DESK REVIEWS | 07.01. Overview of the dementia care system

DESK REVIEW | 07.01. Overview of the dementia care system

In the public health system (SUS) diagnosis would typically follow a pathway where a case would initially be identified by a GP at a Primary Care Unit and would be referred to a specialist for confirmation (usually neurologist or geriatrician). Yet in the public health system, people may also be diagnosed at other levels of care when people access them for other reasons, and clinicians may suspect of dementia (A&E, general hospital, other specialities outpatient care). In the private sector, the typical pathway is that families/patients who are suspecting that something is wrong, may take the patient directly to a specialist, usually a neurologist. As in the public services, clinicians from the private sector may identify cases also in other levels of care (hospital outpatient care).  It is important to remember that rates of underdiagnosis are high in Brazil.

Families usually approach general physicians for the assessment of their older relative showing symptoms suggestive of dementia. Specialists who are trained in dementia (neurologists, psychiatrists, or geriatrics) would deliver a diagnosis, but there are some primary physicians with an MBBS degree (Bachelor of Medicine, Bachelor of Surgery) who diagnose dementia without having special qualification or specific training to do so (Kumar et al., 2018). Families are advised by primary physicians to visit specialists for diagnosis and treatment, but due to lack of availability of adequate specialists, costs associated with services, and low levels of awareness, very few families may visit specialists (Kumar et al., 2018; Sathianathan & Kantipudi, 2018).

In summary, persons with dementia and their families may consult a general practitioner based on their convenience and prior experiences (Hossein et al., 2017). They may also see a specialist directly or may be referred to one (i.e., the specialist that usually provides the dementia diagnosis) (Hossien et al., 2017).

References:

Hossien, S.A., Loganathan, S., Kolar Sridara Murthy, M., Palanimuthu Thangaraju, S., Bharath, S., Varghese, M., 2017. Pathways to care among persons with dementia: Study from a tertiary care center. Asian J. Psychiatr. 30, 59–64. https://doi.org/10.1016/J.AJP.2017.07.002

Kumar, CT Sudhir; Kishore, S., 2018. The dementia diagnosis process, Part 1: Getting started and selecting a doctor | Dementia Care Notes. Available from: https://dementiacarenotes.in/dementia-diagnosis-find-doctor/

Sathianathan, & Kantipudi, S. J. (2018). The dementia epidemic: Impact, prevention, and challenges for India. Indian Journal of Psychiatry, 60(2), 165. https://doi.org/10.4103/PSYCHIATRY.INDIANJPSYCHIATRY_261_18

In 2015, the Indonesian Neurologist Association/Perhimpunan Dokter Spesialis Saraf Indonesia (PERDOSSI) issued a clinical practice guideline on dementia diagnosis and management. The document outlined diagnostic paths in the different levels of healthcare services (PERDOSSI, 2015).

In primary care, patients coming with subjective complaints, change of activities of daily living (ADL), or brought to the clinic due to the family/carer’s concern on their cognitive changes will be considered for assessment. The physician should interview the patient and/or the carer about the history of the complaint and then perform physical examination of the patient, especially of the cardiovascular and neurological system. The patient’s cognitive function will then be assessed using the Mini Mental State Examination (MMSE). The physician should also document changes on the patient’s activities and cognitive function using the AD8 instrument based on the carer’s report. Patients with abnormalities in clinical or neurological examinations, MMSE score of less than 24, or AD8 score of 2 or more should be referred to a neurologist (in the second level of healthcare services) or to a memory clinic (in the third level of healthcare services). If these criteria are not met, the patient is advised to return for a check-up in 6 months (PERDOSSI, 2015).

In hospital (secondary level of healthcare), patients presenting with complaints suggestive of dementia or referred by the primary care will undergo a similar process to that of primary care. In an addition the Geriatric Depression Scale should be performed to exclude depression as well as a clock-drawing test (CDT), and the Montreal Cognitive Assessment (MoCA). Blood sample should be taken to check the patient’s lipid profile, renal and liver function, glucose level, and electrolytes. A CT-scan should be done to aid diagnosis. Patients with abnormalities in physical examination, AD8 > 2/MMSE < 24/CDT < 24/MoCA < 24 are advised to be referred to a memory clinic (PERDOSSI, 2015).

In the memory clinic (tertiary healthcare level), additional exams performed include other neuropsychological tests, the Neuropsychiatric Inventory (NPI), other blood tests (fasting blood glucose, folic acid, and vitamin B12 levels, thyroid function) and an electrocardiogram. Other specific tests according to indication can also be ordered, such as VDRL for syphilis or a HIV test. An MRI (preferable) or CT should be performed, followed by electroencephalogram or lumbar puncture if indicated. These additional exams are expected to aid diagnosis of dementia and its causes (PERDOSSI, 2015).

