Attitudes to long-term care in India: a secondary mixed-methods analysis.

BACKGROUND: India is the world's most populous country, and overseas Indians the world's largest diaspora. Many of the more than 1·4 million UK-based Indians will be providing care at a distance for parents living in India. Globalisation has contributed to a shift in India from traditional joint family systems to more nuclear structures. We investigated how commonly Indian parents consider and use long-term care facilities and attitudes to their use. METHODS: We did a secondary mixed-methods statistical analysis of the LASI (Longitudinal Ageing Study in India), a national, cross-sectional household survey administered in 2017-18 to 73 396 randomly selected adults aged 45 years and older in all Indian states and Union Territories (42 261 [58%] women, 31 135 [42%] men). We report the proportion and sociodemographic predictors of respondents' parent(s) living in a care home. We also did a secondary thematic analysis of the qualitative interviews from the Moving Pictures India Study, exploring attitudes to long-term care in 2022. These interviews included 19 carers (nine [47%] women; age range 31-79 years) for people with dementia and 25 professionals (19 [76%] women; age range 24-56 years) purposively selected for diversity from networks of the team based at a Bangalore hospital, India. FINDINGS: 24 LASI participants reported that their parent was living in a long-term care facility (father [n=8], mother [n=15], both parents [n=1]). Although rare overall, use and consideration of use of long-term care were more frequently reported in urban areas (n=14, 58%), by people in middle-income quintiles (n=17, 71%) with higher levels of education (n=7, 29%), who rated their health as good or very good (n=15, 63%). The themes identified in qualitative interviews were the use of long-term care facilities as a last resort, social expectations, and limited availability of long-term care facilities. INTERPRETATION: Although interviews were only conducted in Bangalore and respondents could misrepresent living arrangements due to ongoing societal stigma, the data show that very few people reside in old age homes across India, with strong preference towards intergenerational and community care. With the UK home to a growing diaspora of nuclear Indian families, our findings illustrate the contexts in which they provide care at a distance, navigating cross-cultural attitudes and social norms around long-term care. FUNDING: Alzheimer's Association US.

Attitudes to long-term care in India: A secondary, mixed methods analysis.

OBJECTIVES: In India, globalisation is purported to have contributed to shifting family structures and changing attitudes to long-term care (LTC) facility use. We investigated the attitudes to and usage frequency of LTC in India. METHODS: We conducted secondary analyses of: (a) The Moving Pictures India Project qualitative interviews with 19 carers for people with dementia and 25 professionals, collected in 2022, exploring attitudes to LTC; and (b) The Longitudinal Ageing Study in India (LASI) 2017-2018, cross-sectional survey of a randomised probability sample of Indian adults aged 45+ living in private households. RESULTS: We identified three themes from qualitative data: (1) LTC as a last resort, describes how LTC could be acceptable if care at home was "impossible" due to the person's medical condition or unavailability of the family carer, for example, if family members lived overseas or interstate. (2) Social expectations of care at home from family members and paid carers and; (3) Limited availability of LTC facilities in India, especially in rural localities, and the financial barriers to their use. Of 73,396 LASI participants, 40 were considering moving to LTC; 18,281 had a parent alive, of whom 9 reported that their father, and 16 that their mother, lived in LTC. LTC use was rare. While a third of participants with a living parent lived in urban areas, 14/24 of those with a parent in LTC lived in an urban area, supporting our qualitative findings that LTC is mainly accessed in urban areas. CONCLUSIONS: Preference for intergenerational community care combined with limited availability and societal stigma contribute to low rates of LTC use among Indian families. Future social policies should consider how to plan for greater equity in strengthening care at home and in the community, and bolstering respite and LTC services as a last resort.

Culturally Adapting Evidence on Dementia Prevention for Ethnically Diverse Communities: Lessons Learnt from co-design.

