Dementia In Developing Countries Research Articles

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

AbstractBackgroundThere 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.MethodDuring 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.ResultUsing 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.ConclusionExploring 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.

Description of the cross-cultural process adopted in the STRiDE (STrengthening Responses to dementia in DEveloping countries) program: A methodological overview.

Cross‐cultural adaptation is an important part of using validated questionnaires across countries and settings. Here we describe the cross‐cultural process adopted in the STRiDE (STrengthening Responses to dementia in DEveloping countries) program.We adopted a cross‐cultural adaptation process including forward translation, back translations, and cognitive interviews of the STRiDE toolkit. In total, 50 older adults and 41 carers across sites in Indonesia and South Africa participated in cognitive interviews; field notes and verbatim quotes are reported.We describe the cross‐cultural adaptation process of the STRiDE toolkit. During the process, issues were identified with the translated toolkit, including aspects related to cultural appropriateness, terminology equivalence, and timings.The data demonstrate that a rigorous, yet pragmatic, cross‐cultural adaptation process can be achieved even with limited resources. Our process should help the design and conduct of future dementia research in various contexts.