Improving Conversations about Parkinson's Dementia.

BACKGROUND: People with Parkinson's disease (PD) have an increased risk of dementia, yet patients and clinicians frequently avoid talking about it due to associated stigma, and the perception that "nothing can be done about it". However, open conversations about PD dementia may allow people with the condition to access treatment and support, and may increase participation in research aimed at understanding PD dementia. OBJECTIVES: To co-produce information resources for patients and healthcare professionals to improve conversations about PD dementia. METHODS: We worked with people with PD, engagement experts, artists, and a PD charity to open up these conversations. 34 participants (16 PD; 6 PD dementia; 1 Parkinsonism, 11 caregivers) attended creative workshops to examine fears about PD dementia and develop information resources. 25 PD experts contributed to the resources. RESULTS: While most people with PD (70%) and caregivers (81%) shared worries about cognitive changes prior to the workshops, only 38% and 30%, respectively, had raised these concerns with a healthcare professional. 91% of people with PD and 73% of caregivers agreed that PD clinicians should ask about cognitive changes routinely through direct questions and perform cognitive tests at clinic appointments. We used insights from the creative workshops, and input from a network of PD experts to co-develop two open-access resources: one for people with PD and their families, and one for healthcare professionals. CONCLUSION: Using artistic and creative workshops, co-learning and striving for diverse voices, we co-produced relevant resources for a wider audience to improve conversations about PD dementia.

The missing piece of the puzzle - The key role of the dietitian in the management of Parkinson's disease.

The current paradigm for the multidisciplinary management of Parkinson's Disease (PD) does not include regular nutritional assessment despite research showing that 90 % of people living with Parkinson's (PwP) lack access to basic dietetic services. Since many non-motor symptoms such as dysphagia, constipation and orthostatic hypotension and PD complications such as weight loss and sarcopenia can be improved through dietary intervention, dietitians are a critical missing piece of the PD management puzzle. This paper serves to review the role of dietitians and medical nutrition therapy in management of PD as well as a call to action for future studies to investigate improvement of nutritional status and quality of life for all PwP.

Updates in Parkinson's Disease Integrative Therapies: an Evidence-Based Review.

PURPOSE OF REVIEW: This review summarizes recent evidence-based integrative therapies for Parkinson's disease (PD) that may improve motor and non-motor symptoms, enhance quality of life, and alter disease progression. RECENT FINDINGS: Imaging studies have demonstrated that aerobic exercise changes brain structure and function, while strength training improves posture and balance. Loneliness is associated with worsening PD severity, but social prescribing and cognitive behavioral therapy may effectively foster connections. Ayurvedic and traditional Chinese medicine practices including yoga, meditation, tai chi, and acupuncture may help improve mobility, mood, sleep, and quality of life. Art therapy enhances visuospatial skills, whereas music and dance therapy can alleviate freezing of gait. Several studies demonstrate successful use of these integrative strategies virtually, thereby improving patient accessibility and participation. PD management has broadened to include integrative approaches combining conventional and complementary therapies. Potential benefits of movement, nutrition, sleep, socialization, and mind-body practices have been confirmed with several recent randomized controlled trials.

Staying hidden: The burden of stigma in PD.

BACKGROUND: Despite the myriad motor and non-motor challenges associated with Parkinson's disease (PD) diagnosis, the hidden issue of stigma may be among the most influential factors negatively affecting quality of life. A number of qualitative studies have been published assessing various aspects of stigma in PD, and quantitative studies assert that most people with PD experience stigma during the course of their disease. Stigma is associated with poorer mental and physical health, poorer quality of life, decreased levels of hope, self-esteem and self-efficacy. The resulting stigma can lead to social anxiety and isolation, reluctance to seek medical care, loneliness, depression and anxiety. Therefore, understanding what stigma is, where it comes from, and how it affects people living with PD may offer clinicians and care partners tools to help mitigate the negative effects. FOCUS: Over the past few decades, we have seen a move away from simply focusing on the effects of a disease (medical model) toward a holistic biopsychosocial approach that considers the role of environmental factors (stigma) when assessing overall well-being. We review some proactive practical suggestions to help people living with PD effectively combat the negative effects of stigma. CONCLUSION: The additional hidden burden of stigma from PD affects quality of life. Having a better understanding of the role of stigma and its impact may allow clinicians to provide proactive care and greater empathy for those living with the challenges of this disease.

