A qualitative study on the adaptation of community programmes for the promotion of early detection and health-seeking of perinatal depression in Nepal.

BACKGROUND: Despite the high burden of perinatal depression in Nepal, the detection rate is low. Community-based strategies such as sensitization programmes and the Community Informant Detection Tool (CIDT) have been found to be effective in raising awareness and thus promoting the identification of mental health problems. This study aims to adapt these community strategies for perinatal depression in the Nepalese context. METHODS: We followed a four-step process to adapt the existing community sensitization program manual and CIDT. Step 1 included in-depth interviews with women identified with perinatal depression (n=36), and focus group discussions were conducted with health workers trained in community mental health (n=13), female community health volunteers (FCHVs), cadre of Nepal government for the prevention and promotion of community maternal and child health (n=16), and psychosocial counsellors (n=5). We explored idioms and understanding of depression, perceived causes, and possible intervention. Step 2 included draft preparation based on the qualitative study. Step 3 included a one-day workshop with the psychosocial counsellors (n=2) and health workers (n=12) to assess the understandability and comprehensiveness of the draft and to refine the content. A review of the CIDT and community sensitization program manual by a psychiatrist was performed in Step 4. RESULTS: The first step led to the content development for the CIDT and community sensitization manual. Multiple stakeholders and experts reviewed and refined the content from the second to fourth steps. Idioms of depression and commonly cited risk factors were incorporated in the CIDT. Additionally, myths of perinatal depression and the importance of the role of family were added to the community sensitization manual. CONCLUSION: Both the CIDT and community sensitization manual are grounded in the local context and are simple, clear, and easy to understand.

Integrating mental health into chronic care in South Africa: the development of a district mental healthcare plan.

BACKGROUND: In South Africa, the escalating prevalence of chronic illness and its high comorbidity with mental disorders bring to the fore the need for integrating mental health into chronic care at district level. AIMS: To develop a district mental healthcare plan (MHCP) in South Africa that integrates mental healthcare for depression, alcohol use disorders and schizophrenia into chronic care. METHOD: Mixed methods using a situation analysis, qualitative key informant interviews, theory of change workshops and piloting of the plan in one health facility informed the development of the MHCP. RESULTS: Collaborative care packages for the three conditions were developed to enable integration at the organisational, facility and community levels, supported by a human resource mix and implementation tools. Potential barriers to the feasibility of implementation at scale were identified. CONCLUSIONS: The plan leverages resources and systems availed by the emerging chronic care service delivery platform for the integration of mental health. This strengthens the potential for future scale up.

Planning and evaluating mental health services in low- and middle-income countries using theory of change.

BACKGROUND: There is little practical guidance on how contextually relevant mental healthcare plans (MHCPs) can be developed in low-resource settings. AIMS: To describe how theory of change (ToC) was used to plan the development and evaluation of MHCPs as part of the PRogramme for Improving Mental health carE (PRIME). METHOD: ToC development occurred in three stages: (a) development of a cross-country ToC by 15 PRIME consortium members; (b) development of country-specific ToCs in 13 workshops with a median of 15 (interquartile range 13-22) stakeholders per workshop; and (c) review and refinement of the cross-country ToC by 18 PRIME consortium members. RESULTS: One cross-country and five district ToCs were developed that outlined the steps required to improve outcomes for people with mental disorders in PRIME districts. CONCLUSIONS: ToC is a valuable participatory method that can be used to develop MHCPs and plan their evaluation.

Development of a scalable mental healthcare plan for a rural district in Ethiopia.

BACKGROUND: Developing evidence for the implementation and scaling up of mental healthcare in low- and middle-income countries (LMIC) like Ethiopia is an urgent priority. AIMS: To outline a mental healthcare plan (MHCP), as a scalable template for the implementation of mental healthcare in rural Ethiopia. METHOD: A mixed methods approach was used to develop the MHCP for the three levels of the district health system (community, health facility and healthcare organisation). RESULTS: The community packages were community case detection, community reintegration and community inclusion. The facility packages included capacity building, decision support and staff well-being. Organisational packages were programme management, supervision and sustainability. CONCLUSIONS: The MHCP focused on improving demand and access at the community level, inclusive care at the facility level and sustainability at the organisation level. The MHCP represented an essential framework for the provision of integrated care and may be a useful template for similar LMIC.

Evaluation of district mental healthcare plans: the PRIME consortium methodology.

