Nadège Costa1, Ansgar Wübker2, Adelaïde De Mauléon3, Sandra M G Zwakhalen4, David Challis5, Helena Leino-Kilpi6, Ingalill R Hallberg7, Astrid Stephan8, Adelaida Zabalegui9, Kai Saks10, Laurent Molinier11, Anders Wimo12, Bruno Vellas3, Dirk Sauerland13, Ingrid Binot3, Maria E Soto3. 1. Medical Information Department, University Hospital of Toulouse, Toulouse, France; UMR1027, University of Toulouse, UPS, Inserm, Toulouse, France. Electronic address: costa.n@chu-toulouse.fr. 2. Rheinisch-Westfälisches Institut für Wirtschaftsforschung, Essen, Germany. 3. UMR1027, University of Toulouse, UPS, Inserm, Toulouse, France; Gerontopole, Alzheimer's Disease Research and Clinical Center, University Hospital of Toulouse, Toulouse, France. 4. Department of Health Services Research, CAPHRI School for Public Health and Primary Care, Maastricht University, Maastricht, the Netherlands. 5. Personal Social Services Research Unit, Faculty of Medical and Human Sciences, University of Manchester, Manchester, United Kingdom. 6. Department of Nursing Science, Faculty of Medicine, University of Turku, Hospital District of Southwest Finland, Turku, Finland. 7. Department of Health Sciences, Lund University, Lund, Sweden. 8. School of Nursing Science, Witten/Herdecke University, Witten, Germany. 9. Fundacíó Privada Clinic per la Recerca Biomedica, Hospital Clinic of Barcelona, Barcelona, Spain. 10. Department of Internal Medicine, University of Tartu, Tartu, Estonia. 11. Medical Information Department, University Hospital of Toulouse, Toulouse, France; UMR1027, University of Toulouse, UPS, Inserm, Toulouse, France. 12. Division of Neurogeriatrics, Department of Neurobiology, Care Sciences and Society, Karolinska Institute, Stockholm, Sweden. 13. Institutional Economics and Health Policy, Witten/Herdecke University, Witten, Germany.
Abstract
OBJECTIVE: To estimate the additional societal costs for people living with dementia (PwD) with agitation in home care (HC) and institutional long-term care (ILTC) settings in 8 European countries. DESIGN: Cross-sectional data from the RightTimePlaceCare cohort. SETTING: HC and ILTC settings from 8 European countries (Estonia, Finland, France, Germany, Netherlands, Spain, Sweden, and England). PARTICIPANTS: A total of 1997 PwD (1217 in HC group and 780 lived in an ILTC) and their caregivers. MAIN OUTCOME MEASURES: Medical care, community care, and informal care were recorded using the Resource Utilization in Dementia (RUD) questionnaire. Agitation was assessed based on the agitation symptoms cluster defined by the presence of agitation and/or irritability and/or disinhibition and/or aberrant motor behavior items of the Neuropsychiatric Inventory Questionnaire (NPI-Q). RESULTS: Total monthly mean cost differences due to agitation were 445€ in the HC setting and 561€ in the ILTC setting (P = .01 and .02, respectively). Informal care costs were the main driver in the HC group (73% of total costs) and institutional care costs were the main driver in the ILTC group (53% of total costs). After adjustments, the log link generalized linear mixed model showed an association between agitation symptoms and an increase of informal care costs by 17% per month in HC setting (P < .05). CONCLUSION: This study found that agitation symptoms have a substantial impact on informal care costs in the community care setting. Future research is needed to evaluate which strategies may be efficient by improving the cost-effectiveness ratio and reducing the burden associated with informal care in the management of agitation in PwD.
OBJECTIVE: To estimate the additional societal costs for people living with dementia (PwD) with agitation in home care (HC) and institutional long-term care (ILTC) settings in 8 European countries. DESIGN: Cross-sectional data from the RightTimePlaceCare cohort. SETTING: HC and ILTC settings from 8 European countries (Estonia, Finland, France, Germany, Netherlands, Spain, Sweden, and England). PARTICIPANTS: A total of 1997 PwD (1217 in HC group and 780 lived in an ILTC) and their caregivers. MAIN OUTCOME MEASURES: Medical care, community care, and informal care were recorded using the Resource Utilization in Dementia (RUD) questionnaire. Agitation was assessed based on the agitation symptoms cluster defined by the presence of agitation and/or irritability and/or disinhibition and/or aberrant motor behavior items of the Neuropsychiatric Inventory Questionnaire (NPI-Q). RESULTS: Total monthly mean cost differences due to agitation were 445€ in the HC setting and 561€ in the ILTC setting (P = .01 and .02, respectively). Informal care costs were the main driver in the HC group (73% of total costs) and institutional care costs were the main driver in the ILTC group (53% of total costs). After adjustments, the log link generalized linear mixed model showed an association between agitation symptoms and an increase of informal care costs by 17% per month in HC setting (P < .05). CONCLUSION: This study found that agitation symptoms have a substantial impact on informal care costs in the community care setting. Future research is needed to evaluate which strategies may be efficient by improving the cost-effectiveness ratio and reducing the burden associated with informal care in the management of agitation in PwD.
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