DESK REVIEWS | 03.01. Long-term care system organisation

DESK REVIEW | 03.01. Long-term care system organisation

Yes. The Unified Social Assistance System (SUAS) provides some long-term care services to the population, such as long-term care institutions, day centres, palliative care, advance care directives, and others. The system’s coverage is means tested, provided to people without means to pay for their care or without family support (Brazilian Ministry of Citizenship, 2015). Poor people, without family support and with disabling health conditions may benefit from SUAS. Lack of information among the population regarding the existence of such services may be a potential barrier to access. The SUS may also provide some kind of LTC services through the Family Health Strategy (FHS). Although both SUAS and SUS may provide some LTC services, the provision is unsatisfactory and disintegrated.

References:

Brazilian Ministry of Citizenship, A. (2015). Unidades de acolhimento [Página]. MINISTÉRIO DA CIDADANIA Secretaria Especial do Desenvolvimento Social. http://mds.gov.br/assuntos/assistencia-social/unidades-de-atendimento/unidades-de-acolhimento/unidades-de-acolhimento

Hong Kong has a public long-term care (LTC) system, which is a universal system built on the principle of social equity. LTC services in Hong Kong are regulated by the Social Welfare Department and provided by various NGOs under public subvention to elderly citizens (aged 65 and over) with proven care needs which are assessed under the Standardised Care Need Assessment Mechanism for Elderly Services (SCNAMES). The Mechanism covers applications for subsidised community care and residential care services. Assessors under this Mechanism are professionals from various disciplines, such as social workers, nurses, occupational therapists, and physiotherapists, who are required to be trained and to be accredited for the use of the assessment tool. Older people are eligible for subsidised LTC services if they are assessed as moderately or severely impaired (e.g., defined by age, physical and cognitive functional disability, and dependency) under SCNAMES. If subsidised care places are not readily available, eligible older people will be placed on the Central Waiting List on a first-come-first-served basis according to their registration dates and preferences. The major potential barrier to access LTC services in Hong Kong is its insufficient supply, which results in long waiting times for different types of service (Social Welfare Department, 2019a). Since public LTC service in Hong Kong is universal as well as almost fully subsidised and distributed over the territory, factors such as gender, race, income, and geographical location do not contribute as barriers to access LTC services.

References:

Social Welfare Department. (2019a). List of Self-financing Day Care Centres for the Elderly (as at March 2019). Hong Kong: Social Welfare Department, HKSAR Retrieved from https://www.swd.gov.hk/storage/asset/section/616/en/List_of_self-financing_DE_(March_2019).pdf.

There is no organised, public service delivery system in India that specifically addresses long-term care needs. However, several governmental policies and programmes enshrine the principles and components of long-term care, outlining services for chronic illness, injury, disability, and aging. Some examples include the National Mental Health Programme (2017), which supports long-term treatment and rehabilitation for persons with mental illness and the National Programme for Palliative Care (2012), which outlines care for persons with terminal cancer and AIDS.

There are also governmental initiatives targeted for the welfare of older individuals. The National Policy for Older Persons, formulated in 1999, affirms the government’s commitment to the well-being of older persons, and outlines the responsibilities of the family and the State in providing care for the elderly. The goals set out in the policy are operationalised through several programmes and schemes. For instance, the Integrated Programme for Older Persons (IPOP) initiated by the Ministry of Social Justice and Empowerment (MSJE) in 1992, and revised in 2018, offers financial support to governmental and non-governmental organisations providing basic services (food, shelter and healthcare) and institutional and non-institutional care for older persons, encouraging active and productive aging, and engaging in activities including research and advocacy (Ministry of Social Justice and Empowerment (MSJE), 2016; 2018a). In addition, the National Programme for Healthcare of the Elderly (Ministry of Health and Family Welfare (MoHFW), 2011), launched in 2010, aims to provide long-term, comprehensive, and dedicated care services to older people in ways that are affordable and accessible. This programme lists out strategies for preventive, promotive, curative and rehabilitative healthcare for older people, through its integration with the public healthcare systems at primary and secondary levels, as well as the setting up of specialized geriatric medical services at tertiary levels. More recently, the government has re-affirmed its commitment to senior citizens by announcing the implementation of an umbrella scheme known as Atal Vayo Abhyudaya Yojana (AVYAY) (MSJE, 2022). This scheme converges some existing schemes and programmes such as the Rashtriya Vayoshri Yojana (MSJE, 2022).

The limited long-term care services provided by the public health care system include nursing homes and other residential care facilities, day-care centres, and geriatric care in selected public hospitals (Ponnuswami & Rajasekaran, 2017; Sharma & Marwah, 2017). However, as in many developing countries, much of the long-term care mechanisms in India are institutionalised under the healthcare system, with its limited resources and functional capacities (UNESCAP, 2016). For instance, in psychiatric hospitals across the country, many “long-stay” patients are abandoned by families unable to care for them. With the absence of State-run long-term care facilities, hospitals play a custodial role for such patients (Daund et al., 2018). A survey of 43 mental hospitals across India, reported that over 36% of patients had been residing in the facilities for a year or longer, with a large number spending over 25 years in the hospital (Narasimhan, et al., 2019).

In the context of a limited number of long-term care facilities, and healthcare systems struggling to fill this gap, long-term care for older persons is mostly provided by the family. Sociocultural norms and traditions dictate family care for older persons, and the State enforces it by law (United Nations Department of Economic and Social Affairs, 2015). The Maintenance and Welfare of Parents and Senior Citizens Act, 2007 (Ministry of Law and Justice, 2007) defines the obligation of children and relatives in the maintenance of the older person, including the provision of food, clothing, residence, and medical attendance and treatment. According to this law, abandonment or failure to provide for a parent or older person is punishable by fine and imprisonment. Therefore, much of the long-term care in India is provided through unpaid care work by family members (UNESCAP, 2016).

A recent review suggested that a home-care model has several advantages to a hospital-based or nursing home-based model of care in India, as it is less expensive and more attractive to the service users, reducing inappropriate admissions, improving quality of life, and decreasing dependence on resources (Goel & Ramavat, 2018). However, the mere presence of home carers does not assure quality of care and must be supplemented with state-sponsored, integrated health care services to help older people and their carers, and ensure continuity of care (Bhattacharya & Chatterjee, 2017).

Care for older persons is primarily provided by the extended family. Institutional and state support are considered as alternatives for persons in exceptional circumstances such as when they are chronically/terminally ill, bed-bound, or without family support, and under the National Policy on Older Persons (NPOP). Public hospitals carry primary responsibility of care for such persons, with assistance from public charities and voluntary organisations (UNESCAP, 2016).

Traditionally, old age homes were meant for the poor and were mostly run by charities, but more recently, paid services have emerged to cater to older persons from the upper and middle class, who can afford them (Datta, 2017). There is also significant variability in the availability of services across the country due to inter-state differences in demographic characteristics, availability of eldercare infrastructure, and other contexts (Bhattacharya & Chatterjee, 2017).

The central (federal) government relies on the state governments to implement its policies and programmes for the welfare of older people. Programmes such as the National Programme for Health Care for the Elderly (NPHCE), while being novel and comprehensive, have been criticised for failing to consider regional disparities that could possibly impede implementation (Verma & Khanna, 2013). While most states have begun implementing the policies with enthusiasm, the measures adopted, and the standards of implementation are not uniform. Indeed, some states are yet to begin implementation due to financial and operational difficulties (United Nations Population Fund, 2017)

Moreover, UNESCAP (2016) lists other potential barriers to long-term care. Public and private hospitals are not equipped to provide long-term care. The private sector does not encourage patients with long standing illness or functional decline, especially in old age homes. The management tends to request the family/next of kin to withdraw from the service as they are ill-equipped and not trained to provide care for severe health conditions. The Indian health care system lacks financial mechanisms to support long-term care. Most of the hospices available are cancer-oriented which lack expertise to care for people with other illnesses.

References:

Bhattacharya, T. and Chatterjee, S. C. (2017). Exploring elder care in different settings in West Bengal: a psycho-social study of private homes, hospitals and long-term care facilities. International Journal of Psychological & Behavioural Sciences, 11(6), 1639-44

Datta A. (2017) Old Age Homes in India: Sharing the Burden of Elderly Care with the Family. In: Irudaya Rajan S., Balagopal G. (eds) Elderly Care in India. Springer, Singapore

Daund, M., Sonavane, S., Shrivastava, A., Desousa, A., & Kumawat, S. (2018). Mental Hospitals in India: Reforms for the future. Indian Journal of Psychiatry60(Suppl 2), S239.

Goel, A. & Ramavat, A. S. (2018). Absence of a formal long-term healthcare system for a rapidly ageing population is likely to create a crisis situation in the near future. Natl Med J India, 31, 1034.

