DESK REVIEWS | 08.02.03. What are the social norms and traditions of family care? Are there gender roles associated with family care?
DESK REVIEW | 08.02.03. What are the social norms and traditions of family care? Are there gender roles associated with family care?
We have information on informal care used by the general population, not specifically for people living with dementia. According to the first nationally representative study of older people published in 2018 (ELSI-Brazil), 94.1% of the care is provided by family members at home, of which 72.1% are provided by women (Giacomin et al., 2018). An integrative review conducted among Brazilian studies between 2011 and 2016 also revealed that the majority of informal carers of older people (not specifically carers of people living with dementia) are women (usually daughters), aged 56.3 years (on average), married, and who dedicated themselves exclusively to caring (Santos et al., 2017).
In Brazil, there is a social expectation that women (the first choice would be the spouse; and the second, a daughter or daughter-in-law) would be the primary caregiver. Care homes are not accepted by the general population due to stigma and poor regulatory systems of the quality of such care services (Camarano & Barbosa, n.d.). In addition, there is a very limited number of care homes which are public; the majority of them are private services which need to be paid for by the families. This contributes to the maintenance of unpaid care as the main source of care for older people nationally.
Camarano, A. A. & Barbosa, P. (n.d.). Instituições de Longa Permanência para Idosos no Brasil: Do que se está falando? (pp. 479–514). Retrieved July 17, 2019, from http://repositorio.ipea.gov.br/bitstream/11058/9146/1/Institui%C3%A7%C3%B5es%20de%20longa%20perman%C3%AAncia.pdf
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). https://doi.org/10.11606/S1518-8787.2018052000650
Santos, D. F. B. dos, Carvalho, E. B. de, Nascimento, M. do P. S. S. do, Sousa, D. M. de, & Carvalho, H. E. F. de. (2017). ATENÇÃO À SAÚDE DO IDOSO POR CUIDADORES INFORMAIS NO CONTEXTO DOMICILIAR: REVISÃO INTEGRATIVA. SANARE – Revista de Políticas Públicas, 16(2). https://doi.org/10.36925/sanare.v16i2.1181
Unpaid carers are those who provide care on a regular basis (i.e., family members) and are often closely related to the person with dementia. Spouses, sons, daughters, daughters-in-law and parents are the usual caregivers (informal caregivers) (Brodaty and Donkin, 2009). In traditional Indian culture, young adults of child-bearing age, earn and save for their children’s future. The assets gained are utilised for their children’s education, marriage expenses and subsequent costs associated. In this process they often fail to save for their old age. However, it is understood that their children will take care of them as they age. According to Gupta (2009), this understanding arises from the cultural concept of “dharma” (duty) (pp.1042), which emphasises upon this “moral duty” (pp.1042) of adult children to provide care and support for their elderly parents and in-laws. Traditionally, the son of the house marries and brings in a daughter-in-law, who will take care of the aging parents. In the event of frailty and ill health associated with old age, it is this social system that provides a background for age related decline and appropriate care arrangements. In this, she will be assisted by the extended family who will take turns to provide instrumental support, often in the form of assistance for hospital visits, respite for the primary caregiver and so on. This system has been the foundation of dementia care in India for many decades. However, demographic and economic changes are reshaping this familial system of care. In the absence of institutional support for the elderly, many families are struggling to maintain traditional caregiving roles (Srivastava et al., 2016).
Brodaty, H., & Donkin, M. (2009). Family caregivers of people with dementia. Dialogues inClinical Neuroscience, 11(2), 217–228. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/19585957
Gupta, R. (2009). Systems Perspective: Understanding Care Giving of the Elderly in India. Health Care for Women International, 30(12), 1040–1054. https://doi.org/10.1080/07399330903199334
Srivastava, G., Tripathi, R. K., Tiwari, S. C., Singh, B., & Tripathi, S. M. (2016). Caregiver Burden and Quality of Life of Key Caregivers of Patients with Dementia. Indian Journal of Psychological Medicine, 38(2), 133–136. https://doi.org/10.4103/0253-7176.178779
Indonesia’s culture is characterized by strong family bonds and familial piety and, thus, caregiving for people with dementia is perceived as obligatory for family members (Hunger et al., 2019). In addition, the lack of available long-term care services leaves some families no other option but to take up the caregiving responsibilities. Kristanti and colleagues (2019) qualitatively compared the experience of family members caring for relatives with dementia and cancer in Yogyakarta. The main differences identified was that carers of people with dementia missed the loss of their previous relationship with the person they cared for and experienced difficulties in communicating with their relatives. In addition, carers of people with dementia blamed themselves as they believed they contributed to their relatives’ illness. They also found that in Indonesia, family carers invoke words such as “obligation” and “calling” to express reasons to be a caregiver for people with dementia (Kristanti et al., 2019).
