DESK REVIEWS | 08.01.03. Please describe the socio-demographic characteristics of informal carers

DESK REVIEW | 08.01.03. Please describe the socio-demographic characteristics of informal carers

Baseline data from a national randomised epidemiological study (ELSI-Brasil) showed that general informal care workers for older people in Brazil (not specifically providing care for people living with dementia) are mainly women, with a mean age of 48 years, married, and who have basic reading and writing skills (Giacomin et al., 2018).


Giacomin, K. C., Duarte, Y. A. O., Camarano, A. A., Nunes, D. P., & Fernandes, D. (2018). Care and functional disabilities in daily activities – ELSI-Brazil. Rev. Saúde Pública, 52(Suppl 2).


The below refers to family caregivers/unpaid caregivers as informal caregivers:

Studies have reported informal caregivers to be primarily women (Brinda et al., 2014; Prince & The 10/66 Dementia Research Group, 2004; Shaji et al., 2003). A study examining family members’ experiences with caregiving of people with dementia in Karnataka (Narayan et al., 2015) found that two-thirds of the caregivers interviewed to be women and the mean age of all caregivers was reported as 51.3 years. With respect to average time spent on care, a study conducted in Tamil Nadu reported that caregivers of older adults spent an average of 38.6 hours per week on care (Brinda et al., 2014).


Brinda, E. M., Rajkumar, A. P., Enemark, U., Attermann, J., & Jacob, K. (2014). Cost and burdenof informal caregiving of dependent older people in a rural Indian community. BMC Health Services Research, 14(1), 207.

Narayan, S. M., Varghese, M., Hepburn, K., Lewis, M., Paul, I., & Bhimani, R. (2015). Caregiving experiences of family members of persons with dementia in south India. American Journal of Alzheimer’s Disease & Other Dementias®30(5), 508-516.

Prince, M., & 10/66 Dementia Research Group. (2004). Care arrangements for people with dementia in developing countries. International Journal of Geriatric Psychiatry, 19(2), 170–177.

Shaji, K. S., Smitha, K., Lal, K. P., Prince, M. J. (2003). Caregivers of people with Alzheimer’s disease: a qualitative study from the Indian 10/66 Dementia Research Network. International Journal of Geriatric Psychiatry, 18(1), 1–6.

In Indonesia, the main primary caregivers for older women are their biological children, while for Indonesian older men, their primary carers are their wives (Magnani & Rammohan, 2006). Data from Indonesian Family Life Survey 2000 shows that unpaid Indonesian caregivers are predominantly women (54.3%), Moslem (88.5%) – of these, 49.6% are married and 41.4% are educated until senior high school or college level (Hoang et al., 2012). Alzheimer’s Indonesia survey found that 74% of family caregiver are the children of the person with dementia, while spouse makes up 10% (Turana et al., n.d.).


Hoang, L. A., Yeoh, B. S., & Wattie, A. marie. (2012). Transnational labour migration and the politics of care in the Southeast Asian family. Geoforum

Magnani, E., & Rammohan, A. (2006). The effect of elderly care and female labour supply in Indonesia. May, 1–33.

Turana, Y., Sani, T. P., & Konny, L. (n.d.). Economic Costs of Dementia in Indonesia.

Similar to other African countries, most care givers are female and range in age from children to older adults and could be family members (spouse, parent, or children) or unorganized and unregulated domestic workers (paid informally in the home of caregiving relatives) (World Health Organization, 2017c). This is because informal provision of care is considered as an obligatory role especially if the person with dementia is a family member making the activity less structured and undertaken in private (Burr et al.,  2005).


Burr, J. A., Choi, N. G., Mutchler, J. E., & Caro, F. G. (2005). Caregiving and volunteering: are private and public helping behaviors linked? The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 60(5), S247–S256.

World Health Organization. (2017c). WHO series on long-term care: Towards long-term care systems in sub-Saharan Africa. Geneva, Switzerland.

No data available as no disaggregated data on carers, whom they care for, and the type/intensity of care provided has been gathered.

In South Africa, informal caregiving largely fall on women with lower socio-economic status (Sevenhuijsen et al., 2003; Yakubu & Schutte, 2018). A study in two communities (N=200) in the Cape Town area revealed that most informal carers in the area had an average age of 47.9 years (SD=11.7), with the majority having some secondary school education [i.e., 54% had grade 8-11, while 31% had grade 12 (matric)], and never married (28.1%) or formerly married (33.7%) (Yakubu & Schutte, 2018).


Sevenhuijsen, S., Bozalek, V., Gouws, A. and Minnaar-Mcdonald, M. (2003). South African social welfare policy: An analysis using the ethic of care. Critical Social Policy, 23(3), 299–321.

Yakubu, Y. A., & Schutte, D. W. (2018). Caregiver attributes and socio-demographic determinants of caregiving burden in selected low-income communities in cape town, South Africa. Journal of Compassionate Health Care, 5(3), 1–10.