OBJECTIVES: 40% of dementia cases can be prevented by addressing 12 lifestyle factors. These risk factors have increased presence in ethnic minorities, yet dementia prevention messages have not reached these communities. This article investigates the experience of co-designing a dementia prevention animated film with 9 ethnic groups in Australia. METHODS: Evidence-based recommendations were adapted through an iterative process involving workshops with a stakeholder advisory committee and nine focus groups with 104 participants from the Arabic-, Hindi-, Tamil-, Cantonese-, Mandarin-, Greek-, Italian-, Spanish-, and Vietnamese-speaking communities. Data were analyzed using the Normalization Process Theory. RESULTS: Cultural adaptation involves consideration of the mode of delivery, imagery and tone of the resource being developed; ensuring cultural adequacy; anticipating the need of the end-users; and managing linguistic challenges associated with working across multiple languages. CONCLUSIONS: Learnings from this co-design process offer valuable insights for researchers and program developers who work with ethnic minority groups. CLINICAL IMPLICATIONS: • Adaptation across cultures and languages is a negotiation not a consensus building exercise• Linguistic adaptation requires consideration of the education levels, and linguistic and intergenerational preferences of community members• Co-designing across multiple languages and cultures risks "flattening out" key aspects of cultural specificity.

'It's Too nice': Adapting iSupport Lite for Ethnically Diverse Family Carers of a Person with Dementia.

OBJECTIVES: Resources to support dementia carers from ethnically diverse families are limited. We explored carers' and service providers' views on adapting the World Health Organization's iSupport Lite messages to meet their needs. METHODS: Six online workshops were conducted with ethnically diverse family carers and service providers (n = 21) from nine linguistic groups across Australia. Recruitment was via convenience and snowball sampling from existing networks. Data were analyzed using thematic analysis. RESULTS: Participants reported that iSupport Lite over-emphasized support from family and friends and made help-seeking sound "too easy". They wanted messages to dispel notions of carers as "superheroes", demonstrate that caring and help-seeking is stressful and time-consuming, and that poor decision-making and relationship breakdown does occur. Feedback was incorporated to co-produce a revised suite of resources. CONCLUSIONS: Beyond language translation, cultural adaptation using co-design provided participants the opportunity to develop more culturally relevant care resources that meet their needs. These resources will be evaluated for clinical and cost-effectiveness in future research. CLINICAL IMPLICATIONS: By design, multilingual resources for carers must incorporate cultural needs to communicate support messages. If this intervention is effective, it could help to reduce dementia care disparities in ethnically diverse populations in Australia and globally.

Factors influencing the attitudes of young Sri Lankan-Australians towards seeking mental healthcare: a national online survey.

BACKGROUND: Sri Lankans, as part of the South Asian diaspora, comprise one of the largest migrant groups in Australia. Although few data are available, South Asian migrants appear to experience higher rates of mental health problems, but seek help at lower rates than other migrant groups. Understanding factors that underpin mental health care seeking is necessary to inform mental health promotion strategies, including access to care. The aim was to investigate factors influencing attitudes to seeking care for mental health problems among young Sri Lankan-Australians born in Sri Lanka or in Australia. METHODS: An anonymous cross- sectional online survey which included the Multiethnic Identity Measure, Perceived Stigma Questionnaire, General Help-Seeking Questionnaire, Attitudes Towards Seeking Professional Psychological Help questionnaire and study specific questions to ascertain sociodemographic characteristics. The survey was advertised on social media and specifically included young adults aged between 18-30, who self-identified as being of Sri Lankan heritage and were living in Australia. Participation was not possible for those that did not have access to the internet. Data were analyzed using bivariable and multivariable statistics. RESULTS: Of the 396 people who attempted the survey, 323 provided fully completed data, 2 provided > 50% completed data which were included in the analyses. 71 were excluded because < 50% of the survey was completed. From all participants, 39.70% were born in Australia (SLaus), 54.46% born in Sri Lanka (SLsl) and 5.8% born in other countries. SLsl had more stigmatizing attitudes towards mental illness (p = 0.027) and seeking professional psychological help (p = 0.03). Women, those who had spent more years living in Australia and whose fathers were more highly educated had less stigmatized attitudes toward mental illness and help-seeking. CONCLUSION: Country of birth, family characteristics and gender influence stigma towards mental illness and help-seeking. Public health strategies to promote understanding of mental health problems and seeking mental healthcare are more likely to be effective if they address these factors directly.

