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

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.

people residing or considering residing in one.Most people prefer intergenerational community care at home.� Contrary to the population as a while, more people who had a parent living in LTC were residing in urban versus rural areas; in qualitative interviews, family carers and healthcare professionals of people with dementia reported having less access to LTC in rural areas, which may be linked to increased financial challenges and limited resources for more specialised care.
� Given the strong preference for care at home over LTC, initiatives are needed to increase community resources for family carers of older adults with unrecognised and undiagnosed conditions such as dementia.Additionally, there should be improved access to LTC for those with fewer financial resources.

| INTRODUCTION
Due to declining birth rates and increasing life expectancies, one in five Indians will be aged 60 years and above by 2050. 1,23][4][5] In 2020, nearly 9 million Indian people were estimated to have dementia, and this is expected to treble by 2040. 6ltigenerational cohabitation or joint family structures are the traditional, primary support network for providing care to older adults in India. 3With modernisation and globalisation, more nuclear family structures are emerging. 7Family carers, usually women, are increasingly balancing caregiving responsibilities with employment, or providing care at a distance due to emigration. 8Carers receiving less help from extended families may be more likely to turn to LTC facilities. 9Hereafter, we will use the term LTC in this paper, to refer to residential care facilities for older adults, as internationally accepted terminology, though in the survey participants were asked about "old age homes" as this descriptor is more commonly used in India.
Agarwal and Bloom 3 estimated that, by 2036, there will be a 34% increase in demand for LTC across India and argue that national policy needs to identify the structural and financial resources to meet this demand.There is currently limited research to guide policymakers in their decision-making. 10The Indian LTC system is fragmented, unregulated, and usually run with untrained staff or unreliable funding. 1,3,7LTC facilities in India include private facilities for middle-class and elite populations, government-and charityfunded facilities for destitute peoples (very poor), and religious facilities (ashrams and temples), usually also for poor people. 11One survey estimated that there were 1176 privately-owned LTC facilities in India, with the highest number in Kerala. 7,12,13Though the frequency of LTC use and characteristics of their residents in India is unknown, it appears that the prevalence in India is less than in Western countries, such as the United Kingdom, where 2.5% of people aged 65 and older lived in care homes in 2021. 14,15 the number of LTC facilities in India grows, we must understand how attitudes towards their use might be shifting. 16We carried out secondary analyses of two data sources to investigate how commonly the Indian population consider and use LTC facilities: (1) The Moving Pictures India project, which aimed to co-produce with key stakeholders simple, culturally appropriate, and easily accessible video resources to provide family carers with the information and skills to better manage dementia at home 17

| MATERIALS & METHODS
We describe below the methods for study 1 (qualitative) and study 2 (quantitative), reporting results of each analysis separately and integrating findings in the discussion.

| Sample and data collection
A secondary analysis was carried out of the qualitative interviews undertaken in the Moving Pictures India project. 17In the original study, face-to-face video interviews were conducted with 19 family carers of people living with dementia and 25 healthcare professionals, using purposive and snowball sampling (Tables 1 and 2) in Bengaluru, India.As guided by Staller, K, 18   RR, a female psychiatric social worker recruited as a research associate, conducted the interviews in presence of a videographer.There were no direct questions in topic guides regarding attitudes to LTC, as the primary objective of the interview focused on exploring the detailed care journey, available resources and care plans.Participants were asked about sources of help they had accessed, any discussions with health professionals about future care needs for the person they care for with dementia, and any plans for palliative care/ end of life care they had made.Health professionals were asked how they navigated discussions about care, including end of life care with families of people with dementia, how families and carers responded, and the interventions and services available in their organisation for people with dementia and their families.They were also asked about stigma.Detailed Interview schedule are in the Supporting Information S1: Appendix.
The interview guide was pilot tested.Participants knew their interviews would be used for film resources and scientific publications, but no interview guide was provided.The researcher set aside their preconceived notions and biases to explore culturally relevant care practices such as role of gender, cost effective care solution and attitude of people about care institutions.Data collection was stopped when data saturation was reached.

