DESK REVIEWS | 06.01. Information systems for dementia

DESK REVIEW | 06.01. Information systems for dementia

Mexico does not have a National Program for Dementia, and currently, no strategy is in place to diagnose, monitor, or provide management options for people with dementia.

The number of people living with dementia is not routinely monitored in Brazil. However, there is monitoring of causes of death based on death certificates. Alzheimer’s disease can be recorded on these. Data collection is carried out through Datasus (an online public database from the Ministry of Health) (Datasus, 2019).

References:

Datasus. (2019). DATASUS. http://www2.datasus.gov.br/DATASUS/index.php?area=0205&id=6937&VObj=http://tabnet.datasus.gov.br/cgi/deftohtm.exe?sim/cnv/obt10

No governmental programs exist that routinely monitor number of people with dementia in India.

The ministry of health in Kenya has no defined measures in place to either monitor the number of people nor indicators for dementia in the country, making it difficult to even aggregate the data by age or gender. A person diagnosed with dementia is often seen at a mental health clinic in a hospital setup; however, mental disorders are often reported as aggregate data rather than by specific conditions (Kiarie et al., 2019). This makes it difficult to monitor conditions such as dementia. Specific mental disorders are only monitored when NGO or research institutions have received funding to carry out a project. This is usually only done for certain conditions and within a specified time period due to limited funding, leading to evidence of mostly small-scale studies being available (Wekesah, 2019) and hamper the possibility of larger, ongoing data collection or data monitoring. Efforts during implementation of these projects have been made to disaggregate the data to advocate for specific policy. For disaggregation has been mentioned to increase the burden of recording and reporting for health care workers unless a rational approach is used to reduce data collection overload at the cost of service provision (Bernadette et al., 2019). The existing indicators although too many have little use particularly on mental health (Bernadette et al., 2019). Sub-Counties submit aggregated data to County and National Levels through the Kenya Health Information system (KHIS) for aggregate reporting (University of North Carolina, 2017) but no focus on dementia.

References:

Bernadette, A., Anthony, K., Ngaira, D., & Wanjala, P. (2019). Enhancing Health Information System for Evidence based decision making in the Health Sector. Nairobi, Kenya. https://www.health.go.ke/wp-content/uploads/2019/01/HIS-POLICY-BRIEF-.pdf

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

University of North Carolina. (2017). How Kenya Monitors Health Information System Performance: A Case Study. North Carolina. https://www.measureevaluation.org/resources/publications/fs-17-232.html

Wekesah, F. (2019). Adolescent Mental Health in Kenya: Where is the data? https://aphrc.org/blogarticle/adolescent-mental-health-in-kenya-where-is-the-data/

 

No governmental programs exist that routinely monitor number of people with dementia in India.

Memory clinics and specialist services in a few hospitals record the number of people with dementia referred to their service (Alladi et al., 2011; Nair et al., 2012; Pal et al., 2013; Tripathi et al., 2015). The primary goal of maintaining a dementia registry is to provide multidisciplinary care and conduct research related to clinical characteristics of these patients. However, not all persons with dementia seeking help in these hospitals are referred to the clinics. This is due to low awareness among both patients and professionals and the large number of patients who often cannot be catered for by the memory clinics. Another challenge faced by registries is that they exist only for the period of the research project and, as a result, tend to focus on specific areas of their research interest. More recently, the Government of India, through the Department of Biotechnology (DBT), has set up a project to develop a network of dementia registries across major academic institutions in different parts of the country to collect information about the burden, pattern of subtypes, risk factors and care needs of persons with dementia in the Indian context (Bhatt, 2020).

References:

Alladi, S., Mekala, S., Chadalawada, S. K., Jala, S., Mridula, R., & Kaul, S. (2011). Subtypes of \Dementia: A Study from a Memory Clinic in India. Dementia and Geriatric Cognitive Disorders, 32(1), 32–38. https://doi.org/10.1159/000329862

Bhatt (2020). DBT’s multi-centric Dementia Science Programme. Vigyan Samachar. Available from: https://vigyanprasar.gov.in/wp-content/uploads/DBT%E2%80%99s-multi-centric-Dementia-Science-Programme-10apr20.pdf

Nair, G., Van Dyk, K., Shah, U., Purohit, D. P., Pinto, C., Shah, A. B., …& Sano, M. (2012). Characterizing Cognitive Deficits and Dementia in an Aging Urban Population in India. International Journal of Alzheimer’s Disease, 2012, 1–8. https://doi.org/10.1155/2012/673849

Pal, S., Sanyal, D., Biswas, A., Paul, N., & Das, S. K. (2013). Visual Manifestations in Alzheimer’s disease. American Journal of Alzheimer’s Disease & Other Dementias, 28(6), 575–582. https://doi.org/10.1177/1533317513494448

Tripathi, R., Kumar, K., Balachandar, R., Marimuthu, P., Varghese, M., & Bharath, S. (2015). Neuropsychological markers of mild cognitive impairment: A clinic based study from urban India. Annals of Indian Academy of Neurology, 18(2), 177–180. https://doi.org/10.4103/0972-2327.150566

NGOs are not formally monitoring the number of dementia cases seen at their centres.

Prediction. Not routinely monitored.

The Datasus platform has a Mortality Information System that provides online data about mortality from Alzheimer’s disease. The number of deaths are available from 1996 to 2017 by: location, sex, age, education, ethnicity, and marital status.

Data is not routinely monitored by governmental organisations, research-led organisations, and NGOs.

There is no routinely monitored data about the number of people with dementia by the Ministry of Health or other ministries. The only recent data on dementia prevalence resulted from ADI’s prediction (Prince et al., 2015) and two separate studies in two provinces of Indonesia conducted by an independent research institution, Surveymeter (Suriastini et al., 2016, 2018). More information on incidence and prevalence estimated from these studies can be found in part 2.

