DESK REVIEWS | 07.02. Dementia care system organisation

DESK REVIEW | 07.02. Dementia care system organisation

Health and long-term care in community-based settings are provided through SUS and SUAS for all people who need them in the country. People living with dementia may access these services the same way people without dementia do. Health (SUS) is a right by the Brazilian constitution, whereas social care (SUAS) is means/needs tested.

Dementia organisations like NMT and private attender agencies like Portea, Life Circle Elder Care and more, run few home-based care programs primarily in urban areas where paid attenders are available to support home-based care.

Few studies have also examined the effectiveness of community-based interventions for people with dementia and their families. Dias and colleagues (2008) conducted randomised controlled trials to examine the impact of a community-based intervention consisting of home care advisors on caregivers of people with dementia in Goa, India. The authors found that this intervention led to improvement in caregiver mental health (Dias et al., 2008).

References:

Dias, A., Dewey, M. E., D’Souza, J., Dhume, R., Motghare, D. D., Shaji, K. S., …& Patel, V. (2008). The Effectiveness of a Home Care Program for Supporting Caregivers of Persons with Dementia in Developing Countries: A Randomised Controlled Trial from Goa, India. PLoS ONE, 3(6), e2333. https://doi.org/10.1371/journal.pone.0002333

In Indonesia community-based Long-term care is provided through Puskesmas and Posyandu Lansia.

Persons with dementia are mostly taken care of by family members at home. The only services in community-based settings are at referral county hospitals at the mental health clinics and delivered by mental health nurses or psychologists. This involves counseling services mainly to the caregiver on the best ways of taking care of their loved ones. Little emphasis is made on the care of the carers and to people with dementia unless they are able to engage in a conversation. The mental health workers receive the person at advanced stage making it difficult to speak directly with persons with dementia (Musyimi et al., 2019; Musyimi et al., 2021).

References:

Musyimi, C. W., Ndetei, D. M., Evans-Lacko, S., Oliveira, D., Mutunga, E., & Farina, N. (2021). Perceptions and experiences of dementia and its care in rural Kenya. Dementiahttps://doi.org/10.1177/14713012211014800

Musyimi, C., Mutunga, E., & Ndetei, D. (2019). Stigma and dementia care in Kenya: Strengthening Responses to Dementia in Developing Countries (STRiDE) Project. In World Alzheimer Report 2019: Attitudes to dementia (pp. 121–122). London, UK: Alzheimer’s Disease International. https://www.alzint.org/u/WorldAlzheimerReport2019.pdf

No, currently there are no available community based public health and long-term care services in place, including care services to support people with dementia.

Usually, the GP refers those he/she suspects that have dementia to a specialist (psychiatrist, neurologist, or geriatrician) under secondary care, but may opt to conduct neuropsychological tests, as well as ask for the blood tests and tomography directly if possible.

Generally, a GP refers the person to a specialist (neurologist/psychiatrist).

PERDOSSI has developed a diagnostic protocol for primary care. In addition, from 2019 onwards primary care centres have to adopt a screening approach by the Ministry of Health’s regulation no. 4/2019 on Minimum Standard of Service. The document states that all people aged 60 years old or above should receive an annual check of blood glucose and cholesterol level, Geriatric Depression Scale, Abbreviated Mental Test, Instrumental Activities of Daily Living (Ministry of Health Regulation No. 4/2019 on Technical Standard to Fulfill Quality of Basic Service in Minimum Standard of Healthcare Service (Permenkes No. 4/2019 Tentang Standar Teknis Pemenuhan Mutu Pelayanan Dasar Pada Standar Pelayanan Minimal Bidang, 2019).

References:

Ministry of Health Regulation no. 4/2019 on Technical Standard to Fulfill Quality of Basic Service in Minimum Standard of Healthcare Service (Permenkes no. 4/2019 tentang Standar Teknis Pemenuhan Mutu Pelayanan Dasar pada Standar Pelayanan Minimal Bidang). (2019). (Testimony of Ministry of Health Republic of Indonesia).

Diagnosis for dementia is made by a medical officer at referral county hospitals, but as a secondary condition. Often, diagnosis is received late, following admission to inpatient care diagnosis because the primary complaint at the outpatient clinic is dementia unrelated and the dementia symptoms are mostly identified during inpatient care (Musyimi et al., 2019).

References:

Musyimi, C., Mutunga, E., & Ndetei, D. (2019). Stigma and dementia care in Kenya: Strengthening Responses to Dementia in Developing Countries (STRiDE) Project. In World Alzheimer Report 2019: Attitudes to dementia (pp. 121–122). London, UK: Alzheimer’s Disease International. https://www.alzint.org/u/WorldAlzheimerReport2019.pdf

Not as part of any public health or social security institutions. Most people with a diagnosis obtains it from private services/specialists.

This may be done, but there is no standard protocol. The neurologist or geriatrician is likely to do this during consultation. For the prescription of free anticholinesterase the specialist has to do the CDR (severity) and MMSE (cognition), but nothing regarding BPSD.

Specialists are equipped to assess people with dementia that are exhibiting psychological symptoms and challenging behaviours. The Clinical Practice Guidelines published by the Indian Psychiatric Society (IPS) (initially in 2007 and revised in 2018) contains a protocol for identification and management of challenging behaviours through pharmacological and non-pharmacological interventions (Shaji et al., 2018). For example, it provides an overview of the drugs recommended for management of behavioural and psychological symptoms of dementia (Shaji et al., 2018).

Non-pharmacological interventions for behavioural and psychological symptoms of dementia have been identified as a key intervention in dementia care. It is recommended for psychological interventions to be explored first before administering pharmacological therapies (Shaji et al., 2018). These psychological interventions have been found to work best when individually tailored to the patient (person-centred care) (Shaji et al., 2018). Cognitive stimulation programmes are beneficial in improving and maintaining the functionality for Activities of Daily Living (ADL). Other interventions like reality orientation and reminiscence therapy are also recommended (Shaji et al., 2018).

References:

Shaji, K.S., Sivakumar, P.T., Rao, G.P., Paul, N., (2018). Clinical Practice Guidelines for Management of Dementia. Indian J. Psychiatry 60, S312–S328. https://doi.org/10.4103/0019-5545.224472

An assessment for behavioural and psychological symptoms of dementia (BPSD) is not routinely performed among older people or people who have been diagnosed with dementia. The Ministry of Health is currently planning a guideline for primary care, and this might include the Neuropsychiatric Inventory (NPI) to assess BPSD. The NPI, however, is commonly used for assessment in memory clinics.

Similar to diagnosis, management is provided at referral county hospitals by psychiatric nurses and psychologists in counties where psychologists are integrated within the health system.

