Support groups for family caregivers of persons with dementia in India

Abstract

A caregiver support group was initiated at the Schizophrenia Research Foundation, Chennai, India. The study aimed to evaluate this service for 100 caregivers of persons with dementia, identify the needs met and explore the facilitating factors and barriers for participation. The support group met the information, emotional and counselling needs of caregivers. Trust between members was a key facilitating factor. Lack of help at home to support the person with dementia, distance from the venue and work commitments were barriers to caregiver participation. The study found that support groups fulfil an important need for caregivers by providing information and peer support.

Keywords

caregiver dementia low- and middle-income country psychosocial support group

Introduction

It is estimated that by 2050, 14.3 million Indians will be living with dementia (Anders & Prince, 2010). A large portion of them is cared for by their relatives informally at home with little support from the government or private healthcare services with a treatment gap that exceeds 90% (Dias & Patel, 2009). This is further complicated by the fact that a large proportion of the population remains undiagnosed (the diagnosis rate is estimated at 5%) in the community due to poor awareness and lack of specialized services (Patel & Prince, 2001). This is reflected in a qualitative study that identifies the needs of caregivers as building capacity in existing healthcare systems to identify and provide care for dementia as well as developing cost-effective dementia-specific services in India (Lamech et al., 2019).

Globally, support groups for caregivers of chronic illness like dementia have been widely used to meet their needs. One study has loosely defined support groups as ‘...supportive, rarely standardized interventions, which can be both professionally led or peer led’ (Lauritzen et al., 2015, p. 376). Most support groups combat the isolation and stigma that is often associated with the caregiving role, providing some measure of respite to the caregiver. A recent meta-analysis has shown that support groups are useful to caregivers of persons with dementia and have significant positive effects including improved burden and depression scores (Chien et al., 2011). Even telephonic support sessions have shown improvements in depression scores (Winter & Gitlin, 2007). While most studies evaluating support groups for dementia are from the West, there are studies from Iran (Javadpour et al., 2008) and Taiwan (Chu et al., 2011) showing improved caregiver well-being. In India, support groups have been used for caregivers of people living with stroke (Malini, 2015) and those with mental illnesses (Ponnuchamy et al., 2005). To our knowledge, there are no published studies on evaluating a support group for dementia in India.

The Schizophrenia Research Foundation (SCARF), Chennai, provides services for persons with dementia and their families under the Dementia Care in SCARF (DEMCARES) programme. In January 2016, a caregiver support group was started in response to the need for caregivers, identified by an earlier study (Lamech et al., 2019). The current study aimed to evaluate a support group service for caregivers of persons with dementia in a city in India, to identify the needs met and to explore the key facilitating factors and barriers for the caregivers to participate in the support group.

Setting

Chennai is the capital city of the state of Tamil Nadu in India. The Census of India (2011) report states that the Chennai metropolitan area has a population of about 8.6 million and a literacy rate of almost 90%. The predominant language spoken is Tamil, although many residents are bilingual and also speak English. Services for persons with dementia are limited, and support services for their caregivers are scarce. The support group sessions were held at the Training and Resource Centre located in the centre of the city.

Method of evaluation

The evaluation used observational and qualitative methods. Data were collected from January 2016 to January 2017.

Ethics

The study was approved by the Institutional Ethics Committee of the SCARF.

Sample

The study used a convenience sampling method. Caregivers of persons with dementia from the clinic register were invited to attend the support group on an on-going basis, as and when new clients were registered. A hundred caregivers were contacted over 12 months, of whom 22 caregivers expressed interest and enrolled in the support group.

Setting up the support group

A member of the staff invited participants through phone calls. A short description of what the support group was and how it could benefit the caregiver was communicated. Those who agreed to attend were enrolled in the first session and added to a support groups call list. Every month, new members from the clinic register were invited to participate. All enrolled members were also added to a group created on WhatsApp (a popular and free messaging app) on which they could connect outside the support group meetings. The facilitator prepared the discussion topics, guided the conversation and moderated the group in case of conflicts. The researchers explained the study procedure verbally, and all participants received an information sheet. Only participants who provided informed written consent were enrolled in the study.

Structure of the group

The support group sessions were structured based on the types of support expected by caregivers of persons with dementia (Cuijpers et al., 1996).

