A Prescription for Wellness in Early PD: Just What the Doctor Ordered

Key Points

1. Clinicians should have regular discussions about the psychosocial and mental health reactions their patients may be experiencing, especially at the time of diagnosis and at other transition points during the disease trajectory and collaborate with and make appropriate referrals to a multidisciplinary team.

Being diagnosed with a chronic, neurodegenerative illness like Parkinson’s disease results in several physical and psychological changes that contribute to how one experiences the life-changing and often traumatic news. ¹ Among these potential new challenges are stress, crisis, loss and grief, body image, self-concept, stigma, uncertainty and unpredictability, and decreased quality of life. ² The onset of a chronic medical condition represents a unique set of stressors resulting from the need to cope with newly encountered daily threats (e.g., independence and autonomy, fulfillment of defined roles, concerns about the future, economic stability). ³ The ability to manage psychological stress has implications for both mental health and physical symptom management. ⁴ Because the diagnosis of a chronic condition results in the potential loss of valued functions and societal and familial roles, it can result in psychological distress that worsens overall well-being. ⁵ Among the emotional consequences commonly encountered following diagnosis are loss and grief for what is now at risk as a result of the permanency of the condition. ⁶ These losses can include a change in physical appearance, functional ability, and social roles, which may distort body image and self-concept. ⁷ Judgments are made about people who have chronic medical conditions (i.e., stigma), particularly those with visible symptoms such as tremor or stooped posture, may lead to negative stereotypes and devaluation of people by society. ⁸ This, along with perceived uncertainty about treatment, prognosis, and relationships, may ultimately lead to decreased quality of life. ⁹

The Psychological Impact of Parkinson’s Disease

Currently, the diagnostic gold standard of PD is made by a movement disorders specialist based on the presence of the cardinal motor feature of bradykinesia, in addition to tremor or rigidity. ¹⁰ Initial treatment focuses on the motor symptoms with dopamine replacement, but heterogeneous psychosocial and mental health issues (e.g., anxiety, depression, adjustment challenges) related to PD are often undervalued and unrecognized despite often being present at the time of diagnosis. ¹¹ Evidence suggests that actively addressing these comorbidities may improve both overall quality of life and functioning. ¹² Patients are typically reevaluated at six month intervals following diagnosis and pharmacologic adjustments are made as necessary, but mental health challenges are frequently not addressed. ¹³ There is a lack of awareness of the impact of mental health issues among clinicians, which is evidenced by reports of patients with PD (PwP) feeling that doctors were not sensitive enough about their mental health needs. ¹⁴ Specifically, literature reports that neurologists have neglected to recognize depression and anxiety more than 50% of the time, ¹⁵ and a significant number of patients with depressive symptoms were neither treated nor referred for a psychiatric evaluation. ¹⁶

While recognition and treatment initiation are first steps, empowering patients with the knowledge of the importance of mental health and support to take an active role in their wellness is critical. Despite the increasing awareness of mental health issues that accompany a PD diagnosis, there remains a potentially even more troubling and underrecognized reaction. See Figure 1. Demoralization has not yet been well addressed in the PD literature but is an emotional reaction to stress that is worthy of attention. Demoralization is described as a syndrome that, as a result of living with chronic symptoms, is characterized by existential distress, hopelessness, loss of meaning and purpose in life, pessimism, helplessness, sense of being trapped, absence of motivation to cope differently, and is associated with features of social alienation and lack of social support.^17,18 There is limited research on demoralization in the medical literature aside from in people with cancer, but there are clearly implications for addressing demoralization in PwP and their caregivers. ¹⁹ It is important to note that demoralization can present independently from depression, anxiety and apathy and is, therefore, something that warrants specific attention and surveillance.OPEN IN VIEWER

A challenge encountered early in the disease process (e.g., the first 5 years) is the concern that visible signs of illness, e.g., tremor or abnormal gait, may lead to negative assumptions and devaluation by others. This process is referred to as ‘felt stigma’ and can be conceptualized as one’s belief that they may encounter negative reactions if their condition is revealed and is associated with low self-esteem, depression, anxiety, and decreased help-seeking behaviors (e.g., mental health counseling). ²⁰ The distress that frequently accompanies chronic illness if untreated can be detrimental in and of itself as it may contribute to the development of additional stress-related conditions (e.g., depression, anxiety, apathy).

