>.7<\/sup><\/span>\u00a0Wellness is defined by the\u00a0World Health Organization<\/span>\u00a0(WHO<\/span>) as\u00a0\u201c<\/span>the optimal state of health for individual and groups\u201d<\/span>.8<\/sup><\/span>\u00a0It\u00a0<\/span>represents a strengths-based approach\u00a0to health<\/span>,<\/span>\u00a0which focuses<\/span>\u00a0on\u00a0a person’s\u00a0<\/span>positive attributes,<\/span>\u00a0a\u00a0<\/span>contrast to the traditional medical paradigm,<\/span>\u00a0which focuses on symptom mitigation.7<\/sup><\/span><\/p>\n The WHO defined health as\u00a0\u201c<\/span>a state of complete physical, mental, and social\u00a0well-being<\/span>\u00a0and not merely the absence of disease or infirmity\u201d<\/span>.9<\/sup><\/span>\u00a0Wellness includes being engaged in attitudes that enhance\u00a0the\u00a0<\/span>quality of life and maximize personal potential; hence, the wellness model fits well with this broader WHO definition of health. The International Classification of Functioning, Disability, and Health<\/span>\u00a0was established to provide a comprehensive system for conceptualizing health in a holistic manner by considering the interplay between\u00a0the\u00a0<\/span>psychological, biological and social components of<\/span>\u00a0one\u2019s ability to function optimally.10<\/sup><\/span>\u00a0The\u00a0International Classification of Functioning, Disability and Health\u00a0<\/span>model encourages clinicians to both inquire about and consider the viewpoint of the individual patient regarding their health and wellness. Specific models of holistic health have been recently popularized,<\/span>\u00a0including the Veteran\u2019s Affairs Whole Health model.11<\/sup><\/span>\u00a0This model of wellness is a multidimensional patient-driven approach to health encompassing lifestyle, environment, social support<\/span>\u00a0and<\/span>\u00a0spiritual, mental, and physical wellbeing. For\u00a0people with\u00a0<\/span>Parkinson\u2019s disease\u00a0(PWP)<\/span><\/span><\/span><\/span>,\u00a0<\/span>the key components of wellness are a healthy diet, exercise, sleep, mind\u2013<\/span>body approaches and social connection<\/span>.12\u201315<\/sup><\/span>\u00a0Figure 1<\/span>\u00a0illustrates these<\/span>\u00a0key components of wellness,<\/span>\u00a0including<\/span>\u00a0the many referrals and collaborations that can enhance care for PWP.16<\/sup><\/span>\u00a0This\u00a0figure is<\/span>\u00a0an updated version of\u00a0the\u00a0<\/span>\u201c<\/span><\/span>The patient is the sun<\/span>\u201d<\/span>\u00a0figure by Bloem\u00a0et al<\/span>.17<\/sup><\/span>\u00a0We propose\u00a0\u201c<\/span>the active pursuit of more holistic health through individual lifestyle choices and not just the absence of disease\u201d<\/span>\u00a0framework as a revised approach to health provision for PWP.7<\/sup><\/span><\/p>\n Historically,\u00a0Parkinson\u2019s disease<\/span>\u00a0(<\/span>PD)<\/span>\u00a0was thought to\u00a0affect<\/span>\u00a0motor function,<\/span>\u00a0with studies and care largely focused on older Caucasian men.\u00a0However,\u00a0<\/span>i<\/span>t\u00a0has now<\/span>\u00a0been recognized that PD is a complex disorder with multifaceted presentations,<\/span>\u00a0including motor and non–<\/span>motor subtypes with a prodromal period (i.e.\u00a0<\/span>before patients meet current diagnostic criteria) of a decade or more.18,19<\/sup><\/span>\u00a0PD diagnoses are likely to increase dramatically over the next\u00a020<\/span>\u2013<\/span><\/span>30<\/span>\u00a0years,<\/span><\/span>\u00a0prompting some authors to suggest\u00a0that<\/span>\u00a0PD is an epidemic.20<\/sup><\/span>\u00a0Currently<\/span>, treatment is focused on symptomatic therapies, primarily for physical symptoms, using medications or devices that are tremendously beneficial in restoring motor function and allowing patients to function in daily life<\/span>.21<\/sup><\/span>\u00a0However, even with the best current therapies and wellness approaches, patients continue to\u00a0experience\u00a0<\/span>symptom<\/span>\u00a0progression and mounting disease burden over decades.