Khurana, M. (2013). COVER STORY: Reaching the Unreached in Uttarakhand Donations to HelpAge India for Uttarakhand Flood Relief are eligible for 50% tax exemption under section 80G of Income Tax Act 1961. (Applicable in India only) (Vol. 12).

Kumar, P., Das, A., & Rautela, U. (2012). Mental and Physical Morbidity in Oldage Homes of Lucknow, India. DELHI PSYCHIATRY JOURNAL.

Ministry Of Health And Family Welfare (MHFW). (2011). OPERATIONAL GUIDELINES National Programme For Health Care Of The Elderly (NPHCE). Available from https://main.mohfw.gov.in/organisation/Departments-of-Health-and-Family-Welfare/national-programme-health-care-elderly-nphce

Ministry of Law and Justice. (2007). Maintenance and welfare of parents and senior citizens Act. Government of India.

Ministry of Social Justice & Empowerment (MSJE). (2018a). Integrated Programme for Senior Citizens. New Delhi. Government of India. Available from: http://socialjustice.nic.in/writereaddata/UploadFile/IPSrC%20English%20version.pdf

Ministry of Social Justice and Empowerment (MSJE). (2016). INTEGRATED PROGRAMME FOR OLDERPERSONS A Central Sector Scheme to improve the quality of life of the Older Persons. New Delhi . Available from: http://socialjustice.nic.in/writereaddata/UploadFile/IPOP%202016%20pdf%20document.pdf

Ministry of Social Justice and Empowerment (MSJE). (2022). Scheme for Welfare of Senior Citiizens. Press Information Bureau. Available from: https://pib.gov.in/PressReleaseIframePage.aspx?PRID=1806506

Ministry of Statistics and Programme Implementation (2016). Elderly in India – Profile and Programmes 2016 New Delhi Central Statistics Office, Government of India:26–9

Narasimhan, L., Mehta, SM., Ram, K., Gangadhar, B.N., Thirthalli, J., Th­anapal, S., Desai, N., Gajendragad, J., Yannawar, P., Goswami, M., Sharma, C., Ray, R., Talapatra, S., Chauhan, A., Bhatt, D., Neuville, E., Kumar, KVK., Parasuraman, S., Gopikumar, V. and NILMH Collaborators Group. (2019). National Strategy for Inclusive and Community Based Living for Persons with Mental Health Issues. Th­e Hans Foundation: New Delhi

National Mental Health Programme. (2017). The Mental Health Care Act. Available from: https://www.nhp.gov.in/national-mental-health-programme_pg

Ponnuswami, I., & Rajasekaran, R. (2017). Long-term care of older persons in India: Learning to deal with challenges. International Journal on Ageing in Developing Countries (Vol. 2). Available from: https://www.inia.org.mt/wp-content/uploads/2017/09/2.1-8-India-59-to-71-1-rev-RFB.pdf

Sharma, R. & Marwah, E. B. (2017). Rising demand for community based long-term care services for senior citizens in India. Indian Journal of Gerontology, 31 (4), 519-528.

UNESCAP. (2016). Long-term Care of Older Persons in India. Working Paper Ageing Long Term Care India v1-2.

United Nations Department of Economic and Social Affairs. (2015). GROWING NEED FOR LONG-TERM CARE. Available from: https://www.un.org/esa/socdev/ageing/documents/un-ageing_briefing-paper_Long-term-care.pdf

United Nations Population Fund. (2017). ‘Caring for Our Elders: Early Responses’ – India Ageing Report – 2017. UNFPA, New Delhi, India

Verma, R., & Khanna, P. (2013). National program of health-care for the elderly in India: A hope for healthy ageing. International Journal of Preventive Medicine, 4(10), 1103–1107. Available from: http://www.ncbi.nlm.nih.gov/pubmed/24319548

Indonesia is in the process of developing a public Long-Term Care (LTC) system. Policies developed under the umbrella of long-term care fall into services that would commonly be identified as social security mechanisms (i.e. old age pensions), and services that fall under the realm of health care (i.e. services and interventions to delay or reduce the number of people with long-term care needs), while other care services (i.e. day care, respite care, institutional care) are limited in availability (UNESCAP, 2014, p.12). BAPPENAS describes this split between health care and social security mechanisms as the provision of financial (social security) and non-financial (health care, long-term care, and legal protection) (Kementrian Koordinator Bidang Pembangunan Manusia dan Kebudayaan RI, 2020).

The core features of the Indonesian long-term care system are based on the Puskesmas (community health centres providing primary health care services) and Posyandu (integrated community health service posts that focus on preventive health services provided by midwives, nurse assistants, vaccinators, and health volunteers who visit communities monthly) system. Both types of services fall under the regulation of local governments (Pusat Data dan Informasi Kementerian Kesehatan RI, 2014). In 2009, the Ministry of Health and the Ministry of Home Affairs declared the Puskesmas Santuan Lansia to be the first-line providers of health and long-term care for older people. Furthermore, between 2018-2019, the Ministry of Health has issued a LTC guideline for the Puskesmas (Kementerian Kesehatan RI Direktorat Jenderal Kesehatan Masyarakat, 2018) that provide directions on the implementation of LTC in Puskesmas.

Even though the Ministry of Health and the Ministry of Home Affairs already in 2009 declared the Puskesmas Santuan Lansia to the core service provider for older people, insufficient support from provinces and cities meant that only around 42.3% of Puskesmas were able to implement the concept by 2011 (Badan Litbangkes Kementrian Kesehatan RI, 2012). Furthermore, it has been reported that there is a shortage in services provided through Puskesmas in the East of the country and in more rural regions due to concerns about workforce availability and quality (Kadar et al., 2013). Shortages could also be found in the provision of Posyandu Lansia services. The Ministry of Health stated that in 18 out of 34 provinces there were no Posyandu Lansia services available, and 11 provinces did not provide health services through the Puskesmas Ramah Lansia (Pusat Data dan Informasi Kementerian Kesehatan RI, 2017).

Ministry of Health Data (from December 2018) states that there were Puskesmas and Posyandu Lansia available in all provinces (Kementerian Kesehatan Republik Indonesia, 2019a). However, a study from 2018 suggests that there are varying levels of functioning among posyandu lansia across provinces (Pratono & Maharani, 2018). There is anecdotal evidence from the cities Malang and Surabaya about the lack of regular services, volunteers, and health workers, which suggests limited interest and commitment by the community members in the posyandu lansia. Posyandu lansia also sometimes charge additional transaction costs although services are supposed to be free. Based on data from the Program Report of the Directorate of Family Health (2017), there were 3,645 Puskesmas that provided santun lansia services (Kementerian Kesehatan Republik Indonesia, 2018).

Lack of coordination on national level, public underfunding, and high out-of-pocket expenditure are creating barriers to accessibility and availability of services for older people in Indonesia, where the government allocated only about 0.1 per cent of GDP (2006-2010) to long-term care (Rahardjo & Yerly, 2014; Scheil-Adlung, 2015, p.xi). The report further elaborates, that in Indonesia, as of 2015, 87.3% of the population aged 65 and older were excluded from accessing LTC services because of financial resource deficits (Threshold, 1.451.8 PPP$) (Scheil-Adlung, 2015, p.83).

Regulations and bills

Between 2009 and 2018 nine regulations and bills have been activated under the umbrella of long-term care to support older people with care needs.

In addition, the provision of long-term care to older people was included in the National Medium-term Development Plan 2015-2019 and is expected to also be included in the consecutive long-term development plan. Responsibility for LTC policy was given to the National Commission for Older People, which was established in 2004 (UNESCAP, 2014).

References:

Badan Litbangkes Kementrian Kesehatan RI. (2012). Ringkasan Hasil Riset Fasilitas Kesehatan (Rifaskes) 2011.

Kadar, K. S., Francis, K., & Sellick, K. (2013). Ageing in Indonesia – Health Status and Challenges for the Future. Ageing International, 38(4), 261–270. https://doi.org/10.1007/s12126-012-9159-y

Kementerian Kesehatan Republik Indonesia. (2018). Provil Kesehatan Indonesia 2017 (Vol. 1227, Issue July). https://doi.org/10.1002/qj

Kementerian Kesehatan Republik Indonesia. (2019a). Data Dasar Puskesmas.

Kementerian Kesehatan RI Direktorat Jenderal Kesehatan Masyarakat. (2018). Pedoman untuk Puskesmas dalam Perawatan Jangka Panjang bagi Lanjut Usia. Kementerian Kesehatan RI.

Kementrian Koordinator Bidang Pembangunan Manusia dan Kebudayaan RI. (2020). Tanggapan Terkait White Paper “Pemenuhan hak-hak lansia untuk hidup setara, sejahtera dan bermartabat.” Presentasi.

