DESK REVIEWS | 06.01.01. Is the number of people with dementia routinely monitored?
DESK REVIEW | 06.01.01. Is the number of people with dementia routinely monitored?
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).
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.
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/
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).
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