China is an extreme country. It is extremely big, with an extremely large population, and an extremely booming economy. It is also home to the largest population of people living with dementia in the world, for a total of over 10 million individuals. This number is probably a lot higher since scientist estimate that 90% of total dementia cases to go undetected in China (read more about it: here).
While the country has greatly developed in recent times, also with regards to healthcare, there is still much to be achieved, especially when it comes to dementia care.
Long-term care of people living with dementia in China is still vastly a private family matter, which means that it can create considerable strain on the finances of a family. How much it can cost, and for how long those costs must be faced, however, is not clear.
A study was conducted in 2010, exploring the average caregiver time and cost of home care for Alzheimer’s disease in Beijing, gathering data from 71 individuals with Alzheimer’s and their informal caregivers.
They found out the following things:
- The care-time dedicated to personal activities of daily life (PADL), such as toilet visits, eating, dressing, grooming, walking and bathing, changed greatly with disease progression. Researchers were able to observe a correlation with lower MMSE (Mini-Mental State Examination) scores and higher PADL time, indicating that the more severe the disease was, the greater caregiver time for PADL activities was. The scientists were not surprised by this, since it can be expected that with greater degree of cognitive decline, a person with dementia will become more dependent.
- The care-time dedicated to instrumental activities of daily life (IADL), such as shopping, food preparation, housekeeping, laundry, transportation, taking medication and managing financial matters, did not show the same degree of variation that PADL time, but this may be due to a series of factors. First of all, many caregivers in China hold the perception that people living with dementia should be protected from social activities and instrumental living, and that family members have the duty to take care of those living with dementia. Second, the total IADL time may be hard to calculate itself, since house-sharing (i.e. food preparation, laundry, finance managing) is very common in China. Third, since caring for a family member in need is considered mandatory, many may consider immoral calculating the time spent for care versus the loss of productivity and leisure.
- Spouses were the family members spending the most time as caregivers, and females tended to spend more time compared to males.
- The average cost of informal care for a person living with dementia was 9,675$/year, higher than what previous studies seemed to indicate. The researchers suggest that this is because previous studies were largely based on self-reports, and feelings of economic loss are not taken into consideration when taking care of a family member in Chinese culture.
Source: Wang, H., et al. (2010), Caregiver Time and Cost of Home Care for Alzheimer’s Disease: A Clinic-based Observational Study in Beijing, China, Ageing Int, 35, pp. 153-165