When co-design works (sort of): the case of the Australian elder abuse screening instrument.

Applying co-design methodologies is increasingly recommended for engaging diverse end-users and bridging evidence-practice gaps. Yet, one of the ongoing challenges for research using co-design is the lack of evidence as to whether co-design leads to better outcomes than not using co-design. In this article, we outline how, despite adhering to a time and resource intensive co-design process with strong moral and ethical foundations, its implementation by end-users led to mixed outcomes around improved elder abuse screening. We discuss the implications of these ambiguous results, arguing that "noise" in our data might be inevitable due to the inherent sensitivities associated with elder abuse screening and offer a polemical recommendation about why the Australian Elder Abuse Screening Instrument (AuSI) should nevertheless be rolled out.

Focused Attention on Positive Aspects of Dementia Care in Culturally and Linguistically Diverse Communities: Qualitative Insights from Australia.

OBJECTIVES: Dementia care scholarship focuses on care challenges and less on positive aspects of care, especially among culturally and linguistically diverse (CALD) carers outside the United States. This article investigates positive aspects of dementia care across eight CALD groups in Australia. METHODS: We analyzed interviews of 112 family carers using a four-domain framework covering: a sense of personal growth, feelings of mutuality, increases in family cohesion, and a sense of personal accomplishment. RESULTS: Positive associations with care are derived from past relationships, feelings of mutual obligation, valuing changed relationships and enjoying spending time with the person with dementia. Positive aspects of care were not associated with increased family cohesion except in Vietnamese and Arab families; neither was use of ethno-specific residential aged care, except for Greek and Italian families. Religion and spirituality as a coping and comforting mechanism was inconsistently expressed. CONCLUSIONS: The study reveals the multi-dimensional nature of care, what resonates, and diverges across CALD populations. Knowing which parts of the framework apply and which do not is useful for interventions seeking to enhance positive aspects of care. CLINICAL IMPLICATIONS: Migrant populations are varied and dynamic, and practitioners should be mindful of differences within and between ethnic minority groups.

Psychological distress among migrant groups in Australia: results from the 2015 National Health Survey.

PURPOSE: To understand the relationship between migration and psychological distress, we (a) calculated the prevalence of psychological distress in specific migrant groups, and (b) examined the association between specific birth groups and psychological distress, while controlling for confounding variables to understand vulnerabilities across migrant groups. METHODS: The prevalence of psychological distress, disaggregated by birthplace, was calculated using data from the Australian 2015 National Health Survey, which measures psychological distress via the Kessler Screening Scale for Psychological Distress (K10). Multivariable logistic regression models, with adjustments for complex survey design, were fitted to examine the association between country of birth and psychological distress once extensive controls for demographic, and socioeconomics factors were included. RESULTS: 14,466 individuals ≥ 18 years completed the K10. Migrants from Italy (20.7%), Greece (20.4%), Southern and Eastern European (18.2%), and North African and Middle Eastern (21.9%) countries had higher prevalence estimates of distress compared to Australian born (12.4%) or those born in the United Kingdom (UK) (9.5%)-the largest migrant group in Australia. After adjusting for demographics, SES factors, duration in Australia, a birthplace in Italy (OR = 2.79 95% CI 1.4, 5.7), Greece (OR = 2.46 95% CI 1.1, 5.5), India (OR = 2.28 95% CI 1.3, 3.9), Southern and Eastern Europe (excluding Greece and Italy) (OR = 2.43 95% CI 1.5, 3.9), North Africa and the Middle East (OR = 3.39 95% CI 1.9, 6.2) was associated with increased odds of distress relative to those born in the UK. CONCLUSIONS: Illuminating variability in prevalence of psychological distress across migrant communities, highlights vulnerabilities in particular migrant groups, which have not previously been described. Identifying such communities can aid mental health policy-makers and service providers provide targeted culturally appropriate care.

How do mental health practitioners operationalise cultural competency in everyday practice? A qualitative analysis.

