The support needs of family caregivers of persons with dementia in India: Implications for health services

Abstract

The World Alzheimer’s Report estimates that 4.1 million people in India have dementia. Caregivers of persons with dementia face physical, psychological, social and financial problems related to caring for a person with dementia. Literature on the caregiving experience however is highly specific to the sociocultural context and cannot be generalized. In low and middle income countries much of the caregiving takes place in people’s homes and is provided by family caregivers.

Aim

This study aims to explore the needs and challenges of family caregivers in Chennai, India.

Method

Focus group discussions and in-depth interviews were conducted using a topic guide. Participants were divided based on socio-economic status to ensure homogeneity. An inductive thematic approach was used to analyse and code the data. A total of 19 participants took part in the study.

Results

The results capture the experience of caregivers of persons with dementia in seeking help and accessing treatment. Priority caregiver needs were identified, including the need for sensitised, skilled health workers, information on dementia and advanced care needs and cost effective services.

Conclusion

The findings of this study strongly support the need to strengthen health systems capacity, make the health care services dementia friendly and cost effective. The influence of culture in shaping help seeking was evident in our findings. Interventions for caregivers and persons with dementia need to be developed and tested so they might be made fit for purpose and scaled up. It will be important to identify how these services can be adapted for use in low and middle income country resource setting like India.

Keywords

dementia India low and middle income country (LMIC)caregiver health services qualitative methods

Introduction

Dementia is a chronic debilitating syndrome to those affected by it. The World Alzheimer’s Report estimates that 4.1 million people in India have dementia (Prince, Comas-Herrera, Knapp, Guerchet, & Karagiannidou, 2016). Caregivers of persons with dementia often face physical, psychological, social and financial problems related to caring for a person with dementia (Prince et al., 2012). The strain of caregiving is important to take into account as the period of illness can range from 1 to 20 years (Prince et al., 2016).

Literature on the caregiving experience however is highly specific to the sociocultural context and cannot be generalized. Early literature reviews have identified the need to consider the racial and ethno-cultural background of the participants when understanding the dementia caregiving experience (Aranda & Knight, 1997; Janevic & McConnell, 2001). In high-income countries (HIC), caregiving literature focuses on the involvement of professional carers (nurses, healthcare assistants), institutionalization and bereavement (Prince et al., 2012). This is not representative of the global caregiving experience in view of the fact that over half the world’s caregiver population live in low-income and middle-income countries (LMIC) (Prince et al., 2012). In contrast to HIC, it was found that persons with dementias in LMIC typically lived in large households with extended families, suggesting that much of the care in these countries happened informally at home. In fact, in a 11-site study (Latin America, India and China), no paid care was reported in India and rural China, and paid care in urban China and Latin America was found to be highly informal and unregulated, often consisting of untrained and inexperienced care workers (Prince et al., 2012). This clearly highlights the vital role of the informal, family caregiver for persons with dementia in LMIC.

In India 90% of care for persons with dementia takes place at home, placing the onus of care on a family caregiver (Prince, 2004). When family members are responsible for caregiving their kinship ties may influence the caregiving experience. Kinship ties are strong, and are largely shaped by cultural norms and close family environment (Selin, 2014). One study found the extent of identification with Asian filial piety norms to be a significant source of reduction in role demands among caregivers in Allahabad (Gupta, Pillai, & Petersen, 2012) The same study also found this to be true of immigrant Indian families in Dallas, USA, suggesting that the experience of caregiving in India is unique, and is influenced by variables that are unique to this sociocultural context. In order to be able to address the issue of caregiving strain in India, it is imperative to gain a deeper understanding of the specific needs and challenges caregivers are faced with.

Methodology

Aim

This study aims to explore the needs of family caregivers in Chennai, India. The results of this study will be used to inform and develop services for dementia that are appropriate for the Indian context and maybe adapted to other LMIC settings.

Study setting

The DEMCARES unit at the Schizophrenia Research Foundation, Chennai, conducted the study. The city has a population of about eight million. Tamil is the local language, although many residents are bilingual and speak English as well. The literacy rate in the city is high compared to other states in the country at around 90% (Census of India, 2011).

Healthcare is dominated by the private sector and is therefore expensive. The country has fewer social security schemes, most health care expenditure is out of pocket and can be as high as 80% of a family’s income (Prince, 2004). Health care services for dementia in Chennai reflect the situation in India where services are limited at best (Alzheimer's and Related Disorders Society of India, 2010).