Not as part of public or social security services and no information is available from any private (profit or non-profit) services that offer these services. Some specialists could offer these, but no information is available publicly that we could document.

Yes, but not specifically for people living with dementia.

There are a few dementia activities centres and day-care centres in the country that provide cognitive stimulation and support functional rehabilitation for people with dementia.

Puskesmas santun lansia (geriatric friendly Puskesmas) provide promotive, preventive, curative, and rehabilitative services including psychosocial therapy services in rehabilitative sectors (Zakiah, 2017). The services consist of psychological health services and cognitive activities for older people, which aim to support older people in preserving their functional abilities and independency (Aistyawati, 2016).

References:

Aistyawati, I. (2016). Analisis Implementasi Kebijakan Program Puskesmas Santun Lanjut Usia di Puskesmas Mijen Kota Semarang. Administrasi Publik.

Zakiah. (2017). Puskesmas Santun Lansia. https://www.slideshare.net/dr_Qiqi/puskesmas-santun-lansia-76504165

Yes, but not specifically for people living with dementia.

Dementia organisations like NMT and private attender agencies like Portea, Life Circle Elder Care and more, run home-based care programs primarily in urban areas where paid attenders are available to support home-based care. There are also a few day-care services offered by organisations including ARDSI.

This is often provided by family members.

Yes, they are beginning to be implemented, but not specifically for people living with dementia.

Less than 1% of patients have access to palliative care in India and existing services are predominantly available for persons living with cancer (Rajagopal et al., 2015). The state of Kerala is an exception with a large community-based model for palliative care (Kumar, 2007).

Recently, the Ayushman Bharat-Health and Wellness Centres are working on expanding the range of care services provided at a primary level including elderly and palliative care services which are relevant to persons with dementia (MoHFW, 2019).

References:

Kumar S. K. (2007). Kerala, India: a regional community-based palliative care model. Journal of pain and symptom management, 33(5), 623–627. https://doi.org/10.1016/j.jpainsymman.2007.02.005

Ministry of Health and Family Welfare (2019). Ayushman Bharat: Health and Wellness Centre.

Rajagopal, M. R. (2015). The current status of palliative care in India. Cancer Control, 22, 57-62. Available from: http://www.cancercontrol.info/wp-content/uploads/2015/07/57-62-MR-Rajagopal-.pdf

 

Palliative care was first established in Indonesia in 1992. Expansion of programmes has been slow as services are concentrated in big cities (Putranto et al., 2017), leading to a lack of palliative care services in community-based and primary healthcare facilities. An example of palliative care in community-based service can be found in the Puskesmas Balongsari in Surabaya, East Java. A team of medical doctors, psychologists, nurses, and volunteers provides Palliative care services in the outpatient setting on Mondays and Wednesdays (Saleh et al., 2008). However, this is not dementia specific. Palliative care in Indonesia is mostly linked to cancer (Putranto et al., 2017) and in general is regulated by the Ministry of Health (Kementerian Kesehatan Republik Indonesia, 2007). There continues to be a lack of research evidence and initiative towards developing palliative care for people with dementia in Indonesia.

References:

Kementerian Kesehatan Republik Indonesia. (2007). Minister of Health Decree 812/2007 on Palliative Care Policy (Keputusan Menteri Kesehatan Republik Indonesia No. 812/2007 tentang Kebijakan Perawatan Paliatif).

Putranto, R., Mudjaddid, E., Shatro, H., Adli, M., & Martina, D. (2017). Development and challenges of palliative care in Indonesia: role of psychosomatic medicine. BioPsychoSocial Medicine.

Saleh, M. S., Danantosa, T., & Kusumawardhani, C. (2008). Perawatan Paliatif di Puskesmas Balongsari Surabaya: Upaya Mendekatkan Layanan Rawat Jalan Kepada Pasien Kanker Stadium Lanjut.

These are provided at referral county and private hospitals by mostly psychologists (only in Makueni County for public health facilities) and/or social workers in addition to doctors and nurses team (Hospice Care Kenya, 2018; International Association for Hospice & Palliative Care, 2019). Not all county hospitals have put in place the scheme of service for social medical workers. The medical social workers are supposed to contribute to improvement of health care services and provide counseling to patients and relatives in institutions/hospitals, psychosocial rehabilitation, home based care, and placement of patients. Other roles include providing support services to curative/hospital based, primary, preventive and promotive programmes, and activities (Republic of Kenya, 2009). Private hospitals e.g., the Aga Khan University Hospital have also social workers in their palliative care team (International Association for Hospice & Palliative Care, 2019). In most cases, people with dementia receive these services especially those at advanced stages.

References:

Hospice Care Kenya. (2018). Paving the way for universal access to palliative care in Kenya.  https://www.hospicecarekenya.com/other-news/paving-the-way-for-universal-access-to-palliative-care-in-kenya/

International Association for Hospice & Palliative Care. (2019). Global directory of palliative care services and organizations. https://hospicecare.com/global-directory-of-providers-organizations/

Republic of Kenya. (2009). Scheme of Service for Medical Social Workers. Permanent Secretary Ministry of State for Public Service, Office of the Prime Mininster. Nairobi, Kenya. https://www.health.go.ke/wp-content/uploads/2015/09/SCHEME%20OF%20SERVICE%20FOR%20MEDICAL%20SOCIAL%20WORKERS.PDF

 

In Mexico, the inclusion within the Federal Legislation, of palliative care for individuals with terminal conditions took place in 2009, specifying the need to attend the care of those individuals “with illnesses that have no cure and are in an irreversible condition of health deterioration”, but people with dementia are not included as a specific group. However, very little advances have been made and public services for palliative care are almost inexistent. No private services offering support for palliative care could be identified and only two non-profit organisations in the country were identified providing these support services for any individual/illness.

Yes, but not specifically for people living with dementia.

The Rights of Persons with Disabilities Act 2016, states that a disability assessment can be conducted to assess cognitive impairment for people with chronic neurological disorders. Based upon the results of this assessment, a nominal state pension can be received from the government (Government of India, 2016). Other schemes are listed in Part 9.

References:

Government of India. (2016). The Rights Of Persons With Disabilities Act. THE GAZETTE OF INDIA EXTRAORDINARY PART II.

The Ministry of Health recognises the need of a public financial insurance system specific for dementia and LTC services through the national dementia plan. Although this has not been implemented, financial aid for older people (regardless of a dementia diagnosis) in healthcare services cost has been regulated by Government Regulations (Pemerintah Pusat Republik Indonesia, 2004) and data shows that Puskesmas Santun Lansia provide lower cost geriatric services than those provided in standard Puskesmas (Indriati et al., 2013).

