High costs of dementia informal care in low-and middle-income countries

Background: Worldwide, around 50 million people live with dementia, of whom 58% live in low- and middle-income countries (LMICs). It is estimated that 84% of those older adults live with their families. In 2015 global dementia costs were estimated at $ 818 billion. With 40% attributed to informal care (up to 70% for some LMICs). In this study, we aimed at reviewing studies conducted on informal care costs of dementia in LMICs.Method: We searched bibliographic databases and grey literature resources in health, economics and social sciences. Two blind investigators evaluated the publications. Conflicts were discussed and settled with a third investigator. We excluded laboratories experimentations, non-original research and modelling studies.Result: Overall, 6,843 publications were assessed and 15 cost of dementia studies identified. Ten studies investigated informal care costs. They were all conducted in urban areas only, including 31 to 300 participants. Half of the studies mentioned caregiving time without further specification. The others listed items like lost-of-productivity for the caregiver, lost-of-productivity for the patient, activities of daily living, instrumental activities of daily living, supervision. Half of the studies used a standard tool like resource utilization in dementia (RUD) instrument with their own questionnaire to collect informal care. Caregiving time was usually valued by a cost replacement approach. Caregiving hour price was mainly based on the national minimum wage, but also on caregiver salary. Informal care costs, like other dementia costs, tend to increase with disease severity. Annual costs estimates per patient ranged from $145 to $6,926 in mild ; from $453 to $8,872 in moderate; from $521 to $20,076 in severe dementia.Conclusion: Very few studies have been conducted on dementia costs across LMICs, with none so far in Africa. Meanwhile dementia is a major public health problem, it appears urgent to investigate its burden on families to guide health resources allocation.