Pathways to care for people with dementia in India: an exploratory study using case vignettes

Background: Limited evidence exists on how people living with dementia and their family/unpaid carers navigate care and support in India. Aim: This study used case vignettes to illustrate likely pathways to care for dementia, from receiving a diagnosis to long-term support, in India and to highlight gaps and challenges associated with current care provision for persons living with dementia. Methods: As part of the Strengthening Responses to Dementia in Developing Countries (STRiDE) project, and to contribute to an analysis of dementia care policies and systems in India, case vignettes were used to illustrate the diverse situations that people with dementia and their families may experience when seeking care in the Indian context. Eight hypothetical, but realistic cases of people with dementia were created by a multi-disciplinary team with experience in dementia care in India, to map out the likely care journeys of each case. Results: Investigating eight diverse care trajectories of people living with dementia highlighted important patterns relevant to the Indian context. We identified delays in dementia diagnosis to be attributed to low awareness of dementia among the general public and medical professionals in addition to a critical shortage of specialist services involved in facilitating dementia diagnosis. Post-diagnosis, support was recognized as limited and associated with considerable out-of-pocket (OOP) costs. Families primarily provide long-term care for people with dementia till end of life. Conclusions and Recommendations: Several steps need to be taken in order to improve dementia care in India. Increasing dementia awareness among both medical professionals and general public is essential. Shortages in dementia specialists can be addressed in part through appropriate task shifting. Lastly, more research is needed to develop evidence-based community interventions to support informal care provision for persons with dementia in India

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

Understanding the economics of dementia at the family level in India

The dementia care system in India relies on families of people living with advanced dementias (PLWD) to support their care – either providing it themselves, possibly necessitating foregoing opportunities for paid work, or paying for it from the unorganised care labour sector. The sustainability and quality of India’s dementia care system therefore depends on the extent to which these economic costs are bearable to families. While there is some evidence about the negative consequences of meeting these costs (Narayan et al. 2015), there has been little engagement with what ‘families’ means in this context. This paper critically engages with the implied expectation that both wealth and expenditure – that is, dementia care costs and the resources to meet them - are shared among adult members of Indian families to explore: 1.families’ decision-making around who can and cannot be appropriately called upon to provide different types of care; 2.the extent to which the families of PLWD experience caregiving as individuals or as family units; 3.the methodological implications of this for understanding the economic impact of providing dementia care and the salience of this for positioning dementia as a public health priority. The paper is informed by ongoing analysis of a series of in-depth, qualitative interviews (N=55) with 24 ostensibly low and middle-income family members of people living with moderate or severe dementias in East and South India, in which reports of income or wealth appear to be contradictory, ambiguous, and associated with family members’ understandings of dementia and dementia care

Emotional consequences of caregivers providing unpaid care for persons with dementia in India: a qualitative study

In Indian society, it is often considered the responsibility of children to provide care for their parents as they age. As a result, care for the vast majority of people living with dementia is provided by families at their own homes (ARDSI, 2010). As in other lower resource settings, the absence of an organized formal long-term care system to support persons with dementia and their families is expected to place significant stress on families to provide the best care possible. Since dementia care can require almost full-time availability at home, this has been reported to affect physical and psychological health of caregivers (Srivastava et al., 2016). An understanding of the different components of stress that could arise from care provision is needed to be able to design appropriate interventions to mitigate the distress. We interviewed twenty-four caregivers using semi-structured interviews (N=55). The interviews were conducted remotely with the aid of a series of inductive and emergent topic guides. This paper will explore the emotional consequences of providing unpaid care experienced by these caregivers. It will consider the changes in career and personal goals that caregivers experienced and the impact of this on their understandings of the care they provide

Costing unpaid dementia care in India

Money talks, especially to those tasked with building, maintaining and funding systems for long term care. Demonstrating that unpaid care is not ‘no cost’ care is therefore a key goal for researchers and care advocates and alike. But answers developed to the key question of how unpaid care should be economically valued are not yet sufficient. There is much we don’t know, especially outside the high-income countries that have been the primary focus of research. Along with issues of which direct and indirect costs should be measured (Mattap 2022), are the knottier issues about how care itself and its costs should be conceptualised. In this paper we reflect on the cost of unpaid care for those supporting family members living with moderate or severe dementias in East and South India. Here, the care system relies on families to pay for access to private or subsidised public specialist healthcare, and to provide needed social care, either directly, or indirectly through securing it from the unorganised care labour sector. We present iterative, inductive analysis of a series of in-depth, qualitative interviews (N=56) with 24 low and middle-income family members carried out in 2021. • We outline direct costs that are catastrophic for some families and manageable to others, as well as indirect costs that are not routinely considered in costing studies. • We consider the extent and nature of indirect costs and consider how the distribution of different kinds of care labour (‘hands-on’ care, financial support) within families shapes how indirect costs are recognised, conceptualised, and reported by family members themselves – the would-be participants of any large-scale costing studies. Our findings subsequently make three important contributions. First, they join a growing body of research in highlighting the (re)production of long-term care inequalities. Second, they highlight costs and care inputs that are not often considered in valuations of unpaid care. Finally, they call for greater critical engagement with ostensibly unambiguous components in the unpaid care costing debate: ‘the family’ in family care, the enumeration of caregivers’ hours, and the parity assumed in the cost and value between different caregivers’ hours

