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 with dementia is occasionally but not routinely monitored in Hong Kong. Although there is no official annual statistics about dementia from the Government, different NGOs and research institutions have been investigating and monitoring the prevalence, needs of service, and care burden among people with dementia and their family carers (The Government of the Hong Kong SAR, 2015, June 17).

References:

The Government of the Hong Kong SAR. (2015, June 17). LCQ16: Dementia [Press release]. Retrieved from https://www.info.gov.hk/gia/general/201506/17/P201506170682.htm

The number of people with dementia is not currently routinely monitored in Jamaica. However, in 2011, the Ministry of Health and Wellness, with technical support from PAHO conducted a multi-stakeholder assessment of the National Health Information System (NHIS) which followed the guidelines of the Health Metrics Network (HMN) Framework and used the HMN Assessment Tool version 4.00. The assessment evaluated six key components of the NHIS, Resources, Indicators, Data Sources, Data Management, Information Products and Dissemination, and Use (MOH, 2011).

The assessment report demonstrated that the NHIS’ strengths included its range of sources, including census data, national surveys, and a vital registration system, as well as efficient monitoring of core health indicators (which did not include dementia at that time). Its weaknesses included lack of stakeholder collaboration and participation, lack of adequate infrastructure, human resources, poor reporting mechanisms and limited use of data. Following consultations with various stakeholders, recommendations were produced which continue to be implemented to the present day and which may serve to compliment some of the technical and policy products of the STRiDE project.

For example, it was recommended that private sector health professionals be targeted through their professional associations and that legislation be introduced to ensure private-sector compliance and cooperation in data sharing with the NHIS committee. This recommendation is particularly relevant for dementia data gathering as dementia data may be housed with private sector mental health professionals (due to its stigmatised nature and the ease of accessibility of private sector psychiatrists over public sector ones) and therefore not accessible to the NHIS. It is important to note that the data collected by the NHIS is used to inform national level policy and planning.

Regarding expansion of data sources, it was recommended to explore possibilities of maximising opportunities of current national surveys, which may provide a means to routinely capture dementia-related data as this indicator is not included currently in any of the national surveys or census data collection tools.  Other reported recommendations were to improve health workers ability to diagnose diseases through continuing education and address programme-specific initiatives which could contribute data to the wider NHIS. In the case of dementia, under-diagnosis, or late diagnosis, which is a common issue in LMICs, are due in part to a lack of awareness as well as stigma around dementia and associated myths, such as that it is a normal part of ageing.

Programme-specific initiatives go hand in hand with another recommendation made by the assessment report which calls for better representation among data sources, including adolescent health, mental health, and environmental health assessments. Lobbying for the inclusion of dementia can improve representation of mental health among older persons, as well as the physical and mental health of their carers.

In summary, although information systems focused on dementia do not yet exist within the wider NHIS, other than the data being gathered on a one-time basis for the Global Dementia Observatory, the Ministry of Health and Wellness has made some useful recommendations which provide a promising environment in which STRiDE findings can potentially be integrated, supplemented and complimentary (National Health Information System Assessment Report (MOH with technical support from PAHO), 2011).

References:

Ministry of Health. (2011). National Health Information System Assessment 2011: Jamaica. Available from: https://moh.gov.jm/wp-content/uploads/2015/07/FinalNHISAssessJAMReport.pdf

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.

New Zealand does not have a national surveillance and monitoring system to provide high quality data on dementia. While there are some systems, such as the government Integrated Data infrastructure (IDI) (Statistics NZ, 2019) which holds linked microdata from a variety of sources, it has been shown to vastly underestimate dementia prevalence due to poor diagnostic coding and a general lack of data from both primary and secondary services (Walesby et al., 2020).

For example:

Primary care – while the expectation is that most diagnosis and management of dementia occurs in primary care, coding for dementia is not mandatory or associated with any funding so the numbers are likely undercounted.

Secondary/tertiary care – while all inpatient admissions are coded for diagnosis (including dementia), outpatient clinic diagnoses are not routinely coded so the number of those with dementia seen in older persons services (e.g., memory services, geriatric clinics, and mental health services for the elderly) is not known.

Some services such as NASC agencies capture the diagnosis of dementia as part of their interRAI assessment, but only ~10% of the 65+ population get this assessment.

Research-led institutions may gather data to investigate dementia related questions but not in a routine way.

References:

Statistics NZ. (2019). Integrated Data Infrastructure. Stats NZ website. Available from: https://www.stats.govt.nz/integrated-data/integrated-data-infrastructure/#:~:text=The%20Integrated%20Data%20Infrastructure%20(IDI,%2Dgovernment%20organisations%20(NGOs).

Walesby K., Exeter D., Gibb S., Wood P, Starr J., Russ T. (2020). Prevalence and geographical variation of dementia in New Zealand from 2012 to 2015: Brief report utilising routinely collected data within the Integrated Data Infrastructure. Australas J Ageing. https://doi.org/10.1111/ajag.12790.

No, there are no surveillance data on persons living with dementia and their caregivers in South Africa. Therefore, the questions from 06.01.01. to 06.01.05. are not applicable.