Experiences of caregivers of people with dementia in Indonesia: A focus group study.

BACKGROUND: Many people with dementia are reliant on family caregivers to provide daily care to maintain quality of life and dignity. As a result, caregivers can experience increased burden, poorer health outcomes and increased stigma. To date, the experiences of caregivers of people with dementia has not been explored within an Indonesian context. AIMS: This study aims to understand the experience of caregivers of people with dementia in Indonesia and better understanding of the stigma associated with dementia. MATERIALS AND METHODS: This qualitative study is embedded within the Strengthening Responses to Dementia in Developing Countries project. Focus Group Discussions were held with dementia caregivers residing in Jakarta, Indonesia. Inductive thematic analysis was used to analyse the transcripts. RESULTS: Nineteen caregivers of people with dementia participated in the Focus Group Discussions. Themes identified included: (1) Understanding of dementia, (2) Reaction to care, and (3) Seeking a diagnosis. DISCUSSION: A perceived lack of understanding about dementia amongst the caregivers, ultimately shaped caregivers experience of care. This included negative reactions to care leading to internalised stigma (e.g., fear and shame). Misconceptions that dementia was due to spiritual and mystical reasons were particularly stigmatising. CONCLUSION: In Indonesia, families are providing care to people with dementia in an environment in which there is a lack of understanding that can lead to misdiagnosis, feelings of fear and shame. Efforts to raise address stigma and misunderstanding among the general public and healthcare professionals could be of particular value to support people with dementia and reduce the fear and shame that they can experience.

Awareness, attitudes, and beliefs of dementia in Indonesia.

INTRODUCTION: Tackling dementia stigma is a policy priority. In Indonesia, we have little insight into the general public's knowledge and attitudes about dementia. METHODS: Cross-sectional study of 4430 Indonesian adults recruited from Jakarta and North Sumatra, Indonesia. Measures included dementia knowledge and attitudes. RESULTS: A total of 86.3% (n = 3,803) of adults had not heard of the terms dementia or Alzheimer's disease, and commonly viewed dementia as a normal part of aging. Being older, incorrect knowledge about etiology, not having heard of the terms dementia and/or Alzheimer's disease, having less than primary education, and being from North Sumatra were associated with more negative attitudes (p-values < 0.05). DISCUSSION: Misconceptions and lack of awareness about dementia are common in Indonesia. Attitudes tended not to be negative, but our research highlights factors associated with dementia attitudes. Future research should use this information to better tailor and target potential anti-stigma strategies. Highlights: Most Indonesians had not heard of the terms dementia and/or Alzheimer's disease and thought it was caused by normal aging.The majority of participants held mixed or positive attitudes towards dementia.A series of demographic factors alongside poor awareness were associated with negative attitudes towards dementia.

The dementia severity rating scale: A potential community screening tool for dementia in low- and middle-income countries.

BACKGROUND: The Dementia Severity Rating Scale (DSRS) is an informant report, dementia staging tool that is quick to administer and has previous been shown to differentiate between people with dementia and healthy controls. However, it is not clear how accurate the tool is screening against diagnostic criteria in middle-income settings. METHODS: Embedded within the STRiDE programme, older adults (aged ≥65 years) and their informants were randomly recruited from four sites across Indonesia and South Africa. All informants were asked to complete DSRS. We report the tool's psychometric properties and accuracy against the 10/66 short diagnostic algorithm. RESULTS: Between September and December 2021, data was collected from 2110 older adults in Indonesia and 408 in South Africa. Overall, the DSRS scores significantly differed between those with and without dementia, as identified on the 10/66 short algorithm (p < .05). The difference between groups remained significant after controlling for key factors related to older adult and informant demographics. A score >2 on the DSRS had the greatest agreement with the 10/66 short algorithm and had excellent discriminative properties in both Indonesia (Area Under Curve (AUC) = .75, 95% CIs = .72-.77) and South Africa (AUC = .82, 95% CIs = .76-.88). CONCLUSIONS: The DSRS has potential as a screening tool for dementia in middle-income countries, with high sensitivity and specificity against a standardized diagnostic algorithm.

Comprehensive measurement of the prevalence of dementia in low- and middle-income countries: STRiDE methodology and its application in Indonesia and South Africa.

BACKGROUND: A core element of the Strengthening Responses to Dementia in Developing Countries (STRiDE) programme was to generate novel data on the prevalence, cost and impact of dementia in low- and middle-income countries, to build better health policy. Indonesia and South Africa are two middle-income countries in need of such data. AIMS: To present the STRiDE methodology and generate estimates of dementia prevalence in Indonesia and South Africa. METHOD: We conducted community-based, single-phase, cross-sectional studies in Indonesia and South Africa, randomly sampling participants aged 65 years or older in each country. Dementia prevalence rates for each country were generated by using the 10/66 short schedule and applying its diagnostic algorithm. Weighted estimates were calculated with national sociodemographic data. RESULTS: Data were collected between September and December 2021 in 2110 people in Indonesia and 408 people in South Africa. The adjusted weighted dementia prevalence was 27.9% (95% CI 25.2-28.9) in Indonesia and 12.5% (95% CI 9.5-16.0) in South Africa. Our results indicate that there could be >4.2 million people in Indonesia and >450 000 people in South Africa who have dementia. Only five participants (0.2%) in Indonesia and two (0.5%) in South Africa had been previously diagnosed with dementia. CONCLUSIONS: Despite prevalence estimates being high, formal diagnosis rates of dementia were very low across both countries (<1%). Further STRiDE investigations will provide indications of the impact and costs of dementia in these countries, but our results provide evidence that dementia needs to be prioritised within national health and social care policy agendas.

