Criticism in the Parkinson's Caregiving Relationship: A Key Target for Intervention.

INTRODUCTION: Caregiver distress is prevalent in Parkinson's disease (PD) and predictive of negative health outcomes for both people with PD and caregivers. To identify future intervention targets, it is important to better elucidate the specific processes, such as criticism, that perpetuate burden. OBJECTIVE: Evaluate the frequency and impact of criticism and reactivity to criticism in PD caregiving dyads. METHODS: Eighty-three people with PD and their caregivers independently completed measures of criticism and physical and emotional health. RESULTS: Criticism in the caregiving relationship was reported by 71.1% (n = 59) of people with PD and 80.7% (n = 67) of caregivers. Both perceived criticism and emotional reactivity to criticism were significant predictors of caregiver distress, adjusting for PD motor and non-motor symptom severity. In contrast, criticism was not related to PD depression. CONCLUSION: Criticism in the PD caregiving relationship is a clear target for psychotherapeutic intervention and may improve caregiver health and quality of life.

Innovative Recruitment Strategies to Increase Diversity of Participation in Parkinson's Disease Research: The Fox Insight Cohort Experience.

BACKGROUND: Clinical research in Parkinson's disease (PD) faces practical and ethical challenges due to two interrelated problems: participant under-recruitment and lack of diversity. Fox Insight (FI) is a web-based longitudinal study collecting patient-reported outcomes and genetic data worldwide to inform therapeutic studies. FI's online platform provides an opportunity to evaluate online strategies for recruiting large, diverse research cohorts. OBJECTIVE: This project aimed to determine 1) whether FI's digital marketing was associated with increased enrollment overall and from under-represented patient groups, compared to traditional recruitment methods; 2) the clinical and demographic characteristics of samples recruited online, and 3) the cost of this online recruitment. METHOD: FI recruitment during a 6-week baseline period without digital promotion was compared to recruitment during several periods of digital outreach. Separate online recruiting intervals included general online study promotion and unique Facebook and Google ad campaigns targeting under-represented subgroups: early PD, late/advanced PD, and residents of underrepresented/rural geographic areas. RESULTS: Early PD, late PD, and geotargeting campaigns enrolled more individuals in their respective cohorts compared to baseline. All online campaigns also yielded greater total FI enrollment, attracting more participants who were non-White, Hispanic, older, female, and had lower educational attainment and income, and more medical comorbidities. Cost per new participant ranged from $21 (Facebook) to $108 (Google). CONCLUSION: Digital marketing may allow researchers to increase, accelerate, and diversify recruitment for PD clinical studies, by tailoring digital ads to target PD cohort characteristics.

Cognitive impairment in Parkinson's disease: a report from a multidisciplinary symposium on unmet needs and future directions to maintain cognitive health.

People with Parkinson's disease (PD) and their care partners frequently report cognitive decline as one of their greatest concerns. Mild cognitive impairment affects approximately 20-50% of people with PD, and longitudinal studies reveal dementia in up to 80% of PD. Through the Parkinson's Disease Foundation Community Choice Research Award Program, the PD community identified maintaining cognitive function as one of their major unmet needs. In response, a working group of experts across multiple disciplines was organized to evaluate the unmet needs, current challenges, and future opportunities related to cognitive impairment in PD. Specific conference goals included defining the current state in the field and gaps regarding cognitive issues in PD from patient, care partner, and healthcare professional viewpoints; discussing non-pharmacological interventions to help maintain cognitive function; forming recommendations for what people with PD can do at all disease stages to maintain cognitive health; and proposing ideas for how healthcare professionals can approach cognitive changes in PD. This paper summarizes the discussions of the conference, first by addressing what is currently known about cognitive dysfunction in PD and discussing several non-pharmacological interventions that are often suggested to people with PD. Second, based on the conference discussions, we provide considerations for people with PD for maintaining cognitive health and for healthcare professionals and care partners when working with people with PD experiencing cognitive impairment. Furthermore, we highlight key issues and knowledge gaps that need to be addressed in order to advance research in cognition in PD and improve clinical care.

Barriers to mental health care utilization in Parkinson's disease.

BACKGROUND: Parkinson's disease (PD) is frequently complicated by co-occurring psychiatric problems such as depression and anxiety that negatively affect the course and management of the illness. Yet, in most cases, these psychiatric comorbidities are neither recognized nor treated to remission. The primary purpose of this study was to identify and describe barriers to mental health care utilization for people with PD. Secondary objectives included the assessment of attitudes and preferences regarding the need for mental health services in the PD community and the acceptability of telehealth interventions as a method for improving access and quality of care. METHODS: A total of 769 people with PD completed an anonymous cross-sectional questionnaire assessing barriers to mental health care utilization in this medical population. Respondents were drawn from a national sample. RESULTS: Commonly endorsed barriers to mental health care utilization in PD reflect the patients' incomplete understanding of mental health problems, access issues, and illness-specific concerns, as well as the inadequate screening and detection of psychiatric complications by medical providers and the need for more effective treatments in this medical population. Several demographic, medical, and psychiatric variables also influenced the likelihood of accessing mental health care. Interest in telehealth approaches to mental health treatment was high and, in several instances, correlated with perceived barriers to mental health care utilization. CONCLUSIONS: People with PD may encounter a multitude of barriers that impede their pursuit of mental health care. Clinical implications are discussed and further research is needed to replicate and extend these findings.