DESK REVIEWS | 08.02.01. What support is available for family/unpaid carers?

DESK REVIEW | 08.02.01. What support is available for family/unpaid carers?

Family carers of people living with dementia have access to free support services, such as carer psychosocial support meetings and training about dementia through all the four Alzheimer’s Associations affiliated to the Brazilian Federation of Alzheimer’s Associations (FEBRAZ). Such meetings also provide information and advice on legal rights. However, services tend to be provided mostly in urbanized and high-income areas (located mostly in the Southern and South-Eastern regions), meaning that people from poorer and rural areas often have limited access to support. All associations affiliated to FEBRAZ have some partnerships established with a number of other institutions, such as private hospitals (e.g., Hospital Nove de Julho in Sao Paulo), Secretariats of Health, Lions Clubs, Military Police, among others, that might provide support for carers. There is no availability of respite services or financial benefits/social (security) protection for carers in Brazil. In some cases, people living with dementia may receive disability allowance through court orders.

Family caregivers in Kenya experience financial instability due to costs of treatment and daily living expenses. In addition, they struggle due to limited access to information and evidence-based care. Carers have been found to experience burn out and stigma linked to misconceptions about the illness (Johnston, 2017). Unfortunately, they do not receive any monetary compensation from the government or other forms of formal support from health or social services (Chepngeno-Langat, 2014). ADOK, however, offers training and monthly support group meetings for caregivers of persons with dementia. There they can share their experiences around the provision of care while giving each other support.

References:

Chepngeno-Langat, G. (2014). Entry and re-entry into informal care-giving over a 3-year prospective study among older people in Nairobi slums, Kenya. Health & Social Care in the Community, 22(5), 533–544. https://doi.org/10.1111/hsc.12114

Johnston, H. (2017). Caring for caregivers: challenges facing informal palliative caregivers in Western Kenya. Independent Study Project (ISP) Collection, 2684https://digitalcollections.sit.edu/cgi/viewcontent.cgi?article=3707&context=isp_collection

No support (monetary, in-kind, services, etc.) is available for family/unpaid carers.

Progres LU provides family members who care for older people with non-cash assistance worth Rp. 3,000,000 per person per year (Lukihardianti & Amanda, 2019). We could not find a clear breakdown on what non-cash assistance entails. Since 2018, low-income families that are enrolled in Program Keluarga Harapan (Family Hope Program) receive additional assistance if they take care of older family members in their homes (TNP2K, 2018b).

References:

Lukihardianti, A., & Amanda, G. (2019). Kemensos akan Beri Tambahan Dana untuk PKH yang Punya Lansia.

TNP2K. (2018b). The future of the social protection system in indonesia: social protection for all (pp. 1–15). http://tnp2k.go.id/download/24864181129 SP Exe Summary ENG-web.pdf

None is available for family/unpaid carers.

In South Africa, there is a small caregiver allowance called the ‘Grant-in-aid’ that can be used by a carer for an older person with dementia (Kalula & Petros, 2011). This is a social protection grant that is an additional payment to those older persons who are living on a social grant (e.g., disability, pension, or war veteran’s grant) but are unable to care for themselves, and therefore for the purpose of paying the carer.

References:

Kalula, S. Z., & Petros, G. (2011). Responses to Dementia in Less Developed Countries with a focus on South Africa. Global Aging, 7(1), 31–40.

The Keluarga Harapan Program (PKH) is a conditional cash transfer programme which is put in place for the very poor families. The programme was not specifically for unpaid caregivers of people with dementia as it focuses on reducing inter-generational poverty in the long-term by investing in children’s health and education, with a “top-up” feature if the family has an older member living with them. The program was also designed to absorb the scheme for older people (Asistensi Sosial Lanjut Usia/ASLUT) in 2017 (Kartika et al., 2019).