During our interview for WP3 with a general practitioner managing a geriatric clinic of a primary care centre, we learnt that dementia screening practice is not routine practice. The physician informed us that most of the dementia cases documented in that centre already received a diagnosis in the hospital and then reported back to the centre for documentation and administrative requirements (Source: WP3 FGD info from GP). However, this is contradictory to another statement by the physician. The GP explained that based on the new Ministry of Health’s regulation no. 4/2019 on the Minimum Standard of Service, the centre has now routinely started to screen older people with several tools that include a cognitive instrument (Abbreviated Mental Test) (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). More about this regulation will be discussed in this document in Part 7, Dementia Care System Organisation, Community-based Services for Dementia, and Diagnostic services (in primary care)).

The stratified screening and diagnosis pathway outlined above seems to be typical of patients using the National Health Insurance. However, the pathways of patients with self-funded access to healthcare vary greatly depending on the patient’s economic status and geographical area. Some patients decide to go directly to the secondary or tertiary healthcare providers, or even undertake tests abroad. Some secondary health centres have sufficient resources to perform the examinations outlined for tertiary health care providers and thus can provide the level of diagnosis at secondary level. It is also important to note that a lot of patients receive their diagnosis of dementia whilst being treated for other issues (WP3 FGD info from neurologist and GP).

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).

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

A typical path to dementia diagnosis in Kenya is through assessment by a doctor via physical examination, review of medical history, MRI scans and characteristic changes in thinking, behaviour, and daily functioning. Laboratory tests are mainly done for younger people, to exclude any other possible causes that are treatable. In instances where one is diagnosed with dementia, referrals are made to neurologists (if resources allow) so as to determine the form of dementia for proper disease management (Mbugua, 2018).

References:

Mbugua, S. (2018). The condition affects the elderly, but is not a normal part of ageing. Daily Nation, 8 July. Nairobi, Kenya. https://nation.africa/kenya/healthy-nation/dementia-brain-disease-that-robs-people-of-sunset-years-64456

 

Mexico does not have a Dementia Care system in place at the moment and, therefore, there is no typical path for diagnostic assessment. Additionally, given the lack of knowledge and high stigma, usually people with “possible” dementia and/or their family members only seek services when advanced symptoms are present. Social security institutions in the largest metropolitan areas can refer people with suspected cognitive impairment or visibly advanced symptoms of some type of dementia to a specialist for further evaluation and some diagnostic tests. However, entry access will depend on the availability of specialists, such as psychiatrists, geriatricians, or neurologist who, as described in part 2, are scarce. Therefore, a large percentage of people remain undiagnosed. Furthermore, the few public institutions that have Memory or Dementia care services (such as the National Institute of Neurology in Mexico City), are the only places that can conduct rigorous evaluations and diagnostic assessments, as they have the human and technological resources available. Unfortunately, they can only oversee a very small number of those in need. Very few memory clinics are in place and only few third level public hospitals include specialists that are trained to diagnose and provide treatment and management for dementia.

We do not have high quality data on this, but according to our own study, more than 70% of people living with dementia in Brazil do not have a diagnosis (Nakamura et al., 2015).

References:

Nakamura, A., Opaleye, D., Tani, G., & Ferri, C. P. (2015). Dementia underdiagnosis in Brazil. The Lancet, 385(9966), 418–419. https://doi.org/10.1016/S0140-6736(15)60153-2

1 out of 10 people receive a dementia diagnosis, treatment, or any care in India (Nulkar et al., 2019).

References:

Nulkar A, Paralikar V, Juvekar S. (2019). Dementia in India – a call for action. Journal of Global Health Reports. 2019;3:e2019078. doi:10.29392/joghr.3.e2019078

There has been no research conducted to detect the percentage of people with dementia that have received a diagnostic assessment in Indonesia.

The prevalence of dementia in Kenya is unknown due to lack of available data.

No data is available on this. In addition to the problems stated in 07.01.01., Mexico does not have a national registry in place at the moment, and therefore, no aggregated data exist.

Such information was not found.

We have not been able to obtain published data on the number of diagnostic assessments.

Dementia cases are not routinely monitored in Kenya. According to a systematic analysis for the global burden of disease study involving 195 countries (including Kenya) in 2016, the number of prevalent cases for dementia in Kenya was 61,120 (Nichols et al., 2019).

References:

Nichols, E., Szoeke, C. E. I., Vollset, S. E., Abbasi, N., Abd-Allah, F., Abdela, J., … Murray, C. J. L. (2019). Global, regional, and national burden of Alzheimer’s disease and other dementias, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016. The Lancet Neurology, 18(1), 88–106. http://doi.org/10.1016/S1474-4422(18)30403-4

We do not have data on this for the country, neither for smaller areas. According to our previous study conducted in one city (São José dos Campos, in São Paulo state), we found that rates of under diagnosis were lower in the rich areas of the city (Nakamura et al., 2015).