Religion also plays a role in shaping the notion of obligation to give care, as some carers believe that good deeds on earth will be rewarded in the afterlife. For adult children, caring for their ailing parents is also a form of showing gratitude or reciprocity (Tatisina & Sari, 2017). Gender plays a significant role in caring for older people and people with dementia, with more women than men taking the role of carers (Tatisina & Sari, 2017).
Hunger, C., Kuru, S. S., & Kristanti, S. (2019). Psychosocial burden, approach versus avoidance coping, social support and quality of life (QOL) in caregivers of persons with dementia in Java, Indonesia: A cross-sectional study. https://doi.org/10.21203/rs.2.16801/v1
Kristanti, M. S., Effendy, C., Utarini, A., Vernooij-Dassen, M., & Engels, Y. (2019). The experience of family caregivers of patients with cancer in an Asian country: A grounded theory approach. Palliative Medicine, 33(6), 676–684. https://doi.org/10.1177/0269216319833260
Tatisina, C. M., & Sari, M. (2017). The Correlation Between Family Burden And Giving Care for Dementia Elderly at Leihitu Sub-District , Central Maluku , Indonesia. 2(3), 41–46.
Family members who provide care in Kenya continue to keep this role because of the fulfillment they get from giving care to their family member. They may also perceive providing care as a biblical mandate or maintain their role to avoid shame (Cappiccie et al., 2017). Additionally, unpaid care work is seen as a women’s domain while working for pay is considered a masculine task hence the high percentage of women assuming caregiving roles (Ferrant et al., 2014).
Cappiccie, A., Wanjiku, M., & Mengo, C. (2017). Kenya’s Life Lessons through the Lived Experience of Rural Caregivers. Social Sciences, 6(4), 145. https://doi.org/10.3390/socsci6040145
Ferrant, G., Pesando, L. M., & Nowacka, K. (2014). Unpaid Care Work: The missing link in the analysis of gender gaps in labour outcomes. OECD Development Centre: Issues Paper. https://www.oecd.org/dev/development-gender/Unpaid_care_work.pdf
Cultural norms towards care for older adults, children, and people with disabilities are still strong, with a large proportion of individuals stating that the family should have the main responsibility for caring. However, economic and social changes in the last years make these expectations increasingly difficult to meet (López-Ortega & Gutiérrez-Robledo, 2015). In a context with practically no publicly funded support for carers available nationally, especially for those caring for older adults and people with disabilities, families/unpaid carers provide the largest proportion of care in the country. Strong gender roles imply that within families, most care is taken up by women. In addition, women frequently take up most of other domestic activities (cleaning, washing, etc.) and increasingly, try to obtain some reconciliation between all these household responsibilities and their own individual development through education and work outside the household (Barrios Márquez AY & Barrios Márquez, 2016; Pedrero Nieto, 2004). As a result of the demographic transition and often perceived as a last-resource option, an increasing number of men have been observed to provide care for their spouses (Giraldo-Rodríguez et al., 2019; Nance et al., 2018).
Barrios Márquez AY, & Barrios Márquez, O. (2016). Participación femenina en el mercado laboral de México al primer trimestre de 2016. Economía Actual, 9(3), 41–45.
Giraldo-Rodríguez, L., Guevara-Jaramillo, N., Agudelo-Botero, M., Mino-León, D., & López-Ortega, M. (2019). Qualitative exploration of the experiences of informal care-givers for dependent older adults in Mexico City. Ageing and Society, 39(11), 2377–2396. https://doi.org/10.1017/S0144686X18000478
López-Ortega, M., & Gutiérrez-Robledo, L. M. (2015). Percepciones y valores en torno a los cuidados de las personas adultas mayores. In L. Gutiérrez Robledo & L. Giraldo (Eds.), Realidades y expectativas frente a la nueva vejez. Encuesta Nacional de Envejecimiento. (pp. 113–133). Instituto de Investigaciones Jurídicas, Universidad Nacional Autónoma de México.
Nance, D. C., Rivero May, M. I., Flores Padilla, L., Moreno Nava, M., & Deyta Pantoja, A. L. (2018). Faith, Work, and Reciprocity: Listening to Mexican Men Caregivers of Elderly Family Members. American Journal of Men’s Health, 12(6), 1985–1993. https://doi.org/10.1177/1557988316657049
Pedrero Nieto, M. (2004). Género, trabajo doméstico y extradoméstico en México. Una estimación del valor económico del trabajo doméstico. In Estudios Demográficos y Urbanos (Vol. 19, pp. 413–446). https://www.redalyc.org/pdf/312/31205605.pdf