References:

Kartika, A. W., Choiriyah, M., Kristianingrum, N. D., Noviyanti, L. W., & Fatma, E. P. L. (2019). Pelatihan Tugas Perawatan Kesehatan Keluarga Caregiver Lansia dalam Pogram RURAL (Rumah Ramah Lansia). Jurnal Pengabdian Kepada Masyarakat (Indonesian Journal of Community Engagement), 5(3), 448. https://doi.org/10.22146/jpkm.45139

None is available for family/unpaid carers.

The Grant-in-aid amounts to a payment of R410 per month (in 2019) and is paid together with the social grant via one of 3 payment methods: (a) cash withdrawal at specific pay point; (b) electronic transfer to bank account; or (c) payment via an institution acting as administrator of the grant (welfare organisation).

Although not directed specifically towards unpaid carers, there are several training and education programmes conducted by the ARDSI focused on old age/geriatric care (Alzheimer’s and Related Disorders Society of India (ARDSI), 2010). These are described in Table 1.

Table 1 provides an overview of ARDSI Training and Education Programmes.

ARDSI Training and Education Programmes
 Programmes Duration Description
ARDSI School of Geriatric Care  – Established in 1993 in Kerala, this school provides several training and education programmes with specific focus on dementia care.
Postgraduate Diploma in Integrated Geriatric Care 1 year Focuses on managerial/supervisory services to provide institutions with inputs on various areas within the field of geriatrics such as counselling, research, management, policy and planning.
Training NGO Functionaries:

 

1) Certificate Course

 

2)Geriatric Counselling Training

1 month

 

5 days

This training is relevant for institutions like day care centres, residential facilities, or other dementia specific care centres.

Source: (ARDSI, 2010)

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

In 2019, the Ministry of Health released a practical guideline for caregivers in taking care of the elderly, consisting of information on long-term care for the elderly, categorisation of elderly based on their level of dependence, general caring tips such as skincare, bathing, communication, praying, and recreation for the elderly in care (Kementerian Kesehatan RI Direktorat Jenderal Kesehatan Masyarakat, 2018). Also in 2019, a study in Malang, East Java, provided training for family caregivers to ensure that home environment is optimal for the elderly’s well-being. The study finds that providing training for carers of home-bound elderly with chronic pain is effective to enhance the ability of caregivers in improving the health status of the elderly (Ministry of Health Regulation No. 79/2014 on Geriatric Services in Hospitals (Permenkes No. 79/2014 Tentang Pelayanan Geriatri Di RS), 2014).

References:

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

Ministry of Health Regulation No. 79/2014 on Geriatric Services in Hospitals (Permenkes No. 79/2014 tentang Pelayanan Geriatri di RS). (2014). (Testimony of Ministry of Health Republic of Indonesia).

Very few basic programs for family/unpaid carers are available. Most recent data (2017) showed there are only two training programmes at national level for carers of people with chronic diseases or disabilities (López-Ortega & Aranco, 2019), and one for carers of people with dementia provided by the National Institute of Geriatrics. The course “Person-centred care for people with dementia” is an online course for general public, in this way people can know and establish different care practices for people with dementia, using a person-centred approach.

References:

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

Although included in the mandate of the DSD’s Older Person’s programme, the NGO-sector is currently the leader on training, awareness, and education on dementia-specific issues in South Africa.

The number of psychosocial support services available for carers in India is limited. In 2010, there were approximately 100 memory clinics in the country that were reported to offer assessment information and advice (ARDSI, 2010). Six domiciliary care services and 10 dementia helplines exclusive to persons with dementia were also reported in 2010 (ARDSI, 2010). These numbers are gradually increasing due to an increase in awareness and greater need for dementia services. Organisations like ARDSI, Nightingales Medical Trust and Caregiver SAATHI also provide psychosocial support through frequent caregiver support meetings and telephone support with counsellors and dementia experts.