Furthermore, according to the 2019 older people services programme, several people in Indonesia were to benefit from social and financial protection schemes in 2019. These schemes were not specifically for people with dementia.

These include:

  • ASLU: to reach 30,000 people with the value of assistance is Rp 200,000 × 12 months per older person.
  • Home care: to reach 20,000 older people with assistance valued to IDR 2,000,000 per person.
  • Family support: to reach 7,000 people.
  • Social Assistance through Social Welfare Institutions Seniors/Asistensi Sosial Melalui Lembaga Kesejahteraan Lanjut Usia (LKS-LU), targeting 2,655 people.
  • Older people who received social services through Case Response Target in 2019: 8,390 people.
  • Other supporting activities including development of age-friendly neighbourhood and day care services.
  • Progres LU (Program Rehabilitasi Sosial Lanjut Usia) aimed to help older people to rehabilitate and develop their social functioning ability. Progres LU consists of:
    • non-cash assistance worth Rp. 200,000 per person per month,
    • social care within families/community halls, in the form of social assistance of Rp. 1,200,000 per person per year through LKS-LU,
    • support for relatives who are taking care of older people, in the form of non-cash social assistance of Rp. 3,000,000 per person per year,
    • therapy, in the form of social assistance Rp. 1,350,000 per person per year through LKS LU,
    • Social Professional Assistant for Seniors: for community social workers who coordinate and assist in older people social rehabilitation programs at all levels (national, provincial, district/city-level, rehabilitation centres). For paid Social Assistant for older people, the payment is Rp. 2,500,000 per person per month.
  • Other technical support related to main activities in the program.
  • Support for Accessibility for older people through Pemenuhan Hak Hidup Layak (Fulfillment of the Right to Decent Living), in the form of social assistance for older people in emergency situation with a value of Rp 750,000 per person, and Bimbingan dan Dukungan Aksesibilitas (Guidance and Accessibility Support), in the form of social assistance for older people experiencing barriers to mobility and accessibility with value in the amount of Rp. 750,000 per person (Badan Pusat Statistik, 2019b).
References:

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

Indriati, S., Oktarina, D., Santoso, K., Sikoki, B. S., & Sine, J. J. (2013). Forum Nasional IV Jaringan Kebijakan Kesehatan Penilaian Kepatuhan terhadap Standar Kebijakan Nasional untuk Pelayanan Kesehatan Lansia di Yogyakarta: Pelayanan kesehatan vs lanjut usia.

Pemerintah Pusat Republik Indonesia. (2004). Undang-Undang No. 43 Tahun 2004. https://peraturan.bpk.go.id/Home/Details/66188

Only those above 65 years who are poor and vulnerable and none of their household members is receiving pension, regular income, or gainful employment, are entitled to cash transfers (Kshs. 4000) every two months. Those below the age of 65 years who have dementia and are classified as persons with severe disability, are also entitled to similar cash transfer. A person is required to enroll only for one of the schemes even if they qualify for both. Further details on cash transfer schemes are described in part 9 (social protection for people with dementia).

Primary care units exist even in small towns/villages, rural and urban areas in Brazil, but there are greater numbers in big cities. There are efforts by the government to reach areas of difficult access. In some regions of the country the primary care unit is mobile, for example, it can be a big boat that goes on the river to reach small villages.

According to the Clinical Practice Guidelines (CPGs) for the management of dementia, families providing care in the community are advised to access support from community health workers like Accredited Social Health Activities (ASHAs)/volunteers of palliative care services or local chapters of organisations such as ARDSI (Shaji et al., 2018).

In addition, other dementia organisations like NMT and private attender agencies like Portea, Life Circle Elder Care and more, run few home-based care programs primarily in urban areas where paid attenders are available to support home-based care.

References:

Shaji, K.S., Sivakumar, P.T., Rao, G.P., Paul, N., (2018). Clinical Practice Guidelines for Management of Dementia. Indian J. Psychiatry 60, S312–S328. https://doi.org/10.4103/0019-5545.224472

Community-based services, such as Pos Layanan Terpadu (Posyandu) Lansia (Integrated Service Post for Older People) are available not only in capital and main cities but also in rural areas. However, there’s still unequal distribution. For example, there are 52.450 Posyandu Lansia in East Java province, while 10 provinces in Indonesia (Aceh, Bengkulu, Gorontalo, Riau Islands, Lampung, South Kalimantan, Southeast Sulawesi, West Nusa Tenggara, Papua, West Sulawesi, and West Sumatera) still had no Posyandu Lansia in 2015 (Ministry of Health Republic of Indonesia, 2017). This suggests that services generally are more readily available in urban areas.

Since the annual cognitive screening for older people in primary care has been regulated in the new Ministry of Health bill (Ministry of Health Regulation No. 4/2019 on Technical Standard to Fulfill Quality of Basic Service in Minimum Standard of Healthcare Service, 2019), it should be available in all Puskemas (government-owned primary care centres) across country. However, considering that there are remote areas which are difficult to access by the Puskesmas staff, we have to see if this regulation is widely implemented across the country. So far, we were unable to identify data to confirm that community-based services are available in all areas.

References:

Ministry of Health Regulation no. 4/2019 on Technical Standard to Fulfill Quality of Basic Service in Minimum Standard of Healthcare Service (Permenkes no. 4/2019 tentang Standar Teknis Pemenuhan Mutu Pelayanan Dasar pada Standar Pelayanan Minimal Bidang. (2019). (Testimony of Ministry of Health Republic of Indonesia).

Ministry of Health Republic of Indonesia. Profil Kesehatan Indonesia 2017. Jakarta: Ministry of Health Republic of Indonesia [Internet]; 2018. Available at: https://pusdatin.kemkes.go.id/resources/download/pusdatin/profil-kesehatan-indonesia/Profil-Kesehatan-Indonesia-tahun-2017.pdf

There are more private residential homes in urban centres compared to rural areas. According to a press statement in 2016, Nairobi  County alone had several retirement and assisted living from less than ten the previous decade (Achuka, 2016). It is possible that the pressure of working and taking care of older persons is unlikely to take place in the cities hence family carers resort to retirement homes for the ageing parents. However, it is important to note that there are no public residential homes but only hospital-based palliative care services where people with dementia and at advanced stages are taken if they cannot afford private residential homes.

References:

Achuka, V. (2016). The new age dilemma of caring for ageing parents. Daily Nation, 14 May. Nairobi, Kenya. https://nation.africa/kenya/life-and-style/lifestyle/the-new-age-dilemma-of-caring-for-ageing-parents-1198666?view=htmlamp

 

No public services are available. While some community-based day centres are available for people with dementia, these services are offered in the private sector. Currently, FEDMA has knowledge of 9 day-centres for people with dementia and around 50 support groups in the country. These services are provided at the state level by the institutions affiliated to FEDMA.