Pratono, A. H., & Maharani, A. (2018). Long-Term Care in Indonesia: The Role of Integrated Service Post for Elderly. Journal of Aging and Health, 30(10), 1556–1573. https://doi.org/10.1177/0898264318794732

Pusat Data dan Informasi Kementerian Kesehatan RI. (2014). Situasi dan analisis lanjut usia (pp. 1–7).

Pusat Data dan Informasi Kementerian Kesehatan RI. (2017). Analisis Lansia di Indonesia.

Rahardjo, T. B. W., & Yerly, A. N. (2014). A trend for establishing community care system in Indonesia. Forum on Conception of Harmonization of Long Term Care Certificate Between Japan and Indonesia.

Scheil-Adlung, X. (2015). Long-term care protection for older persons: A review of coverage deficits in 46 countries. In Extension of Social Security (Issue 50). http://www.ilo.org/wcmsp5/groups/public/—ed_protect/—soc_sec/documents/publication/wcms_407620.pdf

UNESCAP. (2014). Report of the Regional Expert Consultation on Long-term Care of Older Persons. https://www.unescap.org/sites/default/files/Report%20Reg-Consultation.pdf

At the launch of the NHIP Green Paper (2019), the Minister of Health and Wellness, the Hon. Dr Christopher Tufton, addressed the question of whether long-term care services were being considered as a benefit under the national health insurance scheme. While the finalisation of particular services that will be covered by this scheme are yet to be determined following upcoming stakeholder consultations and may include not only long-term care facilities, but also services to support in-home care, Minister Tufton noted that the public health system is currently piloting a private-public partnership with private care homes for a residual system to address ‘social cases’ of persons who are abandoned at public hospitals by family members.

Later in 2019, this partnership was further elaborated on with the announcement of the Ministry of Health and Wellness’ decision to pursue legal action against families of the approximately 200 persons currently in hospital beds across Jamaica who should in fact be in an infirmary or released to their relatives, but their relatives have abandoned them, in some cases for as long as seven years. It is hoped that such court action will compel relatives to ‘take care of their own’ (Jamaica Gleaner, 2010). This challenge indicates the consequences of a lack of a public long-term care system in Jamaica that can adequately meet the needs of older persons.

References:

The Jamaica Gleaner. (2010, November 10). Want to be caregiver | Lead Stories |. https://jamaica-gleaner.com/gleaner/20101109/lead/lead93.html

 

The Constitution of Kenya 2010, Article 57, mandates the state to take steps to make sure that the rights of older people are protected (Government of Kenya, 2010). Kenya’s Vision 2030 also aims to establish a Consolidated Social Protection Fund which is relevant to the care and protection of older persons through cash transfer programmes. Other vulnerable groups will also be a beneficiary to these funds (discussed under overall country context – social protection schemes) (Kenya vision 2030, 2019). The disbursement of funds to these groups is ongoing.

The care and protection of older members of society bill, 2018 part III provides for the care of older members of society, defined as those who have attained the age of 60 years. Specifically, it provides the establishment and implementation of community and home-based care programmes for older members by the government and prohibits their abuse (Republic of Kenya, 2018b).

At the moment, Kenya is developing a universal health coverage policy but older people have not been adequately factored into it (“Kenya Trends in ageing and health,” n.d.). The care of older people living with disabilities and chronic health problems is mainly undertaken by unpaid family members. Older people are expected to receive health care from public general hospitals, as there is only one geriatrician based in the national government (policy level) in Kenya. By 2017, 16 residential care homes that are run by religious organizations and mostly located in urban or peri-urban areas were unaffordable to family members. As a result, some homes become underutilized. For example, during a 2016 audit of residential institutions, the Fatima Home with a capacity of 20 persons had only housed three older persons (National Gender and Equality Commission, 2016). It is not clear from literature the current average bed capacity of residential homes in Kenya. In addition, so far no long-term care public insurance scheme is available in Kenya as of yet, limiting access to costly private health insurance to those who can afford it (L. Maina, 2017).

High levels of poverty, distantly located health facilities, poor attitude of health workers and a lack of confidence in the services provided in health facilities are some of the factors deterring older persons from accessing services in public health care settings (Waweru et al., 2003). Furthermore, older people are expected to receive the same public health services provided for all life cohorts, there are no specific arrangements in place for older people. This has resulted to increase in confidence in spiritual care (Waweru et al., 2003). In future, strategic attention should be paid  to geriatric health requirements or the ability to tackle one or more chronic illnesses at health facilities (Wairiuko et al., 2017).

The Focus Area of The IX Session of the Open-Ended Working Group on Ageing, established by the General Assembly on 21st December, 2010  for the purpose of strengthening the protection of the human rights of older persons identified the following challenges facing older people in accessing Long Term Care (Republic of Kenya, 2016b), page 3-4:

  • “Prohibitive medical costs and limited Human Resource and health center capacities” – page 3
  • “Communities and family members have very little (indigenous) knowledge on how to manage long-term care” – page 3
  • “Facilities available do not meet the required standards” – page 3.
  • “The private institutions are very expensive to be afforded by many” – page 3.
  • “High costs of diagnostic, medication and transport costs to access LTC services” – page 3
  • “Assistive devices are expensive, should one need one” – page 3.
  • “There are few formal centers offering long term care. Most of them depend on the social systems i.e., relatives for long term care” – page 3.
  • “Non-existence of a regulatory or policy framework on long term care system”- page 3.
  • “Ageism that results to stigmatization and discrimination of older people by society and policy makers” – page 3.
  • “Lack of adequate resources hinder the provision for long term care and support” – page 3.
  • “Lack of information and understanding on LTC and wider rights of older people by the older people themselves, community and policy makers. Manifested in lack of demand for action by the citizens and older people, which is necessary to improving the policy and programmatic change” – page 4.

The working group, considers the existing international framework for the human rights of older persons and identifies possible gaps and solutions (United Nations Department of Economic and Social Affairs (UNDESA), 2019).

References:

Government of Kenya. (2010). The Kenya Constitution, 2010. Kenya Law Reportshttp://www.kenyalaw.org/lex/actview.xql?actid=Const2010

Kenya vision 2030. (2019). Consolidated Social Protection Fund.  https://vision2030.go.ke/project/consolidated-social-protection-fund/#

Maina, L. (2017). How Kenya can ensure adequate health care for its older people. The Conversation, 25 January. https://theconversation.com/how-kenya-can-ensure-adequate-health-care-for-its-older-people-70163

National Gender and Equality Commission. (2016). Audit of Residential Institutions of Older Members of Society in Selected Counties of Kenya. Nairobi, Kenya. https://www.ngeckenya.org/Downloads/Audit%20of%20Residential%20Homes%20for%20Older%20Persons%20in%20Kenya.pdf

Republic of Kenya. (2016b). Focus Area of the IX Session of the Open-Ended Working Group on Ageing. Republic of Kenya. Nairobi, Kenya. https://social.un.org/ageing-working-group/documents/ninth/Inputs%20Member%20States/Kenya_LTC.pdf

Republic of Kenya. (2018b, June). The Care and Protection of Older Members of Society Bill, 2018. Kenya Gazette Supplement No. 73 (Senate Bills No. 17), pp. 333–363. Nairobi, Kenya. http://www.parliament.go.ke/sites/default/files/2018-08/The%20Care%20and%20Protection%20of%20Older%20Members%20of%20Society%20Bill%2C%202018.pdf

United Nations Department of Economic and Social Affairs (UNDESA). (2019). Open-ended Working Group on Ageing for the purpose of strengthening the protection of the human rights of older persons.

Wairiuko, J. M., Cheboi, S. K., Ochieng, G. O., & Oyore, J. P. (2017). Access to Healthcare Services in Informal Settlement: Perspective of the Elderly in Kibera Slum Nairobi-Kenya. Annals of Medical and Health Sciences Research, 7(1), 5–9. https://www.amhsr.org/articles/access-to-healthcare-services-in-informal-settlement-perspective-of-the-elderly-in-kibera-slum-nairobikenya.html

Waweru, L. M., Kabiru, E. W., Mbithi, J. N., & Some, E. S. (2003). Health status and health seeking behaviour of the elderly persons in Dagoretti division, Nairobi. East African Medical Journal, 80(2), 63–67. https://doi.org/10.4314/eamj.v80i2.8647

In Mexico, strategies for dependent or disabled people are practically inexistent. The country does not have a publicly funded long-term care system at national level nor specific public services that provide care for people with loss of functional ability/capacity (disabled); and, as it will be described below, Mexico only offers very few day-centre services for older adults.

Regarding care legislation, there are no specific laws that guarantee the right to receive care, regardless of the age group or condition for which care is needed, or that give the health and social security system responsibility to provide them. Thus, there is a clear lack of public programs at the national/federal level that aim at providing care services for those with care needs, nor for their carers. On the other hand, strategies have been developed to address aging and disability that seek to influence the well-being of these population groups, encourage their participation, and maintain or recover their independence, but without intending to guarantee or provide care to these groups of the population.

