DESK REVIEWS | 07.02.02.09. How many people with dementia and their carers are served by NGOs?

DESK REVIEW | 07.02.02.09. How many people with dementia and their carers are served by NGOs?

The NGOs in Brazil should provide services to people of all social classes and educational levels. However, the majority of people who are currently supported by the associations have average educational attainment (>8 years of education), are from middle class, and are predominantly from urban areas. The NGOs provide a lot of information, in different ways, and use a variety of different media which can be useful for people despite their educational and economic status. Because of the diversified dissemination tools, it is difficult to estimate the exact number of individuals served. However, media engagement is usually high, and the on-site raising awareness activities reach approximately twenty thousand people a year.

No information regarding their profiles is available.

For subsidised NGO services, breakdowns in relation to dementia is not available.

For self-financing NGO services, for instance, in year 2018/2019, the Hong Kong Alzheimer’s Disease Association provided day services to 512 persons, early detection services to 356 individuals, family caregiver support and public education activities to 16,020 individuals, and professional trainings to 535 professionals or frontline workers in year 2018/2019 (Hong Kong Alzheimer’s Disease Association, 2019).

References:

Hong Kong Alzheimer’s Disease Association. (2019). Annual Report 2018/19. Retrieved from https://87bdf434-9adb-480e-b8f9-9239b0ceb722.filesusr.com/ugd/85d328_ce8758bd23014cda850e2a487b7cb432.pdf

According to information posted on Alzheimer’s Indonesia’s website and social media, as of 2018 they have held 169 caregiver meetings and 225 events of awareness raising and risk reduction activities. This has reached 2,500 people with dementia and 5,000 carers across Indonesia over the whole year (Alzheimer’s Indonesia, 2019b). Although no specific information could be found about the characteristics of people with dementia and their caregivers who access the organisation’s services, in general, the organisation chapters are based in urban areas (Alzheimer’s Indonesia, 2019b).

References:

Alzheimer’s Indonesia. (2019b). Tentang Alzheimer Indonesia.

No data has been sourced, as there is no dementia-specific policy, and the only dementia-specific NGO does not have a national office.

Those that receive these services are mostly those with caregivers who are educated and, because of the location of the organisation, are predominantly living in the capital.

No systematic data is gathered, and therefore this is unknown. A first survey of carers was developed in 2018 by the National Association of Dementia Specialists with the aim of generating a profile (quantitative survey) of carers in the country. The survey was sent locally to all associations and to specialists in the private sector so they could distribute and gather the data within their participants/patients. However, no publications of their results are available.

No data/information found on how many persons living with dementia and their carers are served by NGOs. The South African government relies heavily on the services of NGOs to make up for the deficits in care provisions for older persons (and all vulnerable populations and their service needs more broadly). In general, NGOs support national development priorities and build strong public-private partnerships (Volmink & Van Der Elst, 2017) that target their services at vulnerable populations, providing services and social protection for the socio-economically disadvantaged. Vulnerable populations include historically marginalised population groups, women, children, older persons, and persons with disabilities. However, with regard to the long-term care of older persons, South Africa still reflects the legacy of Apartheid whereby availability and access to residential care services (usually in the more affluent, urban areas) cater primarily for older white population (see audit of residential care facilities report: Department of Social Development, 2010); while promoting familial frameworks of care for black South Africans, and positioning care for older persons as primarily a family responsibility (Lloyd-Sherlock, 2019a).

References:

Department of Social Development. (2010). Audit of Residential Facilities. April, 1–87. Available from: https://social.un.org/ageing-working-group/documents/FINAL%20REPORT%20DSD%20Audit%20of%20Residential%20Facilities%20April2010.pdf

Lloyd-Sherlock, P. (2019a). Long-term Care for Older People in South Africa: The Enduring Legacies of Apartheid and HIV/AIDS. Journal of Social Policy, 48(1), 147–167. https://doi.org/10.1017/S0047279418000326

Volmink, J., & Van Der Elst, L. (2017). The evolving role of 21st Century Education NGOs in South Africa: Challenges and Opportunities. Available from: https://www.mietafrica.com/wp-content/uploads/2017/04/The-evolving-role-of-21st-Century-Education-NGOs-in-South-Africa.pdf