Daniel Grün1, Vannina Pieri2, Michel Vaillant3, Nico J Diederich4. 1. Department of Neurology, Centre Hospitalier de Luxembourg, Luxembourg, G.D. of Luxembourg; Competence Center of Methodology and Statistics, Luxembourg Institute of Health, Luxembourg, G.D. of Luxembourg. Electronic address: danielgruen@hotmail.com. 2. Department of Neurology, Centre Hospitalier de Luxembourg, Luxembourg, G.D. of Luxembourg. 3. Competence Center of Methodology and Statistics, Luxembourg Institute of Health, Luxembourg, G.D. of Luxembourg. 4. Department of Neurology, Centre Hospitalier de Luxembourg, Luxembourg, G.D. of Luxembourg; Faculty of Medicine, Cologne University, Cologne, Germany.
Abstract
BACKGROUND: In Parkinson disease (PD), patients often require burdensome assistance, delivered by informal caregivers (eg, spouse). DESIGN: Prospective questionnaire and clinical-based investigation. OBJECTIVES: To investigate both patient- and caregiver-derived factors contributing to caregiver burden (CB). METHODS: We assessed, in 59 patient-caregiver pairs, various motor, nonmotor, and cognitive symptoms as well as quality of life by standardized tests and questionnaires. Repercussions on the caregiver were evaluated by Zarit Burden Interview, Health-related Quality of Life (HrQoL), Generalized Anxiety Disorder Assessment-7, Patient Health Questionnaire-9, and the Montreal Cognitive Assessment. Transcultural comparison was ensured by validation of the tests in the 3 used languages. RESULTS: Sleep problems and autonomic dysfunction of the patient strongly impact CB (r = -0.414 to -0.335, P < .01) and HrQoL of the caregiver (r = -0.335 to -0.314, P < .05). Higher CB is less strongly linked with patient's motor impairment (P < .05). Large time investment, including nocturnal care in 41% of the caregivers, strongly influences CB (P < .001). The mood, but not the cognitive status, of the caregiver is directly linked to CB and HrQoL of the caregiver (P < .01). CONCLUSION: In PD, the CB is primarily dependent on patients' nonmotor symptoms. Patient care requires considerable time investment and can trigger depression in the caregiver.
BACKGROUND: In Parkinson disease (PD), patients often require burdensome assistance, delivered by informal caregivers (eg, spouse). DESIGN: Prospective questionnaire and clinical-based investigation. OBJECTIVES: To investigate both patient- and caregiver-derived factors contributing to caregiver burden (CB). METHODS: We assessed, in 59 patient-caregiver pairs, various motor, nonmotor, and cognitive symptoms as well as quality of life by standardized tests and questionnaires. Repercussions on the caregiver were evaluated by Zarit Burden Interview, Health-related Quality of Life (HrQoL), Generalized Anxiety Disorder Assessment-7, Patient Health Questionnaire-9, and the Montreal Cognitive Assessment. Transcultural comparison was ensured by validation of the tests in the 3 used languages. RESULTS: Sleep problems and autonomic dysfunction of the patient strongly impact CB (r = -0.414 to -0.335, P < .01) and HrQoL of the caregiver (r = -0.335 to -0.314, P < .05). Higher CB is less strongly linked with patient's motor impairment (P < .05). Large time investment, including nocturnal care in 41% of the caregivers, strongly influences CB (P < .001). The mood, but not the cognitive status, of the caregiver is directly linked to CB and HrQoL of the caregiver (P < .01). CONCLUSION: In PD, the CB is primarily dependent on patients' nonmotor symptoms. Patient care requires considerable time investment and can trigger depression in the caregiver.
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