Information needs: Many sessions were held to provide information about dementia by invited specialists. Topics included basic nursing care, nutrition, communication, managing challenging behaviour and engaging persons with dementia.

Emotional needs: The caregivers were provided an opportunity to discuss their problems openly, to share their emotional experiences and feel listened to by other participants.

Counselling needs: The caregivers could solve their problems through the advice provided by other participants based on their personal experience.

Normative needs: The caregivers felt validated by the experiences of other participants when they shared the issues they struggled with.

The support group met every month on the fourth Saturday in the afternoon for 2–2.5 hours. The sessions were divided into 2 parts. First, a structured talk or activity lasted for about an hour. This was followed by a discussion between members of the group. The topics for the structured talk delivered by invited specialists were selected from the list requested by the participants at the beginning. The requested topics are outlined in Figure 1. The topics which were most requested were prioritized.

Figure 1.

Sessions requested by caregivers.

Table 1 outlines the sessions conducted and the resource people invited to address the participants. A total number of 11 sessions were conducted over one year.

Table 1.

Support group sessions and resource persons.

No.	Session	Resource person
1	Introduction	Group facilitator
2	Sharing caregiving stories	Group facilitator
3	Basic nursing care for a person with dementia	Mental health nurse
4	Dementia film	Group facilitator
5	Eating and drinking: nutrition in dementia	Mental health nurse
6	Managing challenging behaviour	Old age psychiatrist
7	Communication and dementia	Psychologist & group facilitator
8	Sharing self-care strategies	Group facilitator
9	Engaging the person with dementia – Cognitive stimulation therapy	Psychologist
10	Film on the journey of caregiving	Group facilitator
11	Relaxation and yoga	Yoga trainer

The second half of the session gave caregivers the space to provide emotional, counselling and normative support to each other. The participants did not have to pay to attend the support group.

Data collection

Socio-demographics and caregiver information

All participants were requested to complete an enrolment form collecting socio-demographic information along with information on caregiver expectations and information needs from the support group programme.

Session reports

An observer from the DEMCARES team was present at each session and maintained structured reports. Information on how the session was received and the challenges faced were recorded. Also, the facilitator maintained separate reports of each session and documented topics for discussion, issues to explore and general observations on the group dynamics. The observer and the facilitator would meet to debrief after the session to discuss changes that could be made to the structure and content of the group for the next meeting. In this way, attempts were made for the sessions to be continually improved.

Feedback

Feedback on the support group was collected three times from the participants as described below.

Feedback was obtained at the end of each session and was documented in the observer and facilitator reports on an on-going basis.

After 6 months, a telephonic survey was conducted to collect feedback from clients who were unable to attend any of the groups. The focus of this survey was to collect feedback on barriers in attending support groups. Seventy-eight caregivers were contacted of whom 30 caregivers participated in giving their feedback. The caregivers were asked the following questions:

•

Is there a reason why you did not attend any of the support group sessions?

•

What are the current challenges you are facing in caring for your loved one?

After 12 months, the caregivers who had attended at least 2 sessions were invited to a session to provide feedback on their experience of attending the support groups. A semi-structured topic guide was used to collect feedback, and the discussion was recorded for analysis. The topic guide included questions to understand the caregiver experience, their motivation to attend the group, factors that facilitated their attendance and barriers to attending the group regularly. Of the 22 enrolled caregivers, six caregivers agreed to participate in the final feedback session.

Data analysis

Data from the socio-demographic forms filled out by the 22 caregivers who enrolled were collated, and descriptive statistical analysis was carried out to understand the profile of the attendees. The phone survey responses were noted down verbatim and coded by a researcher to analyse the frequency of responses to the survey questions. The feedback sessions attended by six participants were recorded and transcribed. Two researchers coded the transcriptions separately, and inductive thematic analysis was carried out using the topic guide to create a coding framework. The conceptual framework to analyse the needs met by the support group was based on the caregiver needs as outlined by Cuijpers et al. (1996).

Results

Socio-demographics

Twenty-two caregivers enrolled for the support group over the course of a year. Socio-demographic information was collected on enrolment and shown in Table 2 below. The mean age of the participants was 56.5 years (SD = 9.9) with a mean age of the persons with dementia they cared for being 78.8 years (SD = 16.6). Most participants were women (18; 81.8%) and were married (21; 95.5%). On average about eight caregivers (mean 7.7; SD ± 2.4) attended each support group session.

