DESK REVIEWS | 08.01. Informal care workers

DESK REVIEW | 08.01. Informal care workers

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.

References:

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.

References:

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).

References:

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).

References:

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

Just as presented in Part 7, most care for older adults and people with disability, including people with dementia, are provided by unpaid informal carers, but no data on the total numbers is available.

Informal care workers may have formal employment relationships (e.g., with national insurance), but they can also work informally receiving hourly payments, without any employment rights. Because care workers are currently considered to be solely an occupation (without being a regulated profession), they do not have a professional council that can audit the quality of care provided. It is common to find some health care assistants or technical nurses who have difficulty in finding a specialised job to be employed as care workers (formally employed or not); however, in these cases, the nursing council would hold no responsibility upon these individuals.

There is no specific information related to employment condition and safeguarding concerns of informal workers for dementia in India.

There is no specific information related to employment condition and safeguarding concerns of informal workers for dementia-specific care in Indonesia. However, there are several protective measures for informal care workers in Indonesia, especially for domestic helpers. By rule of Ministry of Labour No. 2/2015, referring to International Labour Organisation Convention No.189, domestic workers are stated to have the rights for a safe working condition (Wu, 2014). The rule details sanctions against agencies that provide domestic worker services and exploited this relationship. However, domestic workers are considered by law as “entrepreneur” and, thus, they are not given the same protection that other types of lower-paid employments receive (e.g., factory workers). There is no regulation on rights related to minimum wage, working hours and rest times, leave allowances, communication rights, and written employment contracts.

References:

Wu, T. (2014). The Asian Family, the State and Care for Urban Older Adults: A Comparison of Singapore, China, and Indonesia. July.

Employment for care workers for dementia is often informal (in Kenya unorganized and unregulated domestic workers often referred to as house helps are employed informally (through special arrangements between the individual (caregiver) and the family member) as caregivers). This is most commonly the case in families where family members are unavailable to provide care due to their employment status. The monthly pay for the informal care worker greatly varies depending on the location but without health care insurance or social security (Venas News, 2019). Less than 10% have formal contracts (International Labour Organization, 2017). There is no formal curriculum developed for training on dementia care giving in Kenya and thus the rights of informal care workers for dementia is not recognized at the health care system or at the policy level (World Health Organization, 2017c).

References:

International Labour Organization. (2017). Planning for success: a Manual for domestic workers and their organizations. International Labour Organization (ILO), Jakarta. https://www.ilo.org/wcmsp5/groups/public/—asia/—ro-bangkok/—ilo-jakarta/documents/publication/wcms_579472.pdf

Venas News. (2019). Salary of a Maid/House help in Kenya 2019. VENASNEWS, 24 Janyary. Nairobi, Kenya. https://venasnews.co.ke/2019/01/24/salary-of-a-maidhouse-help-in-kenya-2019/

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

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

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).

References:

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

 

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).

References:

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. https://doi.org/10.1186/1472-6963-14-207

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. https://doi.org/10.1177/1533317514567125

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. https://doi.org/10.1002/gps.1046

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.).

References:

Hoang, L. A., Yeoh, B. S., & Wattie, A. marie. (2012). Transnational labour migration and the politics of care in the Southeast Asian family. Geoforum https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3437558/

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).

References:

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. https://doi.org/10.1093/geronb/60.5.s247

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

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

We have not been able to find any official information about this, but emigration for low-skilled jobs is not common. In times of Brazilian financial crises, there is a small proportion of women who emigrate to other countries to work as informal care workers (legally or illegally) (IEA USP, 2017). Regarding within country migration, this may happen generally from poorest regions (northeast and north) towards the richest ones (southeast). We do not believe this has had an impact on the availability of informal care workers in Brazil.

References:

IEA USP. (2017). Fenômeno da migração também tem relação com idosos—IEA USP. http://www.iea.usp.br/noticias/fenomeno-da-migracao-tambem-tem-relacao-com-idosos

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

Urbanisation and search for better economic opportunities have driven migration. Das and colleagues (2012) discuss the impact of rapid urbanisation on people with dementia in Kerala. The authors argue that urbanisation has caused earning members of families to migrate for better economic opportunities. The authors suggest that, as a result, there are fewer family members to provide care, which leaves many people with dementia with little care options.