Study sample

Caregivers attending the Dementia care in SCARF (DEMCARES) out-patient facility were invited to participate in the study. Purposive sampling was used to group caregivers based on socio-economic status for homogeneity. Household monthly income was used to determine socio-economic status of the caregiver. The inclusion criteria

The participant must be a family caregiver of a person with dementia and over the age of 18.

The person with dementia should have received a confirmed diagnosis of dementia from a neurologist or psychiatrist.

There were a total of 19 participants. The sample had a higher number of women compared to men. Nearly half the group had been educated until the postgraduate level.

Socio-demographic details of the participants can be found in Table 1.

Table 1.

Socio-demographic details of participants.

Variable	Mean, n	SD, %
Age	51.63 years	12.35 years
Gender
Male	8	42.10%
Female	11	57.89%
Education^a
10 std	4	21.05%
Undergraduate	5	26.31%
Postgraduate	9	47.36%
Employment status
Employed	8	42.10%
Unemployed	4	21.05%
Homemaker	4	21.05%
Retired	3	15.78%
Monthly income^b
$2,000 and above	7	36.84%
$1,200–$1,999	3	15.78%
$400–$1,199	2	10.57%
Less than $399	5	26.31%
Relation to PwD
Spouse	5	26.31%
Offspring	11	57.89%
Other	3	15.78%
Years since diagnosis	4.45 years	3.71 years
Caregiving duration
Upto 3 years	10	52.63%
Upto 5 years	4	21.05%
More than 5 years	5	26.31%
Paid help^b
Yes	7	36.84%
No	10	63.18%

One participant’s data not available.

Two participants’ data not available.

Study procedure

Two focus group discussions (FGDs) and five in-depth interviews were conducted. A qualitative approach was chosen as this will help explore any needs that were unique to caregivers from a LMIC setting such as ours. FGDs were chosen to understand commonalities and differences among participants, as well as the extent of consensus on emerging themes. However in-depth interviews were chosen to represent caregivers from lower socio-economic backgrounds, as even with repeated attempts participants from lower socio-economic group did not attend the group discussions. A topic guide was used to facilitate the FGDs and the in-depth interviews. Questions included ‘What difficulties do you face while caring for your loved one?’, 'What services would help you care for your loved one better?’. Researchers involved in data collection and analysis were from the local culture and fluent in both Tamil and English. One researcher was present during all the data collection including FGDs and in-depth interviews to ensure context and meaning were not lost in the analysis.

Focus group discussions

The FGDs comprised of participants from middle to upper socio-economic backgrounds. Separate FGDs were conducted for men and women, as the researchers felt some aspects of caregiving, such as personal hygiene and cleanliness might be sensitive for caregivers to discuss in a mixed-gender group. Each session was conducted at the DEMCARES centre for research and training and lasted for about two hours. Participants were fluent in both English and Tamil and used both the languages in their discussion. A researcher trained in qualitative methods facilitated the FGDs to ensure equal participation and control participant biases.

In-depth interviews

In-depth interviews were conducted, as persons from a lower socio-economic background were unable to attend the FGD’s conducted at the centre due to work commitments and being unable to leave the person with dementia unaccompanied at home. Therefore a researcher made visits to the participants homes to conduct the in-depth interviews. The interviews were conducted in Tamil, each lasting about 30–40 minutes. Interviews were conducted until ‘theoretical saturation’ was reached. Saturation in the data was reached when no new themes or codes were found to arise from the data (Guest, Bunce, & Johnson, 2006).

Data analysis

A thematic analysis was conducted to analyse the data, as the study was an exploratory effort into understanding needs and challenges of family caregivers. This method was chosen due to the flexibility it allows in exploring different layers of meaning within the same context. Due to the fact that no prior theoretical model or hypothesis was being tested, and that the analysis was completely data-driven, an inductive approach of analysis was adopted. Figure 1 describes the steps involved in data analysis. In order to arrive at a thematic framework, the six-stage Braun and Clarke (2006) process was implemented upon the data, which is described in detail below.

Figure 1.

Steps in data collection and analysis

Familiarisation: The researchers familiarised themselves with the recordings by listening to each of the audiotapes at least twice before transcription. The recordings were then transcribed and translated by two trained bilingual researchers. No back translations were conducted but the researchers checked the translation against the audio file for accuracy.

Generation of codes: Two researchers using the topic guide as a framework coded the FGD’s transcriptions independently in a systematic fashion across the entire data set. Emerging codes such as ‘caregiving duty’ and ‘health systems strengthening’ were also identified.

Theme identification: The search for main themes resulted in collating the codes into identifiable categories. The researchers gathered all the data from the transcripts, which were relevant to each potential theme for clarity.