| Analysis procedures
AA and AN read all 44 original transcripts to identify sections that were potentially relevant to the research question, which they imported into NVivo, and thematically analysed. 19After initial familiarisation, they inductively coded the data, then met to compare coding frameworks.Following this initial discussion, the team met to discuss emerging themes, having read pre-selected excerpts from the transcripts.The themes and coding frameworks were further refined during these discussions.

| Data analysis
All analyses were conducted using SPSS (Statistical Packages for Social Sciences) version 29.India-level weighting was applied to account for selection probability.We reported actual numbers and weighted percentages to describe the sociodemographic and health characteristics studied for the whole sample and for participants who report having a parent who is alive.We also reported actual numbers to describe (a) the proportion of respondents reporting that their mother or father was living in LTC; and (b) the proportion who reported an intention to move to LTC themselves.As numbers were so small, we omitted weighted percentages for these samples (Table 1).  1 and 2)

3
The transcripts of 16 family carers and 20 professionals were deemed relevant to the current research question and included in the final analysis.7/16 (44%) family carers were women and their mean age was 49.1.15/20 (75%) professionals were women and their mean age was 41.1.For demographic characteristics of interviewees quoted, please see Tables 2 and 3.

| Themes identified
We identified three themes.The first theme, LTC as a last resort, describes how care at home was considered an expression of familial love and the norm for Indian families, with LTC seemingly acceptable only if care at home was deemed "impossible".The second theme, social expectations, describes social stigma around LTC usage.Our third theme, limited availability of LTC, notes the unavailability of facilities in many, especially rural, localities and the financial barriers to use.

| Theme 1: LTC as a last resort
Most participants expressed a strong commitment to providing care at home: Many people ask us to keep a maid or nurse for him, but we tell him that we find happiness in serving him.
We don't let anyone else do things for him.We love to take care of him.
[ [I]nstitution based care there will be very systematic, it will be to definitely improve or prolong the lifespan of a person [to] be taken care because every problem will be observed and then appropriate treatment will be initiated so they are always under the care of a doctor and the team is always available.
[Professional 17: man, Senior Physiotherapist] LTC facilities were generally seen as a last resort for when family carers could no longer manage, for example, due to exhaustion or because they had moved abroad: For the residential care facilities, it comes at the later stage.Residential care is there for the support for the family carers when they have distance, when they're not able to manage their loved ones at home.
[ Here they get happiness, and we can give the happiness to them that's it.
[Carer 14: man, caring for wife] Slowly the family members start losing their patience … And the person who looks after them, becomes frustrated that it [dementia] will not be cured.… After that level, they may need day care and residential care.
[Carer 14: man, caring for wife] Only one respondent cared for a relative who lived in a LTC facility.
Their narrative also highlighted that LTC was only considered because care at home was found to be "impossible": That decision was tough, but we still took it.We took the decision that it is only the best thing for her.They Several participants noted that these views overlapped with expectations that women should be the primary carers in families: There is this stereotype in our society that it is the wife's job to take care of her husband, it is the mother's job to take care of her son, or it is the daughter-in-law's responsibility to take care of her mother-in-law.
[Professional 6: man, Consultant (Psychiatry)] However, there was a suggestion that, with shifts to nuclear families, social stigma surrounding LTC was reducing where in such instances, providing direct care was not a viable option for adult children: Another thing, that has happened in our setup is, parents will be somewhere, and children will be somewhere else.Or any one parent will be there, children will be away.Children will have their own responsibilities.They will also have children.And in this nuclear society, they cannot stay together.I don't say that is wrong.That is not wrong at all.Because they have their own responsibilities, they cannot look after these responsibilities also.
[Carer 14: man, caring for wife] A second professional suggested that day care may be a more affordable option: If there's a day care service centre actually affordable, and is it accessible in the first place, and can they come for thrice a week, or can they come for a month and then not for the next month.
[Professional 1: woman, Psychiatric Social Worker] Professionals also expressed their concerns that there were very few specialised dementia facilities.They further highlighted that there is a limited workforce in the country who are specifically trained in providing dementia care: There is not enough centres which particularly cater to patients with dementias.There are not enough specialized centres which are equipped to understand the kind of cognitive changes that occur which are equipped to also treat the cognitive changes that occur.

