Costs of care of agitation associated to dementia in 8 European countries: results from the RightTimePlaceCare study

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 eight European countries. Design: Cross sectional data from the RightTimePlaceCare cohort Setting: HC and ILTC settings from eight European countries (Estonia, Finland, France, Germany, Netherlands, Spain, Sweden and England). Participants: One thousand nine hundred and ninety-seven 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 deshinibition and/or aberrant motor behavior items of the Neuropsychiatric Inventory-Questionnaire (NPI-Q). Results: Total monthly mean costs difference due to agitation were 445€ in the HC setting and 561€ in the ILTC setting (p=0.01 and 0.02, 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 <0.05). Conclusion: This study found that agitation symptoms have a substantial impact on informal care costs in 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 to informal care in the management of agitation in people living with dementia.