ABSTRACT
Under the traditional models of care for People with Parkinson's Disease (PD, PwP), many of their needs remain unmet and a substantial burden of motor and non-motor symptoms they experience may not be tackled sufficiently. An introduction of palliative care (PC) interventions early in the course of PD offers profound benefits: it may improve quality of life of patients, their families and caregivers through the prevention and relief of medical symptoms, while, at the same time, emphasizing their emotional needs and spiritual wellbeing, establishing goals of care, and engaging in the advance care planning (ACP). The ongoing Coronavirus Disease 2019 (Covid-19) pandemic poses an unprecedented set of challenges for PwP and has in many ways (both directly and indirectly) magnified their suffering, thus rapidly raising the demand for PC interventions. Covid-19, as well as the repercussions of prolonged mobility restrictions and limited health-care access might exacerbate the severity of PD motor symptoms and interact negatively with a range of non-motor symptoms, with a detrimental effect on quality of life. Greater motor disability, higher amount of levodopa-induced motor fluctuations with an increased daily off-time, fatigue, anxiety, depression, sleep disturbances, pain and worsening of cognitive complaints might dominate the clinical presentation in PwP during the Covid-19 pandemic, alongside raising psychological and spiritual concerns and anticipatory grief. Here, we aim to provide a foundation for pragmatic and clinically orientated PC approach to improve quality of life and relieve suffering of PwP in the context of the current, ongoing Covid-19 pandemic.
Subject(s)
COVID-19 , Disabled Persons , Motor Disorders , Parkinson Disease , Ethnicity , Humans , Levodopa , Palliative Care , Pandemics , Parkinson Disease/diagnosis , Parkinson Disease/epidemiology , Parkinson Disease/therapy , Quality of Life/psychologyABSTRACT
BACKGROUND: Therapeutic dancing can be beneficial for people living with Parkinson's disease (PD), yet community-based classes can be difficult to access. OBJECTIVE: To evaluate the feasibility and impact of online therapeutic dancing classes for people in the early to mid-stages of PD. METHODS: Co-produced with people living with PD, physiotherapists, dance teachers and the local PD association, the 'ParkinDANCE' program was adapted to enable online delivery during the COVID-19 pandemic. Participants completed 8 one-hour sessions of online therapeutic dancing. Each person was assigned their own dance teacher and together they selected music for the classes. A mixed-methods design enabled analysis of feasibility and impact. Feasibility was quantified by attendance and adverse events. Impact was determined from individual narratives pertaining to consumer experiences and engagement, analysed with qualitative methods through a phenomenological lens. RESULTS: Attendance was high, with people attending 100% sessions. There were no adverse events. Impact was illustrated by the key themes from the in-depth interviews: (i) a sense of achievement, enjoyment and mastery occurred with online dance; (ii) project co-design facilitated participant engagement; (iii) dance instructor capabilities, knowledge and skills facilitated positive outcomes; (iv) music choices were key; and (v) participants were able to quickly adapt to online delivery with support and resources. CONCLUSIONS: Online dance therapy was safe, feasible and perceived to be of benefit in this sample of early adopters. During the pandemic, it was a viable form of structured physical activity. For the future, online dance may afford benefits to health, well-being and social engagement.
Subject(s)
COVID-19 , Dance Therapy , Internet-Based Intervention , Neurological Rehabilitation , Parkinson Disease/rehabilitation , Patient Acceptance of Health Care , Patient Satisfaction , Aged , Feasibility Studies , Female , Humans , Male , Middle Aged , Outcome Assessment, Health CareABSTRACT
Introduction: Although in some countries, palliative care (PC) still remains poorly implemented, its importance throughout the course of Parkinson's disease (PD) is increasingly being acknowledged. With an emergence of Severe Acute Respiratory Syndrome Coronavirus-2 (SARS-CoV-2) pandemic, growing emphasis has been placed on the palliative needs of people with Parkinson's (PwP), particularly elderly, frail, and with comorbidities.Areas covered: The ongoing COVID-19 pandemic poses an enormous challenge on aspects of daily living in PwP and might interact negatively with a range of motor and non-motor symptoms (NMS), both directly and indirectly - as a consequence of pandemic-related social and health care restrictions. Here, the authors outline some of the motor and NMS relevant to PC, and propose a pragmatic and rapidly deployable, consensus-based PC approach for PwP during the ongoing COVID-19 pandemic, potentially relevant also for future pandemics.Expert opinion: The ongoing COVID-19 pandemic poses a considerable impact on PwP and their caregivers, ranging from mental health issues to worsening of physical symptoms - both in the short- and long-term, (Long-COVID) and calls for specific, personalized PC strategies relevant in a lockdown setting globally. Validated assessment tools should be applied remotely to flag up particular motor or NMS that require special attention, both in short- and long-term.