References:

Nakamura, A., Opaleye, D., Tani, G., & Ferri, C. P. (2015). Dementia underdiagnosis in Brazil. The Lancet, 385(9966), 418–419. https://doi.org/10.1016/S0140-6736(15)60153-2

There are differences in diagnostic assessment across the country due to diversity in demographics (rural/urban, region and state) and socioeconomic status. Diagnostic tools have been developed and/or adapted to account for this diversity. The Indian Council of Medical Research (ICMR), Department of Health Research (2021), released a Neurocognitive Tool Box. It is culturally validated and available in 5 Indian languages (Hindi, Bengali, Telugu, Kannada and Malayalam) (ICMR, 2021). The 10/66 Dementia Research Group has developed a cross-culturally validated dementia diagnostic algorithm (Prince et al., 2008). There are also other neuropsychological assessments that have been translated into various regional languages as well as culturally adapted to the Indian context. These include: Addenbrookes Cognitive Examination (ACE) (Version III and Version R), Mini-Mental State Examination (MMSE) and Montreal Cognitive Assessments (MoCA) (Porrselvi and Shankar, 2017).

Table 7.1 shows the Cognitive screening measures with Indian adaptions:

Global Screening Measures Indian adaptation Literacy / socioeconomic background
Mini Mental State Examination Hindi mental state examination (HMSE) Hindi-speaking, illiterate, rural elderly population.
Addenbrooke’s Cognitive Examination-Revised and ACE III Tamil, Hindi, Indian English, Kannada, Telugu, Urdu, Malayalam and Marathi. Literate and illiterate versions.
Montreal Cognitive Assessment (MoCA) Bengali, Kannada, Malayalam, Marathi, Tamil, Telugu, Hindi, and Urdu. Computerized version in development.
Community Screening Instrument for Dementia   Developed for use in primary care settings by non-specialist health workers.
Kolkata Cognitive Screening Battery Bengali Test developed for Kolkata population.
Mattis Dementia Rating Scale Hindi Hindi-speaking Indian population.
Rowland Universal Dementia Assessment tool (RUDAS) Malayalam Kerala state population
Picture-based memory impairment screen Used for all languages Culture-fair (measure cognition without the influence of sociocultural factors), picture-based cognitive screen designed to be administered by non-specialists.

Source: (Porrselvi and Shankar, 2017)

References:

Indian Council of Medical Research (ICMR). 2021. INDIAN COUNCIL OF MEDICAL RESEARCH -NEURO COGNITIVE TOOLBOX (ICMR-NCTB). Available from: http://brandp.in/icmr/index.html

Porrselvi, A.P., Shankar, V., 2017. Status of Cognitive Testing of Adults in India. Ann. Indian Acad. Neurol. 20, 334–340. https://doi.org/10.4103/aian.AIAN_107_17

Prince, M. J., De Rodriguez, J. L., Noriega, L., Lopez, A., Acosta, D., Albanese, E., … & Uwakwa, R. (2008). The 10/66 Dementia Research Group’s fully operationalised DSM-IV dementia computerized diagnostic algorithm, compared with the 10/66 dementia algorithm and a clinician diagnosis: a population validation study. BMC public health, 8(1), 1-12. https://doi.org/10.1186/1471-2458-8-219

To date, we found no guidelines specifying any difference in diagnostic assessment according to geographical areas. However, the practice might differ according to availability of healthcare facilities.

There are no national or county guidelines in Kenya on dementia management, making clinicians to rely on the typical path described previously. In one of the counties (Makueni) in Kenya, clinicians were trained by the Africa Mental Health Foundation (NGO) using the mental health Global Action Programme (mhGAP) (World Health Organization, 2016) to identify and manage priority conditions such as dementia. However, due to limited mental health budget, it was not possible to roll-out the programme to all the counties in Kenya  (Mutiso, Gitonga, et al., 2018). This makes it difficult to identify any differences in assessment in the different regions.

References:

Mutiso, V. N., Gitonga, I., Musau, A., Musyimi, C. W., Nandoya, E., Rebello, T. J., … Ndetei, D. M. (2018). A step-wise community engagement and capacity building model prior to implementation of mhGAP-IG in a low-and middle-income country: a case study of Makueni County, Kenya. International Journal of Mental Health Systems, 12(1), 1–13. https://doi.org/10.1186/s13033-018-0234-y

World Health Organization. (2016). mhGAP Intervention Guide version 2.0. Geneva, Switzerland. https://www.who.int/publications/i/item/9789241549790

 

No data is available. However, as specialist doctors are scarce and those available work in the main metropolitan areas, we would expect smaller cities and rural areas to have even less people with access to a diagnostic assessment.