As a way of attempting to mitigate potential felt stigma, PwP may try to hide or minimize visible motor symptoms so that they are less noticeable or to avoid being in public. This attempt to cope with the unpredictable nature of PD can be conceptualized as intolerance of uncertainty (IU), which is defined as “a dispositional characteristic that results from a set of negative beliefs about uncertainty and its implications. Individuals who are intolerant to uncertainty find uncertainty stressful and upsetting, believe that uncertainty is negative and should be avoided and experience difficulties functioning in uncertainty-inducing situations.” ²¹ The concept of IU was developed around general anxiety disorder but is also a transdiagnostic risk factor for social anxiety disorder, panic disorder, agoraphobia, and health anxiety. ²² Because IU is fundamentally a fear of the unknown that is associated with significant anxiety, the emotional disturbances are largely driven by a desire to increase or regain control and certainty. ²³

The association between stigma, IU, and emotional and mental health issues will undoubtedly contribute to worse quality of life for PwP. The additional social determinants of health such as race, ethnicity and sexual orientation or identification further compound the negative impact of felt stigma, which is known as double stigma. Because of the felt stigma associated with IU, PwP who experience uncontrolled motor symptoms may choose to withdraw and socially isolate leading to increased loneliness, which is a well-established risk factor contributing to negative health outcomes for people with chronic health conditions and is the most suggestive predictor of psychological distress. ²⁴ Loneliness may be a bidirectional process as people around the PwP may withdraw because of stigma and discomfort while the PwP simultaneously avoids social engagements for similar reasons.

Loneliness is a risk factor for depression and depression often causes social withdrawal, which in turn increases the risk of loneliness leading to a cascade of negative mental health events. However, for some PwP, a negative trajectory is set at the time of diagnosis, as receiving the diagnosis is often experienced as a traumatic event. At the time of initial diagnosis of PD, denial is a common reaction. ² PD is particularly vulnerable to maladaptive coping by denial as most initial symptoms are subtle and the diagnosis is made clinically with no tangible biomarkers of disease presence, e.g., no blood test, genetic markers, or observable structural changes on imaging. While denial may appropriately lead to a second opinion, it may instead result in delayed time to treatment or pursuing additional unnecessary work up or inappropriate alternative therapies. ²⁵

Catastrophizing, or believing the worst about a situation despite having only limited information, is another common reaction to a PD diagnosis. An extreme example of catastrophizing occurs in neurodegenerative disorders with dementia and can often be associated with an increased risk of depression and suicide.^26-28 Depression and demoralization around the time of PD diagnosis is common, although the risk of suicide in idiopathic PD without dementia is less clear, these parallel findings of increased risk in related neurodegenerative diseases suggest increased monitoring is warranted. ²⁹ Education with the goal of managing expectations and allaying fears about the disease course may help mitigate the risk of suicide and improve mental health and quality of life outcomes.

As PD progresses and symptoms increase, maintaining well-being can become increasingly challenging. Beyond the motor features lie the emotional and motivational sequelae that are commonly associated with a loss of self-efficacy. Self-efficacy is best defined as one’s perceived ability to achieve desired goals. ³⁰ Self-efficacy is considered a critical mediator of self-management (i.e., one’s active engagement in their disease) leading to improved health and quality of life. ³¹ There is a strong relationship between self-efficacy and PD motor functioning and caregiver burden.^32,33 There have been a variety of studies linking self-efficacy to quality of life in other chronic conditions, such as chronic pain, ³⁴ arthritis, ³⁵ multiple sclerosis, ³⁶ and traumatic brain injury. ³⁷ The role of self-efficacy in achieving positive health outcomes appears clear, and helping PwP improve their self-efficacy is a key step towards wellness.

