Most care for people living with dementia is provided at home, typically by unpaid family members. Measuring the economic and social costs (including health and well-being) of this unpaid care to the individuals providing it and to society is useful for planning how care should be delivered. But we know very little about the costs of unpaid dementia care in low- and middle-income countries (LMICs).
In these settings much of the population is employed in the informal economy and there are few health and social care services available to buy, either publicly or privately. The ways of calculating the costs of care used in high-income countries are not necessarily appropriate. The problem is not just about lacking the data from LMICs to input into the existing methods for calculating costs of unpaid dementia care, it’s that we do not fully understand what data we should be collecting.
We will strengthen capacity to explore the complex reality of unpaid care for people with dementia in all seven STRiDE countries. By talking to individuals providing unpaid care to a family member with dementia about their day-to-day lives and how their lives have changed due to caregiving, allowing them to focus on the things most important to them, we aim to build a better understanding of the costs of providing unpaid care, what factors affect those costs, and how we can design large scale studies to collect appropriate data for measuring these costs across a population.