We do not have standard long-term care for people living with dementia. Within the public sector, people living with dementia who are diagnosed, can get medication for free and will have to get prescription every few months. They would need to come for an assessment by a specialist (neurologist or geriatrician) every 6 months and get a new prescription. Primary care units offer outreach services for those in late stages (health care team visits the patient).

Families predominantly provide long-term care for persons with dementia at their homes (ARDSI, 2010). There is multidisciplinary care provided by few clinics located in tertiary referral hospitals. The team generally consists of specialists such as a neurologist or psychiatrist, psychologist, psychiatric social worker, speech therapist, occupational therapist and are often associated with NGO partners like ARDSI chapters, NMT, and Samvedna which further provide in-depth support.

For example, the Dr R. M. Verma Sub-speciality block at NIMHANS has 10 in-patient beds exclusive for persons with dementia, which are provided at subsidised rates. This speciality block provides counselling, cognitive stimulation and speech therapy for the persons living with dementia, and also provides family caregivers with dementia counselling and support.

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

The national strategy document states that the stakeholders responsible for the achievement indicators of the fourth action step (cognitive screening, diagnosis, and management of dementia) are the ‘Ministry of Health, the Ministry of Home Affairs, and the Ministry of Social Affairs (according to the ability at each level) (Ministry of Health Republic of Indonesia, 2015a, p.29). We assume that this would also include the care coordination. However, this document does not provide further details on the management or care coordination pathway.

The Alzheimer association in Indonesia has taken its steps to support care coordination. 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.

References:

Ministry of Health Republic of Indonesia. (2015a). Ministry of Health Regulation No. 67/2015 on Geriatric Services in Public Health Center (Permenkes No. 67/2015 Tentang Penyelenggaraan Pelayanan Kesehatan Lanjut Usia Di Pusat Kesehatan Masyarakat). Kementrian Kesehatan Indonesia, 1–140.

Neurologists, psychiatrists, geriatricians, psychologists, occupational, and physical therapists, specialist nurses are few but are responsible for coordinating the care of people with dementia (Alzheimer’s Disease International, 2017). Once neurologists make a diagnosis through clinician judgment and based on medical history, laboratory tests, and scans performed by laboratory technicians and radiologists respectively, they prescribe medications. Psychologists or psychiatric nurses provide psychosocial interventions while other specialists like psychiatrists and occupational therapists are referred for further management. Often, the specialists are not available (particularly in rural areas) and therefore reliance is on the general medical officers and nurses who may not have the expertise on dementia care (Musyimi et al., 2019).

References:

Alzheimer’s Disease International. (2017). Dementia in sub-Saharan Africa: Challenges and opportunities. London, UK. https://www.alzint.org/u/dementia-sub-saharan-africa.pdf

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

 

Mexico does not have a long-term care system and, therefore, these services are not available within this context. Regarding health system services, there are no specific areas responsible for coordinating care. Hence, no specific care strategies or programs for people with dementia are currently in place.

No, there is no such service specifically dedicated to dementia. However, any person can have access to mental health care if they need.

There are limited dedicated dementia day-care centres, respite care, and long-term care homes across the country situated mainly in urban locations or metropolitan cities. In 2010, there were about 6 residential care facilities, 10 day-care centres with medical attention and supervision, 6 domiciliary care services providing care at home, 100 memory clinics and 10 dementia help-lines across India (Alzheimer’s & Related Disorders Society of India (ARDSI), 2010). The numbers are gradually increasing due to an increase in awareness and greater need for dementia services (Kishore, 2019a).

Table 7.2 Dementia day-care centres in India

Serial No. City Specification Number of day cares
1 Bangalore Three day-care/active ageing centres managed by the Nightingales Medical Trust/ ARDSI Bangalore Chapter 3
2 Chennai Dignity Day Care by Dignity Chennai, and Day care of DEMCARES (SCARF) 3
3 Delhi/ NCR Managed by ARDSI Delhi Chapter 1
4 Guwahati Managed by ARDSI Guwahati Chapter 1
5 Hyderabad Dementia Activity Centre by ARDSI Hyderabad-Deccan, AND Red-Cross – Nightingales Trust Dementia Day Care Centre 2
6 Kochi ARDSI Comprehensive Dementia Day Care Centre by ARDSI Kochi Chapter 1
7 Kolkata Smriti Sudhay by ARDSI Kolkata Chapter 1
8 Mumbai Smriti Vishvam by ARDSI Mumbai Chapter, Aarambh by Aaji Care 4
9 Pune Rainbow Day Care, Sanctus Rehabilitation Care Foundation (SRCF), Ananddham, JyesthaNagrikVirangula Kendra 4
10  Patna Day Care Centre by Helpage 1
11  Thrissur Smruthipadham (day care) at Kunnamkulam 1
      Total- 22

Source (Kishore, 2019a)

There are few other dementia daycares run by private and other organisations such as Nema Elder care (Gurgaon), Kriti Elder care (Gurgaon), Samarth (Mumbai), Varista (Mumbai), Dignity Dementia Day Care Centre (Chennai), Demcare – Centre for Active Aging (Chennai) and other which are not listed.

