DESK REVIEWS | 08.01.01. To what extent are informal care workers used to care for people with dementia
DESK REVIEW | 08.01.01. To what extent are informal care workers used to care for people with dementia
According to the Brazilian Annual Report of Social Information (Relação Anual de Informações Sociais), ‘informal care worker’ was the occupation with the largest growth rate between 2007 and 2017, growing over 500%, from 5,263 to 34,051 registered individuals (Brazilian Ministry of Economy, 2018). However, we do not know how many of these individuals provide care specifically for people living with dementia. It is also common that people who have low-paid jobs also work as informal care workers (generally informally) as a source of extra income.
A study published in 2017 using data from the National Health Care Survey (PNS 2013, in Portuguese) showed that among older people who needed help to carry out at least one daily life activity, 81.8% received informal care only, 5.8% received paid care only, 6.8% received both paid and unpaid care, and 5.7% did not receive any care (Lima-Costa et al., 2017). Care homes in Brazil usually hire informal care workers and these individuals are not necessarily trained to perform that role and ‘learn in service’ about how to care for someone living with dementia. Care workers are commonly hired privately by people from middle and high socio-economic classes. However, we do not have official data on the specific characteristics of these people.
Brazilian Ministry of Economy. (2018). RAIS 2018. http://www.rais.gov.br/sitio/index.jsf
Lima-Costa, M. F., Peixoto, S. V., Malta, D. C., Szwarcwald, C. L., Mambrini, J. V. de M., Lima-Costa, M. F., Peixoto, S. V., Malta, D. C., Szwarcwald, C. L., & Mambrini, J. V. de M. (2017). Cuidado informal e remunerado aos idosos no Brasil (Pesquisa Nacional de Saúde, 2013). Revista de Saúde Pública, 51. https://doi.org/10.1590/s1518-8787.2017051000013
Family remains the main provider of dementia care in India (ARDSI, 2010). Almost all persons with dementia are cared informally by a family member (ARDSI, 2010). In some cases, domestic helpers may be informally employed to support care provision roles.
Alzheimer’s and Related Disorders Society of India. (2010). THE DEMENTIA INDIA REPORT 2010: Prevalence, impact, cost and services for dementia. New Dehli. Retrieved from: https://ardsi.org/pdf/annual%20report.pdf
There is no clear information for dementia-specific care, however, older people have been estimated to receive 4.56 hours of unpaid care per day from their primary caregiver. Primary caregivers are typically the spouse or the biological child of the older person. Older people living in bigger households receive more care time and assistance (Hidayati, 2014).
Hidayati, N. (2014). Perlindungan terhadap Pembantu Rumah Tangga (PRT) Menurut Permenaker No. 2 Tahun 2015. Ragam Jurnal Pengembangan Humaniora, 14(3), 213–217. https://jurnal.polines.ac.id/index.php/ragam/article/view/512
Older persons (similar to persons with dementia) in Kenya rely exclusively on informal care (Applebaum et al., 2013). Families or paid untrained caregivers are often the main caregivers for senior citizens who are not able to live independently, a scenario seen in most African countries (World Health Organization, 2017c).
Applebaum, R., Bardo, A., & Robbins, E. (2013). International Approaches to Long-term Services and Supports. Generations: Journal of the American Society on Aging. 37:1. Pp. 59-65. https://www.researchgate.net/publication/273133611_International_Approaches_to_Long-term_Services_and_Supports
World Health Organization. (2017c). WHO series on long-term care: Towards long-term care systems in sub-Saharan Africa. Geneva, Switzerland. https://www.who.int/publications/i/item/9789241513388
There are indications that persons living with dementia are largely cared for by informal carers, especially family members. A study in the Western Cape found that 79% of patients (n=305) at a memory clinic are cared for by family members (of which 74% reported living with a spouse and/or an adult child), compared to 6% that were cared for at a residential care facility, and 10% living alone (Kalula et al., 2010).
Kalula, S. Z., Ferreira, M., Thomas, K. G. F., De Villiers, L., Joska, J. A., & Geffen, L. N. (2010). Profile and management of patients at a memory clinic. South African Medical Journal, 100(7), 449. https://doi.org/10.7196/SAMJ.3384