BACKGROUND: Few studies have evaluated the implementation and impact of real-world mental health programmes delivered at scale in low-resource settings. AIMS: To describe the cross-country research methods used to evaluate district-level mental healthcare plans (MHCPs) in Ethiopia, India, Nepal, South Africa and Uganda. METHOD: Multidisciplinary methods conducted at community, health facility and district levels, embedded within a theory of change. RESULTS: The following designs are employed to evaluate the MHCPs: (a) repeat community-based cross-sectional surveys to measure change in population-level contact coverage; (b) repeat facility-based surveys to assess change in detection of disorders; (c) disorder-specific cohorts to assess the effect on patient outcomes; and (d) multilevel case studies to evaluate the process of implementation. CONCLUSIONS: To evaluate whether and how a health-system-level intervention is effective, multidisciplinary research methods are required at different population levels. Although challenging, such methods may be replicated across diverse settings.

Non-fatal suicidal behaviour in rural Ethiopia: a cross-sectional facility- and population-based study.

BACKGROUND: Injury related to self-harm is one of the leading causes of global disease burden. As a formative work for a programme to implement comprehensive mental healthcare in a rural district in Ethiopia, we determined the 12-month prevalence of non-fatal suicidal behaviour as well as factors associated with this behaviour to understand the potential burden of the behaviour in the district. METHOD: Population-based (n = 1485) and facility-based (n = 1014) cross-sectional surveys of adults, using standardised, interview-based measures for suicidality (items on suicide from the Composite International Diagnostic Interview), depressive symptoms (the Patient Health Questionnaire) and alcohol use disorders (Alcohol Use Disorder Investigation Test; AUDIT). RESULTS: The overall 12-month prevalence of non-fatal suicidal behaviour, consisting of suicidal ideation, plan and attempt, was 7.9 % (95 % Confidence Interval (CI) = 6.8 % to 8.9 %). The prevalence was significantly higher in the facility sample (10.3 %) compared with the community sample (6.3 %). The 12-month prevalence of suicide attempt was 4.4 % (95 % CI = 3.6 % to 5.3 %), non-significantly higher among the facility sample (5.4 %) compared with the community sample (3.8 %). Over half of those with suicidal ideation (56.4 %) transitioned from suicidal ideation to suicide attempt. Younger age, harmful use of alcohol and higher depression scores were associated significantly with increased non-fatal suicidal behaviours. The only factor associated with transition from suicidal ideation to suicide attempt was high depression score. Only 10.5 % of the sample with suicidal ideation had received any treatment for their suicidal behaviour: 10.8 % of the community sample and 10.2 % of the facility sample. Although help seeking increased with progression from ideation to attempt, there was no statistically significant difference between the groups. CONCLUSION: Non-fatal suicidal behaviour is an important public health problem in this rural district. A more in-depth understanding of the context of the occurrence of the behaviour, improving access to care and targeting depression and alcohol use disorder are important next steps. The role of other psychosocial factors should also be explored to assist the provision of holistic care.

Maternal mental health in primary care in five low- and middle-income countries: a situational analysis.

BACKGROUND: The integration of maternal mental health into primary health care has been advocated to reduce the mental health treatment gap in low- and middle-income countries (LMICs). This study reports findings of a cross-country situation analysis on maternal mental health and services available in five LMICs, to inform the development of integrated maternal mental health services integrated into primary health care. METHODS: The situation analysis was conducted in five districts in Ethiopia, India, Nepal, South Africa and Uganda, as part of the Programme for Improving Mental Health Care (PRIME). The analysis reports secondary data on the prevalence and impact of priority maternal mental disorders (perinatal depression, alcohol use disorders during pregnancy and puerperal psychosis), existing policies, plans and services for maternal mental health, and other relevant contextual factors, such as explanatory models for mental illness. RESULTS: Limited data were available at the district level, although generalizable data from other sites was identified in most cases. Community and facility-based prevalences ranged widely across PRIME countries for perinatal depression (3-50 %) and alcohol consumption during pregnancy (5-51 %). Maternal mental health was included in mental health policies in South Africa, India and Ethiopia, and a mental health care plan was in the process of being implemented in South Africa. No district reported dedicated maternal mental health services, but referrals to specialised care in psychiatric units or general hospitals were possible. No information was available on coverage for maternal mental health care. Challenges to the provision of maternal mental health care included; limited evidence on feasible detection and treatment strategies for maternal mental disorders, lack of mental health specialists in the public health sector, lack of prescribing guidelines for pregnant and breastfeeding women, and stigmatising attitudes among primary health care staff and the community. CONCLUSIONS: It is difficult to anticipate demand for mental health care at district level in the five countries, given the lack of evidence on the prevalence and treatment coverage of women with maternal mental disorders. Limited evidence on effective psychosocial interventions was also noted, and must be addressed for mental health programmes, such as PRIME, to implement feasible and effective services.