BACKGROUND: Despite continued policy and research emphasis to deliver culturally competent mental healthcare, there is: (1) limited evidence about what frontline practitioners consider to be culturally competent care and; (2) what helps or hinders them in delivering such care in their everyday practice. The aims of this article are to address these gaps. METHODS: Qualitative in-depth interviews were conducted with 20 mental health practitioners working with immigrant patients to explore their understandings and experiences of culturally competent care. Interviews were conducted between September 2015 and February 2016 in the state of Victoria, Australia. Data were thematically analysed. RESULTS: There were common understandings of cultural competence but its operationalisation differed by profession, health setting, locality, and years of experience; urban psychiatrists were more functional in their approach and authoritarian in their communication with patients compared to allied health staff in non-specialist mental health settings, in rural areas, with less years of experience. Different methods of operationalising cultural competence translated into complex ways of building cultural concordance with patients, also influenced by health practitioners' own cultural background and cultural exposures. Limited access to interpreters and organisational apathy remain barriers to promoting cultural competency whereas organisational support, personal motivation, and professional resilience remain critical facilitators to sustaining cultural competency in everyday practice. CONCLUSION: While there is need for widespread cultural competence teaching to all mental health professionals, this training must be specific to different professional needs, health settings, and localities of practice (rural or urban). Experiential teaching at tertiary level or professional development programs may provide an avenue to improve the status quo but a 'one-size-fits-all' model is unlikely to work.

Agency, activation and compatriots: the influence of social networks on health-seeking behaviours among Sri Lankan migrants and Anglo-Australians with depression.

The nexus between social networks and illness behaviours is important in uptake of health care, however scant research has explored this relationship in South Asian migrants living with mental illness. We explored the interplay between culture, social networks and health seeking in Sri Lankan migrants and Anglo-Australians living with depression. Forty-eight in-depth interviews were conducted and data were analysed through the theoretical prism of the network episode model. Results showed that social networks were important in negotiating care. Decisions to initiate care occurred along a continuum of choice and agency; some took charge of their care, others were coerced into care, however some Sri Lankan migrants were led through various informal channels of care. Selective activation of compatriots - those perceived to understand mental illness-became increasingly important to participants through their illness careers. Compatriots were considered of greater benefit as participants progressed through depression than otherwise meaningful social networks based on ethnicity, culture and kinship. We argue that the role of social networks is pivotal in uptake of formal care, and engaging with communities to improve responses of social networks to mental illnesses may provide a bottom-up avenue for improving uptake of mental health services in migrant communities.

Playing With Antidepressants: Perspectives From Indian Australians and Anglo-Australians Living With Depression.

Patient perspectives were explored on the meaning and experience of antidepressant use by applying Johan Huizinga's theory of play to interviews from Indian Australians and Anglo-Australians diagnosed with depression. Through the analysis, the centrality of Huizinga's "magic circle" emerged, that is, defining the boundaries within which one could safely play. Consumption of antidepressants involved learning, breaking, and modulating rules of the game of adherence, then forging a new "magic circle." In these games, there were playful elements including experimentation, improvisation, absorption, and experiential learning. This application of Huizinga's theory in relation to antidepressant use is a novel approach in the literature on medication non/adherence. This application not only opens a new theoretical line of inquiry but also shows that antidepressant non/adherence is not a static practice but dynamic and changing, revealing critical insights around participant's agency, capabilities, desires, and notions of selfhood with regard to managing their depression and conceptualizing their recovery.

Do Web-based Mental Health Literacy Interventions Improve the Mental Health Literacy of Adult Consumers? Results From a Systematic Review.