Community based services are mainly provided by public services.

Services provided via the public sector have been covered above. We were unable to find relevant information for the private sector.

Community-based services for people with dementia are provided by the private sector through residential homes but admission is limited to those who can afford it (National Gender and Equality Commission (NGEC), 2016).

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

These services are provided by the private sector.

There is no specific data on people living with dementia who received these community-based care. However, we know that 27.84% of total older people in Indonesia received community-based care in Puskesmas in 2017 (Badan Pusat Statistik, 2017). In 2019, this figure grew up to 28.39% for men and 31.17% for women receiving community-based care from Puskesmas/Pustu. In addition, there were 3.19% of older men and 4.13% of older women who accessed UKBM (Upaya Kesehatan Berbasis Masyarakat), which covers Posyandu, Poskesdes, and POD/WOD. Posyandu, Poskesdes POD/WOD are services provided in villages or rural areas with the goal to support health services. Warung Obat Desa or Pos Obat Desa (WOD/POD) provides basic pharmacy services (Badan Pusat Statistik, 2019b).

References:

Badan Pusat Statistik. (2017). Statistik Penduduk Lanjut Usia 2017. xxvii + 258 halaman.

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

There are no estimates on the number of people who receive community-based care for dementia (through private residential homes) available.

No information available.

There is not yet a regulation or mechanism from the government for this. We have learnt informally that ALZI is testing a new program called ‘Care Navigator’ which provides online support to family carers by referring them to relevant services, connecting them to experts who can help them address problems they are facing at home, such as behavioural and psychological symptoms of dementia (BPSD), combined with education sessions on dementia care skills.

See information systems for dementia – Part 6. Mental disorders are often reported as aggregate data rather than individual conditions (Kiarie et al., 2019), making it difficult to monitor conditions such as dementia.

References:

Kiarie, H., Gatheca, G., Ngicho, C., & Wangi, E. (2019). Lifestyle Diseases: An Increasing Cause of Health Loss. Nairobi, Kenya. https://www.health.go.ke/wp-content/uploads/2019/01/Revised-Non-Communicable-Disease-Policy-Brief.pdf

No mechanisms alike are available.

PERDOSSI’s national clinical guideline takes into account the family members’ description of symptoms of the person suspected with dementia (PERDOSSI, 2015). The clinical guideline also considers family history of dementia in screening and diagnosing possible people with dementia. However, in the current national action plan for dementia, caregivers are not recognised at diagnosis stage (Ministry of Health Republic of Indonesia, 2015b). We could not identify any further information.

References:

Ministry of Health Republic of Indonesia. (2015b). National Strategy: Management of Alzheimer and Other Dementia Diseases: Towards Healthy and Productive Older Persons. Ministry of Health Republic of Indonesia.

PERDOSSI. (2015). Panduan Praktik Klinik: Diagnosis dan Penatalaksanaan Demensia. PERDOSSI.

Family members are neither registered nor recognized as part of dementia diagnostic services. However, their role in terms of responsibility to their family member with care needs is recognized in the care and protection of older members of society bill, 2018; PART III 59(f) which states that “Pursuant to Article 57 of the Constitution, every older member of society has the right to receive reasonable care, assistance and protection from their family and the State” (Republic of Kenya, 2018b).

References:

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.

Unpaid carers are not recognised or registered as part of any service, whether they are caring for someone with dementia, with any other chronic disease or disability.

There are no mainstream dementia-specific non-pharmacological interventions for carers or people living with dementia through the public sector. Private services are available, such as cognitive stimulation therapy, respite care, occupational therapy, arts therapy, etc. There are psychosocial activities through the primary health sector and social care sector for older people in general, such as older people’s centres, older people’s gyms, arts and craft groups, etc. Pharmacological treatment exist and are prescribed through GPs or specialists through a special pharmaceutical scheme called ‘high cost’ (or ‘alto custo’, in Portuguese). These are free of charge for service users; however, the process involved with getting this medicine monthly are often complicated and demands image tests (tomography, MRI), blood tests, neuropsychiatric assessment, and clinical assessment. It is common for people to take over one year to be able to get the pharmacological treatment through SUS due to the need to wait for all these documents, which also need to be regularly updated.

Pharmacological interventions available for persons with dementia to address BPSD symptoms are described in the Clinical Practice Guidelines by Indian Psychiatric Society (Shaji et al., 2018). Non-pharmacological interventions for people with dementia are person-centred and often also involve caregiver participation (Shaji et al., 2018). Some of the interventions available to address behavioural and psychological symptoms associated with dementia include music and dance therapy, multisensory stimulation, reminiscence therapy, etc. (Shaji et al., 2018). The availability of these interventions varies across regions.

References:

Shaji, K.S., Sivakumar, P.T., Rao, G.P., Paul, N., (2018). Clinical Practice Guidelines for Management of Dementia. Indian J. Psychiatry 60, S312–S328. https://doi.org/10.4103/0019-5545.224472

Some interventions were done in the context of research experiments. For instance, a senam poco poco (a type of dance) program was implemented among members of a community gymnasium to evaluate the dance program’s effectiveness in memory capacity (Nastiti et al., 2015). However, this program included only people aged 30 to 50 years old. Moreover, a study was conducted on the effects of poco-poco dance on the executive functions of type 2 Diabetes Mellitus patients with Mild Cognitive Impairment which showed that by doing biweekly poco-poco dance for 30 minutes is able to improve the executive functions (Theresa et al., 2019).

Group Cognitive Stimulation Therapy (CST), a form of nonpharmacological treatment which has been shown effective for dementia in different countries, has also been available in Indonesia, albeit in research settings. Most of this research took place in senior home settings (Sanchia & Halim, 2019; Triestuning & Sipollo, 2019; Yuliana, 2017), but it has also been studied in community-dwelling older people in Indonesia (Komalasari, 2014), and the adaptation of this intervention into the Indonesian context generally has shown promising results.

Music therapy has existed in research settings and as part of Alzheimer’s Indonesia service – although this is not a routine activity yet (Alzheimer’s Indonesia, 2019b). There seem to be considerable interest in this type of therapy. Research on music therapy in Indonesia has been conducted to examine the effect not only on cognitive function but also on the benefit for stress-coping mechanisms (Oktaviani, 2018), sleep problems (Mitayani, 2018), and loneliness in dementia (Arlis & Bate’e, 2019).

Other types of interventions could also be found in Indonesia, mostly in research settings. An experimental study using puzzle therapy was conducted among older people with dementia in one of the social service centres for older people in Yogyakarta Special Region, which showed that puzzle therapy was effective in improving the cognitive function of the elderly with dementia (Erwanto & Kurniasih, 2020). Other studies used traditional games as the intervention, such as halma (Andiny et al., 2016) or dakon (Yulianti, 2018).