Health seeking behaviours and dementia care trajectories in India: a qualitative study

It is estimated that there are 5.29 million people with dementia in India (ARDSI, 2010). Only 10% of persons with dementia ever receive any diagnosis, treatment or care (Martin Prince et al., 2015). A number of factors contribute to this treatment gap, including poor awareness, stigma, and limited availability of services (Alladi and Rajagopalan, 2021). These factors vary significantly across different demographic and geographic regions of the country. As a result, there is a need to understand pathways to dementia care and identify the factors that influence this care-seeking. As part of a wider study examining the costs and consequences of unpaid care in dementia under the Strengthening Responses to Dementia and Developing Countries (STRiDE) project, this paper presents health-seeking behaviours and dementia care trajectories reported by persons with dementia and their families in South and East India. Twenty-four family caregivers of persons with dementia were remotely interviewed in-depth and multiple times via semi-structured interviews (N=55) carried out between March to September 2021. Using Framework Analysis, we explore recognition of initial symptoms, subsequent supports sought and utilization of social care services available. We anticipate post-fieldwork analysis to be completed by February 2022

A qualitative exploration of the economics costs associated with unpaid care for persons with dementia in India

Home-based care provided by families is the cornerstone of dementia care in India, as elsewhere. While very few paid-for care (home- and institution-based) services is available to those who can afford it, there is no coordinated formal long-term care provision. However, limited evidence exists on the economic impact of providing such unpaid care to persons with dementia in India. As part of a wider study examining the costs and consequences of unpaid care in dementia under the Strengthening Responses to Dementia and Developing Countries (STRiDE) project, this paper will explore economic costs and resultant consequences associated with providing care for persons with dementia in South India. A series of remote, inductive in-depth interviews (N=55) were conducted between March and September 2021 with 24 family caregivers of persons with dementia who had accessed services provided by the Alzheimer’s and Related Disorders Society of India, Hyderabad or the National Institute of Mental Health and Neuroscience, Bangalore. Initial assessment suggested caregivers and their families were of low and middle income. Framework Analysis will be conducted to identify financial costs, both direct (out-of-pocket costs such as expenses associated with consultations, investigations, medications) and indirect (e.g. loss of wage), associated with caregiving for dementia in India. This post-fieldwork analysis will be completed by February 2022. The range as well as the nature of these costs will be summarised in order to aid further research that can offer more large-scale quantifiable information on dementia associated caregiving costs

Understanding, experiences and attitudes of dementia in India: a qualitative study

India is the world’s second-most populous country and there are about 5.3 million people with dementia in India. Only one out of ten people living with dementia in India ever gets a diagnosis, care or treatment. There are various obstacles to deliver dementia care and support to people living with dementia and their carers. Furthermore, there is inadequate understanding of dementia in the general public and within the health care professionals. Studies in India indicate that people with dementia experience stigmatisation in society as well as neglect from their families. Social prejudice associated with dementia makes it a challenging experience, in addition, it makes the persons with dementia and carers feel isolated and stigmatised. Focus groups and individual interviews were used to explore perceptions, beliefs and experiences of dementia across a number of stakeholders in India, with an effort to understand stigma towards people with dementia. Participants were recruited in two diverse cities of India (Chennai and Delhi), and were comprised of a range of key stakeholders, including persons with dementia (n = 8), caregivers (n = 19), health care professionals (n = 16) and the general public (n = 15). Following a thematic analysis, we identified three overachieving themes; (1) Poor awareness, (2) Stigma and (3) Barriers to accessing care. These all occurred within the context of socio-cultural beliefs. Whilst each stakeholder group had different experiences of dementia, it was common for all participant groups to use stigmatising language associated with dementia. In many cases, stigmatising beliefs and poor understanding of dementia resulted in poor care. There is an apparent need to raise awareness of dementia in India across all stakeholder groups; the fact that participants were able to self-identify that they had a lacked awareness of the condition may indicate that these groups are receptive to learning more about dementia

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