Mixed methods implementation research of cognitive stimulation therapy (CST) for dementia in low and middle-income countries: study protocol for Brazil, India and Tanzania (CST-International)

INTRODUCTION In low/middle-income countries (LMICs), the prevalence of people diagnosed with dementia is expected to increase substantially and treatment options are limited, with acetylcholinesterase inhibitors not used as frequently as in high-income countries (HICs). Cognitive stimulation therapy (CST) is a group-based, brief, non-pharmacological intervention for people with dementia that significantly improves cognition and quality of life in clinical trials and is cost-effective in HIC. However, its implementation in other countries is less researched. This protocol describes CST-International; an implementation research study of CST. The aim of this research is to develop, test, refine and disseminate implementation strategies for CST for people with mild to moderate dementia in three LMICs: Brazil (upper middle-income), India (lower middle-income) and Tanzania (low-income). METHODS AND ANALYSIS Four overlapping phases: (1) exploration of barriers to implementation in each country using meetings with stakeholders, including clinicians, policymakers, people with dementia and their families; (2) development of implementation plans for each country; (3) evaluation of implementation plans using a study of CST in each country (n=50, total n=150). Outcomes will include adherence, attendance, acceptability and attrition, agreed parameters of success, outcomes (cognition, quality of life, activities of daily living) and cost/affordability; (4) refinement and dissemination of implementation strategies, enabling ongoing pathways to practice which address barriers and facilitators to implementation. ETHICS AND DISSEMINATION Ethical approval has been granted for each country. There are no documented adverse effects associated with CST and data held will be in accordance with relevant legislation. Train the trainer models will be developed to increase CST provision in each country and policymakers/governmental bodies will be continually engaged with to aid successful implementation. Findings will be disseminated at conferences, in peer-reviewed articles and newsletters, in collaboration with Alzheimer's Disease International, and via ongoing engagement with key policymakers

Community mental health in India: A rethink

<p>Abstract</p> <p>Background</p> <p>Community care of the chronic mentally ill has always been prevalent in India, largely due to family involvement and unavailability of institutions. In the 80s, a few mental health clinics became operational in some parts of the country. The Schizophrenia Research Foundation (SCARF), an NGO in Chennai had established a community clinic in 1989 in Thiruporur, which was functional till 1999. During this period various programmes such as training of the primary health center staff, setting up a referral system, setting up of a Citizen's Group, and self-employment schemes were initiated. It was decided to begin a follow up in 2005 to determine the present status of the schemes as well as the current status of the patients registered at the clinic. This we believed would lead to pointers to help evolve future community based programmes.</p> <p>Methods</p> <p>One hundred and eighty five patients with chronic mental illness were followed up and their present treatment status determined using a modified version of the Psychiatric and Personal History Schedule (PPHS). The resources created earlier were assessed and qualitative information was gathered during interviews with patient and families and other stakeholders to identify the reasons behind the sustenance or failure of these initiatives.</p> <p>Results</p> <p>Of the 185 patients followed up, 15% had continued treatment, 35% had stopped treatment, 21% had died, 12% had wandered away from home and 17% were untraceable. Of the patients who had discontinued treatment 25% were asymptomatic while 75% were acutely psychotic.</p> <p>The referral service was used by only 15% of the patients and mental health services provided by the PHC stopped within a year. The Citizen's group was functional for only a year and apart from chicken rearing, all other self-employment schemes were discontinued within a period of 6 months to 3 years.</p> <p>There were multiple factors contributing to the failure, the primary reasons being the limited access and associated expenses entailed in seeking treatment, inadequate knowledge about the illness, lack of support from the family and community and continued dependence by the family on the service provider to provide solutions.</p> <p>Conclusion</p> <p>Community based initiatives in the management of mental disorders however well intentioned will not be sustainable unless the family and the community are involved in the intervention program with support being provided regularly by mental health professionals.</p

The Impact of Coronavirus Disease 2019 on People with and without Severe Mental Illness in Tamil Nadu, India

Background/Objectives: People living with severe mental illness may be more susceptible to infection and stress, leading to relapses or worsening of their mental health. The experiences of people with severe mental illness during the coronavirus disease 2019 (COVID-19) pandemic have seldom been captured. This study set to describe the experience of people with severe mental illness in Tamil Nadu, India, during the COVID-19 pandemic. Methods: Between July and December 2020, 158 age-, gender-, neighborhood-matched case − control pairs from the INTREPID II study completed a survey regarding their experience, worries, and behavioral changes during the pandemic. Their responses were collected by phone during six-monthly check-ins, or in-person at 24-month follow-up appointments. Only the first response for each participant is included in this report. Results: None of our participants reported knowingly having been infected with COVID-19 by the time of the survey. There is no evidence that people with psychoses were disproportionately affected by the pandemic. Unemployment and financial hardship were highly prevalent in both cases and controls. Job-related anxiety and stress were the largest source of worry, followed by worries regarding government decisions and access to mobile phones. Conclusions: The pandemic placed great strain on participants both with and without severe mental illness. The impact of unemployment and financial hardship as a result of COVID-19 requires urgent attention