DESK REVIEWS | 11.01. What type of information is collected and analysed to assess performance of the healthcare system for people living with dementia? What is missing?

DESK REVIEW | 11.01. What type of information is collected and analysed to assess performance of the healthcare system for people living with dementia? What is missing?

There is no such type of information, specifically for dementia. In Brazil, we have the Datasus, a huge public dataset with information regarding health care in general, that includes mortality information on Alzheimer’s disease. There is also the National Health Survey (PNS, in Portuguese, its first edition was in 2013) which is planned to happen every five years as a population-based survey where part of the data will be followed longitudinally.

Data from these research datasets can help to analyse the performance of the health system based on availability and accessibility of services, frequency of consultations etc. However, there is lack of data regarding dementia, specifically. Based solely on these surveys, not much is known about epidemiology, challenges, and healthcare services provided for and used by people living with dementia and their carers. Health Services research is a weak area of research in Brazil.

There is no such information available specifically for persons with dementia. There is no national or state level dementia registries that monitor health care utilisation among persons with dementia as well. While certain tertiary hospitals have dementia registries, these hospital-based registries often exist only for the period of a research project and focus on specific areas of research interest.

There is little information about dementia in Kenya both at policy level and in community settings. In most mental health clinics in community settings, dementia is diagnosed as “senile dementia” making it a normal part of the ageing process, a perception common among community members. There are also no national guidelines on dementia care or support for caregivers. This is important because family carers provide a large share of care and paid informal workers do not receive any training on how to support people with dementia. Informal workers often provide care for people with dementia while performing other household chores. The development of the National Plan could be a starting point to develop better support for people with dementia and their carers in Kenya.

None for this specific purpose. No national registry of people with dementia, no dementia care policies are in place, and no performance indicators.

Currently, performance of the Health System, in general, is measured by process indicators (number of vaccines, births, deaths). No impact indicators related to dementia are available. Epidemiological evidence available comes from research projects, or national level surveys (for health in general and dementia in particular), not from monitoring systems. There is urgent need to generate research on the social and economic determinants and impacts of dementia, and that this information is made available to decision-makers. There is also need of greater involvement of decision-makers in the research process.

There is currently no information collected or analysed to assess the healthcare system’s performance for persons living with dementia specifically.