Review of themes: The development of a thematic map or framework was arrived at by consensus, by reviewing whether the themes identified in relation to the research question, as well as with each other and the dataset.

Defining themes: The framework was then used to code data from the remaining transcript as well as the in-depth interviews. This process helped define concrete themes, which were relevant across the dataset. No new codes emerged from the interview data that were not already covered by the thematic framework, which allowed for establishing the final thematic framework for this research effort

Reporting: Through the process of reporting, each theme was referenced with quotes and examples from the data transcripts, thereby completing the analytic process.

Ethical issues

The Institutional Ethics Committee at SCARF approved this study. All participants were enrolled in the study upon giving their voluntary consent to take part. No monetary compensation was awarded for participation and all participants were made aware that they could withdraw consent at any time. The final report will be made available to participants upon publication.

Results

The main themes that were derived from the analysis have been categorised into caregiver challenges and needs. Each theme has been discussed in detail below.

Challenges of family caregivers

1. Low knowledge and understanding of dementia

Caregiver knowledge of dementia was low at the time of diagnosis. While caregivers from the high-income group had heard of dementia, caregivers from the lower income group were not familiar with the term. They called the condition as ‘Nyabagham Maradhi’ or forgetting.

FGD: ‘I’m a doctor by profession but even then I couldn’t connect the dots.’

Cognitive deficits like severe memory loss and behaviour change were the most likely cause for the person or family to seek help. Just two caregivers reported decline in activities of daily living (ADL) function as a primary reason for seeking help.

IDI: ‘My father is someone who is very polite, soft-spoken, very patient. And he just changed – 360 degrees. He would act highly irritable, very aggressive.’

Caregivers in both groups also complained about inadequate information provided at the time of diagnosis, specifically about what to expect as dementia progresses. On receiving a diagnosis, caregivers from the upper income group were proactive in finding more information, mainly through information available online. Few caregivers in this group stated needing information on financial and legal matters to plan for the future. In contrast caregivers from the lower income group were still unaware of the repercussions of the illness progression.

IDI: ‘Why he is unable to understand bothers me. If there is any improvement after medication, I will be happy.’

2. Social challenges

Caregivers in all groups report a lack of support and sharing of care responsibilities by family members. This leaves them feeling isolated, and often overwhelmed.

FGD: ‘My brother and sister-in-law actually refused to take care of them.’

Female caregivers from the high socio-economic group and caregivers from a lower socio-economic background more frequently reported family disagreements over care practices, decision-making and care-sharing responsibilities.

IDI: ‘In between we stopped tablets; we had problems in my family. My brother and sister said the difficult behaviour is all because of medicine.’

Perceived and experienced stigma limited disclosing the diagnosis to family and friends. This was almost exclusively found among caregivers in the high-income groups. Some caregivers reported altercations with their neighbours and have had to change residences.

FGD: ‘The neighbours objected and I have fought with them and had to move. It’s become strained.’

However two caregivers from the higher income group mentioned neighbours helping the family by keeping a watch on the person with dementia when needed.

Social and professional lives of caregivers are impacted by their caregiving roles. Lifestyle changes in both groups owing to prioritising care responsibilities, resulted in the curtailment of social interactions, leaving little opportunity for recreation and respite. While working caregivers in both groups cited challenges such as needing to take time off work, having a flexible work schedule or completely giving up their careers to meet caregiving responsibilities.

FGD: ‘We have no life at all. No social life at all. I cannot go anywhere because he used to cling on to me. Even if I go out to the next room, he’ll ask me, where are you, where are you?’

3. Emotional strain of caregiving

Caregivers reported a personal loss due to the feeling of being disconnected from the persons with dementia they were caring for. Female caregivers from the high-income group reported this more frequently than their male counterparts.

FGD: ‘She’s been living with me for 20 years and she suddenly doesn’t know who I am. I’m just another person.’

Caregivers also reported behaviour change in the person with dementia as an important cause for emotional strain. Caregivers mentioned feeling anger, shame, distress or embarrassment due to the behaviour exhibited by the persons with dementia. This was mentioned more frequently in caregivers from the high-income group. One female caregiver mentioned seeking out professional help for her own depression caused by the changes in behaviour in the person with dementia she was caring for.

FGD: ‘It becomes so embarrassing. You know the people in the neighbourhood, they don’t make a big deal about it but it does become embarrassing.’

