Table 2.

Themes and synthesized findings

Findings	Synthetized findings	Themes
The higher dependency of patients with Alzheimer’s disease (AD) or mild cognitive impairment (MCI) than patients with other chronic diseases on caregivers for activities of daily living (ADL) was associated with caregivers’ higher scores on the Perceived Stress Scale [40] Caregiver’s burden in providing dementia care positively correlated with their psychological distress and PwD’s cognitive impairment and inability to perform ADL functions [56] The burden of caregivers of PwD is not specific to India, but global [36] Family caregivers (FCGs) reported feeling distressed, overwhelmed, and frustrated with caregiving [49]	Caring for people with dementia (PwD) is associated with high degree of burden and perceived stress among FCGs	Navigating the dual realities of caregiving: challenges and rewards for FCGs of PwD in India
Caregivers of PwD with higher levels of behavioral and psychological symptoms (BPSD) reported higher levels of burden than caregivers of PwD with lower levels of BPSD. Caregivers generally reported physical and emotional burn-out [26] Poor quality of life arises from caring for a loved one who has dementia [28] Behavioral symptoms are common and cause significant distress to PwD and their caregivers [49], and they can predict caregiver burden in AD [48] Major sources of strain for caregivers were PwD’s behavioral problems and incontinence. Most caregivers reported significant deterioration in their mental health, and one committed suicide following their spouse’s death [54] The severity and frequency of neuropsychiatric symptoms (NPS) differed significantly between individuals with normal cognition, MCI and PwD and significantly predicted caregivers’ distress [57] PwD was generally isolated by the family, as they feared how others would react to the condition [16]	PwD’s behavioral problems are a major cause of caregivers’ stress, burden and stigma
Caregivers of male (vs. female) patients reported a higher burden. The female (vs. male) caregivers perceived a higher burden on physical and mental health, and older caregivers perceived a higher burden from caregiving routine and spouse-related issues [52] The final change was that a positive aspect of caregiving was considered as an outcome rather than a secondary intrapsychic strain [35] … Caregiving as a process is not always associated with only negative consequences. Many caregivers do experience positive aspects of the caregiving experience [45]	Caregiving for PwD is associated with a high burden, especially when caring for male patients Perceived positive outcomes of caregiving
In India, few people with dementia are seen by doctors [54] According to FCGs and healthcare personnel, lack of time, limited internet access, digital illiteracy and difficulty with reaching rural populations complicate using an online training and support program for dementia in India [41] … a huge population who access the Internet through different languages will be left out, especially in the semiurban and rural areas [46]	Challenges and barriers to accessing information and support are common	Gaps in support for home-based care: challenges faced by FCGs in rural parts of India
Caregivers reported using inappropriate coercive measures (e.g. sedatives, seclusion, environmental restraint, and restricted dietary intake) to protect PwD and manage their behavioral problems and ADL [42] There is a need to evaluate the attitude of FCGs of PwD from time to time and address prevailing negative attitude and support them while they are performing the caregiver role [51]	Caregivers use different coercive measures due to a lack of support with managing behavioral symptoms
Lack of help at home to support PwD, distance from the venue and professional commitments prevented caregivers from participating in a support group [33] Lack of awareness about the existence of the program, difficulty in reaching out to the rural population, accessibility to a computer and Internet connectivity …, were reported as limitations [46]	Caregivers lack practical help at home
Caregivers reported poor social lives and emotional well-being, lack of non-caring activities and job opportunities [41] Social support is the most beneficial coping strategy and was found to be positively correlated with psychological, social and environmental domains of quality of life [53]	Caregivers lack time for their personal lives and non-caring activities
Caregivers were poorly informed about dementia and its prognosis [34] Family caregivers of PwD have less knowledge about the disease condition and they find it difficult to manage problems of toileting, bathing, anger and wandering. The information provided in the booklet was effective in reducing the care burden of caregivers of PwD [58] Per FCG and healthcare personnel, the online training and support program would benefit from using simple language, culturally relevant examples, and an interactive design [41] Although caregivers were interested in an educational program, many had unrealistic expectations (e.g. reversing the condition) [49] All caregivers strongly expressed being insufficiently trained in caregiving [47]	Information about dementia and feasible online training support programs are needed	Addressing the present and future needs of caregivers for PwD in India
Respite care and community support services are needed [43] Locally available, home-based support and low-cost human resources are feasible and accepted by caregivers of PwD and can significantly improve caregivers’ mental health and burden of care [45] Community-based interventions in dementia care might be particularly suitable to address barriers families face in rural areas [44] Caregivers preferred government-owned public health facilities for medical care [47] Person-centered care, cost-effective services, skilled healthcare workers and information on dementia and advanced care needs are needed [49]	Community support, home-based services and respite care can be provided by skilled and knowledgeable healthcare workers
Stronger social support, being married and frequently using avoidance coping were associated with positive caregiving experiences [46] Social support was the most beneficial coping strategy and positively correlated with psychological, social and environmental domains of quality of life [35] A customized meditation program was culturally appropriate (e.g. drew on traditions familiar to participants) and an effective intervention for home-based caregivers of older adults with AD [50]	Culturally adapted coping strategies can combat stress and burden related to caregiving
Caregivers and PwD were open to using a social robot in dementia care. Caregivers perceived that it would help with the challenges of caregiving and positively viewed a future with robots [27] Education about caregivers’ needs and governmental financial support were identified as necessary interventions in the future [35]	Openness to innovative interventions (e.g. using social robots in dementia care and digitalization), education for caregivers and financial support are needed