DESK REVIEWS | 11.04. Evidence gaps

DESK REVIEW | 11.04. Evidence gaps

  • There is no official community-friendly document about dementia prevention and risk reduction.
  • There is a lack of information systems for monitoring dementia. For instance: there is no monitoring of the number of people living with dementia by the Ministry of Health, neither by other ministries/department nor research-led institutions nor non-governmental organizations.
  • There is lack of data on the proportion of the population that incurs out-of-pocket expenditure when purchasing long-term care services, the amounts of out-of-pocket expenditure on LTC and on the numbers of people incurring catastrophic levels of out-of-pocket expenditure.
  • There is lack of data on the current incidence of dementia by region, sex, ethnicity, etc. There is no data on the YLL, YLD, DALY with dementia in Brazil, regarding the average life expectancy of people living with dementia, the average age of dementia onset in Brazil, and the prevalence/incidence of subgroups with specific dementias, e.g., HIV-dementia.
  • There are no public campaigns specifically to reduce risk of dementia.
  • There is no information about the number of people who receive community-based care.
  • No current and precise number of residential long-term care facilities and users in Brazil are available.
  • There is not enough data on social demographic conditions of informal workers in dementia.
  • Very little involvement of people living with dementia in the research development process.

Data on prevalence of dementia is available across some regions in India. The Global Burden of Disease study (India State-Level Disease Burden Initiative Neurological Disorders Collaborators, 2021) also provides an overall estimate along with state-wise prevalence of Alzheimer’s disease and other dementias in India. However, further evidence is needed on the determinants behind variations in dementia prevalence across the country (India State-Level Disease Burden Initiative Neurological Disorders Collaborators, 2021; Kumar et al., 2019). In addition, research on interventions to support caregivers in low-resource settings, identifying factors that may help facilitate reduction in informal caregiver burden is urgently needed (Kumar et al., 2019).

There is also a necessity for evidence on effectiveness of awareness raising interventions and campaigns across different demographic areas considering the large diversity in socioeconomic, cultural, and linguistic factors in India. Lastly, research on economic costs of dementia is limited and the development of such evidence can aid policymakers in better resource allocation towards services for persons with dementia in the country.

References:

India State-Level Disease Burden Initiative Neurological Disorders Collaborators (2021). The burden of neurological disorders across the states of India: the Global Burden of Disease Study 1990-2019. The Lancet. Global health, 9(8), e1129–e1144.

Kumar, C. S., George, S., & Kallivayalil, R. A. (2019). Towards a Dementia-Friendly India. Indian journal of psychological medicine, 41(5), 476–481. https://doi.org/10.4103/IJPSYM.IJPSYM_25_19

Further research needs to be conducted to ascertain the risk factors for dementia in Kenya and work towards prevention, development, or adaptation of evidence-based tools for use in Kenya and coordinated care pathways that could contribute to robust assessments and improvement in quality of care for persons with dementia.

There are no routine monitoring systems. There is lack of research and data on the role of unpaid family care, paid informal workers, including the number of carers for people with dementia, the type of activities they do, the time spent in them and the costs of caring for someone with dementia. There is little support for dementia research, especially on the social and economic determinants and impact. Few dementia-specific calls for projects have existed periodically during the last 10 years and three National Institutes of Health have included researchers what have dementia as one of their main lines of research (National Institute of Geriatrics, National Institute of Neurology and Neurosciences and the National Institute of Nutrition and Medical Sciences). Research projects and results are almost never used as input for the development of policies or as information underlying political decision-making. As specified in Part 10, three relevant books on dementia have been published recently. At the moment, one of the main priorities is to focus on policy briefs that can translate current knowledge for use by decision-makers in policy and planning. Perceptions and expectations of carers regarding their needs for support are crucial. Finally, there is need for costing and economic evaluation studies (in general and dementia specific).