Table 1.
Characteristics of included studies in the review (N = 27)
| Author(s)/Year/Ref. nr | Title | Study aim | Study design | Data collection methods | Sample, (size), mean age (years) | Study setting | Key findings |
|---|---|---|---|---|---|---|---|
| Anand et.al., 2016, [40] | Perceived caregiver stress in Alzheimer's disease and mild cognitive impairment: A case control study | To evaluate the perceived stress in caregivers of patients with AD and MCI compared to the perceived stress in caregivers of patients with other chronic illness |
Quantitative RCT |
Caregivers were interviewed using PSS. Patients were assessed using The Blessed Activity of Daily Living (ADL), MMSE and CDR. PSS were compared amongst both groups and correlated with severity of illness and ADL of the patients | Caregivers of patients with AD and MCI (n = 31), mean age (69). Caregivers of patients with chronical medical and psychiatric disorders (n = 30), mean age (56) |
Memory clinic of Neurology Department of a tertiary hospital in Northern India/New Delhi (Urban area) |
Caregivers for MCI patients had lower PSS scores than AD caregivers, but both scored significantly higher than caregivers for other chronic disorders. A significant correlation was found between perceived stress and ADL (P < 0.001), indicating that increased ADL dependency in AD/MCI patients was linked to higher PSS scores compared to other chronic disease caregivers |
| Baruah et al., 2020, [41] | Perspectives on Components of an Online Training and Support Program for Dementia Family Caregivers in India: A Focus Group Study | To identify the components and understand the acceptability of an online training and support program for dementia caregivers in India | Qualitative | Three focus group discussions. Two with caregivers of PwD and one with health professionals | Primary caregivers of PwD (n = 13), HCP (n = 10), mean age; caregivers (47), mean age HCP (34,9) | Caregivers attending a geriatric clinic at a tertiary hospital and a non-governmental organization involved in dementia care (ARDSI) in southern India/Bengaluru (Urban area) | Expectations for an online dementia management program varied, including information provision and caregiver support. HCP suggested using simple language, cultural relevance, and mobile-friendly interactive education. Challenges identified by FCGs and HCP included lack of time, difficulty in internet access, lack of digital awareness and difficulty in reaching rural populations |
| Basu et. al., 2022, [26] | Neuropsychiatric symptoms of dementia and caregivers’ burden: a study among Indian Caregivers | To evaluate relationship between neuropsychiatric symptoms of dementia and caregiver burden | Quantitative cross sectional | Dementia care-recipients’ NPS severity, and caregivers’ burden were assessed with NPI | Caregivers of PwD (N = 138), mean age (61) |
A non-governmental organization providing dementia care in eastern India/Kolkata (Urban area) |
Severity of NPS in PwD correlated with caregivers’ burden severity, with 66.6% of caregivers of patients with severe NPS experiencing a higher burden than those with less severe NPS |
| Danivas et al., 2016, [42] | An interpretative phenomenological analysis (IPA) of coercion towards community dwelling older adults with dementia: findings from Mysore studies of natal effects on ageing and health (MYNAH) | To find relevant themes of the lived experience of relatives as caregivers for PwD in view of their use of coercive measures in community setting in South India | Qualitative explorative | Individual interviews | Primary caregivers of PwD (N = 13), mean age (73) |
Caregivers of community dwelling PwD who were identified in an epidemiological survey “Mysore study of Natal effects on Ageing and Health (MYNAH)” in Southern India/Mysore (Urban area) |
Caregivers indicated physical and emotional burn-out, insufficient respite services, and community support. They experienced poor social and emotional health and limited personal activities and job opportunities Caregivers often used coercion methods like misuse of sedatives, seclusion, environmental restraint, and diet restriction. These methods were used to ensure PwD’s safety, management of behavioural issues and ADL |
| Dias et al., 2008, [43] |
The Effectiveness of a Home Care Program for Supporting Caregivers of Persons with Dementia in Developing Countries: A Randomised Controlled Trial from Goa, India |
To develop and evaluate the effectiveness of a home-based intervention in reducing caregiver burden, promoting caregiver mental health and reducing behavioural problems in elderly persons with dementia | Randomized controlled trial (RCT) | Assessments of caregivers: mental health by GHQ, caregiver burden by ZBS, distress due to behavioral disturbances by NPI-D, behavioral problems in the subject by NPI-S and ADL in the elder with dementia by EASI |
Dyads of caregivers and PwD Caregivers—mean age (53) |
Sample from the community in western India/Goa (Rural area) |