BACKGROUND: Low levels of mental health literacy (MHL) have been identified as an important contributor to the mental health treatment gap. Interventions to improve MHL have used traditional media (eg, community talks, print media) and new platforms (eg, the Internet). Evaluations of interventions using conventional media show improvements in MHL improve community recognition of mental illness as well as knowledge, attitude, and intended behaviors toward people having mental illness. However, the potential of new media, such as the Internet, to enhance MHL has yet to be systematically evaluated. OBJECTIVE: Study aims were twofold: (1) To systematically appraise the efficacy of Web-based interventions in improving MHL. (2) To establish if increases in MHL translated into improvement in individual health seeking and health outcomes as well as reductions in stigma toward people with mental illness. METHODS: We conducted a systematic search and appraisal of all original research published between 2000 and 2015 that evaluated Web-based interventions to improve MHL. The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines were used to report findings. RESULTS: Fourteen studies were included: 10 randomized controlled trials and 4 quasi-experimental studies. Seven studies were conducted in Australia. A variety of Web-based interventions were identified ranging from linear, static websites to highly interactive interventions such as social media games. Some Web-based interventions were specifically designed for people living with mental illness whereas others were applicable to the general population. Interventions were more likely to be successful if they included "active ingredients" such as a structured program, were tailored to specific populations, delivered evidenced-based content, and promoted interactivity and experiential learning. CONCLUSIONS: Web-based interventions targeting MHL are more likely to be successful if they include active ingredients. Improvements in MHL see concomitant improvements in health outcomes, especially for individuals with mild to moderate depression. The most promising interventions suited to this cohort appear to be MoodGYM and BluePages, 2 interventions from Australia. However, the relationship between MHL and formal and informal help seeking is less clear; self-stigma appears to be an important mediator with results showing that despite improvements in MHL and community attitudes to mental illness, individuals with mental illness still seek help at relatively low rates. Overall, the Internet is a viable method to improve MHL. Future studies could explore how new technology interfaces (eg, mobile phones vs computers) can help improve MHL, mental health outcomes, and reduce stigma.

Efficacy of depression treatments for immigrant patients: results from a systematic review.

BACKGROUND: The unprecedented rates of global migration present unique challenges to mental health services in migrant receiving countries to provide efficacious and culturally salient treatment for mental health conditions including depression. This review aimed to identify and evaluate the effectiveness of depression interventions specifically directed towards first-generation immigrant populations. METHODS: We conducted a systematic review of original research published between 2000 and 2013 that investigated depression interventions in first generation immigrants. RESULTS: Fifteen studies were included; the majority focused on Latino immigrants living in the United States (US). Twelve studies investigated the use of psychotherapies; the remainder examined collaborative care models and physical exercise-based interventions. Cognitive Behavioral Therapy and Behavioral Activation tended to improve depressive symptoms, especially when culturally adapted to suit clients while Problem Solving Therapy improved depressive symptomology with and without adaptations. Collaborative care and exercise did not significantly improve depressive symptoms. CONCLUSION: Depression may be effectively treated by means of psychotherapies, especially when treatments are culturally adapted. However the reviewed studies were limited due to methodological weaknesses and were predominantly undertaken in the US with Latino patients. To improve generalizability, future research should be undertaken in non-US settings, amongst diverse ethnic groups and utilize larger sample sizes in either randomized clinical trials or observational cohort studies.

Relational Solidarity and Conflicting Ethics in Dementia Care in Urban India.

OBJECTIVES: Using the concept of relational solidarity, we examine how autonomy, equality, dignity, and personhood are practiced in the care of people living with dementia at home in urban India. METHODS: Video interviews with 19 family carers and 25 health providers conducted in English, Hindi, and Kannada in Bengaluru between March and July 2022. Data were translated into English and thematically analyzed. RESULTS: Family carers and providers unanimously agreed that people with dementia should be respected and cared for. Concurrently, they perceived people with dementia as being "like a kid" and used the analogy of a parent-child relationship to understand their care responsibilities. This analogy informed how ethical principles such as personhood and equality were reframed in the relationships between family carers and people with dementia, as well as how carers and providers maintained the safety but undermined the autonomy of people with dementia through restricting their movements inside and outside the home. DISCUSSION: There can be relational solidarity in dementia care at home in urban India but also contradictions in the interpretations and applications of the ethical principles of autonomy, equality, dignity, and personhood. As such, a more organic, grassroots model of ethical practice is needed to frame care and provide material support to families in India.

The impact of elder abuse training on subacute health providers and older adults: study protocol for a randomized control trial.