While at national level no long-term care system is in place, there are different working groups collaborating towards the generation of a National Care System. Two main groups are working together, one led by the National Institute for Women (INMUJERES) focused mainly on a gender equity perspective. A second one within the health system is led by the General Health Council, CSG (Consejo de Salubridad General) at the Ministry of Health and the National Institute of Geriatrics (INGER) and focuses on attending care needs of people with disabilities and their carers. The work led by INMUJERES has recently focused on generating an analysis of care needs whilst targeting three groups: infants, people with disabilities, and older adults. Their aim is to raise awareness on the need to establish care as a right in local legislations as well as to identify current public programmes where new strategies could be included to generate a National Care System[1]. On the other hand, in some forums (but still not in official communications), other institutions like the Social Security Institute IMSS, have presented their efforts towards generating care services for their affiliates, particularly older adults and people with disabilities.

After slightly more than a year of meetings with representatives from all the institutions/sub-systems that form the National Health System within the CSG-INGER collaboration, an agreement was achieved at the national level to define, design, and implement long-term care health policies within the National Health System and health and social security institutions. This agreement was published in the National Official Gazette[2] in August 2018.

At the moment, both groups are joining efforts and exploring future pathways to generate one system where the health and social development work together. In 2016, Mexico City, changed its administrative status from a Federal District to a Federal Entity (state) at the local level. This changes its legal and administrative rights and obligations within the Federal Republic.

As part of these changes, Mexico City has now its own stale-level approved Constitution[3] since 2017.  This represents the first to include the right to care in the country (Article 9, Item B). As for now, the specific policies and programmes that will be implemented are in the planning stage and will constitute the first universal (within the City) and publicly funded programs to support those who need care and their carers.

At the moment, there are only two strategies, one at the Mexican Institute of Social Security (IMSS) and one from Mexico City’s Health Secretariat that provide domiciliary services for people with functional disabilities. First, the IMSS Chronic Patient Care Program which began in 1990, aims at providing follow-up medical care after hospital discharge and/or palliative care for patients in terminal stages (Espinel-Bermúdez et al., 2011). According to the IMSS’ reports, the main conditions treated are chronic degenerative diseases and their sequelae, such as cerebral vascular type, chronic obstructive pulmonary disease (COPD), heart failure, chronic kidney failure, Alzheimer’s disease, and terminal cancer conditions.

Secondly, in Mexico City, the program ‘The Doctor in your House’ (Medico en tu Casa), has been in place since 2016. The main goal of the program is to provide ambulatory care by multidisciplinary staff, to all vulnerable individuals who, due to their disease condition or disability, cannot attend medical services. However, under the new federal government administration, this program is being modified and its specific attributions and scope is still unknown.

The absence of a public long-term care system, of a national level regulation agency and the lack of a national mandatory registry of institutions in Mexico has generated an absence of precise information on the total number of public or private permanent and temporary care institutions available in the country. As a result, in order to gather information on such institutions, there are few sources that can be consulted; however, data can be over or underestimated. Some of these sources are described below within the public and private services subheadings in items 03.01.03 and 03.01.04.

[1] http://aga.funcionpublica.gob.mx/aga/Home/Documento?doc=2.1%20RENAC.pdf

[2] Diario Oficial de la Federación ACUERDO por el que se establecen las acciones para el diseño e implementación de la política pública en salud para el otorgamiento de cuidados a largo plazo por las instituciones públicas del Sistema Nacional de Salud, published on 2 August 2018. [https://www.dof.gob.mx/nota_detalle.php?codigo=5533729&fecha=02/08/2018 ]

[3] Constitución Política de la Ciudad de México, p. Article 9, Item B. Right to care: Every person has the right to the care that sustains his life and gives him the elements material and symbolic to live in society throughout his life. The authorities will establish a care system that provides public services universal, accessible, relevant, sufficient and quality and develop policies public. The system will give priority attention to people in situation of dependency due to illness, disability, life cycle, especially childhood and old age and those who, in an unpaid way, are in charge of their care.

References:

Espinel-Bermúdez M.C., Sánchez-García, S., Juárez-Cedillo, T., García-González, J.J., Viveros-Pérez, A., & García-Peña C. (2011). Impacto de un programa de atención domiciliaria al enfermo crónico en ancianos: calidad de vida y reingresos hospitalarios. Salud Publica Mex , 53, 17–25. https://www.redalyc.org/pdf/106/10619407004.pdf

 

New Zealand has a public long term care system, coordinated by the Needs Assessment Service Coordination (NASC) agency, which is contracted by the MoH Disability Support Services unit to allocate ministry funded disability support services and to provide assistance with access to other supports (NASC, n.d.). This is a universal service available to all NZ citizens or residents who qualify for publicly funded health services.

Every person who wishes to receive funded disability support services must have a needs assessment to assess their requirements and this is prioritised based on need. The NASC role is to work with individuals and their families to identify their support needs, outline what services are available, and determine their eligibility for publicly funded support services. Any help received from existing supports such as other family members is taken into account during the assessment. Some services such as household support are means tested, but others including “personal cares” (e.g., assistance with showering, dressing, medications) are not.

References:

Ministry of Health. (2011). Needs Assessment and Support Services for Older People: What you need to know. Available from: https://www.health.govt.nz/system/files/documents/publications/support-services-older-plev2.pdf.

Needs assessment Service Coordination (NASC). (n.d.). Needs assessment Service Coordination services (website). Available from: https://www.health.govt.nz/your-health/services-and-support/disability-services/getting-support-disability/needs-assessment-and-service-coordination-services

 

Yes.  South Africa provides old-age pensions to individuals who are financially needy (WHO, 2017).  All older persons are entitled to free primary healthcare, while access to hospital care is only free for those who do not have the means to pay for these services – including long term care services such as residential care services. Long-term care in South Africa reflects the legacy of Apartheid whereby availability and access to residential care services (usually in the more affluent, urban areas) cater primarily for the older white population, while promoting family care for black South Africans and positioning care for the older persons as primarily a family responsibility (Lloyd-Sherlock, 2019a).

Long-term care services in South Africa are characterised with much variation in services available between the public and private sector. The South African government funds public long-term care for older persons, for which the majority of care is through residential facilities (WHO, 2017). Public services cater only for a small portion of the older population and are largely confined to urban areas (WHO, 2017). Persons who seek residential care, need to undergo a rigorous assessment process in which only those eligible will be admitted (i.e., frail and destitute). Demand for these services is beyond what the public sector can cater for and long waiting lists are significant barriers for eligible individuals accessing long-term care (WHO, 2017). Private care limits access to services for those who can afford it, and as a typical feature of the private sector in South Africa, it is expensive and inaccessible to most South Africans. Another barrier refers to the lack of training among nurses at primary healthcare level that undermines an integrated health and social care system for older persons, especially in rural areas (Lloyd-Sherlock, 2019a).

All registered facilities can apply for subsidies for individual residents, with eligibility restricted to the frail and destitute (South African Government, 2019). Reductions in subsidy amounts paid out by the Department of Social Development have in itself become a barrier to care as they have led facilities to fail to provide services for the poor and frail individuals (who are eligible), while opting to admit more wealthier persons (who are able and can pay themselves) (Lloyd-Sherlock, 2019a). Currently DSD subsidies cover 51.9% of costs of care for frail care, with non-profit organisations left to cover the remaining costs amounting to R3800 per person (TAFTA, 2019b).

Furthermore, historical racial discriminatory practices and cultural preferences in admissions restrict racial transformation and the care of all population groups at facilities. An audit of residential care homes in 2010 revealed that: (1) Only 4% of residents across 405 homes were black; (2) 10 homes physically separated residents between white and black with clear evidence that residents were not receiving the same standard quality of care; (3) in some instances family members threatened to remove older persons should homes be integrated; and (4) that there were evidence of very little sensitivity and knowledge displayed of different religions and cultural practices (e.g., language and food preferences) (Department of Social Development, 2010; Lloyd-Sherlock, 2019a; WHO, 2017).

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

South African Government. (2019). Old age pension. 1–7. http://www.services.gov.za/services/content/Home/ServicesForPeople/Socialbenefits/oldagegrant/en_ZA#Cost

TAFTA. (2019b). The Care “Gap.” https://www.gov.za/services/retirement-and-old-age/admission-older-persons-residential-facilities

WHO. (2017). Towards long-term care systems in sub_Saharan Africa: WHO series on long-term care on healthy ageing. Available from: https://www.who.int/publications/i/item/9789241513388

In the absence of a unified LTC system in Brazil, LTC services are provided through health and social care systems separately, and in a few instances, jointly. These are mostly delivered through the Family Health Strategy (FHS). For example, those who are bed bound may receive home visits from healthcare professionals and community health workers routinely. LTC may also be provided via high and medium complexity home care services through the program “It is better at Home” (Melhor em Casa). Those who are registered with this service have continuous support from the care home teams via routine appointments and via telephone if needed. Services offered to older people should follow the guidance stated in a document that establishes an integrated care pathway for older people in the SUS (Brazilian Ministry of Health, 2018e, 2019d, 2019h).