References:

Das, S., Ghosal, M., & Pal, S. (2012). Dementia: Indian scenario. Neurology India, 60(6), 618. https://doi.org/10.4103/0028-3886.105197

Middle Eastern countries and Malaysia are major destinations for Indonesian migrants although Hong Kong, Singapore, and Taiwan are becoming increasingly important. The Middle East-bound flow is dominated by female domestic workers migrating on short-term fixed contracts leaving families behind (Tatisina & Sari, 2017). In 2004, women accounted for 94% of registered Indonesian workers in Saudi Arabia. In 2005, more than a million Indonesian female migrants were employed as domestic workers in the Middle East and Asia. There is indication of a “care drain” when women in families are leaving the households to take up caregiving or domestic helper roles in other families.

References:

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.

Rural to urban migration in search of better opportunities for informal care givers or young women may result in minimal workers available to take care of a person especially with late-onset dementia. This could consequently  lead to reduced quality of care for persons with dementia (World Health Organization, 2017c) because of involvement of the available family carers in other household activities. Rural to urban migration for family members may create employment opportunities for informal care givers. However, many of the available domestic workers (untrained but informally given the role of care giving) may not be willing to take care of a person with dementia due to neurological decline and the progressive nature of the disease.

References:

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

Mexico is a country with a long tradition of internal migration and migration to and from the U.S. These migration patterns have left many localities with scarcity of young adults who could be informal carers, but to date, no studies that document this with sound data are available.

According to the ELSI-Brazil (2018) study, out of the total caregivers interviewed (n=828), 25.8% reported stopping working or studying to perform this role, and only 9.2% were paid (non-family members or family members) (Giacomin et al., 2018).

References:

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

This section to be updated soon.

In a 2017 study conducted in Maluku, 74.5% of all family caregivers of people with dementia were women, 49% had high school as the last education attainment, 50.6% with monthly income of more than Rp1,2 million, and all were Muslim. The most common occupation was farmer (43,7%) (International Labour Organization (ILO), n.d.-b). According to ILO, the majority of Indonesian domestic workers work for 6 or 7 days in a week. 71% of adult domestic helpers and 61% of young domestic helpers (aged 10-17 years old) work this number of days. There are more female domestic helpers than men. In 2008, there were 320 female domestic workers for every 100 males. In 2015, there were 292 women to 100 men (International Labour Organization (ILO), n.d.-b). We are unable to provide further information regarding the socio-economic status of domestic or other informal care workers.

References:

International Labour Organization (ILO). (n.d.-b). Pekerja Rumah Tangga Di Indonesia.

Informal care workers (untrained and often given the role of taking care of a person with dementia) who are commonly known as house managers, earn the least salary among employees of all ranks (Venas News, 2019). Most informal workers in high end homes are degree holders while those in the capital or informal settlements are either primary or secondary school leavers who dropped out of school or were unable to afford tertiary education.

References:

Venas News. (2019). Salary of a Maid/House help in Kenya 2019. VENASNEWS, 24 Janyary. Nairobi, Kenya. https://venasnews.co.ke/2019/01/24/salary-of-a-maidhouse-help-in-kenya-2019/

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

The average monthly salary is minimum wage R$ 1,039.00 (US$ 248.60 – 24.01.2020).

This section to be updated soon.

According to ILO, 46% of the adult domestic workers and 29% of the young domestic helpers (aged 10-17 years old) earn IDR 1 million per month (Badan Pusat Statistik, 2019b).

References:

Badan Pusat Statistik. (2019b). Statistik Penduduk Lanjut Usia di Indonesia 2019. xxvi + 258 halaman.

The monthly pay for an informal care worker (in general including those taking care of a person with dementia) greatly varies depending on the location but without health care insurance. For instance, those in informal settlements would be paid 3,500 Kenya Shillings (35USD), Kenya’s capital city-Nairobi (7,000 Kenya Shillings (70USD)), high end homes – but mostly degree holders (15,000 to 40,000 Kenya Shillings (150 to 400USD)). The current regulations demand that the informal workers should be paid at least 13,200 Kenya Shillings (USD 132) (Venas News, 2019).

References:

Venas News. (2019). Salary of a Maid/House help in Kenya 2019. VENASNEWS, 24 Janyary. Nairobi, Kenya. https://venasnews.co.ke/2019/01/24/salary-of-a-maidhouse-help-in-kenya-2019/

 

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