Although some of the studies do not directly examine the effect on these interventions on behaviour, these interventions promote meaningful activities for the persons with dementia, which helps reducing BPSD. There is a potential for these interventions to exist outside research settings in Indonesia and future research delving into the feasibility is needed.

References:

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

Andiny, F., Haryanto, J., & Hadisuyatmana, S. (2016). Permainan halma mencegah progresiftas kerusakan kognitif pada lansia demensia. Jurnal Keperawatan, IX(2), 71–75.

Arlis, & Bate’e, W. V. (2019). Pengaruh Terapi Musik Tradisional Cina terhadap Kesepian pada Lansia di Panti Jompo Yayasan Guna Budi Bakti Kelurahan Martubung Kecamatan Medan Labuhan Kota Medan Tahun 2019. Jurnal Keperawatan Priority, 2(2), 1–14. https://media.neliti.com/media/publications/290559-pengaruh-terapi-musik-tradisional-cina-t-d87767cf.pdf

Erwanto, R., & Kurniasih, D. E. (2020). The effectiveness of puzzle therapy on cognitive functions among elderly with dementia at Balai Pelayanan Sosial Tresna Werdha ( BPSTW ) Yogyakarta , Indonesia. Bali Med J, 9(1), 86–90. https://doi.org/10.15562/bmj.v9i1.1628

Komalasari, R. (2014). Domain Fungsi Kognitif Setelah Terapi Stimulasi Kognitif. Jurnal Keperawatan Indonesia, 17(1), 11–17.

Mitayani, T. (2018). Penerapan Terapi Musik pada Asuhan Keperawatan Lansia dengan Gangguan Tidur di BPSTW Unit Budi Luhur Kasongan Bantul. http://eprints.poltekkesjogja.ac.id/1384/

Nastiti, D. A., Khamdiniyati, N., Latisi, M. P., Aprilia, L., & Nessya, I. A. (2015). Pengaruh Senam Poco-Poco Untuk Melawan Dimensia. Psikostudia, 4(1). http://e-journals.unmul.ac.id/index.php/PSIKO/article/view/2268

Oktaviani, P. (2018). Terapi Musik untuk Meningkatkan Kemampuan Coping Stress Pada Penderita Demensia. http://digilib.uinsby.ac.id/28776/1/Prilia Oktaviani_J91214121.pdf

Sanchia, N., & Halim, M. S. (2019). Terapi Stimulasi Kognitif untuk Lansia dengan Mild Cognitive Impairment: Studi Eksperimental di Panti Wreda. Neurona, 36(4), 258–264. http://www.neurona.web.id/paper-detail.do?id=1123

Theresa, R. M., Nasrun, M. W., Soejono, C. H., & Trihandini, I. (2019). The effects of poco-poco dance on the executive functions of type 2 diabetes mellitus patients with mild cognitive impairment achieved through improvements in neuronal functions and plasticity. International Journal of Pharmaceutical Research, 11(2), 595–601. https://doi.org/10.31838/ijpr/2019.11.02.097

Triestuning, E., & Sipollo, B. V. (2019). Cognitive Stimulation Therapy on Elderly with Dementia in Panti Werdha Pandaan, Pasuruan. International Conference of Kerta Cendekia Nursing Academy, 1, 139–144.

Yuliana, W. (2017). Pengaruh Stimulasi Otak terhadap Tingkat Kognitif Lansia di Panti Werdha Bhakti Luhur. Penelitian Kesehatan, 5(1), 1–5.

Yulianti. (2018). Dampak Program Elderly Day Care Service terhadap Kesejahteraan Lansia Studi kasus di Panti Sosial Tresna Werdha Budi Dharma Bekasi.

Management is mostly based on symptom reduction through pharmacological treatment (prescription by doctors). In counties where there are no psychologists to provide counseling services mainly to the caregiver, management is provided by psychiatric nurses or enrolled/nursing officers. The magnitude of the psychosocial interventions by the latter staff may not be sufficient because of lack of expertise as most health care workers are not very well equipped with information on dementia care. Caregivers are advised on the best ways to take care of their loved ones with little or no emphasis on self-care (Musyimi et al., 2019). The heavy reliance on informal care giving and families impacts negatively on the mental wellbeing and quality of life of caregiver especially in Kenya where respite care and caregiver training centers do not exist.

References:

Musyimi, C., Mutunga, E., & Ndetei, D. (2019). Stigma and dementia care in Kenya: Strengthening Responses to Dementia in Developing Countries (STRiDE) Project. In World Alzheimer Report 2019: Attitudes to dementia (pp. 121–122). London, UK: Alzheimer’s Disease International. https://www.alzint.org/u/WorldAlzheimerReport2019.pdf

No information is provided/available.

Not specifically for dementia. We are now working on the implementation of CST, but only locally in Sao Jose dos Campos, and still under research (state of São Paulo).

There are several social intervention initiatives for elderly people in general within their communities; however, not specifically for dementia or coordinated at central level. For instance, an initiative for prevention of dementia called “Omah Cegah Demensia” or “Grandma Preventing Dementia” was established in the village of Dusun Gulon Desa Pengkol Kecamatan Lendah, Kabupaten Kulon Progo. In addition, a service called “ojek lansia” was established in the village of Desa Penagan, Kabupaten Bangka. Ojek is typically a motorcycle-taxi service. Ojek lansia is specialised for elderly people to commute between their house, and the posyandu had successfully increased posyandu visits from 65% to 84% from 2017 to 2018 (Kencana, 2019).

References:

Kencana, M. R. B. (2019). Ojek Lansia, Inovasi Antar Jemput Orang Tua ke Posyandu.

Most of the services provided in residential homes may not target people with dementia but aim at improving the quality of life for older persons. Further information on the description of services is provided below (7.02.01.11) – home care services.

Management and care of people with dementia in most institutions is not specialised dementia care and little is known about (staff are not trained in) Social-Psychosocial interventions. Some exceptions of few day centres will have cognitive stimulation activities, but more specialised social-psychosocial interventions are not commonly available.

It is very likely that community-based services in rural areas and areas of difficult access (when existing) lack resources and well-trained health professionals.

Regional and city-level differences can be seen in the amount of posyandu lansia available. The facilities are concentrated in Java provinces, with more than 30,000 alone only in Jawa Tengah and Jawa Timur out of the total 72,510 posyandu lansia. Papua Barat and Sulawesi Barat each only have fewer than 200 facilities (Kementerian Kesehatan Republik Indonesia, 2019a).