| Sample description
Of 73,396 total respondents, most aged between 45 and 54 years, two-thirds came from rural areas.The sample was evenly distributed across income quintiles.Around half were unable to read or write with only one in 10 having received education beyond secondary provision.The most common self-rated health score for all respondents was 'Good' with only 404 respondents reported having a diagnosis of Alzheimer's disease.There were significant levels of nonresponse for three variables of interest: ability to read or write, highest level of education and self-rated health (Table 3).
Of the 73,396 respondents, 18,281 had a parent alive.Over half of these respondents were aged between 45 and 54 years, came from rural areas, despite an even distribution across all income quintiles.
Over two thirds were unable to read or write, with primary level being the most common level of education provision.Of the respondents who had a parent alive, 150 reported that their mother, and 72 that their father, had a diagnosis of Alzheimer's disease.

| Current use of LTC
7798 people reported that their father was alive; in nine cases, their father lived in a LTC facility also known as an old age home in India.
15,819 people reported that their mother was alive; only 16 reported ALBERTS ET AL.
T A B L E 3 Sociodemographic and illness characteristics of LASI sample, for whole population and those who (a) reported having a parent in LTC (b) expressed an interest in moving to LTC. show that family carers benefit from structured support. 25Such in-

| Limitations
Secondary analyses are limited by the inability to influence data collection.Qualitative interviews were only conducted in Bengaluru, a megacity, more economically prosperous than other areas of India and with a largely middle-class sample, so findings are unlikely to be representative of the Indian population, the majority of whom live in rural areas. 28In the quantitative analysis, we did not measure actual care home use, instead estimating it from household respondents' descriptions of their parents' living situation.Further, No answer 947 (1.6) 0 0 a One respondent reported that both their mother and father were living in LTC (Long Term Care).
ALBERTS ET AL.
the living situations of the older people are reported for a population that have children and therefore may not be representative for a population without children.With the stigmas associated with LTC across India, particularly the idea of placing parents in LTC, it could be possible that many respondents inaccurately represented the living arrangements of their parents in the self-report.Lastly, the timing of COVID, occurring between the collection of the quantitative data (LASI) and the qualitative study in 2022, may have influenced individual's views of care homes which were substantially affected by COVID across the world.However, to our knowledge, limited data is available on care homes activities across India, including the potential impact of COVID for us to comment further on this. 29Moreover, as cultural resistance towards LTC homes in India has been well established for over 10 years (see 11 ); it is likely that the pandemic amplified this resistance but did not initiate it.

| CONCLUSIONS
Very few Indian families use or consider LTC due to societal stigma and preference for intergenerational and community care, lack of availability, and financial factors.Our qualitative findings suggest that LTC use may be acceptable in circumstances where families move away or experience high burden, but community care was the prevailing model described.Future social policies should consider how to plan for greater equity in strengthening care at home, supporting care in the community, and bolstering respite and LTC services by making them more accessible, affordable, and within the reach of all Indian families.
and (2) Nationally representative survey data from the Longitudinal Ageing Study in India (LASI).
sample size was planned to ensure sufficient diversity of information-rich cases.Interviews lasted 30-to 90-min and were conducted in English, Hindi, or Kannada, then translated and transcribed into English.All participants gave informed consent to take part.The study was approved by the National Institute of Mental Health and Neurosciences (NIM-HANS) Ethics Committee, Health Ministry's Screening Committee, India (HMSC), Curtin University Human Research Ethics Committee (HREC), and the National Ageing Research Institute (NARI) Research Governance Office.