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

Kishore, S. (2019a). Dementia Caregiver Resources across India | Dementia Care Notes. Available from: https://dementiacarenotes.in/resources/india/

No, there are no dedicated services supporting people with dementia after a diagnostic assessment. However, first steps to develop these kinds of services have been made locally. The PERDOSSI guideline provides scientific recommendation regarding a variety of nonpharmacological approaches to dementia (PERDOSSI, 2015), but it does not advise where these dementia-specific services could be accessed in Indonesia.

In addition, there are several institutions offering dedicated services for people with dementia in Indonesia. These include the Adiyuswa Senior Day Care in Radjiman Wediodiningrat Psychiatric Hospital, Lawang, East Java (RSJ Dr. Radjiman Wediodiningrat, 2016), and RUKUN Senior offers a Dementia Day Care Programme in RUKUN Dementia Support Centre Cipete, Jakarta and RUKUN Senior Care, Sentul, West Java (RUKUN Senior Living, n.d.-a). General geriatric support services not specific for dementia are more widely available.

Furthermore, the private hospital chain Siloam has established a Memory and Aging Centre in April 2016 (Siloam Hospitals, n.d.). MAC claims to not only serve patients with dementia, but also as a place of development, medical services, research, which aims to be integrated with patient care in the long run (Handayani, 2016).

References:

Handayani, I. (2016). Siloam Hadirkan Pusat Layanan Pasien Demensia.

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

RSJ Dr. Radjiman Wediodiningrat. (2016). Psikogeriatri – Klinik Daycare ADIYUSWA. http://rsjlawang.com/main/fasilitas/psikogeriatri

RUKUN Senior Living. (n.d.-a). Dementia Day Program. Retrieved September 7, 2019, from https://rukunseniorliving.com/dementia-day-program/

Siloam Hospitals. (n.d.). Memory Clinic.

The Alzheimer’s and Dementia Organization in Kenya provides support services to persons with dementia, especially their carers, and equips them with skills necessary to care for the persons with 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

Mexico does not have dedicated services supporting people with dementia.

The links may exist, but they are not well coordinated and integrated. However, there is the Family Health Strategy that facilitates integration between the three levels of care and that supports any type of healthcare needed by the population.

The referral system is regulated through the Ministry of Health’s Regulation no. 1/2012 and no. 4/2018 as well as through the regulation Health Insurance Administration Body of Indonesia (Badan Penyelenggara Jaminan Sosial-Kesehatan (BPJS-Kesehatan)) which establish links between different levels of healthcare services. The referral system also regulates the type of services that can be provided in primary care and how patients can be referred to specialist care services, including dementia cases (there are 14 public hospitals with geriatric integrated care teams).

In primary care settings with a mental health clinic within the hospital, treatment for dementia focuses on reducing symptoms and improving the quality of life of the person with dementia by engaging caregivers. Pharmacological interventions are also provided to persons with dementia but with the help of the caregivers since the late stage diagnosis makes it difficult to sustain conversations with the person with dementia (Musyimi et al., 2019). Advice to caregivers by health providers is not always adhered to since different caregivers (some who may not have the full history of the individual) accompany the person with dementia to primary care settings (Sheilah, 2018).

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

Sheilah, M. (2018). The Potential of SMS Based Automated Reminders Towards Adherence to Clinical Instructions for Dementia Patients: A case of Healthcare Givers. University of Nairobi.

There are no established links for dementia care, as no dementia diagnosis and management programs are in place. Given that health and social security institutions work using gatekeeping mechanisms where general practitioners or family doctors see all individuals first and then decide to send them to secondary or tertiary level services. This means that in some cases individuals will be referred to specialists if they are available, as very few positions of dementia specialists exist in health and social security institutions.

They are initiated by a health assessment at the primary care service and, based on that, people may be sent to more specialized services.

Public primary care facilities provide referrals to secondary/tertiary facilities. There is no established referral network between primary care services/specialist services and long-term care services in the country due to the limited availability of the latter.

The links are regulated through the Ministry of Health’s Regulation no. 1/2012 and no. 4/2018 as well as through the regulation Health Insurance Administration Body of Indonesia (Badan Penyelenggara Jaminan Sosial-Kesehatan (BPJS-Kesehatan)).