Chaudhuri's Dashboard of Vitals in Parkinson's syndrome: an unmet need underpinned by real life clinical tests.

We have recently published the notion of the "vitals" of Parkinson's, a conglomeration of signs and symptoms, largely nonmotor, that must not be missed and yet often not considered in neurological consultations, with considerable societal and personal detrimental consequences. This "dashboard," termed the Chaudhuri's vitals of Parkinson's, are summarized as 5 key vital symptoms or signs and comprise of (a) motor, (b) nonmotor, (c) visual, gut, and oral health, (d) bone health and falls, and finally (e) comorbidities, comedication, and dopamine agonist side effects, such as impulse control disorders. Additionally, not addressing the vitals also may reflect inadequate management strategies, leading to worsening quality of life and diminished wellness, a new concept for people with Parkinson's. In this paper, we discuss possible, simple to use, and clinically relevant tests that can be used to monitor the status of these vitals, so that these can be incorporated into clinical practice. We also use the term Parkinson's syndrome to describe Parkinson's disease, as the term "disease" is now abandoned in many countries, such as the U.K., reflecting the heterogeneity of Parkinson's, which is now considered by many as a syndrome.

A Wellness Prescription for Parkinson's: Mid to Late-Stage Disease.

The mid- to late-stages of Parkinson's disease (PD) bring increasing disability that may challenge independence and lower quality of life. Many people with PD struggle to remain hopeful and cope with an uncertain future due to the progression of the disease. Although disability in PD is due chiefly to motor impairment, nonmotor symptoms and psychosocial distress are also major contributors that are amenable to treatment. Interventions that address nonmotor symptoms and psychosocial distress can improve daily function and quality of life even as motor function worsens with disease progression. This manuscript proposes a patient-centered, proactive strategy to promote psychosocial adaptation to decrease the impact of motor, nonmotor, and psychosocial distress on quality of life and function in people with PD.

Early-onset Parkinson's disease: An assessment of unmet psychosocial needs.

BACKGROUND: Early onset Parkinson's disease (EOPD) affects people in the prime of their lives, typically between 21 and 50 years of age, which results in a variety of challenges that are unique compared to those diagnosed later in life. A better understanding of the unmet needs of this population is critical to delivering bespoke care and improving their quality of life. OBJECTIVES: To assess the unmet needs of people with early onset Parkinson's disease. METHODS: A cross-sectional sample of 198 adults with self-identified early onset Parkinson's disease completed surveys to ascertain the most common unmet needs of this population. Simple descriptive statistics including frequencies, means, and standard deviations were used to quantify the most common unmet needs and were compared between men, women, and Hispanic/Latino with significance determined by chi-square tests. RESULTS: Overall, the top five unmet needs were (1) need for "a community more like me" (65.2%), (2) more PD information (48%), (3) information about how their PD will progress (47%), (4) help with mental health issues (34.8%), and (5) help with employment issues (33.8%). The top unmet need for men was help with employment issues (50.8%), for women, "a community more like me" (72.3%), and for Hispanic/Latinos, more PD information (47%). CONCLUSION: Although the number of people living with EOPD is considerably smaller than those with conventional age at onset, the potential impact to quality of life in this population remains tremendous. We propose a framework to start to address these needs.

Childhood Trauma and Parkinson Disease: Associations of Adverse Childhood Experiences, Disease Severity, and Quality of Life.

Background and Objectives: Childhood trauma has been shown to be associated with adverse health outcomes that can last a lifetime. The effects of trauma have not been evaluated in a Parkinson disease (PD) population. The goal of this study was to survey individuals with PD to evaluate whether the intensity of childhood trauma is associated with individual symptoms, overall disease severity, or quality of life. Methods: An Internet-based observational survey was designed to evaluate modifiable variables associated with PD progression. In this cross-sectional analysis, adverse childhood experiences (ACEs) were used as a measure of childhood trauma, patient-reported outcomes in PD for the primary measure of PD severity, and Patient-Reported Outcomes Measurement Information System (PROMIS) Global for quality of life (QoL). Results: Seven hundred twelve of 900 participants (79%) responded to the questions related to childhood trauma. Among respondents, QoL decreased as incidence of childhood trauma increased. Individuals with ACE scores 4 or higher reported greater symptom severity for 45% of the variables tested, including apathy, muscle pain, daytime sleepiness, restless leg syndrome, depression, fatigue, comprehension, and anxiety (p < 0.05) compared with individuals with trauma scores of zero. Discussion: These data suggest childhood trauma is associated with a mild increase in overall patient-reported PD severity, specifically mood and other nonmotor and motor symptoms. While the associations were statistically significant, the impact of trauma was less robust than previously described predictors of severity, such as diet, exercise, and social connection. Future research should attempt to include more diverse populations, attempt to improve the response rate of these sensitive questions, and, most importantly, determine whether the adverse outcomes associated with childhood trauma can be mitigated with lifestyle modification, psychosocial support, and intervention in adulthood.