Table 2.

Socio-demographic information of participants.

Characteristic		N (%)
Employment status	Employed	4 (18.2)
	Retired	7 (31.8)
	Homemaker	9 (40.9)
	Unemployed	2 (9.1)
Monthly income (in USD)^a	75–299	3 (13.6)
	300–899	5 (22.7)
	900–1499	5 (22.7)
	1500–2999	1 (4.5)
	>3000	5 (22.7)
Education level	Undergraduate	15 (68.2)
Education level	Postgraduate	7 (31.8)
Living situation^b	With PwD	19 (86.2)
Living situation^b	Away from PwD	2 (9.5)
Availability of paid help	Present	9 (40.9)
Availability of paid help	Absent	13 (59.1)

PwD: people with dementia.

^aData not available for three participants.

^bData not available for one participant.

Needs met by the support group

The caregivers mainly requested information about dementia and about managing practical issues in caring for someone with dementia. Caregivers appreciated the variety of topics covered through the support group sessions and had been particularly responsive to information sessions led by the invited specialists.

“...the specialized knowledge...is also very helpful in the support group, otherwise you are just...fumbling around.”

The experiences of others provided the opportunity for caregivers to gain a practical understanding of specific care issues and use this knowledge when similar situations arose in their interactions with their loved ones. For example, one caregiver shared his experience of taking care of his father’s personal hygiene and how listening to another caregiver helped him.

“At that time, I said, my God, this (man) is sharing something so personal, and then I had to do the same thing for my father, so it helped me when I heard about this man (cries)… So, this is very useful.”

Caregivers felt relieved to have space where they could vent their emotions. They felt ‘understood and supported’ by others.

“So, this was the place I could vent out. I tell you people about my feelings. I was depressed; I was angry; I was scared. You will console and support me.”

Facilitating factors

The primary facilitating factor mentioned by all caregivers was the ‘trust’ between the members of the group. The caregivers were not afraid of judgement from other members of the group and valued having the freedom to express themselves.

“We can’t discuss even with our family. We feel so secure and safe to talk anything over here.”

Although they valued the emotional support received from the group, the caregivers stated that they felt justified to take time away from looking after the person with dementia only if it helped them gain knowledge.

“… (If) some speaker...is giving an interesting talk, we come… (Otherwise, if) we are talking about ourselves, (though) it is interesting, we feel (a) little lethargic.”

Barriers to access

The most cited barrier from both the telephonic survey and the feedback sessions was that the caregivers could not leave the person with dementia at home without adequate support for the duration of the support group meetings. This was an issue for both participants who were attending the group regularly as well as those who did not.

“Many people don’t have the support to look after persons with dementia when they come here.”

The logistical barriers such as distance to the support group venue and work commitments were mentioned. Many caregivers lived far from the venue, some from different cities and travelled only to seek treatment. They were therefore unable to attend monthly meetings.

“Lot of people are working and sometimes they can’t break the schedule and attend the session.”

Discussion

Support groups can meet various, often complex needs of caregivers. This service evaluation found that the support group was able to meet the information needs of caregivers of persons with dementia. Other low- and middle-income country countries have demonstrated similar models that have successfully provided ‘educative’ self-support for caregivers of persons with dementia (Javadpour et al., 2008). In our study, by increasing access to experts in the field, caregivers were able to receive information on varied topics and qualitatively reported increased competence in providing care. As most care for persons with dementia in low- and middle-income countries takes place at home, family caregivers become frontline care providers and compensate for the lack of formal healthcare support system. A forum-like support group in this context provides a space to gain specialized knowledge that can equip caregivers to become more able and confident care providers. This need for specialized dementia knowledge and information on support services is reflected in the findings from a recent study from India (Lamech et al., 2019).

Members also mentioned the emotional benefits of attending the support group. Caregivers reported feeling supported through sharing personal experiences and having the space to vent positive and negative emotions. Caregivers emphasized feeling understood by other caregivers in the group when their family members sometimes failed to understand them. This has also been reflected in the findings of a systematic review by Lauritzen et al. (2015), which found that family caregivers of persons with dementia felt supported through sharing and forming networks with other members in the group. We found that caregivers used the virtual platform of ‘WhatsApp’ to continue to encourage and support one another outside the support group sessions.