As previously stated, no links specific to dementia diagnosis and management are in place.

There is the Family Health Strategy Policy. Usually in the public service the primary care unit covered by this program has several healthcare teams. Each team covers an area and is responsible for the health of those living in that area.

The Ministry of Health’s regulation no. 74/2014 regulates the type of services, facilities, and resources an integrated geriatric unit should have. It also regulates that such services should be managed by an Integrated Geriatric Team, formed by the hospital director. The geriatric service is classified into sederhana, lengkap, sempurna, and paripurna types, ranging from very simple services to very comprehensive, respectively. The regulation stated that the team should be led by a geriatric specialist in the paripurna (highest) types, or an internal medicine specialist in the lower types (Ministry of Health Regulation No. 79/2014 on Geriatric Services in Hospitals (Permenkes No. 79/2014 Tentang Pelayanan Geriatri Di RS), 2014).

References:

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).

No dementia specific care is provided in levels 2 to 3. This means that referral is often made if the community providers or health care workers are not able to manage the conditions. Referral typically is made through a referral note and communication to higher levels of care. Sometimes patients refer themselves to the higher levels of care, bypassing the lower-level facilities either because they lack awareness on where to get the appropriate treatment or perceive those lower levels of care provide lower quality of care. The Kenya Health Sector referral Strategy outlines the roles of the providers (at the referral and receiving facilities) and ambulance crew for emergency referrals (Ministry of Health, 2014d). This strategy may not be specific for people with dementia but rather to all people in need of health emergency or referral services.

References:

Ministry of Health. (2014d). Kenya Health Sector Referral Strategy. Ministry of Health Division of Emergency and Disaster Risk Management Afya House. https://www.measureevaluation.org/pima/referral-systems/referral-strategy

 

No related protocols or policies are in place.

Public health services (SUS) are free of charge and include medication (anticholinesterases). Those using the private sector may have health insurance which can be paid by employers or privately by themselves. It is also usual, for those who can afford it, to go directly to a well-known specialist for diagnosis and to pay the doctor directly for the consultation (usually very expensive). Sometimes, people do that in the beginning but end up in the public services as they cannot afford subsequent consultations or exams.

Most dementia related services are financed through out-of-pocket payments (Bharat and Rao, 2013).

References:

Bharath, S., Sadanand, S., Kumar, K.J., Balachandar, R., Joshi, H., Varghese, M., 2017. Clinical and neuropsychological profile of persons with mild cognitive impairment, a hospital based study from a lower and middle income country. Asian J. Psychiatr. 30, 185–189. https://doi.org/10.1016/j.ajp.2017.10.007

There is no information available. We searched via Medline, PubMed, GoogleScholar, Factiva, news, and Neurona.

Apart from Makueni county and the four counties where Universal Health Care (UHC) has been implemented for the pilot (see Part 2, Health System Organisation for details on the exception of fees for people aged 70 and over), all persons requiring medical attention irrespective of their age or illness have to pay hospital fees (consultation, laboratory tests, medications, etc.) across Kenyan health facilities. Data from the 2013 nationally representative Kenya Household Expenditure and Utilization Survey revealed a mean annual spending of 5325.12 Kenya shillings and 941.04 Kenya shillings for outpatient services and hospital admissions respectively. Transport costs to and from the health facility (1966.67 Kenyan shillings) formed nearly a quarter of total costs incurred to access health care services (Barasa et al., 2017). These out-of-pocket expenses from the household survey are not specific to dementia but apply to any person accessing health care. The difference in cost of care depends on the level of hospital, distance to the hospital, and cost of medication. Patients do not pay at lower-level health facilities to receive care unless there are medications unavailable at the facility. If the latter case applies, they receive a prescription to buy the medications outside the health facility.

Even though the government has promised senior citizens free medical insurance, this has not taken effect since January 2018. This is due to a delay by the State Department of Social Protection in submitting the list of citizens aged 70 and above to the Ministry of Health. As a result, senior citizens are turned away on arrival at accredited health facilities if they are unable to pay for the services (Igadwah & Kabale, 2019). Other individuals (below 70 years) with dementia regardless of age still pay out-of-pocket expenses to cater for consultation, laboratory tests, and medications in health facilities where UHC is not being implemented unless they have a health insurance.