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

BACKGROUND: Being diagnosed with a neurodegenerative disease is a life-changing event and a critical time to help patients cope and move forward in a proactive way. Historically, the main focus of Parkinson's disease (PD) treatment has been on the motor features with limited attention given to non-motor and mental health sequelae, which have the most impact on quality of life. Although depression and anxiety have been described at the time of PD diagnosis, demoralization, intolerance of uncertainty, decreased self-efficacy, stigma and loneliness can also present and have negative effects on the trajectory of the disease. Hence, understanding the psychological impact of the diagnosis and how to provide better counselling at this critical time point may be the key to a better long-term trajectory and quality of life. FOCUS: There has been a paradigm shift in the treatment of chronic illness moving beyond the medical model, which focuses on fighting illness with the physician being in charge of the treatment process and the patient being the passive recipient, toward a more holistic (i.e., physical, psychological, social, and spiritual health) biopsychosocial approach that emphasizes behavioral factors with the patient being an active collaborator in their treatment. Hence, we propose that fostering resilience, social support, and psychological flexibility offer promise toward attenuating negative reactions and improving overall well-being. CONCLUSION: Through a proactive wellness approach incorporating lifestyle choices, people with PD (PwP) can not only achieve improved states of health, well-being, and quality of life, but actually thrive.

The relationship between meaning in life and apathy in people with Parkinson's disease: a cross-sectional analysis.

BACKGROUND: Apathy remains a common and problematic neuropsychiatric feature associated with Parkinson's disease resulting in reductions in health-related quality of life, and effective treatments remain elusive. Meaning in life (MIL) has been implicated in a variety of positive health outcomes, and this study assesses the relationship between apathy and MIL while hoping to identify a potential new interventional target. METHODS: A cross-sectional sample of 237 PwPD completed surveys to evaluate MIL and a variety of non-motor symptoms (NMS), and a hierarchical regression analysis was conducted to evaluate relationships of interest. RESULTS: Correlational analysis indicated the presence of meaning in life was statistically negatively and moderately to strongly correlated with apathy (r = - 0.60, p < .001). Hierarchical regression analysis results showed that presence of meaning in life explained a total of 48% of variance in apathy. More specifically, the presence of meaning in life (ß = - 0.43, p < .001) was associated with apathy after controlling for sociodemographic and other potentially confounding variables. CONCLUSIONS: This study demonstrates the significant negative relationship between MIL and apathy. Considering the lack of effective treatments for apathy, which is one of the most disabling symptoms affecting PwPD, identifying a potential target for intervention is exciting. MIL has the potential to offer clinicians a novel intervention to provide a much-needed treatment option to improve both apathy and HRQoL.

Social isolation, loneliness and mental health sequelae of the Covid-19 pandemic in Parkinson's disease.

People living with Parkinson Disease (PwP) have been at risk for the negative effects of loneliness even before the Coronavirus Disease 2019 (Covid-19) pandemic. Despite some similarities with previous outbreaks, the Covid-19 pandemic is significantly more wide-spread, long-lasting, and deadly, which likely means demonstrably more negative mental health issues. Although PwP are not any more likely to contract Covid-19 than those without, the indirect negative sequelae of isolation, loneliness, mental health issues, and worsening motor and non-motor features remains to be fully realized. Loneliness is not an isolated problem; the preliminary evidence indicates that loneliness associated with the Covid-19 restrictions has dramatically increased in nearly all countries around the world.

Wellness, sexual health, and nonmotor Parkinson's.