References:

Prince, M., Wimo, A., Guerchet, M., Ali, G.-C., Wu, Y.-T., Prina, M., & Alzheimer’s Disease International. (2015). World Alzheimer Report 2015 The Global Impact of Dementia: An analysis of prevalence, incidence, cost and trends. https://www.alz.co.uk/research/WorldAlzheimerReport2015.pdf

Suriastini, Turana, Y., Sukadana, W., Sikoki, B., Witoelar, F., Lesmana, C. B. J., Mulyanto, E. D., Hermoko, R., & Anandari, G. A. A. A. (2018). Menggugah Lahirnya Kebijakan Kelanjutusiaan Menggugah Lahirnya Kebijakan Kelanjutusiaan.

Suriastini, Turana, Y., Witoelar, F., Supraptilah, B., Wicaksono, T., & Dwi, E. (2016). Policy Brief Angka Prevalensi Demensia: Perlu Perhatian Kita Semua. SurveyMETER, Maret, 1–4.

No indicators available.

No data is routinely gathered or monitored.

For the mortality data, the death certificate is used.

In Indonesia there is no routinely collected data available that monitors people with dementia.

No routinely monitored data available.

While not established to monitor people with dementia, a national longitudinal survey, the Mexican Health and Aging Study, MHAS (Wong et al., 2017) and the 10/66 study (Prina et al., 2017) have provided epidemiological data on cognitive impairment and dementia. However, these studies do not monitor these individuals’ condition routinely.

References:

Prina, A. M., Acosta, D., Acosta, I., Guerra, M., Huang, Y., Jotheeswaran, A. T., Jimenez-Velazquez, I. Z., Liu, Z., Llibre Rodriguez, J. J., Salas, A., Sosa, A. L., Williams, J. D., & Prince, M. (2017). Cohort Profile: The 10/66 study. International Journal of Epidemiology, 46(2), 406–406i. https://doi.org/10.1093/ije/dyw056

Wong, R., Michaels-Obregon, A., & Palloni, A. (2017). Cohort Profile: The Mexican Health and Aging Study (MHAS). International Journal of Epidemiology, 46(2), e2. https://doi.org/10.1093/ije/dyu263

Yes, through the DATASUS platform.

ADI’s prediction for Indonesia’s national prevalence of dementia in 2015, 2030, and 2050 can be found in the World Alzheimer Report 2015, available on ADI’s website (Prince et al., 2015). For the regional prevalence data of Yogyakarta and Bali province, the estimates can be accessed in the policy briefs issued by Surveymeter, available on their website (Suriastini et al., 2016, 2018).

References:

Prince, M., Wimo, A., Guerchet, M., Ali, G.-C., Wu, Y.-T., Prina, M., & Alzheimer’s Disease International. (2015). World Alzheimer Report 2015 The Global Impact of Dementia: An analysis of prevalence, incidence, cost and trends. https://www.alz.co.uk/research/WorldAlzheimerReport2015.pdf

Suriastini, Turana, Y., Sukadana, W., Sikoki, B., Witoelar, F., Lesmana, C. B. J., Mulyanto, E. D., Hermoko, R., & Anandari, G. A. A. A. (2018). Menggugah Lahirnya Kebijakan Kelanjutusiaan Menggugah Lahirnya Kebijakan Kelanjutusiaan.

Suriastini, Turana, Y., Witoelar, F., Supraptilah, B., Wicaksono, T., & Dwi, E. (2016). Policy Brief Angka Prevalensi Demensia: Perlu Perhatian Kita Semua. SurveyMETER, Maret, 1–4.

No routinely monitored data available.

Data sets for these studies are publicly available, thus, the estimates on incidence and prevalence of cognitive impairment and dementia can be obtained.

Yes, mortality data on Alzheimer’s disease can be disaggregated by gender and geographical area. Information on other types of dementia is not available.

Data from the World Alzheimer Report 2015 estimates that there were 1.2 million people living with dementia in Indonesia in 2015. The report does not provide data disaggregated by gender, geographical area, or type of dementia (Prince et al., 2015, p.25). Surveymeter’s data on Yogyakarta was presented by age group (per 10 years starting 60 years), gender, and urban/rural area (Suriastini et al., 2016). The data on the province of Bali were presented by age group, gender, level of education, urban/rural area, district, comorbidities, occupation, and social participation (Suriastini et al., 2018).

References:

Prince, M., Wimo, A., Guerchet, M., Ali, G.-C., Wu, Y.-T., Prina, M., & Alzheimer’s Disease International. (2015). World Alzheimer Report 2015 The Global Impact of Dementia: An analysis of prevalence, incidence, cost and trends. https://www.alz.co.uk/research/WorldAlzheimerReport2015.pdf

Suriastini, Turana, Y., Sukadana, W., Sikoki, B., Witoelar, F., Lesmana, C. B. J., Mulyanto, E. D., Hermoko, R., & Anandari, G. A. A. A. (2018). Menggugah Lahirnya Kebijakan Kelanjutusiaan Menggugah Lahirnya Kebijakan Kelanjutusiaan.

Suriastini, Turana, Y., Witoelar, F., Supraptilah, B., Wicaksono, T., & Dwi, E. (2016). Policy Brief Angka Prevalensi Demensia: Perlu Perhatian Kita Semua. SurveyMETER, Maret, 1–4.

No routinely monitored data available.

The 10/66 study is representative of rural and urban locations and data can be disaggregated by gender and different socio-economic characteristics. MHAS study data can be disaggregated by gender, urban location, and different socio-economic characteristics.