References:

Barasa, E. W., Maina, T., & Ravishankar, N. (2017). Assessing the impoverishing effects, and factors associated with the incidence of catastrophic health care payments in Kenya. International Journal for Equity in Health, 16(1), 31. https://doi.org/10.1186/s12939-017-0526-x

Igadwah, L., & Kabale, N. (2019). Payroll hitch delays free NHIF for senior citizens. Business Daily, March 2019. Nairobi, Kenya. https://www.businessdailyafrica.com/bd/economy/payroll-hitch-delays-free-nhif-for-senior-citizens-2243904

 

As there are no public dementia care strategies in place, there is a large proportion of individuals who incur in large out-of-pocket payments by going to private services from the moment they experience memory concerns, and for the whole of their diagnosis, treatment and care. There is no data available on the size of out-pocket payments.

We do not have a clear path for long-term care for people living with dementia specifically. But it is likely that this first access will be through primary healthcare units in the public services, and they will provide the long-term care together with the family. We have only few long-term institutions for people living with dementia or other conditions in the public sector, so we may consider that this does not exist. A small proportion of people may access philanthropic long-term care institutions. The private LTC sector is growing, but it is extremely expensive.

Few families who can afford the few long-term care services available for dementia in India, provide this care (out-of-pocket care) through hiring paid carers or using day-care centres or residential facilities (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 Delhi. Available from: https://ardsi.org/pdf/annual%20report.pdf

We were unable to identify relevant information. We searched via Medline, PubMed, GoogleScholar, Factiva, news, and Neurona.

Access is through the UHC and within general health settings or in non-governmental residential homes. There is currently no government funded long-term care in Kenya. Admission into the private residential home depends on the ability to pay for the services by the person or the family members and does not require approval of a health care provider (National Gender and Equality Commission (NGEC), 2016).

References:

National Gender and Equality Commission (NGEC). (2016). Audit of residential institutions of older members of society in selected counties of Kenya. National Gender and Equality Commission Headquarters. Nairobi, Kenya. https://www.ngeckenya.org/Downloads/Audit%20of%20Residential%20Homes%20for%20Older%20Persons%20in%20Kenya.pdf

Mexico does not have a publicly funded national long-term care system. However, care is being provided in different ways. First, unpaid informal care by family members is the main source of care and in some cases, especially when economic resources are available with the support of domestic paid workers. To our knowledge, there are only 4 long-term care (care homes) private institutions in the country that are focused exclusively on people with dementia. While (for-profit and non-profit) private care homes usually have as their main requirement for entry that the older adult is “functional and independent”, those who develop dementia will usually remain under their care, while others will make them return to the care of a family member. As a result, most older people with dementia, while receiving care in LTC institutions, will receive sub-standard care or care that is not optimal as the majority of managers and carers are not trained, nor the institutions equipped to provide dementia care and management.

There are some studies estimating the costs in Brazil. According to a cross-sectional study conducted with people living with dementia who attended an outpatient health care in a hospital in São Paulo, dementia direct and indirect costs were US$1,012.35, US$1,683.18, and US$1,372.30 per patient/month, respectively, for mild, moderate, and severe stages of dementia. These included the unpaid care costs, expenditures with transport, diapers, medication, use of emergency services, health insurance, hospital stay, etc. (Ferretti et al., 2018). Using a similar list of variables a study conducted with 93 caregivers being followed up by an outpatient clinic from the University of São Paulo Clinical Hospital, calculated a total monthly indirect care cost of US$1,122.40, US$1,508.90, and US$1,644.70, for mild, moderate, and severe stages of dementia, respectively (Ferretti et al., 2015). Another study revealed that R$90,108,885.14 (US$22,860,464.56) were spent with medication to Alzheimer’s disease by the Brazilian Unified Health System (SUS) between 2008 and 2013 (Costa et al., 2015). A more recent study conducted a cost-effectiveness analysis from the SUS perspective between donepezil and rivastigmine therapy for mild and moderate Alzheimer’s disease (AD). The study showed the annual cost (in Brazilian reais) for donepezil is 30,556.45 and for rivastigmine is 32,685.77. According to the current Brazilian clinical guidelines for AD, it is estimated that rivastigmine is less cost-effective (0.39 QUALY/32,685.77 Brazilian reais) than donepezil (da Silva et al., 2018).

References:

Costa, R. D. F. da, Osorio-de-Castro, C. G. S., Silva, R. M. da, Maia, A. de A., Ramos, M. de C. B., & Caetano, R. (2015). Aquisição de medicamentos para a Doença de Alzheimer no Brasil: Uma análise no sistema federal de compras, 2008 a 2013. Ciência &amp; Saúde Coletiva, 20(12), 3827–3838. https://doi.org/10.1590/1413-812320152012.11542015

da Silva, L. R., Vianna, C. M. M., Mosegui, G. B. G., Peregrino, A. A. F., Marinho, V., & Laks, J. (2018). Cost-effectiveness analysis of the treatment of mild and moderate Alzheimer’s disease in Brazil. Revista Brasileira de Psiquiatria, 41(3), 218–224. https://doi.org/10.1590/1516-4446-2017-0021