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.

Beyond the project: Building a strategic theory of change to address dementia care, treatment and support gaps across seven middle-income countries.

Evidence from middle-income countries indicates high and increasing prevalence of dementia and need for services. However, there has been little investment in care, treatment or support for people living with dementia and their carers. The Strengthening Responses to Dementia in Developing Countries (STRiDE) project aims to build both research capacity and evidence on dementia care and services in Brazil, Indonesia, India, Jamaica, Kenya, Mexico and South Africa. This article presents the Theory of Change (ToC) approach we used to co-design our research project and to develop a strategic direction for dementia care, treatment and support, with stakeholders. ToC makes explicit the process underlying how a programme will achieve its impact. We developed ToCs in each country and across the STRiDE project with researchers, practitioners, people living with dementia, carers and policymakers at different levels of government. This involved (1) an initial ToC workshop with all project partners (43 participants); (2) ToC workshops in each STRiDE country (22-49 participants in each); (3) comparison between country-specific and overall project ToCs; (4) review of ToCs in light of WHO dementia guidelines and action plan and (5) a final review. Our experiences suggest ToC is an effective way to generate a shared vision for dementia care, treatment and support among diverse stakeholders. However, the project contribution should be clearly delineated and use additional strategies to ensure appropriate participation from people living with dementia and their carers in the ToC process.

Exploring the feasibility of an individual cognitive stimulation therapy application and related technology for use by people with dementia and carers in Indonesia: A mixed-method study.

BACKGROUND: Cognitive stimulation therapy (CST) is a psychosocial intervention for people with dementia and can benefit cognition and quality of life. A touch-screen individualised CST (iCST) application has been developed to improve on accessibility and provide increased interactivity. This study aimed to explore the attitudes of people with dementia, carers and healthcare professionals in Indonesia towards the iCST application and related technology. METHODS: Four focus groups were organised: one comprising family carers (n = 3), two comprising people with dementia and family carers (n = 12) and one made up of family carers and home care workers (n = 3). Participants discussed the uses of technology, tried out the iCST application and completed a usability and acceptability questionnaire. Furthermore, 21 healthcare professionals attended an expert meeting to discuss the potential of implementing the iCST application in the community. RESULTS: Attitudes towards technology were positive but lack of experience, difficulties with operating devices and a limited infrastructure to support technology were described as barriers. The iCST application was seen as an interesting tool to support mental stimulation. Compared with people with dementia, carers were more willing to use the application and rated its usability higher. Healthcare professionals were positive about the interactive features of the application and judged that it could be useful within the family context. DISCUSSION: Low-cost and low-infrastructure technology like iCST can meet the needs for stimulation of people with dementia in Indonesia and other countries. By understanding the attitudes of people with dementia and carers towards IT and their willingness to adopt technology like the iCST application, we are better placed to overcome potential obstacles to its implementation. It appears that systemic changes are needed to facilitate wider use of IT particularly in dementia care. These include needs to empower end users, strengthen access and connectivity to technology, and improve diagnostic support.

Hepatitis C virus genotype in blood donors and associated liver disease in Indonesia.

OBJECTIVE: The aim of this study was to investigate the distribution of hepatitis C virus (HCV) genotype and the possible association between genotype and HCV-associated liver disease in Indonesia. METHODS: 32 anti-HCV-positive asymptomatic carriers (AC), 55 chronic hepatitis (CH), 41 liver cirrhosis (LC), and 35 hepatocellular carcinoma (HCC) patients were included in this study. HCV genotyping was performed by phylogenetic analysis of the NS5B and 5'-UTR regions. RESULTS: The HCV subtype 1b (36.5%), based on NS5B region, was the most prevalent, followed by subtypes 3k (15.4%), 2a (14.4%), 1a (12.5%) and 1c (12.5%), and 2e (4.8%). Subtypes 2f, 3a, 3b, and 4a were also found in some of the samples. HCV subtypes 3k (40.0%) and 1a (35.0%) were the two major subtypes in AC. HCV subtype 1b was not found in AC, but it was common in CH (31.3%), LC (50.0%), and HCC (57.1%). CONCLUSION: HCV subtype 1b was prevalent in samples of HCV-associated liver disease patients, including CH, LC and HCC. The percentage of subtype 1b was increased with the disease severity (AC < CH < LC < HCC).