4. Challenges in providing and managing care

Managing challenging behaviour is a huge contributing factor to caregiver strain in both groups. Aggression, repetitive behaviour, self-harm, wandering and disinhibition were the most cited problematic behaviours. Managing risks due to challenging behaviour required caregivers being constantly vigilant, leaving them anxious and mentally exhausted.

FGD: ‘Now, she (Person with dementia) puts everything in her mouth; blade, glass pieces, naphthalene balls, mosquito repellent cream, anything at all. How much can you hide? With a child, you can child proof the house. With an adult, what can you do?’

FGD: ‘He used to go to temples, throw garbage in yagyas (holy fire). They (temple goers) said if you people are not taking care of him, we will complain to police.’

Caregivers were also distressed by difficulties in feeding or refusal to eat. To a lesser degree, both the groups mentioned poor medication adherence, incontinence, mobility difficulties, and sleep disturbances as problematic behaviours.

IDI: ‘I used to be tensed, I used to cry. He will not listen to anyone. He would sit quiet without eating for 3 or 4 days.’

Needs of family caregivers

1. Building health system capacity

Need for trained staff and person centred care

Caregivers were unanimous in that caring for a person with dementia requires good understanding of the illness and a specific skill set. Appropriate training for health-care professional is top priority on their list of needs. Caregivers mainly from the high-income group, report feeling discouraged from their experiences accessing care from private tertiary health facilities and home care services. An inadequate understanding of dementia, coupled with insensitivity of health care staff has led to unpleasant experiences for families.

FGD: ‘I am like, in a situation where I dread hospitals because I know he will be laughed at. They laugh. People just simply laugh at him. And it’s not a very nice feeling.’

b. Need for dementia specific health care facilities

Caregivers from the high-income group were vocal about the dearth of dementia specific services. In contrast caregivers from the lower socio-economic group were less aware of what services they might have been able to access. Female caregivers from the high-income group mentioned planning and organising care activities such as arranging doctors’ appointments; organising laboratory tests and co-ordinating with a paid caregiver as being very stressful. The lack of regulations has in certain instances allowed for cases of neglect and in some, even abuse, particularly from home nurses and attenders. These experiences have left caregivers feeling distrustful of specialist services and confused about what further options for management and treatment might exist.

FGD: ‘When we had all gone out, he (hired caretaker) had stuffed my father’s mouth with a cloth to stop him from repeating his words.’

In contrast, caregivers from the lower socio-economic group found providing care for the person with dementia more stressful. Caregivers from this group provide all the care needed by themselves, in addition to the day-to-day running of the household, as they are often unable to afford paid for help.

IDI: ‘I bathe him, I give food on time, asking him what he wants to drink, give medicines on time. First he used to wash after going to toilet himself, then in between he did not know how to wash.’

2. Financial support and cost-effective services

Financial constraints are a major source of strain for caregivers from a lower socio economic status. They reported the need to sell assets in order to meet financial needs and the implications this had on health services accessed, medication and nutritional status of the family. In contrast caregivers from the high-income group stated being comfortable in their present situation, but were weary of future costs as the illness progresses.

IDI: ‘What should I say? I have to buy medicine, tablets, I have to pay the rent, have to pay the electricity bill; I have to do all of this within this small amount.’

Discussion

The study focuses on the needs and challenges of dementia caregivers in an urban centre in India. It contributes to the existing caregiving literature through its findings on the mismatch between the perceived needs of the caregivers and the service being provided for them. This finding has implications for service development in India and other LMICs.

Culture and caregiving

The influence of culture in shaping help seeking was evident in our findings. Severe memory loss and behaviour change were common reasons for seeking help. In the Indian context, as support from the family as well domestic help are very common, it is possible that loss in ADL function is not identified easily as in other cultures where the person is responsible for their daily tasks. It is also true that the elderly in India are somewhat overprotected and are not allowed to function independently by concerned family members. This results in a delayed help seeking and illness diagnosis, as has been the finding in other studies (Narayan et al., 2015).

Moreover, caregiving is more readily viewed as duty towards a loved one, unlike individualistic, western care models that encourage professional services like care homes (Narayan et al., 2015). A recent study has examined how the dependence on only family networks in the provision of care can be associated with increased mortality for person with dementia (Santini et al., 2015). Changing social networks in LMIC countries towards patterns that integrate the wider community and support structures will have major implications for service planning and provision in this context (George, 2010; Xiao et al., 2014). It is important for service providers to have an integrated approach, wherein medico-social interventions that will support families to provide care to their loved ones are developed.