The study also highlighted several barriers to utilising this support group service. Some caregivers stopped attending the group after a few sessions. The caregivers who did not attend reported that they felt the needs of the person they cared for was at a stage of the illness that could not be addressed through the support group. They reported the need for more information and discussion on topics such as palliative care, chronic pain management or physical health complications, resulting from advanced dementia. Other studies have reported care services not meeting their needs, as a reason for low attendance in caregiver support groups (Van Mierlo et al., 2010). The phone survey conducted with the non-attenders reflected barriers such as distance from the support group venue and the lack of home support. Nearly half the caregivers in the sample (49.9%) had incomes that exceeded USD 900. Although caregivers did not need to pay money to attend the group, they reported that they were unable to leave the persons with dementia at home without having an alternate caregiver present or not being able to employ a formal caregiver. Only 9 (40.9%) members of the group had paid help available to care for the persons with dementia in their absence.

Time available to attend the support group might also be a factor as the majority (13; 59.1%) of the participants who attended were either retired, unemployed or homemakers who were not currently holding a full-time job. Employed caregivers reported through the telephonic survey that they found it difficult to attend the support group. This has been reflected in another study from India by Ponnuchamy et al. (2005) which found most caregivers for persons with varied mental illnesses attending a support group were retired. Despite these barriers, the attendance of the group was found to be similar to support groups in the West, which report an average of 8–10 members per session (Huis in het Veld et al., 2015).

Conclusion

The findings from this study contribute to the understanding and replication of support groups in other low- and middle-income settings such as India, where dementia services are limited. Recommendations on starting a support group in similar context based on our experience are presented in Figure 2.

Figure 2.

Recommendations for starting a support group for caregivers of persons with dementia in a resource poor setting.

Limitations and future directions

No quantitative outcomes were used in this service evaluation. Using validated caregiver assessments and tools would have strengthened the findings of the study. Low participation from the caregivers that had enrolled made it difficult to collect representative caregiver feedback data. The demographic profile of non-attendees was not available. This would have provided a complete picture of the caregiver group and enabled us to explain some of the findings from this evaluation. This will also help understand additional barriers such as financial issues, stigma, lack of awareness, etc.

Systematic reviews on support groups have pointed to a lack of data on outcomes examining decision-making confidence, self-efficacy and quality of life (Huis in het Veld et al., 2015). It will be useful to measure the effectiveness of such groups by broadening our understanding of the ‘purpose’ of a caregiver support group. Future studies should be conducted to explore changes in knowledge and confidence in caring for a person with dementia, in addition to clinical measures evaluating caregiver mental health. Making this service more accessible through smaller local support groups and the use of technologies with real-time videoconferencing facilities such as Skype could help overcome some of the logistical barriers faced in low- and middle-income contexts.

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) received no financial support for the research, authorship and/or publication of this article.

ORCID iD

Sridhar Vaitheswaran

Neha Lamech is currently pursuing an MA in mental health social work from the University of York. She was the project coordinator at DEMCARES, where she developed services and evaluated projects. She has a master’s degree in Public Health. She is interested in global mental health, health service delivery, culture and health and qualitative methods.

Monisha Lakshminarayanan is a psychologist at DEMCARES and is currently involved in adapting cognitive stimulation therapy, validating assessments, training caregivers and professionals in delivering interventions and improving quality of care for persons with dementia. Her interests include person-centred approaches to care, culturally relevant interventions and alternative non-pharmacological therapies.

Sridhar Vaitheswaran is a consultant old age psychiatrist and Assistant Director in the Schizophrenia Research Foundation (SCARF) and Dementia Care in SCARF (DEMCARES). He 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 interventions for persons with dementia and their caregivers in India.

Sujit John is a postgraduate in psychology from the University of Madras and is currently the Joint Director of the Schizophrenia Research Foundation, India. His research interests include schizophrenia, community mental health, use of technology in service delivery, elderly mental health and suicide. He has co-authored several research publications and reports on these topics.

Thara Rangaswamy is a psychiatrist and a founder member of the Schizophrenia Research Foundation (SCARF), a collaborating centre of the WHO for Mental Health Research & Training. She had been the Director of the SCARF for 20 years and now is the Vice-Chair of the Management Board. She is a member of the expert advisory panel to the Director General of the 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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