The Use and Costs of Formal Care in Newly Diagnosed Dementia: A Three-Year Prospective Follow-Up Study

Objective To investigate the use of formal care during the first three years after diagnosis of mild dementia and identify cost-predicting factors. Design Prospective longitudinal study over three years. Setting An incidence-based bottom–up cost-of-illness study where information about formal health care services was drawn from the municipalities' registers during the first three years after the diagnosis of mild dementia. Participants 109 patients with mild dementia at baseline, diagnosed according to consensus criteria based on standardized assessments. Measurement The use of formal care as registered by the municipalities' registration systems. Costs were estimated by applying unit costs, including municipal expenses and out-of-pocket contributions. Clinical data were collected at baseline to identify cost-predicting factors. Results Costs for formal care were increasing from € 535 per month of survival (MOS) at baseline to € 3,611 per MOS during the third year, with a mean of € 2,420 during the whole observation period. The major cost driver (74%) was institutional care. The costs for people with dementia with Lewy bodies (€ 3,247 per MOS) were significantly higher than for people with Alzheimer disease (€ 1,855 per MOS). The most important cost-predicting factors we identified were the living situation, a diagnosis of non-Alzheimer disease, comorbidity, and daily living functioning. The use of cholinesterase inhibitors was related to lower costs. Conclusion Formal care costs increased significantly over time with institutional care being the heaviest cost driver. Studies with longer observation periods will be necessary to evaluate the complete socioeconomic impact of the course of dementia.