Christin Schumann1, Panagiotis Alexopoulos2,3, Robert Perneczky1,4,5,6. 1. Department of Psychiatry and Psychotherapy, University Hospital, Ludwig-Maximilians-Universität München, Munich, Germany. 2. Department of Psychiatry, University Hospital of Rion, Faculty of Medicine, University of Patras, Patras, Greece. 3. Department of Psychiatry and Psychotherapy, Technische Universität München, Munich, Germany. 4. German Center for Neurodegenerative Diseases (DZNE) Munich, Munich, Germany. 5. Ageing Epidemiology (AGE) Research Unit, School of Public Health, Imperial College, London, UK. 6. Munich Cluster for Systems Neurology (SyNergy), Munich, Germany.
Abstract
OBJECTIVE: We aimed to investigate factors associated with self- and carer-rated quality of life (QoL) and caregiver burden related to very mild to severe clinical Alzheimer disease (AD). METHODS: One hundred patient-carer dyads were recruited, and assessments of relevant outcomes were performed, including sociodemographic characteristics, QoL, activities of daily living (ADL), cognitive performance, behavioural and psychological symptoms of dementia (BPSD), caregiver burden, and health resource utilisation. RESULTS: There was a strong correlation between carer- and self-rated QoL, with patients consistently rating their QoL higher than caregivers. Duration of illness did not affect the QoL ratings. There was an inverse association between both self- and carer-rated QoL with age, age at symptom onset, impairment of ADL, time spent on assisting the patient, and depression. Both self- and carer-rated QoL ratings were higher if the caregiver was a spouse vs a child. Carer-rated QoL was inversely associated with severity of dementia, BPSD, caregiver burden, and requirement to supervise the patient. The variables age at symptom onset, ADL, and living together with the primary caregiver explained 34.50% of the variance in self-rated QoL, whereas age at symptom onset, ADL, and BPSD explained 48.20% of the variance in carer-rated QoL. For caregiver burden, 26% of the variance was explained by the variables ADL, living together with the primary caregiver, and agitation. CONCLUSION: Our study highlights the need for a stronger focus on QoL in clinical AD research by providing further pieces of evidence on the key determinants, including the important aspect of caregiver burden.
OBJECTIVE: We aimed to investigate factors associated with self- and carer-rated quality of life (QoL) and caregiver burden related to very mild to severe clinical Alzheimer disease (AD). METHODS: One hundred patient-carer dyads were recruited, and assessments of relevant outcomes were performed, including sociodemographic characteristics, QoL, activities of daily living (ADL), cognitive performance, behavioural and psychological symptoms of dementia (BPSD), caregiver burden, and health resource utilisation. RESULTS: There was a strong correlation between carer- and self-rated QoL, with patients consistently rating their QoL higher than caregivers. Duration of illness did not affect the QoL ratings. There was an inverse association between both self- and carer-rated QoL with age, age at symptom onset, impairment of ADL, time spent on assisting the patient, and depression. Both self- and carer-rated QoL ratings were higher if the caregiver was a spouse vs a child. Carer-rated QoL was inversely associated with severity of dementia, BPSD, caregiver burden, and requirement to supervise the patient. The variables age at symptom onset, ADL, and living together with the primary caregiver explained 34.50% of the variance in self-rated QoL, whereas age at symptom onset, ADL, and BPSD explained 48.20% of the variance in carer-rated QoL. For caregiver burden, 26% of the variance was explained by the variables ADL, living together with the primary caregiver, and agitation. CONCLUSION: Our study highlights the need for a stronger focus on QoL in clinical AD research by providing further pieces of evidence on the key determinants, including the important aspect of caregiver burden.
Authors: Eleni Poptsi; Magda Tsolaki; Sverre Bergh; Bruno Mario Cesana; Alfonso Ciccone; Andrea Fabbo; Giovanni B Frisoni; Lutz Frölich; Sara Lavolpe; Anna Giulia Guazzarini; Jacques Hugon; Sara Fascendini; Carlo Alberto Defanti Journal: J Alzheimers Dis Date: 2021 Impact factor: 4.472