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

Local studies on dementia care usually collect information about the use of domestic helpers (informal care worker) in the household of the people with dementia. Findings from several local studies are identified and summarised below. The proportion of people with dementia receiving care from informal care worker ranges between 26 – 54%.

Yan & Kwok (2011)

Sample: 122 family carers of PwD

Source of participants: District community centres

% hiring an informal care worker: 38%

Chau et al. (2012)

Sample: 300 older adults with both functional and cognitive impairments

Source of participants: Public hospitals, district community centres and day care centres

% hiring an informal care worker: 48%

Kwok et al. (2013)

Sample: 37 family carers of PwD

Source of participants: Memory clinic and hotline services of dementia service centre

% hiring an informal care worker: 54%

Cheng et al. (2013b)

Sample: 142 family carers of PwD

Source of participants: Clinics, social service agencies, and community-dwelling

% hiring an informal care worker :older adults with diagnosis but not known to service 26%

Wong & Shi, 2020

Sample: 1385 dyads of PwDs and family carers

Source of participants: Dementia Community Support Scheme

% hiring an informal care worker: 32%

In view of the significant role of foreign domestic helpers in informal care for older adults, the Social Welfare Department of the Government has implemented the ‘Pilot Scheme on Training for Foreign Domestic Helpers in Elderly Care’ to strengthen the caregiving skills of foreign domestic helpers. The training has started in September 2019 and is delivered by nurses, dieticians, physiotherapists, and occupational therapists from the Department of Health. It consists of 12 core modules on common topics about elderly care and care skills, and 4 elective modules on dementia and stroke. For dementia, the topics are ‘meal arrangements for elderly persons with dementia’, ‘communicating with the elderly persons with dementia’, and ‘managing behavioural and psychological symptoms of dementia’. The course is fully subsidised and aims to train 950 foreign domestic helpers (Social Welfare Department, 2020h).

References:

Chau, P. H., Woo, J., Kwok, T., Chan, F., Hui, E., & Chan, K. C. (2012). Usage of community services and domestic helpers predicted institutionalization of elders having functional or cognitive impairments: A 12-month longitudinal study in Hong Kong. Journal of the American Medical Directors Association, 13(2), 169-175.

Cheng, S. T., Lam, L. C. W., Kwok, T., Ng, N. S. S., & Fung, A. W. T. (2013b). The social networks of Hong Kong Chinese family caregivers of Alzheimer’s disease: Correlates with positive gains and burden. Gerontologist, 53(6), 998-1008.

Kwok, T., Wong, B., Ip, I., Chui, K., Young, D., & Ho, F. (2013). Telephone-delivered psychoeducational intervention for Hong Kong Chinese dementia caregivers: a single-blinded randomized controlled trial. Clinical interventions in aging, 8, 1191-1197. doi:http://dx.doi.org/10.2147/CIA.S48264

Social Welfare Department. (2020h, 19 May 2020). Pilot Scheme on Training for Foreign Domestic Helpers in Elderly Care. Retrieved from https://www.swd.gov.hk/en/index/site_pubsvc/page_elderly/sub_psfdh/

Wong, G. H.-Y., & Shi, C. (2020). Evaluation Study of the Dementia Community Support Scheme. Unpublished Manuscript. Department of Social Work and Social Adminstration. The Universtiy of Hong Kong. Hong Kong.

Yan, E., & Kwok, T. (2011). Abuse of older Chinese with dementia by family caregivers: an inquiry into the role of caregiver burden. International Journal Of Geriatric Psychiatry, 26(5), 527-535. doi:10.1002/gps.2561

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.

The Dementia Worldwide Cost Database (DWCD) (Wimo et al., 2017) estimates the amount of informal care time required based on dementia severity, depending on the level of assistance and oversight required. When weighted by New Zealand prevalence of the different dementia severities, each individual with dementia in the community receives on average 21.7hrs of informal care per week (Deloitte Access Economics, 2017).

In the absence of any NZ specific data, the Deloitte report (Deloitte Access Economics, 2017) used international data to estimate that ~92% of people with dementia in the community receive informal care from one or more carers.

References:

Deloitte Access Economics. (2017). Dementia Economic Impact Report 2016. Available from: https://www2.deloitte.com/nz/en/pages/economics/articles/dementia-economic-impact-report-2016.html.

Wimo A., Guerchet M., Ali G. C., Wu Y. T., Prina A. M., Winblad B., et al. (2017). The worldwide costs of dementia 2015 and comparisons with 2010. Alzheimers Dement. 13(1):1-7. https://doi.org/10.1016/j.jalz.2016.07.150.

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).

References:

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