As part of SUS, people living with disabilities should receive integrated healthcare such as rehabilitation, basic and complex treatments, etc. (Brazilian Ministry of Health, 2019q). SUAS provides LTC within long-term institutions for people aged 60 years and over who are independent, or who have some degree of dependence, who do not have the means to live in a family environment, in their own home, or who have suffered abuse, violence, negligence, or abandonment. However, moving to those institutions are considered by the government a measure of last resort and the number of bed available are very limited (Brazilian Ministry of Citizenship, 2015).

The SUAS also provides the “Special Social Protection Service for Disadvantaged People, Older People, and their Families” (Serviço de Proteção Social Especial para Pessoas com Deficiência, Idosas e suas Famílias). This service aims to help older people with some degree of dependence, people living with disabilities, their carers, and those who have suffered violation of their rights (for example: lack of proper care from their carers, discrimination from family members, high level of stress from the carer etc.). The service aims to identify the needs of the older persons and their carers and make it feasible for them to access cash transference programmes, cultural and leisure activities, and public policy services. The service is offered by professionals and may be delivered in patients’ homes, day centres, Special Reference Centre for Social Assistance (CREAS) or Referenced Units. The service can be accessed following spontaneous demand or by referral from other social-assistance services (Brazilian Ministry of Citizenship, 2014). We could not identify data on the proportion of the population uses the public long-term care system. However, it is known that in 2014, 53,600 older people were living in long-stay institutions affiliated to SUAS (Alcantara et al., 2016).

In Brazil, very often family members are the main providers of care (unpaid care). However, private options such as paid carers, day care centres (getting quite popular in the last years) and long-stay institutions (the most traditional model of long-term care in Brazil, after the provision of care by family members) are available in the country (Alcantara et al., 2016). Data about the size of the private sector could not be found. However, according to data from the Institute for Applied Economic Research (IPEA), in 2017 there were 2,163 long-stay institutions in Brazil (33% were philanthropic, 64% were private and 0.03% were public/mixed) (Camarano, 2017). There are differences in the characteristics of people using public and private institutional long-term care. While some older people live in public long-stay institutions usually because of lack of financial and family support, older people with better financial resources are institutionalized in private institutions mainly when they present more severe health situation (Camarano, 2017).

References:

Alcantara, A. de O., Camarano, A. A., & Giacomin, K. C. (2016). Política Nacional do Idoso: Velhas e Novas Questões. http://repositorio.ipea.gov.br/bitstream/11058/9146/1/Institui%C3%A7%C3%B5es%20de%20longa%20perman%C3%AAncia.pdf

Brazilian Ministry of Health. (2018e). Orientações Técnicas para a Implementação de Linha de Cuidado para Atenção integral à Saúde da Pessoa Idosa no Sistema Único de Saúde—SUS. Ministério da Saúde do Brasil.

Brazilian Ministry of Health. (2019d). Estratégia Saúde da Família (ESF).

Brazilian Ministry of Health. (2019h). Programa Melhor em Casa.

Camarano, A. A. (2017). Cuidados para a população idosa: Demandas e perspectivas.

 

Older persons receive services from both the public and private sector. The National Sample Survey shows an increase in private and non-governmental services for older people in both hospital-based and other long-term health care (UNESCAP, 2016).

Table 3.1. The following table summarises the programmes and schemes offering care for older persons.

Name of the Scheme/ Programme Short description
The National Senior Citizen Health Scheme (Rashtriya Varishta Jan Swasthya Yojana; RVJSY)

(Ministry of Health and Family Welfare [MoHFW], 2016a)

The scheme includes support for home-based and telephone-based care, yoga therapy, screening for early diagnosis of health conditions (for those aged 75 years and older, information, education and communication activities and training for caregivers, among many other activities).
National Programme for Health Care of the Elderly (NPHCE)(MoHFW, 2016b)

 

The vision of the NPHCE is to provide accessible, affordable, dedicated and high-quality long-term, curative, and rehabilitative care services to an ageing population. It also promotes active and healthy ageing.

 

 

The Integrated Programme for Older Persons (IPOP) (Borah et al., 2016) Under this programme, the government proposes to provide financial support to homes for older persons, respite care homes and continuous care homes; the programme runs multi-service centres for older persons where it provides day care, educational and entertainment opportunities, health care and companionship; it maintains mobile medical units for older persons living in rural or isolated areas; it provides specialized care by running day care centres for Alzheimer’s disease and related disorders as well as multi-facility care centres for older widows, physiotherapy clinics and help lines and counselling centres for older persons.
The Rashtriya Vayoshri Yojana (MSJE, 2022). This scheme provides physical aids and assisted-living devices for senior citizens who are below the poverty line.
Maintenance and Welfare of Parents and Senior Citizens Act (MSJE, 2018b) This Act calls for responsibilities of the family and the state in providing care for older persons. Section 19 of the act envisages the provision of at least one old age home for indigent older persons, with a capacity of 150 persons, in every district of the country.
Indira Gandhi National Old Age Pension Scheme (IGNOAPS) (Vikaspedia, n.d.) A pension scheme for those below the poverty line. Provides a pension of Rs. 200-500/- per month to persons above 60 years.

 

Source:  (Borah et al., 2016); (MoHFW, 2016a, 2016b; National Mental Health Programme, 2017; Vikaspedia, n.d.; MSJE, 2018b, 2022).

According to a 2009 directory compiled by HelpAge India, there are 1,279 old age homes in India. Of these, 543 provide services free of cost, while 237 are on a pay & stay basis. Another 161 homes have both free as well as pay & stay facilities (HelpAge India, 2016). Additionally, 214 old age homes accept medical/constant care cases and 133 homes are exclusively for older women (HelpAge India, 2016). Despite growing numbers of care homes for older people, these services are largely unregulated, making it difficult to estimate the number of homes or the number of older persons covered by formal services. It has been reported that 62.1% of the ageing population do not have access to long-term or palliative care (Agewell Research & Advocacy Centre, 2018). According to a review by the International Labor Organisation, no persons in India have legal entitlement to long-term care (Scheil-Adlung & Xenia, 2015).

Gaps are observed in terms of coverage, accessibility, and quality care in the provision of services under the public sector, which results in health care costs to be borne largely by private households (UNESCAP, 2017). National data on the proportion of the population that makes use of these services is not available.

References:

Agewell Research & Advocacy Centre. (2018). Independence in old age – with special focus on long-term & palliative care in india. New Dehli. Available from: https://www.agewellfoundation.org/images/Independence-in-Old-Age-Long-term-n-Palliative-care-in-India-June-2018.pdf

Borah, H., Shukla, P., Jain, K., Kimar, S., Prakash, C., & Gajrana, K (2016). Elderly in India 2016. Ministry of Statistics and Programme Implementation, Government of India.

HelpAge India (2016). Senior Citizens Guide. HelpAge India. Available from: https://www.helpageindia.org/wp-content/uploads/2017/06/senior-citizens-guide-2016.pdf

Ministry of Health and Family Welfare. (2016a). Department of Health and Family Welfare. Available from: https://main.mohfw.gov.in/sites/default/files/8072971981455275414.pdf

Ministry of Health and Family Welfare. (2016b). National Programme for Health Care of the Elderly.

Ministry of Social Justice & Empowerment. (2018b). THE MAINTENANCE AND WELFARE OF PARENTS AND SENIOR CITIZENS. New Delhi.

Ministry of Social Justice and Empowerment (2022). Scheme for Welfare of Senior Citiizens. Press Information Bureau. Available from: https://pib.gov.in/PressReleaseIframePage.aspx?PRID=1806506

National Mental Health Programme. (2017). The Mental Health Care Act. Available from: https://www.nhp.gov.in/national-mental-health-programme_pg

Scheil-Adlung, & Xenia. (2015). Long-term care protection for older persons : a review of coverage deficits in 46 countries. ILO Working Papers.

UNESCAP. (2016). Long-term Care of Older Persons in India. Available from: https://www.unescap.org/resources/long-term-care-older-persons-india

UNESCAP. (2017). Addressing the Challenges of Population Ageing in Asia and the Pacific. Available from: https://www.unescap.org/sites/default/files/publications/Addressing%20the%20Challenges%20of%20Population%20Ageing%20in%20Asia%20and%20the%20Pacific.pdf

Vikaspedia. (n.d.). National Social Assistance Programme. Ministry of Electronics and Information Technology. Government of India. Available from: https://vikaspedia.in/social-welfare/rural-poverty-alleviation-1/schemes/national-social-assistance-programme#:~:text=National%20Family%20Benefit%20Scheme%20(NFBS)%20%3A%20Rs.,the%20family%20eligible%20for%20assistance

There are no public services specific for older people. Furthermore, most of the public health facilities accessible to the older persons do not have the appropriate services (Waweru et al., 2003). The basic inpatient and outpatient facilities are not sufficient to accommodate the long-term health needs of older persons (Wanja, 2016).