Nonmotor symptoms of Parkinson's disease (PD) range from neuropsychiatric and cognitive to sleep, sensory, and genito-urinary disorders, and occur as a result of the disease process as well as due to side effects of drug treatment for PD. Sexual dysfunction is an important aspect of the nonmotor profile of Parkinson's but is rarely discussed. Sexual health is considered an integral element of holistic health, thus sexual dysfunction can also significantly impact quality of life in people with Parkinson's. The effect of sexual dysfunction of PD, both disease related and drug induced, on the concept of "wellness" of patients and their intimate partners is poorly understood, inadequately researched and a key unmet need in care and support. In this chapter we discuss the concept of "wellness" as applied to the treatment of PD, the ways in which nonmotor symptoms and other aspects of living may affect wellness in PD, and strategies for addressing sexual health utilizing a wellness model.

Unmet Needs of Women Living with Parkinson's Disease: Gaps and Controversies.

Personalized medicine considering sex, gender, and cultural context has become the vanguard of delivery of care. However, women's issues in Parkinson disease (PD), especially from a psychosocial standpoint, have been an overlooked field. The key research areas include women-inclusive drug and device studies and genetic and hormonal considerations. Moreover, women with PD need to be educated and empowered on how to communicate their symptoms and needs, get engaged in research, get organized as a community, and support one another. Women with PD need tools to help track and convey their unique motor and nonmotor symptoms and psychological and social support needs. The management of PD needs to be customized to include the unique stages of women's lives, including menstrual cycles, pregnancy, perimenopause, menopause, and postmenopause. Specific guidelines for the use of hormonal treatments and customized dopamine replacement dosing need to be developed. Women need guidance on culturally sensitive wellness and self-care strategies that are customized for them. Basic core competencies in knowledge for all clinicians treating women with PD need to be established, including how to accurately diagnose, proactively identify, and treat the symptoms of PD in women and to ensure timely referral for specialty care, advanced therapies, and research studies. Caregivers and families need guidance on holistically supporting women with PD. The voices of women living with PD must be amplified to catalyze real change in this neglected field. This paper provides an overview of the current knowledge, gaps, and possible strategies to deal with the unmet needs of women living with PD with a focus on the clinical and psychosocial aspects. © 2022 International Parkinson and Movement Disorder Society.

Mind the gap: Inequalities in mental health care and lack of social support in Parkinson disease.

Inequalities in mental healthcare and lack of social support during the COVID-19 pandemic have lowered quality of life and increased overall burden of disease in people with Parkinson's (PWP). Although the pandemic has brought attention to these inequalities, they are long standing and will persist unless addressed. Lack of awareness of mental health issues is a major barrier and even when recognized disparities based on race, gender, and socioeconomic factors limit access to already scarce resources. Stigma regarding mental illness is highly prevalent and is a major barrier even when adequate care exists. Limited access to mental healthcare during the pandemic and in general increases the burden on caregivers and families. Historically, initiatives to improve mental healthcare for PWP focused on interventions designed for specialty and academic centers generally located in large metropolitan areas, which has created unintended geographic disparities in access. In order to address these issues this point of view suggests a community-based wellness model to extend the reach of mental healthcare resources for PWP.

Synergy of pandemics-social isolation is associated with worsened Parkinson severity and quality of life.

Social isolation and its deleterious effects on health increases with age in the general population. People with Parkinson's Disease (PWP) are no exception. Social isolation is a risk factor for worsened health outcomes and increased mortality. Symptoms such as depression and sleep dysfunction are adversely affected by loneliness. There is a paucity of research on social isolation in Parkinson's disease (PD), which is all the more critical now in the setting of social distancing due to COVID-19. The goal of this study was to survey individuals with PD to evaluate whether social isolation is associated with PD symptom severity and quality of life. Only individuals reporting a diagnosis of idiopathic PD were included in this analysis. The primary outcome measures were the Patient-Reported Outcomes in PD (PRO-PD) and questions from PROMIS Global related to social health. PRO-PD scores increased as social performance and social satisfaction scores diminished. Individuals who reported being lonely experienced a 55% greater symptom severity than those who were not lonely (P < 0.01). Individuals who documented having a lot of friends had 21% fewer symptoms than those with few or no friends (P < 0.01). Social isolation was associated with greater patient-reported PD severity and lower quality of life, although it is unclear whether this is the cause and/or a consequence of the disease. In essence, the Parkinson pandemic and the pandemic of social isolation have been further compounded by the recent COVID-19 pandemic. The results emphasize the need to keep PWP socially connected and prevent loneliness in this time of social distancing. Proactive use of virtual modalities for support groups and social prescribing should be explored.