References:

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

There is no information available on regional disparities in terms of residential homes. However, 31 out of 47 counties in Kenya have access to palliative care services (Hospice Care Kenya, 2018). Makueni County is the only county in Kenya that has integrated psychologists in the health system who are instrumental in providing palliative care and mental health services within hospitals.

References:

Hospice Care Kenya. (2018). Paving the way for universal access to palliative care in Kenya.  https://www.hospicecarekenya.com/other-news/paving-the-way-for-universal-access-to-palliative-care-in-kenya/

The few community-based services available are private sector services and little information is available on the type of services they provide, the profile or characteristics of their service users, etc. Therefore, regional diversity or differences are hard to establish. However, given that most associations are located in the state capitals or major cities, at least urban/rural large/small city differences in access (as with most health and social services) are present.

Yes. Regarding community-based services, the provision of home care services is offered by the SUS in terms of (1) home care visits through the Primary Care Program (that provides orientations about family structure, home infrastructure etc.), and (2) through the program “Better at Home” (Melhor em Casa) that provides domiciliary health care to people who need equipment and other health resources.  It is noted, however, that the provision of these services are less available in small towns and rural areas (Brazilian Ministry of Health, 2019a, 2019j). The family health strategy incorporates primary healthcare teams which are composed at least of one doctor (GP), one nurse, and several general health workers. General health workers visit all households under their responsibility for monitoring and education. Doctors and nurses can make visits to patients with mobility difficulties for a general health assessment, monitoring, or for a specific situation identified by the team. Home care services are also provided by private companies, such as formal care by demand (hourly paid), nursing care, home-based invasive treatment (intravenous antibiotics, oxygen therapy), physiotherapy (respiratory and motor), nutritional assessment, among other services. The family may also hire a formal care independently and pay for it informally (per hour) or formally as domestic employee (through formal employment that includes all the constitutional rights).

References:

Brazilian Ministry of Health. (2019a). Atenção Domiciliar.

Brazilian Ministry of Health. (2019j). SAGE – Sala de Apoio à Gestão Estratégica. http://sage.saude.gov.br/

There are few domiciliary care services available, which are provided by non-governmental organisations (ARDSI, 2010). As part of these services, volunteers or social workers visit families at their homes, providing support to caregivers in the form of counselling, guidance, and sometimes also aid persons with dementia to carry out activities of daily living such as grooming or bathing (ARDSI, 2010). For example, dementia organisations like NMT and private attender agencies like Portea, Life Circle Elder Care and more, run few home-based care programs primarily in urban areas where paid attenders are available to support home-based care.

References:

Alzheimer’s and Related Disorders Society of India. (2010). THE DEMENTIA INDIA REPORT 2010: Prevalence, impact, cost and services for dementia. New Delhi. Available from: https://ardsi.org/pdf/annual%20report.pdf

PUSAKA (Pusat Santunan dalam Keluarga, or “home-based care centre”) programs have been available since 2002 (Do-Le & Raharjo, 2002). PUSAKA is a community-based scheme that provides assistance and services for disadvantaged and/or poor older people within a neighbourhood. Each PUSAKA served approximately 45-60 older people. Services include home visits for older people who are too frail to visit PUSAKA centres, provision of meals, distribution of medicine and vitamins, and improvements in residences of older people including the provision of clean water, ventilation, and repair works. Most recently in 2020, there is a forum for PUSAKA staff in Jakarta for 2020-2025, indicating the program’s ongoing operation (Media Purna Polri, 2020).

In addition, unrelated to PUSAKA, The Ministry of Social Affairs’ programmes provide home care services for neglected and/or poor older people. As of 2014 there were 1,100 older people in 18 locations across Indonesia benefitting from the home care services (Media Purna Polri, 2020). (Please note that there is no information regarding the locations where this service is provided). Home improvement projects were done for 514 older people in 2013 and 644 people in 2014.

On the other hand, private home care services have grown immensely over the past few years to accommodate the increasing demand of the public. One of the private home care providers is Rukun Senior Living which has been providing an array of services for older people since 2011, including home care. RUKUN Home Care provided services such as daily living assistance, wound management, medical management, and so on, to improve the health condition and maximise the quality of life and wellness of the elderly. As of now, the services are available in certain areas of Jakarta, Bogor, Depok, Tangerang and Bekasi (Alzheimer’s Indonesia, 2019a).

References:

Alzheimer’s Indonesia. (2019a). 10 Gejala Awal Demensia Alzheimer. https://alzi.or.id/10-gejala-awal-demensia-alzheimer/

Do-Le, K. D., & Raharjo, Y. (2002). Community-Based Support for the Elderly in Indonesia: The Case of PUSAKA. “Southeast Asia’s Population In A Changing Asian Context,” June, 10–14.

Media Purna Polri. (2020). Kukuhkan Kepengurusan FK-Pusaka 2020-20215, Kadis Sosial DKI: Siapkan Program Bermanfaat Bagi Lansia.

According to an audit of residential institutions of older members of society in selected counties of Kenya (National Gender and Equality Commission, 2016), the available home-based care programmes are managed by faith-based organizations and provide basic services such as;

  1. Livelihood services e.g., feeding programmes,
  2. Counseling and psychosocial support services provided by nurses. This type of counseling includes giving hope and encouragement and providing entertainment to relieve stress,
  3. Healthcare services for chronic diseases such as pneumonia provided by resident nurses who refer cases to hospitals for advanced management.

The care and rehabilitation services are designed for senior citizens who live by themselves, are unwell or handicapped, or cannot properly look after themselves (National Gender and Equality Commission, 2016).

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

 

No public or private specialised dementia care home services are available.

As explained in Part 3, since 2016, Mexico City has operated the program ‘The Doctor in your House’ (‘Medico en tu Casa’). The goal of the program is to provide primary care for vulnerable population who, due to their disease conditions or disabilities, cannot attend medical services, with the help of a multidisciplinary team at home. However, under the new federal government administration, this program is being modified and its specific attributions and scope are still unknown. Mexico does not have a publicly funded national long-term care system; however, care is being provided in different ways. First, unpaid informal care at home, provided by family members, is the main source of care and in some cases, when economic resources are available, with support from domestic paid workers.

Healthcare service is a constitutional right in Brazil, and everyone should have access to it regardless of their age, gender, ethnicity, socioeconomic class, or geographic location. Social care, however, is provided depending on the individual needs identified by social care workers jointly with healthcare staff, as well as the socioeconomic condition of the family/person in need. There are only a few public care homes nationally, and access to such facilities is limited to very poor people. Formal day-to-day home care is not provided by the public sector, and is usually taken over by the family.