3 . 1 . 4 |
are looking after her very nicely which I cannot do because in this condition it is almost impossible to take care at home.She needs medical attention daily twice or thrice.They are giving physiotherapy, this and that, and then they have training also.[Carer 18: man, caring for wife] Theme 2: Societal expectations Societal stigma surrounding LTC facilities was evident in most transcripts.To care for one's family was seen as a moral responsibility and expectation for the younger generation, and using LTC facilities as a shirking of their familial duties: Taking care of the person, of their elderly is I think very, what you say, imbibed in our culture and if you are not doing that it stigmatizing, right, you are not taking care of your parents… What will, if I have to leave this person in a long term, you know, care facility what will my relatives, you know, talk about it?[Professional 11: woman, Rehabilitation Professional] And if the children are not in favor of looking after their parents, [we] need to counsel and make him understand that it is their duty to look after the old parents.There are cases where such patients are neglected, are admitted to some hospital or somewhere.It is unfortunate.[Carer 15: woman, Consultant (Clinical Neuropsychology)] vestments will support higher quality, cost-effective care for the ageing Indian population.Despite the strong preference for community care, LTC facilities are likely to rise with ageing populations and a growing Indian middle class.26,27Under the Indian "Maintenance and Welfare of Parents and Senior Citizens Act, 2007, adult children and relatives (legal heirs) are legally obligated to provide financial assistance to family members aged 60 and over, if they are unable to maintain themselves.Future Indian policies should also consider steps to reduce stigmatisation of LTC facilities through governmental schemes that increase both awareness and equity of access for people seeking outsourced support.A future survey on LTC facility residents and their families would be informative to explore their perspectives and inform the development of effective policies and interventions.While none of the interviews discussed concern about the quality of care in LTC, as use increases this will also be an area for policymakers to consider.

.2 | Study 2: Quantitative analysis
urban blocks were randomly selected, from which households were selected.73,396older adults living across all Indian states and union territories were included in the survey, which was primarily intended to measure socio-economic factors and pre-retirement behaviours.A household member aged 45 and above was identified but, as spouses were also invited to take part irrespective of age, a small number of participants were aged below 45.Data were collected in face-to-face interviews.Ethical approvals were obtained from Indian Council of Medical Research (ICMR), Delhi; IRB, International Institute for Population Sciences (IIPS), Mumbai; IRB, Harvard T.H. Chan School of Public Health (HSPH), Boston; IRB, University of Southern California (USC), Los Angeles; IRB, ICMR-National AIDS Research Institute (NARI), Pune; IRB, Regional Geriatric Centres (RGCs); and Ministry of Health and Family Welfare (MoHFW).Written consent was acquired before data collection.Access was granted to analyse the data set, which was stripped of identifiers before being shared with our study team.T A B L E 2 Demographic information for family carers.We reported the sociodemographic characteristics of all respondents -including gender; age category; whether their hometown was classified as urban or rural; MPCE (Monthly per Capita Expenditure, a measure of household consumer expenditure to describe the economic well-being of households in the absence of income data, categorised into five quintiles poorest, poorer, middle, richer and richest); ability to read or write; and highest level of education.We also included measures (all self-reported) of respondents' health scores ranging from excellent to poor and the presence of diagnosed Alzheimer's disease.
Out of the 25 parents in LTC, none had a dementia diagnosis.Of the nine fathers who are currently reported to reside in LTC, the majority were aged 65þ and lived in rural areas.Four were from the lowest or lower income quintiles and one was able to read or write.Of the 16 mothers who are currently reported to reside in LTC, the majority were aged 65þ and lived in urban areas, from middleincome households.All but four were unable to read or write.Future policies in India must thus consider how to best support care at home and in the community, including greater support for family carers, and day care and respite facilities.Whilst much of the evidence base is from high-income countries, there is evidence to 24,23atisation remain.Intergenerational living and community-based care are preferred; these usually deliver better, more cost-effective outcomes for older people living with frailties, including dementia, and are preferred by older people.22,23Interestingly, in Western countries, where care home residency is more common, experimental programmes of intergenerational living are re-emerging.24