\u00a0<\/span>It has been proposed that there should be an emphasis on early assessment to allow for effective psychosocial management from the point of diagnosis through to palliative care<\/span><\/span><\/span>.22\u201324<\/sup><\/span><\/span><\/p>\n While disease modification is still aspirational,<\/span>\u00a0there may even be a role for wellness in counselling patients at risk for developing PD as predicted by genetic\u00a0testing\u00a0<\/span>or in the prodromal phase of PD.25<\/sup><\/span>\u00a0There have been similar proposals\u00a0for<\/span>\u00a0other neurodegenerative diseases,<\/span>\u00a0such as Alzheimer\u2019s disease.26<\/sup><\/span>\u00a0Wellness–<\/span>focused counsell<\/span>ing that incorporates motor, non-motor and mental health offerings delivered in a personalized manner\u00a0that is\u00a0<\/span>based on a bespoke dashboard of symptoms related to\u00a0<\/span>the PWP<\/span>\u00a0as a whole\u00a0<\/span>has been proposed. This approach builds upon the\u00a0<\/span>‘<\/span>dashboard vitals of PD<\/span>‘,<\/span>\u00a0which<\/span>\u00a0include comorbidities\/polypharmacy\u00a0and<\/span>\u00a0dental, vision, bone and gut health, which<\/span>\u00a0go beyond just motor and non-motor issues in PD.27<\/sup><\/span><\/p>\n In the traditional medical paradigm, the patient is often a passive recipient of care,<\/span>\u00a0and healthcare interventions are sporadic and often in reaction to a symptom or complaint rather than proactive or preventative. This intermittent interaction with the healthcare system is compartmentalized and remains separate from the patient\u2019s day–<\/span>to–<\/span>day life. Patients often see their neurologist for only\u00a0one<\/span>\u00a015<\/span>\u2013<\/span>30<\/span>-minute<\/span>\u00a0appointment every\u00a06<\/span>\u00a0months<\/span>. In contrast, the wellness model places the patient at the centre<\/span>\u00a0of the care team,<\/span>\u00a0with goals defined\u00a0in accordance\u00a0with<\/span>\u00a0what<\/span>\u00a0they consider meaningful for their quality of life in their current social, economic and cultural context. The patient is responsible for making choices in their daily life (with individualized recommendations from their healthcare team) that influence their health outcomes, which cultivates self-agency (a feeling of control over actions and their consequences).\u00a0<\/span>This wellness pathway may\u00a0allow the\u00a0<\/span>patient\u00a0to\u00a0<\/span>thrive<\/span>,<\/span>\u00a0going beyond the traditional mitigation of individual symptoms and complaints. Lifestyle choices and actions are integrated into daily life and are not just intermittent; thus, seeking health becomes a continuous pursuit.<\/p>\n Cultural competence is defined as \u201cthe ability of providers and organizations to effectively deliver health care services that meet the social, cultural, and linguistic needs of patients\u201d<\/span>.28<\/sup><\/span>\u00a0A newer approach for practis<\/span>ing cultural humility,<\/span>\u00a0defined as \u201ca lifelong process of self-reflection and self-critique whereby the individual not only learns about another\u2019s culture, but one starts with an examination of her\/his own beliefs and cultural identities\u201d,<\/span><\/span>\u00a0has also been proposed.29<\/sup><\/span><\/p>\n Although\u00a0<\/span>most healthcare disciplines are encouraged to provide culturally competent care as part of ethical practice, this is often not well translated into<\/span>\u00a0clinical practice. When making clinical recommendations, it is important to consider\u00a0the\u00a0<\/span>individual\u00a0patient’s\u00a0<\/span>cultural components,<\/span>\u00a0including age, gender, race and ethnicity, language, culture (including family-specific culture), socioeconomic status, sexual orientation and preference, religious\/spiritual affiliation, and disabilities and stage of\u00a0the\u00a0<\/span>disease.30<\/sup><\/span>\u00a0Geography also plays a large part in the delivery of care;<\/span>\u00a0health services\u00a0may be<\/span>\u00a0impacted by\u00a0internet<\/span>\u00a0connections and limitations for travel once patients become less mobile.