The criteria to be eligible for PUSAKA support are:

  • Aged 60 and over,
  • Widowed and from a poor family,
  • Holding a residence card (KTP/national ID) and a letter of recommendation from the Head of Neighbourhood Association (RT/RW) and the Head of the Village (Lurah),
  • Living within walking distance from the caregiver’s home.

However, in practice the programme was also open to the elderly who do not fulfil all the criteria (Do-Le & Raharjo, 2002).

References:

Do-Le, K. D., & Raharjo, Y. (2002). Community-Based Support for the Elderly in Indonesia: The Case of PUSAKA. “Southeast Asia’s Population In A Changing Asian Context,” June, 10–14.

Most residential homes do not have a clear admission policy except the ability to pay for the services (National Gender and Equality Commission, 2016).

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

Care home services in general are available through private services for those who can afford them and through 10 public institutions that provide services for those who are destitute or have no family members to take care of them. This leaves a possible large group of older adults with no access to long-term care services.

Yes. There is one federation (FEBRAZ) composed of four associations.

Yes. The Alzheimer’s and Related Disorders Society of India (ARDSI) was founded in 1992. It is a registered non-profit volunteer organisation dedicated to dementia care, support, awareness and anti-stigma campaigns, training, and research. Through various platforms, ARDSI has engaged in developing dementia care homes, day care centres and memory clinics as well as conducting training programmes for family caregivers, medical health workers, and social workers. The national organisation has 22 chapters in various cities across the country. ARDSI is the first Afro-Asian organisation to receive full membership to Alzheimer’s Disease International (ADI), UK. ARDSI has been registered under the Travancore Cochin Literary, Scientific and Charitable Societies Registration act XII, 1955 (Reg. No. S.N. ER 243/93) in 1993.

The Nightingales Medical Trust (NMT) is another non-profit organization that was established in 1998, it is based in Bangalore and is working to support persons with dementia and senior citizens through several programmes and services.

There is a national NGO dementia association, Alzheimer’s Indonesia, which is also a member of ADI. It was first founded as Asosiasi Alzheimer Indonesia in 2000, and in 2013 it evolved into the Alzheimer’s Indonesia Foundation. It has been recognised as an ADI member since 2009 (Alzheimer’s Indonesia, 2019b).

References:

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

The Alzheimer’s and Dementia Organization of Kenya (ADOK) was founded in 2016 by a group of family caregivers. ADOK works to raise awareness of Alzheimer’s and provide support to those affected with Alzheimer’s and other forms of Dementia (Alzheimer’s & Dementia Organization Kenya (ADOK), 2019).

References:

Alzheimer’s & Dementia Organization Kenya (ADOK). (2019). Training. https://alzkenya.org/wp-content/uploads/2019/08/ADOK_Newsletter.pdf

 

There are several NGOs in Mexico. The main organisation is the National Alzheimer Federation, FEDMA (Federación Mexicana de Alzheimer). FEDMA groups 20 associations from different states of the country.

FEBRAZ has a national office.

The ARDSI head office is based in Delhi and the sub-national office is located in the state of Kerala.

Alzheimer’s Indonesia national office is located in Jakarta. It currently has regional chapters in 18 cities/towns in Indonesia and 3 in other countries (Groningen, Netherlands; San Francisco, USA; Geneva, Switzerland) to serve the Indonesian diaspora there (Alzheimer’s Indonesia, 2019b).

References:

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

Alzheimer’s and Dementia Organization of Kenya has its main office situated in the capital of Kenya, (Nairobi): Soin Arcade 3rd Floor in Westlands, but has no other sub-national offices (Alzheimer’s & Dementia Organization Kenya (ADOK), 2019).

References:

Alzheimer’s & Dementia Organization Kenya (ADOK). (2019). Training. https://alzkenya.org/wp-content/uploads/2019/08/ADOK_Newsletter.pdf

FEDMA has a national office and works with its state-level affiliated associations.

They are only volunteers.

While ARDSI does have paid staff, most of the work carried out by the organisation is by volunteers.

The majority of staff are volunteers.

The majority are volunteers who receive no payment. As with care homes, most of the services they offer are provided by volunteers (self-contact) or student volunteers who carry out these activities as part of their professional practices (for example, psychology, social work, nursing).

Awareness campaigns, home care services, training and support for carers, training for healthcare professionals and community health agents, activities for people living with dementia.

All ARDSI chapters run in their own capacity following basic guidelines from the head office. The organisation carries out dementia awareness and anti-stigma campaigns throughout the year. Particularly during World Alzheimer’s month in September, the different chapters conduct several public events. The ARDSI also provides a few dementia-related services to support caregivers and persons with dementia. Some of the chapters run day-care/activity centres for people with dementia as a social service for minimal charges (charges are only to cover operational costs). The organisation also conducts dementia research and holds an annual conference.

Table 7.3 List of activity centres/day cares/ institutions run by each of the ARDSI chapters.

Serial No. Services provided by ARDSI chapters City
1. ARDSI Cochin Harmony Home, Cochin
2.

 

ARDSI Comprehensive Dementia Day Care Centre, Cochin
3. Dementia Respite Care Centre Thrissur
4. ARDSI Malabar Harmony Home Kozhikode
5. Full Time Dementia Care Centre Thiruvananthapuram
6 Dementia Day Care Centre Kolkata
7 Dementia Day Care Centre New Delhi
8 Dementia Day Care Centre and activity centre Hyderabad
9 Dementia day care centre Guwahati
10 KSID SMRUTHIPADHAM Day Care centre, Kunnamkulam
11 KSID SMRUTHIPADHAM Full time care centre, Ernakulam
12 Dementia Day Care centre, SMRITIVISHWAM Mumbai

 

The association provides:

  • Caregivers meetings (monthly in Jakarta, less often in the regional chapters),
  • Education sessions,
  • Workshops on Dementia Care Skills.

ADOK provides the following services (Alzheimer’s & Dementia Organization Kenya, 2019):

  • Care giver training: with a limited number of trained doctors and effective patient-care options, ADOK provides training on:
    1. Understanding Dementia,
    2. Understanding Alzheimer’s,
    3. Effectively communicating with an Alzheimer’s patient,
    4. Dealing with care giver burn out,
    5. Dealing with behavior change (aggression),
    6. Safety.
  • Support groups: Through monthly support group meetings, caregivers of persons with dementia meet and talk about their experiences in providing care to persons with dementia while giving each other support.
  • Research and advocacy: ADOK conducts advocacy in the media, churches, and among community health workers.
References:

Alzheimer’s & Dementia Organization Kenya (ADOK). (2019). Training. https://alzkenya.org/wp-content/uploads/2019/08/ADOK_Newsletter.pdf

Currently FEDMA has a help line providing general information and orientation services. All its state-level affiliates offer diverse services such as day care, carer training and general information on dementia and care recommendations for carers. At national level there are currently 21 associations that are part of FEDMA. Most of them provide support group sessions, general information on dementia and care for people with dementia. Support groups are usually quite diverse depending on who delivers them: geriatricians, nurse, occupational therapist, psychologist, among others.