References:

Wanja, N. L. (2016). The viability of long term care insurance in Kenya. Strathmore University. https://su-plus.strathmore.edu/handle/11071/4475

Waweru, L. M., Kabiru, E. W., Mbithi, J. N., & Some, E. S. (2003). Health status and health seeking behaviour of the elderly persons in Dagoretti division, Nairobi. East African Medical Journal, 80(2), 63–67. https://doi.org/10.4314/eamj.v80i2.8647

There are some permanent LTC residences (care homes) for older people in the country. However, given that there is no single and mandatory public registry, except for a few publicly funded institutions, there is high uncertainty about the total number of institutions, the type of services they offer, their cost and the number of people who use them, as well as the quality of the services they provide and their impact on the well-being and quality of life of its residents. Some of the institutions are managed by public institutions and civil society organisations and there are also some homes ran by for profit organizations.

With respect to public services, in Mexico, it is important to note the differences between national-level public services (funded and provided by central budget and government) and those provided and financed at the local level, by the state or other municipal authorities.

Public institutions

With respect to national, centrally funded services, the National Institute for Older Adults (INAPAM), and the National System for the Development of the Family (DIF), both part of the federal level of government, have a total of ten institutions that provide permanent housing for older adults. INAPAM has six permanent housing/residential institutions (four in the Federal District, one in Guanajuato and another in Oaxaca) and DIF has 4 (two in Mexico City, one in the state of Morelos and one in the state of Oaxaca). Regarding the admission to these public institutions, priority is given to people in extreme conditions of vulnerability such as older people in situations of abandonment or without housing. Voluntary admission can be requested and there is usually a waiting list for the few places available. The services are offered at no charge or cost to the resident, and they generally provide accommodation, food, laundry services, cleaning, general medical care and referral to second or third level health services. They also offer support for the basic activities of daily life, as well as for recreational, sports, and cultural activities.

In addition, some municipalities (local public financing) have day centres (recreation mostly) for older adults. However, given the lack of a national level regulation agency and of a national mandatory registry of institutions, no precise information on the total number of public (or private) institutions is available. As a result, in order to gather information on institutions administered at the state level, there are few sources that can be consulted for information, and since different sources have to be consulted, consequently, data can be over or underestimated. The latest data from the National Statistical Directory of Economic Units, DENUE[1] (Directorio Estadístico Nacional de Unidades Económicas) reports 819 permanent housing institutions for elderly individuals. Of these, 85% are private and not-for profit organisations and only 15% are publicly funded. The number of institutions per state shows important variations, with 6 states (Jalisco, Ciudad de México, Nuevo León, Chihuahua, Guanajuato, Michoacán, San Luis Potosí, Sonora,  and Yucatán) concentrating 64% of all institutions.

[1] The DENUE offers information on the identification, location and economic activity of the economic establishments currently in operation in the national territory and includes a category for “asylums and other residences for the care of the elderly” (INEGI 2011). It is a broad definition that includes permanent institutions and temporary stay institutions such as day centres. In the case of permanent housing institutions, it includes a wide variety of local used terms such as care homes, rest homes, retirement homes, long-stay for seniors, among others. It registers publicly and privately funded institutions as well as civil society organisations. Last access 5 July 2019 https://www.inegi.org.mx/app/mapa/denue/

There are an estimated 1150 residential care homes for older persons in South Africa, of which 415 are officially registered with the Department of Social Development (as mandated by the Older Person’s Act) (Mahomedy, 2017). Residential care is largely run by Non-profit organisations (NGOs) and Faith-based organisations (FBOs), and only 8 of these registered facilities are managed directly and fully subsidised by the State (Lloyd-Sherlock, 2019a; Mahomedy, 2017). All registered facilities can apply for subsidies for individual residents, and will only qualify for this financial support if the older person is frail and destitute, in need of full-time care, 60 years and older, and is a South African resident (South African Government, 2019). If the resident dies or leaves, that subsidy is lost. Reductions in the subsidy received from the Department of Social Development have led to facilities failing to provide services to poor, frail persons (who are eligible), while admitting more wealthier persons (who pay themselves) (Lloyd-Sherlock, 2019a).

There are about 4.6 million persons aged 60 years and older in South Africa. However, no data were found on the proportion of this population that is taken care of within the public long-term care system.

References:

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

Mahomedy, Y. (2017). Residential Facilities for Older Persons. Who Owns Whom: African Business Information.

South African Government. (2019). Old age pension. 1–7. Available from: https://www.gov.za/services/social-benefits-retirement-and-old-age/old-age-pension

The government implements the policies and programmes for the elderly in close collaboration with non-governmental and civil society organisations. The national policy envisages apex associations of older persons as a partner to the State. The All India Senior Citizens’ Confederation is one such organisation. Several NGOs are actively involved in planning as well as grassroots implementation to improve the quality of life of older persons. Some of them are also involved in providing long-term care components.

Table 3.2 shows private/ non-government organisations offering long-term care.

Name of organisation Services/programmes offered Capacity of the services
Nightingale Medical Trust Day care, institutional care and medical assistance to homebound older persons. 98 bed respite care, 48 bed Kolar, day-care catering to 50 people with dementia everyday (each in the Bangalore and Hyderabad chapters).
Apollo Group of Hospitals Home care services, formal caregivers No specific data available.
Alzheimer’s and Related Disorders Society of India (ARDSI) Institutions and day carers. 22 active chapters across the country.
Max Group of Hospitals Home health-care programme in Delhi. No specific data available.
Sama Nursing Home in Delhi Long-term medical and nursing interventions. No specific data available.
NIKISA Dementia Village Dementia village and Alzheimer’s Hospital. A 50-bedded dementia speciality facility.

Source: (UNESCAP, 2016; Nikisa Dementia Village, n.d.; Nightingales Medical Trust, n.d.)

Note: Please refer to Part 7 for a larger list of available services.

Most of the listed organisations, except ARDSI, come at a considerable cost and prioritise post-acute care over long-term care. Long-term care in the private sector is less affordable, and older patients are generally discharged from hospitals early, often before adequate recovery. The public sector and the non-profit institutes appear not to be under so much pressure to discharge patients, and this incentivises older patients to access these facilities if they are able to afford it (UNESCAP, 2016). Inadequate housing conditions, lack of financial support, and lack of skilled caregivers are other problems associated with private care homes (Bhattacharya & Chatterjee, 2017).

There are several other organizations involved in providing hospice and palliative care services for cancer. A great number of such centres are concentrated in the state of Kerala. In 2008, Kerala was the first state in India to launch a palliative care policy (Khosla, Patel and Sharma, 2012). CanSupport in Kerala (Gupta, 2004), the Guwahati Pain and Palliative Care Society (GPPCS) in Assam, Karunashraya Bangalore Hospice Trust, and the Chandigarh Palliative Care service provide comprehensive, home-based cancer care (Khosla, Patel and Sharma, 2012). Similar models of care for older persons have not been reported.

References:

Bhattacharya, T. and Chatterjee, S. C. (2017). Exploring elder care in different settings in West Bengal: a psycho-social study of private homes, hospitals and long-term care facilities. International Journal of Psychological & Behavioural Sciences, 11(6), 1639-44. https://doi.org/10.5281/zenodo.1131896

Gupta, H. (2004). A journey from cancer to’CanSupport’. Indian Journal of Palliative Care, 10(1), 32.

Khosla, D., Patel, F. D., & Sharma, S. C. (2012). Palliative care in India: current progress and future needs. Indian Journal of Palliative Care, 18(3), 149–154.

Nightingales Medical Trust (n.d.). Home page. Available from: https://www.nightingaleseldercare.com/

Nikisa Dementia Villiage. (n.d). Home Page.  Available from: https://carefordementia.in/

UNESCAP. (2016). Long-term Care of Older Persons in India. Available from: https://www.unescap.org/resources/long-term-care-older-persons-india

The Indonesian long-term care policy emphasises the care of older people on kekerabatan, which refers to care through a kinship system in multi-generational households and bases its support structure on this assumption (Setioko & Pandelaki, 2015, p.57; Rahardjo & Yerly, 2014). This may explain the limited number of LTC services, such as day care, respite care, institutional care services. The Indonesian family focused approach is not without problems, as migration patterns outlined previously show that larger family structures become fragmented when younger generations move for employment opportunities and the traditional family unit providing LTC may not always be a feasible and appropriate assumption.