There has been a paradigm shift in the treatment of chronic illness moving beyond the physician centered medical model. This traditional model focuses on fighting illness with the physician being the controller of the treatment process while the patient is the passive recipient. A more holistic, biopsychosocial approach in which the patient proactively pursues health, rather than just reacting to disease seems to be the future. ³⁸ Salutogenesis (i.e., what causes positive health) ³⁹ is largely absent from the PD literature as pathology (i.e., reasons for disease) and complaints, symptoms and limitations remain the focal point. Antonovosky further describes the disequilibrium that accompanies disease and illness, which merits efforts to identify and provide solutions to improve overall health. ⁴⁰ Many other medical models appreciate the body’s innate ability to ‘heal itself’ or at least mitigate disease risk through positive lifestyle choices (e.g., ayurveda, traditional Chinese medicine) rather than seeking purely external pharmaceutical or surgical remedies.

For decades, chronic illness has been characterized based on pathology with often little attention given to social and environmental factors that make up a holistic treatment paradigm, ⁴¹ and PD is no exception. In the PD literature, the recent adoption of wellness may provide clinicians additional tools with which to help patients reach their health outcome goals. Despite definitional ambiguity, wellness can be defined as “the active pursuit of activities, choices, and lifestyles that lead to a state of holistic health.” ⁴² According to Halbert Dunn, ⁴³ widely considered the founder of the contemporary wellness movement, wellness is best characterized as a component of health and may be best conceptualized as a continuum rather than an end state.

Health is largely viewed as dichotomous (e.g., good, poor) based on the presence of absence of disease; however, the World Health Organization posits that health is “a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity.” ⁴⁴ Included in this definition is “well-being,” which is helpful in further conceptualizing health: Through the International Classification of Functioning, Disease, and Health, ⁴⁵ an interactive classification system designed to evaluate health and functioning in a holistic manner, the WHO defines well-being as “encompassing the total universe of human life domains, including physical, mental, and social aspects (p. 211). In other words, the WHO defines health in terms of well-being. Lastly, quality of life, often the ultimate measure of one’s satisfaction with life, is defined as “the subjective and personally derived assessment of overall well-being that results from evaluation of satisfaction across an aggregate of personally and clinically important domains.” ⁹ The ICF model (see Figure 2) has been described as a valuable tool to assess quality of life and well-being for PwP and other neurological conditions^46-48 but remains underutilized. We propose that through a focused wellness approach, PwP can not only achieve improved states of health, well-being, and quality of life, but actually thrive.OPEN IN VIEWER

Wellness Tools

Coping with the challenges of a chronic illness is not a straightforward process and requires some effort on the part of the patient to develop strategies that facilitate positive psychological adjustment and reduce the effects of untoward mental health issues. There is a robust body of literature describing coping with chronic illness, and it is largely defined as the efforts, both biological and cognitive, used to mitigate the demands of stressful situations. ⁴⁹ As self-efficacy refers to one’s appraisal of their ability to complete a task, coping self-efficacy denotes one’s belief in their capability to cope effectively with stressful life events ⁵⁰ and is associated with lower levels of psychological distress. ⁵¹

Conclusion

Being diagnosed with PD sets off a cascade of reactions that typically result in significant psychological distress, leaving the patient feeling confused and alone and uncertain about the future. The traditional PD treatment paradigm of diagnosis, initiation of dopaminergic medications, and follow-up in six months with little to no discussion about psychosocial or mental health issues ¹³ is not optimal. Evaluating patients for the presence of mental health issues is one crucial element of quality care and if challenges are identified, collaboratively working with patients to find effective coping strategies, foster resilience through the steps outlined above, and cultivate an effective social support system through social prescribing.

The movement disorders specialist does not provide patient care alone; engagement of the multidisciplinary team including psychologists, social workers and psychiatrists early in disease can improve quality of life and set up for a more favorable long-term trajectory. Whether in early- of late-stage PD, establishing a holistic, biopsychosocial approach to living with PD that emphasizes a patient-centered collaboration with the healthcare team focused on proactive wellness strategies may be the first step to achieving better long-term outcomes for PwP.