\u00a0Figure 2<\/span>\u00a0is a summary of\u00a0the\u00a0<\/span>contributors to culturally competent or enabled care. Personal preferences and patient choice are key aspects of personalized medicine delivery and an integral part of the recently proposed\u00a0<\/span>‘<\/span>circle of personalized medicine<\/span>‘<\/span>\u00a0and the previously proposed\u00a0<\/span>‘<\/span>personalized medicine in non-motor PD<\/span>‘<\/span>.30,31<\/sup><\/span><\/p>\n The wellness model approach emphasizes the individual\u2019s environment and cultural context as key components in treatment.\u00a0<\/span>It\u00a0has also been\u00a0<\/span>noted that an individual\u2019s competing demands and values may vary in importance over time due to changing life\u00a0<\/span>circumstances and stages of\u00a0the<\/span>\u00a0disease.32<\/sup><\/span>\u00a0<\/span>Indeed<\/span>,\u00a0on\u00a0<\/span>any one day or week,<\/span>\u00a0the patient may experience a range of symptoms that may\u00a0either\u00a0<\/span>prevent them\u00a0from participating\u00a0<\/span>or enable them to participate in these lifestyle choices. When addressing holistic health, culturally informed care can guide further assessment and significantly change treatment recommendations and adoptability. For example, the wellness model from the First Nation\u2019s Tribe perspective (Indigenous people of North America)\u00a0<\/span>includes the land, nature, the ancestors and other nations\u00a0as model components<\/span><\/span>.33<\/sup><\/span>\u00a0A traditional healer or leader in a faith community may be critical to healthcare delivery.\u00a0Other\u00a0<\/span>a<\/span>rea<\/span>s in which cultural perspectives are particularly important to acknowledge include attitudes\u00a0toward<\/span><\/span>\u00a0age<\/span>ing, caregiving, dying and mental health,<\/span>\u00a0which can often be heavily stigmatized<\/span>.34\u201337<\/sup><\/span>\u00a0A vital component\u00a0in\u00a0<\/span>facilitating collaboration and trust between physicians and their patients is\u00a0for physicians to\u00a0<\/span>actively listen to patients about what they understand about their disease and what caused it. Some people may believe that the\u00a0person’s\u00a0<\/span>past actions may be the cause of their disease,<\/span>\u00a0which may contribute\u00a0to<\/span>\u00a0an additional burden of guilt or shame\u00a0for<\/span>\u00a0PWP.38<\/sup><\/span>\u00a0It is important to\u00a0<\/span>u<\/span>nderstand their values and beliefs while addressing their fears and concerns. This approach is especially important towards the end of life,<\/span>\u00a0when a patient\u2019s spiritual and religious beliefs may become even more central and impact\u00a0the\u00a0<\/span>preferred place of death or advanced care planning. These types of discussions are often encouraged in palliative care settings but definitely have value\u00a0in<\/span>\u00a0PD management throughout the disease trajectory.<\/span>\u00a0In some cultures, the decision regarding which family members are told the\u00a0<\/span>truth<\/span>\u00a0about medical issues and who can be engaged to help decide on treatment options can be overly complex.39<\/sup><\/span>\u00a0<\/span>Fostering open dialogue\u00a0with the patients\u00a0<\/span>allows physicians to appropriately apply their expertise in ways that positively impact patient outcomes. Positive holistic health management can be facilitated by several strategies.\u00a0Table 1<\/span>\u00a0displays some suggested methods for how clinicians can facilitate patient wellness.<\/p>\n<\/p>\n
Cultural and\u00a0d<\/span>iversity\u00a0c<\/span>onsiderations in\u00a0w<\/span>ellness<\/h1>\n
<\/p>\n