Developing a mental health care plan in a low resource setting: the theory of change approach.

BACKGROUND: Scaling up mental healthcare through integration into primary care remains the main strategy to address the extensive unmet mental health need in low-income countries. For integrated care to achieve its goal, a clear understanding of the organisational processes that can promote and hinder the integration and delivery of mental health care is essential. Theory of Change (ToC), a method employed in the planning, implementation and evaluation of complex community initiatives, is an innovative approach that has the potential to assist in the development of a comprehensive mental health care plan (MHCP), which can inform the delivery of integrated care. We used the ToC approach to develop a MHCP in a rural district in Ethiopia. The work was part of a cross-country study, the Programme for Improving Mental Health Care (PRIME) which focuses on developing evidence on the integration of mental health in to primary care. METHODS: An iterative ToC development process was undertaken involving multiple workshops with stakeholders from diverse backgrounds that included representatives from the community, faith and traditional healers, community associations, non-governmental organisations, Zonal, Regional and Federal level government offices, higher education institutions, social work and mental health specialists (psychiatrists and psychiatric nurses). The objective of this study is to report the process of implementing the ToC approach in developing mental health care plan. RESULTS: A total of 46 persons participated in four ToC workshops. Four critical path dimensions were identified: community, health facility, administrative and higher level care organisation. The ToC participants were actively engaged in the process and the ToC encouraged strong commitment among participants. Key opportunities and barriers to implementation and how to overcome these were suggested. During the workshops, a map incorporating the key agreed outcomes and outcome indicators was developed and finalized later. CONCLUSIONS: The ToC approach was found to be an important component in the development of the MHCP and to encourage broad political support for the integration of mental health services into primary care. The method may have broader applicability in planning complex health interventions in low resource settings.

The validity of the Substance Abuse and Mental Illness Symptom Screener (SAMISS) in people living with HIV/AIDS in primary HIV care in Cape Town, South Africa.

UNLABELLED: Given the high prevalence of HIV in South Africa and co-morbid mental disorders in people living with HIV/AIDs (PLWHA) we sought to validate a brief screening tool in primary HIV care. METHODS: 366 PLWHA were recruited prior to combination anti-retroviral treatment (CART) initiation from two primary health HIV clinics. A mental health nurse administered a socio-demographic questionnaire and the Mini Neuropsychiatric Interview (MINI) and a lay counsellor administered the Substance and Mental Illness Symptom Screener (SAMISS). RESULTS: Using the MINI, 17 % of participants were identified with either depression, anxiety disorders or adjustment disorder and 18 % with substance or alcohol abuse/dependence. The sensitivity and specificity of the SAMISS was 94 % (95 % CI: 88-98 %) and 58 % (95 % CI: 52-65 %) respectively, with the alcohol component (sensitivity: 94 %; specificity: 85 %) performing better than the mental illness component of the SAMISS (sensitivity: 97 %; specificity: 60 %). The specificity of the tool improved when the cut-off for the mental illness component was increased. CONCLUSION: The SAMISS may provide a useful first tier screening tool for common mental disorders in primary care for PLWHA.

Population level mental distress in rural Ethiopia.

