Personalized Care in Late-Stage Parkinson’s Disease: Challenges and Opportunities

Abstract

Late-stage Parkinson’s disease (LSPD) patients are highly dependent on activities of daily living and require significant medical needs. In LSPD, there is a significant caregiver burden and greater health economic impact compared to earlier PD stages. The clinical presentation in LSPD is dominated by motor and non-motor symptoms (NMS) that most of the time have a sub-optimal to no response to dopaminergic treatment, especially when dementia is present. Non-pharmacological interventions, including physiotherapy, cognitive stimulation, speech, occupational therapy, and a specialized PD nurse, assume a key role in LSPD to mitigate the impact of disease milestones or prevent acute clinical worsening and optimize the management of troublesome NMS. However, the feasibility of these approaches is limited by patients’ cognitive impairment and the difficulty in delivering care at home. The present care challenge for LSPD is the ability to offer a person-centered, home-delivered palliative care model based on Advanced Care Planning. An ongoing European multicentric project, PD_Pal, aims to address this challenge.

How to Use the New European Academy of Neurology/Movement Disorder Society European Section Guideline for Invasive Therapies in Parkinson's Disease

“…However, some patients received an interventional therapy before reaching the final phase of their disease. But later‐stage PD is often related to l ‐dopa‐resistant motor symptoms, for example, axial symptoms, which also interventional therapies cannot improve sufficiently leading to the question when to terminate the interventional therapy 118–120 . Therefore, before terminating the device‐aided therapy, a careful assessment is mandatory to confirm the benefit which the patient still has 119 .…”

“…But later‐stage PD is often related to l ‐dopa‐resistant motor symptoms, for example, axial symptoms, which also interventional therapies cannot improve sufficiently leading to the question when to terminate the interventional therapy. 118 , 119 , 120 Therefore, before terminating the device‐aided therapy, a careful assessment is mandatory to confirm the benefit which the patient still has. 119 Overall, the superordinate goal for palliative patients should always be the improvement in quality of life.…”

The long-term trend of Parkinson’s disease incidence and mortality in China and a Bayesian projection from 2020 to 2030

“…Typical symptoms of PD include resting tremors, muscle rigidity, slow movement, accompanied by mental disorder, dementia, and memory impairment (Beaton et al, 2022 ). Due to its motor symptoms, it is associated with a high disability rate (Fabbri et al, 2022 ). Usually, as the PD progresses, patients will gradually lose their ability to take care of themselves and eventually become bedridden (Fabbri et al, 2022 ).…”

“…Due to its motor symptoms, it is associated with a high disability rate (Fabbri et al, 2022 ). Usually, as the PD progresses, patients will gradually lose their ability to take care of themselves and eventually become bedridden (Fabbri et al, 2022 ). And PD mortality is mainly associated with the complications after being bedridden, such as repeated lung infections, nutritional disorders caused by difficulty eating, and others (Moscovich et al, 2017 ; Fabbri et al, 2022 ; Gonzalez et al, 2022 ).…”

“…Usually, as the PD progresses, patients will gradually lose their ability to take care of themselves and eventually become bedridden (Fabbri et al, 2022 ). And PD mortality is mainly associated with the complications after being bedridden, such as repeated lung infections, nutritional disorders caused by difficulty eating, and others (Moscovich et al, 2017 ; Fabbri et al, 2022 ; Gonzalez et al, 2022 ). There are also some patients who fall and suffer fractures during activities and even suffer from a traumatic cerebral hemorrhage, which leads to a sharp decline in their health state (Nguyen et al, 2022 ).…”