Exploring dementia care pathways in seven LMICs with the help of case vignettes – identifying opportunities for strengthening pre‐ and post diagnostic support

Background

There is a scarcity of information about the care pathways of people living with dementia under different circumstances in Low and Middle Income Countries (LMICs) countries. This knowledge is important to effectively improve system responses and processes for people living with dementia and their families.

Method

During a workshop with researchers from a range of LMICs, we identified key variables likely influencing people’s access to and routes through health and long‐term care system. Based on these, we developed five case vignettes exploring these key characteristics together with the research teams in the seven STRiDE (‘Strenghtening Responses to dementia in DEveloping countries’) project countries. The multidisciplinary STRiDE country teams then narratively described the likely care pathways and validated the results with relevant stakeholders.

Result

Using the same five vignettes across Brazil, India, Indonesia, Jamaica, Kenya, Mexico and South Africa enabled us to analyse the dementia care system. The vignettes highlighted the role of infrastructure on accessibility regarding diagnosis, help and support. While health service entry points varied by health care system design and type of health insurance, we found that traditional healers and alternative medicine, often in parallel, also played a role in most countries. Where people rely on public services, awareness of dementia among entry level healthcare workers seems important.

Following diagnosis, health services were the main ongoing support provided across countries. Availability of other types of supporting therapies or social interventions varied. Non‐governmental organisations or faith‐based support seemed to be especially important in rural areas. Across all countries, families and especially women provide the bulk of care and support. Residential care has been described as stigmatised in several countries. Issues around availability, affordability and quality of care in residential care were also raised.

Conclusion

Exploring care pathways of people with different social profiles is important to show the responsiveness of health and long‐term care systems to people’s needs and to enable that bottlenecks to care and support can be addressed through interventions and policy. Comparing the vignettes across the seven STRiDE countries highlights similarities but also differences.