BACKGROUND: As part of a situational analysis for a research programme on the integration of mental health care into primary care (Programme for Improving Mental Health Care-PRIME), we conducted a baseline study aimed at determining the broad indicators of the population level of psychosocial distress in a predominantly rural community in Ethiopia. METHODS: The study was a population-based cross-sectional survey of 1497 adults selected through a multi-stage random sampling process. Population level psychosocial distress was evaluated by estimating the magnitude of common mental disorder symptoms (CMD; depressive, anxiety and somatic symptoms reaching the level of probable clinical significance), harmful use of alcohol, suicidality and psychosocial stressors experienced by the population. RESULTS: The one-month prevalence of CMD at the mild, moderate and severe threshold levels was 13.8%, 9.0% and 5.1% respectively. The respective one-month prevalence of any suicidal ideation, persistent suicidal ideation and suicide attempt was 13.5%, 3.8% and 1.8%. Hazardous use of alcohol was identified in 22.4%, significantly higher among men (33.4%) compared to women (11.3%). Stressful life events were widespread, with 41.4% reporting at least one threatening life event in the preceding six months. A similar proportion reported poor social support (40.8%). Stressful life events, increasing age, marital loss and hazardous use of alcohol were associated with CMD while stressful life events, marital loss and lower educational status, and CMD were associated with suicidality. CMD was the strongest factor associated with suicidality [e.g., OR (95% CI) for severe CMD = 60.91 (28.01, 132.48)] and the strength of association increased with increase in the severity of the CMD. CONCLUSION: Indicators of psychosocial distress are prevalent in this rural community. Contrary to former assumptions in the literature, social support systems seem relatively weak and stressful life events common. Interventions geared towards modifying general risk factors and broader strategies to promote mental wellbeing are required.

Anti-stigma interventions in low-income and middle-income countries: a systematic review.

Background: Stigma exacerbates power imbalances and societal disparities, significantly impacting diverse identities and health conditions, particularly for low and middle-income countries (LMICs). Though crucial for dismantling harmful stereotypes, and enhancing healthcare utilisation, existing research on anti-stigma interventions is limited with its condition-focused approach. We aimed to thoroughly evaluate peer-reviewed and non-peer-reviewed literature for a comprehensive review of anti-stigma interventions for diverse identities and all health conditions in LMICs. Methods: This review systematically explored peer-reviewed and non-peer-reviewed literature, in ten electronic databases up to January 30, 2024, covering all anti-stigma interventions across various stigmatised identities and health conditions in LMICs. Quality assessment for this systematic review was conducted as per Cochrane Collaboration's suggested inclusions. The review was registered with PROSPERO (Registration: 2017 CRD42017064283). Findings: Systematic synthesis of the 192 included studies highlights regional imbalances, while providing valuable insights on robustness and reliability of anti-stigma research. Most studies used quasi-experimental design, and most centred on HIV/AIDS or mental health related stigma, with very little work on other issues. Certain high-population LMICs had no/little representation. Interpretation: The interventions targeted diverse segments of populations and consequently yielded a multitude of stigma-related outcomes. However, despite the heterogeneity of studies, most reported positive outcomes underscoring the effectiveness of existing interventions to reduce stigma. Funding: This study is supported by the UK Medical Research Council Indigo Partnership (MR/R023697/1) award.

Adolescent perspectives on peripartum mental health prevention and promotion from Kenya: Findings from a design thinking approach.

In Kenya, approximately one in five girls aged 15-19 years old are pregnant or already a mother. Adolescent girls and young women experience significant mental health vulnerabilities during the pregnancy and postpartum periods, leading to poor antenatal and postnatal care attendance and inferior infant and maternal health outcomes. Pregnant adolescents often experience stigma and disenfranchisement due to their pregnancy status and at the same time lack access to mental health support within health settings, schools, religious institutions, and communities. This paper presents the results of qualitative interviews embedded within the human-centered design (HCD) process used to adapt the Helping Adolescents Thrive (HAT) program for Kenyan peripartum adolescents including young fathers. This qualitative study used two phases. First, a HAT advisory group participated in a series of four workshops to help identify and articulate mental health promotion needs and deepened the team's understanding of youth-centered thinking. Second, qualitative interviews were conducted with 39 pregnant and parenting adolescents to understand their perspectives on mental health prevention and promotion. Pregnant and parenting adolescents articulated different needs including poor support, stigma, and psychological disturbances. Parenting adolescents reported disturbed relationships, managing motherhood, poor health, and social empowerment. Participants highlighted sources of stress including economic challenges, fear of delivery, strained relationships, rejection, and stigma. Participants described psychological disturbances such as feeling stressed, worthless, withdrawn, and suicidal. Coping mechanisms reported by participants included engaging in domestic activities, hobbies, and social networking. Peers, family and spirituality were identified as important sources of support, as well as school integration, livelihoods, support groups and mentorships. Findings from this study can be used to strengthen and adapt HAT program, policy and practice for mental health prevention and promotion for pregnant and parenting adolescents.

A theory of change for community-initiated mental health care in the United States.

