Patient and caregiver characteristics associated with caregiver burden in Parkinson’s disease: a palliative care approach

Macchi, Zachary A.; Koljack, Claire E; Miyasaki, Janis; Katz, Maya; Galifianakis, Nick; Prizer, Lindsay P.; Sillau, Stefan; Kluger, Benzi M.

doi:10.21037/apm.2019.10.01

Cited by 98 publications

(79 citation statements)

References 38 publications

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“…Additionally, because of the changes that caregivers' experience in their social or professional life, they often encounter feelings of frustration or uncertainty about the future 42 . In this study, these affective symptoms were associated with higher caregiver burden, as in many other previous studies 40, [43][44][45][46] . They may be a consequence of the burden of caring or, alternatively, depression and anxiety may induce pessimism and burden of caregiving may be experienced as greater 6 .…”

Section: Discussionsupporting

confidence: 87%

Caregiver Burden in Late-Stage Parkinsonism and Its Associations

Kalampokini

Hommel

Lorenzl

et al. 2020

J Geriatr Psychiatry Neurol

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Background: Patients in the late stages of parkinsonism are highly dependent on others in their self-care and activities of daily living. However, few studies have assessed the physical, psychological and social consequences of caring for a person with late-stage parkinsonism. Patients and methods: Five hundred and six patients and their caregivers from the Care of Late Stage Parkinsonism (CLaSP) study were included. Patients’ motor and non-motor symptoms were assessed using the UPDRS and Non-motor symptom scale (NMSS), Neuropsychiatric inventory (NPI-12), and caregivers’ health status using the EQ-5D-3 L. Caregiver burden was assessed by the Zarit Burden Interview (ZBI). Results: The majority of caregivers were the spouse or life partner (71.2%), and were living with the patient at home (67%). Approximately half of caregivers reported anxiety/depression and pain/discomfort (45% and 59% respectively). The factors most strongly associated with caregiver burden were patients’ neuropsychiatric features on the total NPI score (r = 0.38, p < 0.0001), total NMSS score (r = 0.28, p < 0.0001), caring for male patients and patients living at home. Being the spouse, the hours per day assisting and supervising the patient as well as caregivers’ EQ-5D mood and pain scores were also associated with higher ZBI scores (all p < 0.001). Conclusion: The care of patients with late stage parkinsonism is associated with significant caregiver burden, particularly when patients manifest many neuropsychiatric and non-motor features and when caring for a male patient at home.

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Section: Discussionsupporting

confidence: 87%

Caregiver Burden in Late-Stage Parkinsonism and Its Associations

Kalampokini

Hommel

Lorenzl

et al. 2020

J Geriatr Psychiatry Neurol

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“…The impact of older patients' depression on caregiver burden has been further confirmed, supporting the importance of an accurate evaluation of depression, which can benefit both patients with dementia and caregivers [25]. In addition, patients' psychological factors, such as reduced spiritual wellbeing and health-related quality of life, have been suggested as further sources of burden among caregivers of older adults with Parkinson's disease [26].…”

Section: Introductionmentioning

confidence: 91%

A Clinical Bridge between Family Caregivers and Older Adults: The Contribution of Patients’ Frailty and Optimism on Caregiver Burden

Sardella

Lenzo

Alibrandi

et al. 2021

IJERPH

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The association between caregiver burden and the physical frailty of older adults has been the object of previous studies. The contribution of patients’ dispositional optimism on caregiver burden is a poorly investigated topic. The present study aimed at investigating whether older adults’ multidimensional frailty and optimism might contribute to the burden of their family caregivers. The Caregiver Burden Inventory was used to measure the care-related burden of caregivers. The multidimensional frailty status of each patient was evaluated by calculating a frailty index, and the revised Life Orientation Test was used to evaluate patients’ dispositional optimism. The study involved eighty family caregivers (mean age 64.28 ± 8.6) and eighty older patients (mean age 80.45 ± 7.13). Our results showed that higher frailty status and lower levels of optimism among patients were significantly associated with higher levels of overall burden and higher burden related to the restriction of personal time among caregivers. Patients’ frailty was additionally associated with caregivers’ greater feelings of failure, physical stress, role conflicts, and embarrassment. Understanding the close connection between patient-related factors and the burden of caregivers appears to be an actual challenge with significant clinical, social, and public health implications.

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“…Hinsichtlich der Bedeutung medikamentöser und invasiver Therapien auf die Betreuungsbelastung finden sich in der Literatur einerseits der Faktor Dosis der dopaminergen Therapie als Ausdruck der Krankheitsdauer und des Schweregrades der motorischen Symptomatik des Pfleglings als ein Belastungsfaktor [12,33,[35][36][37][38][39][40][41][42][43][44][45][46][47][48][49][50], andererseits einige medikamentöse Therapien, wie die Levodopa/Carbidopa intestinale Geltherapie (Duodopa), zu der in nichtkontrollierten Studien teilweise positive Effekte auf die Betreuungsbelastung festgestellt wurden [38,39] und die Palliativ-Betreuung [19,20,32]. Außerdem wurde in kontrollierten Therapiestudien mit Memantin und Donepezil bei Personen mit Parkinson-Demenz und Demenz mit Lewy-Körperchen sowie mit Rivastigmin bei apathischen depressions-und demenzfreien Parkinson-Pat.…”

Section: Literaturrecherche Und Analyseunclassified

Belastungen in der Betreuung von Parkinson-Patientinnen und - Patienten

Ransmayr¹

2020

Fortschr Neurol Psychiatr

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ZusammenfassungPatientinnen und Patienten (Pat.) mit Parkinson-Krankheit bedürfen mit zunehmender Krankheitsdauer und Schweregrad persönlicher Betreuung, die meist von weiblichen Angehörigen gewährleistet wird. Die Belastungen für pflegende Angehörige resultieren einerseits aus den motorischen Beeinträchtigungen der Pat., andererseits von neurokognitiven und neuropsychiatrischen Symptomen sowie Verhaltensstörungen, Störungen des autonomen Nervensystems, der Miktion, des Schlafes und der Selbstständigkeit. Gesundheitliche Probleme der Betreuungsperson, u. a. Depression und Angst, emotionale Probleme mit dem Pflegling, Beeinträchtigung des Schlafs, sowie Einschränkungen in persönlichen Anliegen, Beruf, Familie, Freizeitgestaltung, sozialen Aktivitäten, finanzielle Einbußen und mangelhafte soziale Unterstützung stellen weitere Belastungsfaktoren dar. Personen mit dem Risiko einer erheblichen Betreuungsbelastung sind frühzeitig zu identifizieren, um ihnen Informationen über die Krankheit und Unterstützungsmöglichkeiten sowie entsprechende personelle, psychologische und finanzielle Unterstützung zukommen zu lassen.

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Patient and caregiver characteristics associated with caregiver burden in Parkinson’s disease: a palliative care approach

Cited by 98 publications

References 38 publications

Caregiver Burden in Late-Stage Parkinsonism and Its Associations

Caregiver Burden in Late-Stage Parkinsonism and Its Associations

A Clinical Bridge between Family Caregivers and Older Adults: The Contribution of Patients’ Frailty and Optimism on Caregiver Burden

Belastungen in der Betreuung von Parkinson-Patientinnen und - Patienten

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