Puskesmas

According to  the Ministry of Health’s Director of Mental Health Development, out of the 9,599 puskemas in the country, there are about 528 puskesmas across 231 cities equipped with “santun lansia”/geriatric-friendly facilities (not dementia-specific) that include ground-floor rooms, toilets suitable for older people, and prioritisations of older patients in registration and medicine dispensing (Herman, 2015).

Posyandu

The second important long-term care role was given to the Posyandus, however, in contrast to the Puskesmas no specific role was outlined in the National Strategic Plan for older people (No.25/2016) (Pratono & Maharani, 2018). This community service, which is run by midwives and volunteers, initially focused on family planning and maternal health (Posyandu Balita). In recent years, the community service received an optional second task: the provision of health ‘promoting and preventive’ services to senior citizens (Posyandu Lansia). These include regular basic health services as well as other community activities, such as taking a medical history, physical examination, assessing people’s ability to complete activities of daily living independently, basic laboratory tests as well as the provision of information on nutrition and some services may provide home visits, health promotion activities, legal and social aid, day care, and social activities as well as religious and mental spiritual services (Metkono et al., 2017; Pusat Data dan Informasi Kementerian Kesehatan RI, 2014; Rahardjo & Yerly, 2014; UPTD Puskesmas Kandangan, 2015).

According to regulation No. 7/2007 issued by the National Ministry of Home Affairs, each Posyandu should cover between 30 and 50 households and be run by five to 10 volunteers.

Some Posyandu Lansia may also provide home care services in the community, however, the level of service provision was reported to vary considerably between areas. According to Rahardjo and Yerly (2014), there are 70,000 Posyandu Lansia services available in Indonesia. Another source suggests that there are 52,450 Posyandu Lansia operating in the province of East Java, while ten provinces are reported (Aceh, West Sumatra, Bengkulu, Gorontalo, Riau Islands, Lampung, South Kalimantan, Southeast Sulawesi, West Sulawesi, West Nusa Tenggara, and Papua) to not have any (Pusat Data dan Informasi Kementerian Kesehatan RI, 2014)

Placing the responsibility of the Posyandu Lansia services on midwives led to challenges of expertise versus the high expectations of the local community, where midwives without appropriate training were expected to ‘provide guidance on preventive measures such as early detection of diseases, hypercholesterolemia and hypertension, as well as health and psychological counselling’ (Pratono & Maharani, 2018, p.1569). Shortage of medical workforce in some areas may exaggerate this as well as create overlap in workload between medical professions.

Pratono & Maharani (2018), following their study of role of posyandus in LTC in the East Java Province identified several limitations. It appears that in rural areas the monthly posyandus provide only social events as LTC (e.g., dance, prayer, and recreation) services in addition to basic health care provision. While health care services are free, participants are expected to pay for uniforms or to provide a contribution fee for their participation in activities, which limits accessibility. In addition, the reliance of volunteers means that posyandus may be run by religious groups, which may lead to exclusion of population groups (Handayani & Wahyuni, 2012; Pratono & Maharani, 2018, p.1566). Furthermore, the authors raised issues regarding accessibility of services due to distance and transportation costs as well as quality of services. They highlighted a report by the Ministry of Health (2015) that showed that ‘only 10% of Posyandu met the minimum standard and only 1% of Posyandu were able to independently manage their financial resources’ (Pratono & Maharani, 2018, p.1571). Reliance on volunteers meant that many Posyandu were unable to provide regular activities due to lack of volunteers and capability (Pratono & Maharani, 2018). ‘The long-term care requires health cadres or caregivers who support the health workers, however, health cadres or caregivers need to conceive a decent knowledge regarding long-term care on the elderly’ (Aquino Amigo & Nekada, 2019). Rahardjo et al,. presented in an LTC expert dialogue forum in Kitakyushu, Japan (2019), hosted by Economic Research Institute for ASEAN and East Asia the results of their unpublished data from West Jakarta, in which they found the lack of training for volunteers and low understanding of LTC among the volunteers (60%), despite previous training.

Nursing homes

In addition to the health focused Puskesmas and Posyandu, the Ministry of Social Affairs provides nursing homes (Panti Wredha). These nursing homes services are provided to people without access to family or community support and in need of long-term care. Volunteers are likely to identify eligible people (Kadar et al., 2013). There are only very few publicly funded shelters and nursing homes managed by the Ministry of Social Affairs available to older people in Indonesia, as these services are not yet fully developed. Local governments, on the other hand, have been found to have established nursing homes across several provinces. However, there were some regions, including Bangka Belitung, East Nusa Tenggara, Central Sulawesi, and West Sulawesi that do not yet have institutional care facilities.

References:

Aquino Amigo, T. E., & Nekada, C. D. Y. (2019). Pengaruh Edukasi Perawatan Jangka Panjang Pada Lansia Dengan Pengetahuan Kader Kesehatan Di Area Komunitas. Jurnal Ilmu Keperawatan Komunitas, 2(2), 1. https://doi.org/10.32584/jikk.v2i2.408

Handayani, D., & Wahyuni. (2012). Hubungan Dukungan Keluarga Dengan Kepatuhan Lansia Dalam Mengikuti Posyandu Lansia Di Posyandu Lansia Jetis Desa Krajan Kecamatan Weru Kabupaten Sukoharjo. Gaster, 9(1), 49–58. https://jurnal.aiska-university.ac.id/index.php/gaster/article/view/32/29

Herman. (2015). Puskesmas Didorong Beri Layanan Penyakit Pikun. Hero, Supermarket Ramah Lansia Pertama di Indonesia. (2018, June). PalapaNews.

Kadar, K. S., Francis, K., & Sellick, K. (2013). Ageing in Indonesia – Health Status and Challenges for the Future. Ageing International, 38(4), 261–270. https://doi.org/10.1007/s12126-012-9159-y

Metkono, Y. S., Nusawakan, A. W., & Sujana, T. (2017). STRATEGI INTERVENSI KESEHATAN LANSIA DI POSYANDU. IKESMA, 13(1), 22–24. https://doi.org/10.19184/ikesma.v13i1.7026

Pratono, A. H., & Maharani, A. (2018). Long-Term Care in Indonesia: The Role of Integrated Service Post for Elderly. Journal of Aging and Health, 30(10), 1556–1573. https://doi.org/10.1177/0898264318794732

Pusat Data dan Informasi Kementerian Kesehatan RI. (2014). Situasi dan analisis lanjut usia (pp. 1–7).

Rahardjo, T. B. W., & Yerly, A. N. (2014). A trend for establishing community care system in Indonesia. Forum on Conception of Harmonization of Long Term Care Certificate Between Japan and Indonesia.

Setioko B. & Pandelaki, E. E. (2015). Toward Housing for the Elderly in Indonesia. International Journal of Humanities and Social Science. 5(6). Pp. 53-60. http://www.ijhssnet.com/view.php?u=http://www.ijhssnet.com/journals/Vol_5_No_6_June_2015/7.pdf

UPTD Puskesmas Kandangan. (2015). Pedoman Pelaksanaan Posyandu Lansia di UPTD Puskesmas Kandangan.

An audit of residential institutions of older members of the society in selected counties conducted in 2016 found that there are very few faith-based and private institutions established for the care of older persons. The six counties included had no homes for older persons and none of the homes that were identified were run by the government. The institutions lack reliable and predictable means of funding (rely on donation from well-wishers and churches), yet play a crucial role in improving the quality of life for older persons as they provide services, such counseling, psychosocial support, healthcare services from resident nurses and feeding programmes (National Gender and Equality Commission (NGEC), 2016). It is however not clear how many people make use of the private long-term care services or the current size of the private sector.

References:

National Gender and Equality Commission. (2016). Audit of Residential Institutions of Older Members of Society in Selected Counties of Kenya. Nairobi, Kenya. https://www.ngeckenya.org/Downloads/Audit%20of%20Residential%20Homes%20for%20Older%20Persons%20in%20Kenya.pdf

The evidence suggests that the private long-term care sector is growing. Currently, there are no legal frameworks or mandatory standards of care and evaluation, which means that there is very little information about the types of services provided, their quality, the professions working for them, and their overall impact on the health and wellbeing of the people that live there. Therefore, the actual number of people that use these services and the size of the private sector is unknown, even though it is larger than the public sector.

Private non-profit institutions

Through the 2015 Social Assistance Housing Census, CAAS[1] (Censo de Alojamientos de Asistencia Social) (INEGI, 2015a), 4,517 permanent housing institutions could be identified. Among these, almost 23% (1,020) are identified as permanent homes or residences for older adults. Regarding the average number of residents per facility, 37% of the total reported an average between 11-20 residents, 23% between 21-40 residents and the remaining 22% reported having between 5-10 residents. Regarding their legal nature, 75% are private non-profit facilities, 8% are public (government funded), 2.3% religious associations, and 2% private for-profit. Most non-profit institutions combine multiple financing sources: user fees (78%), personal donations (56%), private sector donations (32%), donations from faith-based organisations (28%), government funds (38%), and selling products made by the residents (3%).