Mental health service delivery needs radical reimagination in the United States where unmet needs for care remain large and most metrics on the burden of mental health problems have worsened, despite significant numbers of mental health professionals, spending on service provision and research. The COVID-19 pandemic has exacerbated the need for mental health care. One path to a radical reimagination is "Community Initiated Care (CIC)" which equips and empowers communities to address by providing brief psychosocial interventions by people in community settings. We co-developed a theory of change (ToC) for CIC with 24 stakeholders including representatives from community-based, advocacy, philanthropic and faith-based organizations to understand how CIC could be developed and adapted for specific contexts. We present a ToC which describes ways in which the CIC initiative can promote and strengthen mental health in communities in the United States with respect to community organization and leadership; community care and inclusion and normalizing mental health. We propose 10 strategies as part of CIC and propose a way forward for implementation and evaluation. This CIC model is a local, tailored approach which can expand the role of community members to strengthen our response to mental health needs in the United States.

Developing best practice principles for the provision of programs and services to people transitioning from custody to the community: study protocol for a modified Delphi consensus exercise.

INTRODUCTION: There is a lack of standard nomenclature and a limited understanding of programmes and services delivered to people in prisons as they transition into the community to support their integration and reduce reoffending related risk factors. The aim of this paper is to outline the protocol for a modified Delphi study designed to develop expert consensus on the nomenclature and best-practice principles of programmes and services for people transitioning from prison into the community. METHODS AND ANALYSIS: An online, two-phase modified Delphi process will be conducted to develop an expert consensus on nomenclature and the best-practice principles for these programmes. In the preparatory phase, a questionnaire was developed comprising a list of potential best-practice statements identified from a systematic literature search. Subsequently, a heterogeneous sample of experts including service providers, Community and Justice Services, Not for Profits, First Nations stakeholders, those with lived experience, researchers and healthcare providers will participate in the consensus building phase (online survey rounds and online meeting) to achieve consensus on nomenclature and best-practice principles. Participants will indicate, via Likert scale, to what extent they agree with nomenclature and best-practice statements. If at least 80% of the experts agree to a term or statement (indicated via Likert scale), it will be included in a final list of nomenclature and best-practice statements. Statements will be excluded if 80% experts disagree. Nomenclature and statements not meeting positive or negative consensus will be explored in a facilitated online meeting. Approval from experts will be sought on the final list of nomenclature and best-practice statements. ETHICS AND DISSEMINATION: Ethical approval has been received from the Justice Health and Forensic Mental Health Network Human Research Ethics Committee, the Aboriginal Health and Medical Research Council Human Research Ethics Committee, the Corrective Services New South Wales Ethics Committee and the University of Newcastle Human Research Ethics Committee. The results will be disseminated via peer-reviewed publication.

Transforming dementia research into policy change: A case study of the multi-country STRiDE project.

STRiDE was an ambitious four-year project in seven countries aiming to build capacity around generating and using research to support the development of policies to improve quality of life of people with dementia and their carers. The project's innovative approach combined rigorous academic research and hands-on civil society advocacy. This paper explores the project's unique strategy for policy change and compiles case-studies from several of the STRiDE countries. Finally, we share lessons learned and next steps to keep momentum for policy change going in each of these countries - and beyond.

Psychosis Recovery Orientation in Malawi by Improving Services and Engagement (PROMISE) protocol.

Malawi has a population of around 20 million people and is one of the world's most economically deprived nations. Severe mental illness (largely comprising psychoses and severe mood disorders) is managed by a very small number of staff in four tertiary facilities, aided by clinical officers and nurses in general hospitals and clinics. Given these constraints, psychosis is largely undetected and untreated, with a median duration of untreated psychosis (DUP) of around six years. Our aim is to work with people with lived experience (PWLE), caregivers, local communities and health leaders to develop acceptable and sustainable psychosis detection and management systems to increase psychosis awareness, reduce DUP, and to improve the health and lives of people with psychosis in Malawi. We will use the UK Medical Research Council guidance for developing and evaluating complex interventions, including qualitative work to explore diverse perspectives around psychosis detection, management, and outcomes, augmented by co-design with PWLE, and underpinned by a Theory of Change. Planned deliverables include a readily usable management blueprint encompassing education and community supports, with an integrated care pathway that includes Primary Health Centre clinics and District Mental Health Teams. PWLE and caregivers will be closely involved throughout to ensure that the interventions are shaped by the communities concerned. The effect of the interventions will be assessed with a quasi-experimental sequential implementation in three regions, in terms of DUP reduction, symptom remission, functional recovery and PWLE / caregiver impact, with quality of life as the primary outcome. As the study team is focused on long-term impact, we recognise the importance of having embedded, robust evaluation of the programme as a whole. We will therefore evaluate implementation processes and outcomes, and cost-effectiveness, to demonstrate the value of this approach to the Ministry of Health, and to encourage longer-term adoption across Malawi.