Generally, the activities of the ARDSI are not funded by the government. However, the National Institute of Social Defence (NISD) under the Ministry of Social Justice and Empowerment, provided funding to the ARDSI to train caregivers of people with dementia; however, some of the courses have been discontinued.

The government does not fund any of ALZI activities. However, according to ALZI internal reports, in some collaboration with government institutions, they provide in-kind support such as venue and meals.

None of the activities are funded by the government. ADOK is a Non-Governmental Organization that depends on donors for funding (Alzheimer’s & Dementia Organization Kenya, 2019).

References:

Alzheimer’s & Dementia Organization Kenya. (2019). Home: Our programs. https://alzkenya.org

 

No. However, FEBRAZ and local associations are now being involved in the dementia policy development as part of STRiDE activities.

ARDSI developed the Dementia India Report in 2010 (ARDSI, 2010), the Dementia India Strategy report in 2018 (ARDSI, 2018), and Dementia in India Report in 2020 (Kumar CST et al, 2019). The 2018 Dementia India Strategy Report was submitted to the Ministry of Health and Family Welfare (MoHFW) (ARDSI, 2018).

References:

Alzheimer’s and Related Disorders Society of India. (2010). THE DEMENTIA INDIA REPORT 2010: Prevalence, impact, cost and services for dementia. New Delhi. Available from: https://ardsi.org/pdf/annual%20report.pdf

Alzheimer’s and Related Disorders Society of India. (2018). Dementia India Strategy Report.  Alzheimer Disease International. Available from https://ardsi.org/pdf/Dementia%20India%20Strategy%20Report%202018.pdf

Kumar CTS, Shaji KS, Varghese M, Nair MKC (Eds) Dementia in India 2020. Cochin: Alzheimer’s and Related Disorders Society of India (ARDSI), Cochin Chapter, 2019. Available from: https://dementiacarenotes.in/dcnfiles/Dementia-in-India-2020.pdf

The organisation has worked closely with the government on accelerating the launch of the National Dementia Policy in 2016. It has also been involved in the development of a national guideline on dementia diagnosis and management in the primary care which is currently being drafted by the Ministry of Health since 2016.

Through the STRiDE project, ADOK contributed to the National Dementia Plan (currently under development) by the Ministry of Health, Africa Mental Health Research and Training Foundation, and ADOK (London School of Economics (LSE), 2018; C. Musyimi et al., 2019).

References:

London School of Economics (LSE). (2018). Strengthening Responses to Dementia in Developing Countries (STRiDE). https://www.lse.ac.uk/cpec/research/projects/dementia/stride

Musyimi, C., Mutunga, E., & Ndetei, D. (2019). Stigma and dementia care in Kenya: Strengthening Responses to Dementia in Developing Countries (STRiDE) Project. In World Alzheimer Report 2019: Attitudes to dementia (pp. 121–122). London, UK: Alzheimer’s Disease International. https://www.alzint.org/u/WorldAlzheimerReport2019.pdf

Yes. FEDMA was involved in the process of development and publication of the National Alzheimer Plan.

Although there are services available in most regions of Brazil, the availability is higher in the Southern regions and the accessibility is easier in urban areas. One association also offers a distance service: Helpline – with counselling app, which benefits people from several Brazilian zones, including Brazilians abroad. There are no systematic activities in rural areas. There is limited attention in more distant areas, such as in the Amazon region.

Most service providers are from cities or urban areas. The Ellen Thoburn Cowen Memorial (ETCM) Hospital, the Nightingales Dementia Care Centre located in Kolar, are examples of centres in smaller towns and areas on the outskirts of Bangalore. The Nightingales Dementia Care Centre also offers tele-medicine based care. Another rural setup is based in Shantiniketan, near the city of Kolkata, which is run by the ARDSI Kolkata chapter.

Plenty of dementia-related services are provided through Alzheimer’s Indonesia. For instance, caregivers’ meetings, knowledge upskilling on Alzheimer’s for the Purple Troop cadres, early detection and screening of dementia, and awareness-raising campaigns about dementia involving youth (Alzheimer’s Indonesia, n.d.). In general, the activities are categorised into four main groups: caregiver meetings, education and training, seminars, and World’s Alzheimer Month. Alzheimer’s Indonesia has eighteen chapters across major cities in Indonesia (Jakarta, Bali, Bandung, Bekasi, Bengkalis, Bogor, Depok, Jakarta, Kupang, Malang, Manado, Medan, Salatiga, Semarang, Solo, Surabaya, Tangsel, and Yogyakarta).

References:

Alzheimer’s Indonesia. (n.d.). Kegiatan.

The services provided by ADOK are only available in Nairobi, Kenya’s capital. It is therefore only accessible to people living in Nairobi and the neighbouring towns or those who can travel to participate in the support groups. However, there are some caregiver tips that have been provided on the website (Alzheimer’s & Dementia Organization Kenya, 2019).

References:

Alzheimer’s & Dementia Organization Kenya. (2019). Home: Our programs. https://alzkenya.org

 

As previously mentioned, most services are provided locally by NGOs. There is no systematic information gathered to assess variability or detailed characteristics of their services, but, in general, services are available in state capitals and larger cities. Out of the 32 States, 19 currently have a dementia/Alzheimer’s association. They all have support groups, but only 6 have day centres, and there are 9 day centres, of which 4 are located in Mexico City.

No, there is no associated cost.

Full-time dementia day-care and residential care homes do charge for their services including organisations like ARDSI and NMT. Although subsidised rates are offered to lower-socioeconomic groups.

There is no information on payment for accessing services for people with dementia or their carers. However, Alzheimer’s Indonesia sells various merchandise such as books and stationeries to raise funds for the operational costs of the provided services (https://store.alzi.or.id/product). We have learnt informally that ALZI is testing a new program called ‘care navigator’ which provides online support to family carers by connecting them to experts who can help them address problems they are facing at home, such as behavioural and psychological symptoms of dementia (BPSD), combined with education sessions on dementia care skills. One session costs about IDR 500,000 (approximately USD 30, rate as of July 2020), which is put towards the operational costs of the programme.

The services provided by Alzheimer’s and Dementia Organization of Kenya are free.

While some services such as support groups are mostly free of charge or they may ask for small fees or “recovery” costs, all-day care centres charge a fee as well as care homes given that they are private and they make up most of their income to be then used for carers salaries, meals, etc., provided by them.

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

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

References:

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

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

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