Caregiver burden is a term that refers to the adverse effect of caregiving on the physical, emotional, social, spiritual, and financial well-being of the caregiver. Caregiver burden is associated with providing care to an individual with a chronic illness or disability, and the unique symptoms of Parkinson disease (PD) can amplify a patient’s needs and reliance on others, leading to adverse outcomes for patients and their caregivers. In this scoping review of the literature from January 2017 through April 2022 that included 114 studies, we provide an updated, evidence-based summary of patient and caregiver-related factors that contribute to caregiver burden in PD. We also describe the impact of caregiver stress and burden on caregivers based on qualitative research studies and review recent interventions to mitigate burden. By providing clinical updates for practitioners, this review is designed to improve recognition of caregiver burden in the post-pandemic era and foster the development of targeted interventions to reduce caregiver burden in PD.

Caregiver Burden in Parkinson Disease: A Scoping Review of the Literature from 2017-2022.

Carers play a critical role in supporting older people with health problems to remain living at home. This study aimed to understand the role and quality of life of older carers of older people and identify strategies used to manage their own health and well-being.Older carers (aged ≥50 years) of older people (aged ≥65 years) in Australia participated in a cross-sectional survey focused on carer roles, self-rated health, information and activities used to maintain their carer role and health, barriers to accessing health care, and assessment of quality of life (QoL) using the Dementia Quality of Life Scale for Older Family Carers. Multiple regression analysis examined relationships between variables and the QoL outcome.The survey was completed by 189 older carers (mean age: 68 years; SD = 9.3). Most were female (83.5%), 80.2% providing care daily and 47.8% provided ≥six hours care daily. Almost half (45.1%) self-reported their health as average or below. Despite rating ensuring personal health as very important (mean importance 8/10), only 46.3% reported receiving support from their general practitioner for their carer role. The most common barrier to accessing care for themselves was "not having enough time". Factors independently associated with poorer carer QoL were living with the care-recipient, caring for someone with depression/anxiety and poor care-recipient health. Factors independently associated with higher carer QoL were placing high importance on personal health, receiving assistance from a specialist clinic as a carer, and older age.Older carers of older people provide high levels of care and experience reduced quality of life. Innovative approaches that provide integrated care and support for older carers to promote their QoL are urgently needed. 

Understanding the Role, Quality of Life and Strategies Used by Older Carers of Older People to Maintain Their Own Health and Well-Being: A National Australian Survey

ABSTRACT Introduction Over half of Parkinson’s disease (PD) patients develop psychotic symptoms, and PD psychosis (PDP) is associated with significant distress to patients, caregiver burden, and impairs quality of life. Pharmacological therapy is limited to atypical antipsychotics. Areas covered This review will summarize efficacy but will focus on the safety of antipsychotics for treating PDP, and in particular the off-target safety issues including cognitive impairment, sleep disturbance, cardiovascular effects, and motor function. Expert opinion Pimavanserin is the only medication approved in the US for treating PDP, however clozapine is also considered efficacious. Despite lack of substantial evidence for efficacy, quetiapine is commonly used to treat PDP. Despite the effectiveness of pimavanserin and clozapine for treating PDP, a need exists for additional pharmacological agents that are effective for PDP while providing an acceptable safety and tolerability profile. Medications to treat PDP should avoid worsening motor function, and also minimize sleep disturbances, cognitive impairment, cardiovascular effects, and other non-motor safety concerns. A neutral effect or reduction in mortality risk associated with PD and PDP would be ideal, and low rate of discontinuation due to AEs is desirable. Lastly, medications that can be used safely in combination with other pharmacological agents is essential.

Hallucinations and delusions associated with Parkinson’s disease psychosis: safety of current treatments and future directions

The prevalence of depression in isolated/idiopathic rapid eye movement sleep behavior disorder: A systematic review and meta-analysis.

Caregiver burden is still an unmet need in the treatment of many neurodegenerative diseases [...].

/pdf/caregiver-burden-in-movement-disorders-and-neurodegenerative-2sahnhjq.pdf

Caregiver Burden in Movement Disorders and Neurodegenerative Diseases: Editorial

Parkinson’s disease (PD) is a progressive neurodegenerative disorder resulting in reduced health-related quality of life (HR-QoL) of people with PD (PwP) and their caregivers. Furthermore, there is an accumulating burden on caregivers of patients in advanced stages of the disease. In previous studies, motor- and non-motor-symptoms of PwP have been identified to contribute to reduced HR-QoL and an increased caregiver burden. This cross-sectional observational study aimed to study the influence of neuropsychiatric symptoms measured with the Scale for Evaluation of Neuropsychiatric Disorders in Parkinson’s Disease (SEND-PD) questionnaire on the HR-QoL of PwP, as well as the caregiver burden. Analyses revealed a significant association between SEND-PD subscale mood/apathy and reduced HR-QoL in PwP, measured by the Parkinson’s disease quality of life questionnaire (PDQ-8) (p < 0.001). Furthermore, mood/apathy was significantly correlated with caregiver burden (p = 0.001) in the multiple linear regression analysis. Hence, neuropsychiatric symptoms were found to have a profound impact on the HR-QoL of PwP, as well as on caregiver burden. Since neuropsychiatric symptoms were one of the main predictors for caregiver burden, physicians of PwP should treat these symptoms to stabilize caregiver burden, as well as HR-QoL in PwP and their caregivers.

/pdf/neuropsychiatric-symptoms-in-parkinsons-disease-patients-are-127ql7by.pdf

Neuropsychiatric Symptoms in Parkinson’s Disease Patients Are Associated with Reduced Health-Related Quality of Life and Increased Caregiver Burden

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Neuropsychiatric Symptoms in Parkinson’s Disease Patients Are Associated with Reduced Health-Related Quality of Life and Increased Caregiver Burden