Most non-profit institutions work under mixed schemes in which they offer free accommodation services for those older people who do not have resources, or a family network that supports them and for those who have some economic capacity. The group consisting of people without resources generally represents most of their residents. For those with economic capacity, recovery fees depend on the available resources of the older person (their relatives can also be charged). Fees are established according to the financial situation of the resident through a socio-economic assessment of the older person and their responsible family members, if there are any.

Private for-profit institutions

There are also private for-profit institutions that offer care to older people. While people become older and very likely disabled during their time in the institution, most have strict admission requirements that up front only admit “independent” older adults with no severe illnesses or disabilities. Their scale, type of services and quality are not documented. The services of private institutions vary in quality and costs. While there are institutions that offer common accommodation services in very small spaces, others offer spacious single rooms with an integrated bathroom. Similarly, non-professional caregivers and auxiliary nursing personnel constitute most of the personnel, with very few licensed nurses being hired. For more specialised and personalised nursing care, some institutions allow the resident or family member to hire external personnel for their care when needed, incurring in an additional cost. In addition, nursing or other specialised care services contracted out (and paid) by family members are sometimes also allowed. Some institutions offer a wide range of additional recreational services and amenities, such as cable television, internet, movies, access to a gym, climate and controlled ventilation or beauty salons.

According to the DENUE, there are 603 private institutions identified as nursing homes and private homes for the care of the elderly. However, there is no additional information to identify if these are private lucrative or non-profit organisations and as a result, the precise number of private for-profit institutions in the country is unknown. Great diversity was found in the total number of private institutions registered in each state of the country (INEGI, n.d.-b).

Private Community Care

There is an increasing market of private day centers and incipient services for care aides at home. However, since no regulatory framework or agency establish care standards, monitor, or evaluate the services which are in place, little information on their number and how they operate is known. There are some at-home personal assistance (not qualified medical care) services provided by private for profit companies. The range of services usually cover from basic personal company services (inside and outside the home), support with activities of daily living such as feeding (but not cooking), bathing, basic nursing activities and physical therapy or rehabilitation. While these services are being offered in Mexico’s largest cities, the costs are very high and only accessible to a very small percentage of those who can benefit from them (López-Ortega & Aranco, 2019). On the other hand, the lack of regulation and standards to overlook these services generates a wide variety with respect to the quality of services provided (including the training and skills of hired personnel), from highly standardised and monitored U.S. franchises operating in Mexico, to agencies/individuals that gather a group of “carers” and act as placement services. While the former use highly professional advertising campaigns, services with the latter are usually known from word of mouth.

Services provided in day centers are usually focused on independent and highly functional individuals. These are mostly social and recreational centers which aim at maintaining the independence and participation of the elderly, mainly providing occupational therapies, crafts, health promotion and information, training in information and communication technologies (ICTs), physical activation, and, in some occasions, general medical and dentist consultations. That is, they focus primarily on functional people and, for the most part, do not consider dependency care as care strategy or model them (López-Ortega & Gutiérrez-Robledo, 2015). Except for around 15 day-centers for people with dementia in the country, no other day care services are in place for older adults (or any other age groups) with disabilities or care dependent.

Finally, while it is common practice for domestic workers (by the day and live-in), to provide care on a needs-basis (infants, young children, older adults, people with disabilities), no information is publicly available on how many and how much of their time is dedicated to care for each of these population groups.

[1] The objective of CAAS was to collect information on the conditions and services offered by public, social and private establishments that house vulnerable populations, along with their characteristics and those of the people who work in these centres (INEGI 2015). It focuses on all types of social assistance institutions, such as care homes and residences for the elderly, but also others as rehabilitation (drug & alcohol) centres, homes for orphans, etc.

References:

INEGI. (2015a). Censo de Alojamientos de Asistencia Social. https://www.inegi.org.mx/programas/caas/2015/

INEGI. (n.d.-b). Directorio Estadístico Nacional de Unidades Económicas. DENUE. Retrieved March 16, 2020, from https://www.inegi.org.mx/app/mapa/denue/

López-Ortega, M., & Aranco N. (2019). Envejecimiento y atención a la dependencia en México. Nota técnica del BID. https://publications.iadb.org/publications/spanish/document/Envejecimiento_y_atención_a_la_dependencia_en_México_es.pdf

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.

In addition to public LTCFs, there are over 1000 private long-term care facilities for older persons across South Africa (Mahomedy, 2017). These range from residential homes, retirement villages, frail care facilities, nursing homes, and step-down facilities. Private facilities offer a range of long-term care services, for example, assisted living, frail care, convalescence, as well as old age care (nursing/retirement homes) where they can buy or rent accommodation and are responsible for the full cost of their stay.

There are about 4.6 million persons aged 60 years and older in South Africa, however no data were found on the proportion of this population that makes up the private long-term care system.

References:

Mahomedy, Y. (2017). Residential Facilities for Older Persons. Who Owns Whom: African Business Information.

The private long-term care sector in Indonesia provides community services, such as home care and training for family carers, as well as nursing homes, including hospice and respite care opportunities. For example, besides the regionally managed Posyandu LTC, services in the community are also provided by local non-profit organisations providing home care services, such as Cita Sehat in Yogyakarta, Emong Lansia in Jakarta, Vina Dulcedo in East Nusa Tenggara, and many more (Rahardjo & Yerly, 2014).

The provision of care in nursing or care homes, however, is surrounded by considerable stigma. The stigma, that nursing home care cannot provide the same kind of care as that provided by family members, is fueled by government officials. For instance, the former Minister of Social Affairs, Khofifah Indar Parawansa, appealed to the public not to send their older family members into nursing homes (Firmanto, 2016). The stigmatisation of institutional care leads to a flourishing, unregulated market of live-in carers, where family hire carers, predominantly women, to provide care to their older family members in their own homes (Kadar et al., 2013).

Nevertheless, some private long-term care providers have entered the market and provide services ranging from home care visits and carer training to hospice and respite care. However, data on the services provided is not well documented (Mahendrata et al., 2017, p.133). In 2004, there were 118 privately owned older person social service homes across the regions in Indonesia (Abikusno, 2007).

Particularly the upper socioeconomic class may benefit from assisted living, as provided by Rukun Senior Living in West Java. The organisation offers long-term care support for people in a retirement village. Their services are based on four aspects of wellness, namely the physical, mental, social, and spiritual. The facilities include a café, a gym, swimming pool, jacuzzi, and jogging track as well as a fishing pond. Social activities such as dancing, karaoke and music are encouraged within the facilities, while health services such as physiotherapy, hydrotherapy, and health checks are available from doctors and nurses. Regular pick-up and drop-off services are available for members wishing to go out to places of worships and on group outings/excursions. Members are provided with a private room including room services as well as physical and mental health assessment from doctors (Iskandar, 2016).

Another example of private LTC provider affiliated with ALZI is Wulan 247 Health Care in Bekasi, in the province of West Java. Wulan 247 offers Hospice Care, Home Care visits by certified nurses or caregivers with medical background, medical equipment lease, wound care and training for new health care providers and caregivers (247 Wulan Healthcare – About Us, 2017).

References:

247 Wulan Healthcare – About Us. (2017). http://247wulanhealthcare.com/about.html

Abikusno, N. (2007). Long term care support and services for older persons : Case study of Indonesia. ESID/SPAG/4. http://libprint.trisakti.ac.id/145/1/2007%287%29-Abikusno.pdf

Firmanto D. (2016). Menteri Sosial Imbau Lansia Tak Dirawat di Panti Jompo. Jakarta: Tempo.co. Available at: https://nasional.tempo.co/read/809454/menteri-sosial-imbau-lansia-tak-dirawat-di-panti-jompo/full&view=ok

Iskandar, E. D. (2016). Bisnis Panti Jompo Kelas Atas. https://swa.co.id/swa/profile/profile-entrepreneur/bisnis-panti-jompo-kelas-atas

Kadar, K. S., Francis, K., & Sellick, K. (2013). Ageing in Indonesia – Health Status and Challenges for the Future. Ageing International, 38(4), 261–270. https://doi.org/10.1007/s12126-012-9159-y

Mahendradhata, Y., Trisnantoro, L., Listyadewi, S., Soewondo, P., MArthias, T., Harimurti, P., & Prawira, J. (2017). The Republic of Indonesia Health System Review (Vol. 7, Issue 1). https://apps.who.int/iris/bitstream/handle/10665/254716/9789290225164-eng.pdf

Rahardjo, T. B. W., & Yerly, A. N. (2014). A trend for establishing community care system in Indonesia. Forum on Conception of Harmonization of Long Term Care Certificate Between Japan and Indonesia.