Dementia service development

The study explored caregiver needs that are crucial to effective management of person with dementia. These include: (a) sensitised and skilled professional health workers, (b) accessible information on dementia and advanced care needs, (c) development of dementia services, particularly non pharmacological interventions and support services for caregivers and (d) ensuring these services are cost effective. In contrast to the West, the priority needs of caregivers here are primarily those of service development rather than psycho-educational (Ducharme et al., 2014). The lack of these facilities has restricted the treatment options to mainly pharmacological management. LMICs often lack policies and guidelines that regulate services for persons with dementia. Even if there are guidelines, regular supervision and monitoring by competent agencies do not exist. This may have allowed for neglect and in some cases, even abuse of persons with dementia. Other studies have shown that the deficit in mental health work force in LMICs contributes to the inability to provide comprehensive, quality care to the population (Bruckner et al., 2011). This study has identified a lack of awareness and skill among health care professionals including doctors, nurses and nurse assistants as a significant issue for the caregivers. Previous studies have found a lack of structured training for the identification and management of dementia among health care professionals (Prince, 2004). This study has highlighted the impact of this poor training on the caregivers. Building capacity in the workforce and developing specialist dementia services can potentially improve caregiver strain.

It must be highlighted that in families from a low socio-economic background, the primary caregiver usually shoulders a disproportionate amount of the caregiving responsibilities. Moreover, these individuals have fewer resources to access dementia information and services, which further complicates their situation. Studies from other LMIC settings demonstrate that persons with dementia from low socio-economic backgrounds and rural areas are at increased risk of mortality (Chen et al., 2014). There could be several reasons for this statistic. The lack of equity in health service provision, high out-of-pocket costs and near negligible health insurance coverage affects utilisation of services, even when compared to other middle income countries (Albanese et al., 2011). This has implications for the consistency and continuity of care for the person with dementia. The need for cost-effective services is of paramount importance. Given the long period of illness, costs for dementia treatment and management can be extremely burdensome, even pushing some families into poverty ( Ku, Pai, & Shih, 2016).

Dementia services in many HIC countries are better developed, more comprehensive and multidisciplinary in approach (Hallberg et al, 2013). There is a need to identify how these services can be adapted for use and scaled up in a low resource setting like India. Task-sharing, which refers to the process of training non-specialist health care staff in specific skills so they may execute tasks previously delivered by specialists could be a suitable management technique. Task-sharing has been used successfully in India and other LMICs, to deliver interventions such as home based support in dementia and cognitive stimulation therapy (Dias et al., 2008; Raghuraman, Lakshminarayanan, Vaitheswaran, & Rangaswamy, 2017). Examining how a task-sharing approach might help deliver dementia services would be beneficial to all resource-constrained settings.

Limitations

The study was conducted on an urban population in India; therefore the findings might not represent the views of caregivers from rural settings. The needs in such a population could vary significantly, given that they have poorer access to information and health services. Further, a convenience sample was selected from caregivers attending a non-profit dementia clinic run by a non-government organisation (NGO). The views of this sample may not be representative of caregivers that have accessed services from government, private or traditional health services, or those that have not sought help at all.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial supportfor the research, authorship, and/or publication of this article: The Infosys Foundation funds the DEMCARES (Dementia Care in SCARF) unit.

Neha Lamech is the dementia care in SCARF (DEMCARES) project co-ordinator at the Schizophrenia Research Foundation, India. She has a Master’s degree in public health with a background in anthropology. She is interested in global mental health, health service delivery, culture and health and qualitative methods.

Shruti Raghuraman is a second year doctoral student in Clinical Psychology at the University of Nottingham. Her area of research is post-traumatic stress disorder, its diagnosis and rehabilitation across cross-cultural settings. She has a Master’s degree in Developmental Psychopathology from Durham University, UK. She previously gained research and clinical experience in the field of dementia care during her time at the Schizophrenia Research Foundation, Chennai.

Sridhar Vaitheswaran is a consultant old age psychiatrist in Schizophrenia Research Foundation (SCARF). He has set up the Centre for Active Ageing, a day hospital for persons with dementia in Chennai, India. His current research interests are adapting and implementing Cognitive Stimulation Therapy for dementia, developing a tool to measure caregiver experience in dementia and implementing a training programme for health care professionals in dementia care in India.

Thara Rangaswamy is a psychiatrist and a founder member of the Schizophrenia Research Foundation (SCARF) a Collaborating Centre of WHO for Mental Health Research & Training. She has been the director of SCARF for 20 years and is a member of the expert advisory panel to the Director General of WHO, Geneva. She has been championing the cause of psychiatric disability, having completed her PhD on the same subject. She has over 150 scientific papers in peer-reviewed journals.

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