Reliability of the lay adherence counsellor administered substance abuse and mental illness symptoms screener (SAMISS) and the International HIV Dementia Scale (IHDS) in a primary care HIV clinic in Cape Town, South Africa.

HIV infection is associated with an increased prevalence of common mental disorders and with the development of HIV associated neurological disorders (HAND). The aim of this research was to determine the reliability of lay adherence counsellors in the administration of the substance abuse and mental illness symptom screener (SAMISS) for common mental disorders and International HIV Dementia Scale (IHDS) for HAND in a South African sample of 269 people living with HIV/AIDS and on HAART in a primary healthcare setting. We used a cross-sectional design with each patient assessed by a mental health nurse and counsellor, 1 week apart. Reliability was fair for the SAMISS overall (κ = 0.39, CI(95) 0.29-0.49, P < 0.01), but was higher for the substance abuse component compared to the mental illness component. Reliability for the IHDS between counsellors and nurses was slight (κ = 0.11, CI(95) 0.00-0.27, P < 0.02). Counsellors tended not to miss symptoms, and detected symptoms more often than nurses for the both the SAMISS and IHDS. Strategies to improve the ability of primary healthcare providers to screen for neurocognitive disorders as well as avoiding over-detection of mental illness and substance abuse symptoms need to be developed and implemented for the primary healthcare setting.

Investigating the association between infertility and psychological distress using Australian Longitudinal Study on Women's Health (ALSWH).

Infertility affects millions of people globally. Although an estimated 1 in 6 couples in Australia are unable to conceive without medical intervention, little is known about the mental health impacts of infertility. This study investigated how infertility impacts the mental health of women. The study used nationally representative Australian Longitudinal Study on Women's Health (ALSWH) data. We analysed data from survey periods 2-8 conducted every three years between 2000 and 2018 for 6582 women born in 1973-78. We used a Generalised Equation Modelling (GEE) method to investigate the association of primary, secondary and resolved fertility status and psychological distress over time. Multiple measures were used to measure psychological distress: the (1) the mental health index subscale of the 36-item short form survey (SF-36), (2) the Center for Epidemiological Studies Depression Scale (CESD-10), (3) the Goldberg Anxiety and Depression Scale (GADanx) anxiety subscale; and a (4) composite psychological distress variable. About a third (30%) of women reported infertility at any of the survey rounds; a steady increase over 18 years from 1.7% at round 2 to 19.3% at round 8. Half of the women reporting primary or secondary infertility reported psychological distress, with the odds of having psychological distress was higher in women reporting primary (odds ratio (OR) 1.24, 95% confidence interval (CI) 1.06-1.45), secondary (OR 1.27, 95% CI 1.10-1.46) or resolved infertility (OR 1.15, 95% CI 1.05-1.26) compared to women reporting normal fertility status. Women with partners, underweight or higher BMI, smoking, and high-risk alcohol use had higher odds of psychological distress, whereas women in paid work had significantly lower odds of psychological distress (p < 0.001). Diabetes, high blood pressure, asthma, and other chronic physical illness were independently associated with higher odds of psychological distress. Infertility has a significant impact on mental health even after it is resolved. Frequent mental health assessment and a holistic approach to address the lifestyle factors should be undertaken during the treatment of infertility.

Active inclusion of people living with dementia in planning for dementia care and services in low- and middle-income countries.

Involving people living with dementia in service design and planning has become more common in high-income countries. It remains rare in low- and middle-income countries where two-thirds of the world's people with dementia live. In this commentary article, we explore the barriers to inclusion of people living with dementia in planning in low- and middle-income countries and make a case for the inclusion of people living with dementia in care and service planning. We suggest how this can be done at individual, community or national and state level using the following principles: 1) respecting the rights of people living with dementia to self-determination; 2) valuing people living with dementia's unique understanding of dementia; 3) creating a culture of active inclusion which creates a space for people living with dementia to participate and 4) ensuring appropriate accommodations are in place to maximise participation.

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.