Ferretti, C., Nitrini, R., & Brucki, S. M. D. (2015). Indirect cost with dementia. A Brazilian study. Dementia & Neuropsychologia, 9(1), 42–50. https://doi.org/DOI:10.1590/S1980-57642015DN91000007

Ferretti, C., Sarti, F. M., Nitrini, R., Ferreira, F. F., & Brucki, S. M. D. (2018). An assessment of direct and indirect costs of dementia in Brazil. PLoS ONE, 13(3). https://doi.org/10.1371/journal.pone.0193209

 

Rao & Bharat (2013) conducted a study examining the cost of dementia care in India. The authors found that the annual household cost of dementia care ranged from INR 45,600 to INR 2,02,450 in urban areas and INR 20,300 and INR 66,025 in rural areas, with disease severity significantly influencing these costs. Medication, consultation, and hospitalisation were combined as medical costs and transportation, paid residential care or day care included as care, and remaining costs (informal caregiving and productivity loss of the person with dementia) were summarised under informal costs (Rao & Bharat, 2013). More than half of the total cost is attributed towards informal care, as per the study. Of the total costs, around two-third (60.3%) is spent on informal care, one-fourth (26.1%) on care related costs and the rest 13.6% is spent on medical costs (Rao & Bharat, 2013). The authors identified that with respect to disease severity, the greater the severity of the disease, the lower is the expenditure on medical costs and the greater is the expenditure on care related costs (Rao & Bharat, 2013).

References:

Rao, G., & Bharath, S. (2013). Cost of dementia care in India: Delusion or reality? Indian Journal of Public Health, 57(2), 71. https://doi.org/10.4103/0019-557X.114986

ADI estimated that, in Indonesia, dementia costs US$1,777 million in 2015 (Alzheimer’s Disease International, 2019, p.4). There has been no official data on dementia cost according to the Indonesian government or research institutions. However, in 2015, the Executive Director of Alzheimer’s Indonesia DY Suharya estimated that the annual cost associated with dementia in Indonesia has increased from US$1.7 billion to US$2 billion. Unpublished data from Alzheimer Indonesia’s database of caregivers provides information on the approximate dementia-related cost of care that families incur on a monthly basis. Out of 193 respondents, 10.9% reported spending less than IDR 1 million, 38.3% between IDR 1-3 million, 26.4% between IDR 3-5 million, 18.7% between IDR 5-10 million, and 5.7% spend more than IDR 10 million per month (Alzheimer’s Indonesia database, October 2019, unpublished).

References:

Alzheimer’s Disease International. (2019). World Alzheimer Report 2019: Attitudes to Dementia. Alzheimer’s Disease International.

Persons with dementia and their caregivers (often family members) experience a significant financial impact from the cost of social and health care and loss of income (World Health Organization (WHO), 2017). The cost of dementia in East Sub-Saharan Africa (which includes Kenya) increased by 267.4% from 2010 (US$ 0.4 billion) to 2015 (US$ 1.5 billion) with informal care costs estimated at 68.9%, direct medical cost at 20.8% and social care costs at 10.3% in 2015 (Prince et al., 2015). However, there is no study conducted in Kenya that has specifically evaluated the cost of dementia.

References:

Prince, M., Wimo, A., Guerchet, M., Ali, G., Wu, Y., & Prina, M. (2015). World Alzheimer Report 2015: The Global Impact of Dementia: An analysis of prevalence, incidence, cost and trends. Alzheimer’s Disease International. London. https://www.alzint.org/u/worldalzheimerreport2015summary.pdf

World Health Organization (WHO). (2017). Global action plan on the public health response to dementia 2017 – 2025. Geneva, Switzerland. https://apps.who.int/iris/bitstream/handle/10665/259615/9789241513487-eng.pdf?sequence=1

 

 

Using unit costs for other conditions and international estimates when local unit costs were not available, the ADI World Report 2016 (Prince et al., 2016) costing estimates of the pathway of dementia care in Mexico show that the costs of the task-shifted pathways are relatively low compared to overall healthcare spending, and puts the cost of the pathway in 2015, per diagnosed person in Mexico at $39 USD (or $3.90 per person with dementia). This likely reveals that specialised services are not available and that little is done and performed in primary care where resources are not available or are lower than in the secondary or tertiary care level. For example, this is reflected in the salaries for general practitioners compared to the specialists’ ones.

References:

Prince, M., Comas-Herrera, A., Knapp, M., Guerchet, M., & Karagiannidou, M. (2016). World Alzheimer Report 2016 Improving healthcare for people living with dementia. Coverage, Quality and costs now and in the future. In Alzheimer’s Disease International (ADI).