BACKGROUND: Elder abuse often goes unreported and undetected. Older people may be ashamed, fearful, or otherwise reticent to disclose abuse, and many health providers are not confident in asking about it. In the No More Shame study, we will evaluate a co-designed, multi-component intervention that aims to improve health providers' recognition, response, and referral of elder abuse. METHODS: This is a single-blinded, pragmatic, cluster randomised controlled trial. Ten subacute hospital sites (i.e. clusters) across Australia will be allocated 1:1, stratified by state to a multi-component intervention comprising a training programme for health providers, implementation of a screening tool and use of site champions, or no additional training or support. Outcomes will be collected at baseline, 4 and 9 months. Our co-primary outcomes are change in health providers' knowledge of responding to elder abuse and older people's sense of safety and quality of life. We will include all inpatients at participating sites, aged 65 + (or aged 50 + if Aboriginal or Torres Strait Islander), who are able to provide informed consent and all unit staff who provide direct care to older people; a sample size of at least 92 health providers and 612 older people will provide sufficient power for primary analyses. DISCUSSION: This will be one of the first trials in the world to evaluate a multi-component elder abuse intervention. If successful, it will provide the most robust evidence base to date for health providers to draw on to create a safe environment for reporting, response, and referral. TRIAL REGISTRATION: ANZCTR, ACTRN12623000676617p . Registered 22 June 2023.

Inclusive dementia care for ethnically diverse families.

PURPOSE OF REVIEW: With population ageing and global migration, rates of dementia are set to rapidly increase in ethnically diverse populations. This narrative review examines recent evidence on what constitutes culturally appropriate models of care. RECENT FINDINGS: Barriers to inclusive care continue to prevail, amplifying dementia disparities in ethnically diverse communities. Cultural models that can address these include ensuring health and aged care staff are culturally competent, language supports are available, and cultural practices are integrated into daily care routines. Fundamentally, systems must be reformed to ensure they meet the needs of diverse end-users. More inclusive and widespread ethno-specific services are needed, and governments need to be mindful of demographic transitions in their populations and plan accordingly to meet future demand. Digital media and new technologies offer promising new ways to deliver culturally appropriate care to ethnically diverse groups, but its full potential is yet to be realised. SUMMARY: Persistent dementia disparities in ethnically diverse communities can be overcome by operationalising cultural models of care, leveraging the promise of digital media, and systems redesign.

Breaking the barriers: overcoming dementia-related stigma in minority communities.

Dementia is a global health concern that affects individuals irrespective of their cultural or linguistic backgrounds. However, research has long recognized the pronounced stigma associated with dementia, particularly within Culturally and Linguistically Diverse (CALD) communities. This article seeks to summarize the underlying factors contributing to the heightened levels of dementia stigma within CALD communities, through a review of the literature. Our examination shows that cultural beliefs, language barriers, limited awareness, and the impact of migration on perceptions of aging and cognitive decline are contributing factors. Consequently, our analysis highlights the need for tailored, culturally appropriate interventions aimed at mitigating stigma and enhancing dementia care within CALD populations. Our proposed solutions, built on a social-ecological approach, highlights the critical role of collaborative efforts involving policymakers, healthcare providers, community organizations, and CALD community members in fostering a more dementia-inclusive society. This perspective piece aims to shed light on the distinct challenges faced by CALD communities, while advocating for a holistic approach to redefine perceptions and care strategies tailored to these populations.

The MINDSET Study: Co-Designing Training for Interpreters in Dementia and Cognitive Assessments.

There is a growing demand for interpreter-mediated cognitive assessments for dementia. However, most interpreters lack specialist knowledge of dementia and cognitive assessment tools. This can negatively affect the way instructions and responses are conveyed between clinicians and patients, undermining clinicians' ability to accurately assess for cognitive impairment. This article reports on the co-design of an online dementia training package, MINDSET, which aims to address this gap. Two iterative online co-design workshops were conducted in October and November 2021, using a World Café approach. Sixteen clinicians, interpreters, and multilingual family carers of a person with dementia participated. Based on these workshops, training and assessment materials were developed and tested with 12 interpreters from April to June 2022. The training package comprises online modules: 1) Knowledge of Dementia and Australia's Aged Care System, 2) Briefings and Introductions, 3) Interpreting Skills, 4) Interpreting Ethics, and 5) Cross-cultural Communication. The codesign process highlighted divergent perspectives between clinicians and interpreters on an interpreter's role during a cognitive assessment, but it also facilitated negotiation and consensus building, which enriched the training content. The training is now developed and will be evaluated in a randomized control trial and subsequent implementation study.