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 systematic psychosocial support from the government for unpaid or family caregivers in Indonesia. However, it is worth noting that there is a non-governmental organisation working to support dementia caregivers in Indonesia such as Alzheimer Indonesia and Perkumpulan Asuhan Demensia Indonesia (PADI), which conducts events such as talks and seminars focusing on educating and improving capabilities of caregivers of people with dementia (Alzheimer’s Indonesia, 2019b; Perkumpulan Asuhan Demensia Indonesia, n.d.).

References:

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

Perkumpulan Asuhan Demensia Indonesia. (n.d.). Facebook Page: Perkumpulan Asuhan Demensia Indonesia. Retrieved December 6, 2020, from https://www.facebook.com/916681961846086/posts/perkumpulan-asuhan-demensia-indonesia-padi-or-indonesian-society-of-dementia-car/1054667844714163/

 

Psychosocial support services for carers are limited; however, where these services are offered, for example, they are in the form of support groups by Alzheimer’s South Africa (9 regions/8 provinces) and Dementia-SA (Western Cape province), as well as support services in the home environment in resource constrained settings by NGOs (Van Pletzen, 2013).

References:

Van Pletzen, E. (2013). COMMUNITY CAREGIVERS: THE BACKBONE FOR ACCESSIBLE CARE AND SUPPORT. Available from: https://www.cordaid.org/en/wp-content/uploads/sites/3/2013/09/SA_CAN_Report_26_July2013.pdf

There are a few respite care facilities that exist in the form of day care centres and residential facilities. There were 6 residential facilities, 4 in Kerala, 1 in Karnataka and 1 in Maharashtra (ARDSI, 2010) as of 2010. There were also 10 day-care centres at which trained professionals provide care to people with dementia during the day (ARDSI, 2010). The number of these services have increased marginally over the years (Refer to Table 7.4 and Table 7.5 in Part 7).

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

Respite care is defined in the Regulation of Ministry of Health of the Republic of Indonesia No. 79/2014 (Ministry of Health Republic of Indonesia, n.d.). It is described to be within hospital or health facility settings, containing rooms dedicated for individual geriatric patients to stay, with communal areas like libraries, socialising areas, gardens, and reception rooms for families. In practice, there are various publicly and privately-owned day-care centres for older people (not specific to those with dementia). Rehabilitasi Sosial Lanjut Usia (RSLU) are government-owned social rehabilitation centres for older people. One of the services offered is day care. There are pre-set eligibility criteria for the day-care assistance recipients, regulations for day care workers, and indicators to measure the success of day-care centres (Kristanti et al., 2018a).

References:

Kristanti, M. S., Engels, Y., Effendy, C., Astuti, Utarini, A., & Vernooij-Dassen, M. (2018a). Comparison of the lived experiences of family caregivers of patients with dementia and of patients with cancer in Indonesia. International Psychogeriatrics, 30(6), 903–914. https://doi.org/10.1017/S1041610217001508

Ministry of Health Republic of Indonesia. (n.d.). Day Care (Pelayanan Harian Lanjut Usia).

Formal respite services are available in South Africa but are skewed to the private sector. Where public services are available, it is outsourced to the NGO sector to provide this form of care and family support.

The Maintenance and Welfare of Parents and Senior Citizens Act (2007) places the responsibility on children or relatives to take care of the elderly and highlights that neglect or abandonment of elderly people is a punishable offence by law (Ministry of Law and Justice, 2007).

References:

Ministry of Law and Justice. (2007). Maintenance and welfare of parents and senior citizens Act. Government of India. Available from: https://www.indiacode.nic.in/bitstream/123456789/6831/1/maintenance_and_welfare_of_parents_and_senior_citizens_act.pdf

No information on legal rights of family providing unpaid care for older persons was found.

The provision of this falls within the mandate of the Older Person’s programme as part of their proposed basket of services for the Integrated service delivery strategy promoting awareness and prevention (see Jordan, 2009), p.12).

References:

Jordan, C. (2009). Older Person’s Programme: Concept paper. Available from: https://www.westerncape.gov.za/other/2009/10/concept_paper-_programme_older_persons.pdf