Improving the lives of ethnically diverse family carers and people living with dementia using digital media resources - Protocol for the Draw-Care randomised controlled trial.

Objectives: Ethnically diverse family carers of people living with dementia (hereafter carers and people with dementia) experience more psychological distress than other carers. To reduce this inequality, culturally adapted, multilingual, evidence-based practical assistance is needed. This paper details the Draw-Care study protocol including a randomised control trial (RCT) to test the effectiveness of a digital intervention comprising a multilingual website, virtual assistant, animated films, and information, on the lives of carers and people with dementia in Australia. Methods: The Draw-Care intervention will be evaluated in a 12-week active waitlist parallel design RCT with 194 carers from Arabic, Cantonese, Greek, Hindi, Italian, Mandarin, Spanish, Tamil, and Vietnamese-speaking language groups. Our intervention was based on the World Health Organization's (WHO) iSupport Lite online carer support messages and was co-designed with carers, people with dementia, service providers, and clinicians. Culturally adapted multilingual digital resources were created in nine languages and English. Results: In Phase I (2022), six co-design workshops with stakeholders and interviews with people with dementia informed the development of the intervention which will be trialled and evaluated in Phases II and III (2023 and 2024). Conclusions: Digital media content is a novel approach to providing cost-effective access to health care information. This study protocol details the three study phases including the RCT of a co-designed, culturally adapted, multilingual, digital intervention for carers and people with dementia to advance the evidence in dementia and digital healthcare research and help meet the needs of carers and people with dementia in Australia and globally.

Using Digital Media to Improve Dementia Care in India: Protocol for a Randomized Controlled Trial.

BACKGROUND: India is undergoing a demographic transition characterized by population aging and is witnessing a high dementia rate. Although nearly 7 million people live with dementia in India, dementia awareness is poor, and current resources addressing dementia care are basic and often incomplete, duplicated, or conflicting. To address this gap, this study aims to use digital media, which has had a massive technological uptake in India, to improve dementia care in India. OBJECTIVE: The objective of this paper is to describe an intervention study design that examines the feasibility and acceptability of Moving Pictures India, a digital media resource to improve dementia care in India. METHODS: This study employs a mixed methods design and is divided into 4 phases: (1) video interviews with Indian caregivers and health professionals; (2) coproduction of resources; (3) pilot randomized controlled trial (RCT); and (4) dissemination and analytics. The pilot RCT will follow an experimental parallel group design with 2 arms aiming to assess the impact, feasibility, and acceptability of the developed resources. The primary outcome measures for the pilot RCT will be feasibility and acceptability, while the secondary outcome measures will be caregiver burden, mood, and quality of life. RESULTS: This study received funding from the Alzheimer's Association in the United States in July 2021. In 2023, we will enroll 60 dementia caregivers (40 caregivers in the intervention arm and 20 in the control) for the pilot RCT. The study has been approved by the National Institute of Mental Health and Neuro Sciences Ethics Committee (26th IEC (BEH.SC.DIV.)/2020-21 dated November 11, 2020); the Health Ministry's Screening Committee, India (proposal ID 2020-10137); the Curtin University Human Research Ethics Committee (approval number HRE2020-0735); and the NARI Research Governance Office (site-specific approval dated March 17, 2021). CONCLUSIONS: This protocol is designed to deliver unique, coproduced, and evidence-based media resources to support caregivers of persons with dementia in India and other countries aiming to utilize digital media for dementia care. If the intervention is found feasible and acceptable, postpiloting analytics and qualitative feedback will be used to develop an implementation trial to evaluate the effectiveness of the potential low-risk high-benefit intervention in practice. TRIAL REGISTRATION: Clinical Trials Registry-India CTRI/2021/01/030403; http://ctri.nic.in/Clinicaltrials/pmaindet2.php?trialid=50794. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/38456.