In all, 73% dyads completed the trial. The intervention significantly reduced GHQ and NPI-D scores, with non-significant reductions in ZBS, EASI and NPI-S scores. Locally available, low-cost, home-based support is feasible and acceptable for caregivers of PwD, and significantly improve their mental health and care burden |
| Emmatty et al., 2006, [44] | The experience of burden in India: A study of dementia caregivers | To examine the relationship between caring for an elderly and caregivers’ experience of burden |
Quantitative Cross sectional |
Burden was assessed by ZBI. Open-ended questions were asked to map caregivers’ relationship to dementia patient and their caregiving experiences | Caregivers of PwD (N = 30), mean age (45) | Geriatric outpatient clinic of a tertiary hospital in southern India/Bengaluru (Urban area) | Only 30% of cases were in the high burden group. No significant correlation was found between caregiver relationship and burden scores. Extended families experienced less burden than other family types |
| Grover et al., 2017, [45] | Positive Aspects of Caregiving Experience among Caregivers of Patients with Dementia | To assess the positive aspects of caregiving and its correlates among caregivers of patients with dementia |
Quantitative Cross sectional |
SPACE, Coping Checklist, Social Support Questionnaire, WHOQOL-BREF version were used to assess positive aspects of caregiving. Burden Interview Schedule were used to assess caregiver burden | Dyads of primary caregivers and PwD (N = 55), mean age (information not provided) | Psychiatry outpatient of a multispecialty tertiary care hospital in northern India/Chandigarh (Urban area) | The highest mean SPACE scores were for caregiving motivation (2.63), caregiver satisfaction (2.54), and personal gains (2.4). More educated caregivers had significantly lower self-esteem and social caring scores. Greater burden correlated with lower caregiving motivation. Positive caregiving was linked to strong social support, being married, and higher avoidance coping use. Caregiver satisfaction improved their quality of life |
| Gurukartick et al., 2016, [46] | Social Determinants of Dementia and Caregivers’Perspectives in the Field Practice Villages of Rural Health Training Centre, Thiruvennainallur | To explore the family caregivers' perceptions and their support needs | An exploratory mixed-methods study design, where a qualitative method (key informant interview) was followed by a quantitative method (survey) | Vellore Screening Instrument for Dementia‑Informant version (VSID‑I ‑ Tool 2) was used to investigate family caregivers’ perceptions and their support needs | A representative sample of caregivers of PwD (N = 1300), mean age (71) |
Rural health training center, department of community medicine of a medical college and hospital in southern India/Puducherry (Rural area) |
Caregiving impacts caregivers’ personal and professional lives but caregiving is an integral part of Indian culture, and elderly prefer home‑based care. Caregivers preferred government owned public health facility for medical care. However, caregivers feel they lack adequate training |
| Hossien et al., 2017, [47] | Pathways to care among persons with dementia: Study from a tertiary care center | To explore the pathways taken by caregivers of dementia enroute to a tertiary care center and the interactions they had with different health care providers |
Quantitative Cross-sectional |
Semi-structured questionnaire. The Short Explanatory Model Interview (SEMI) |
Purposive sample of caregivers of PwD (N = 35), mean age (39) |
Geriatric clinic at a tertiary hospital in southern India/Bengaluru (Urban area) | Three pathways were identified: I) Neuropsychiatric: consulting a psychiatrist or a neurologist as first contact. 2) General Practitioner and 3) Non-cohesive: seeking various care options due to dissatisfaction. Overall, the caregivers lack information about dementia and its prognosis |
| Hurzuk et al., 2022, [16] | Understanding, experiences and attitudes of dementia in India: A qualitative study | To understand attitudes and perceptions concerning people with dementia residing in India in two metropolitan cities | Qualitative | Focus group discussions | A total of 58 participants took part in six focus group discussions and two individual interviews were conducted with persons with dementia |
Alzheimer’s and Related Disorders Society of India (ARDSI) – a national organization which was the primary gatekeeper in recruiting participants for the focus group discussions. Participants were recruited separately in two metropolitan cities – Chennai (southernmost metropolitan city of India) and Delhi (North India) (Urban area) |
Data from the focus group discussions and interviews revealed three overachieving themes: (1) Poor awareness, (2) Stigma and (3) Barriers to accessing care. All themes occurred within the context of socio-cultural aspects which typically framed discussions |
| Kazhungil et al., 2016, [48] | A comparative study of caregiver burden in late-onset depression and Alzheimer’s disease | To compare the caregiver burden in Late-onset depression (LOD) and AD and to identify factors associated with caregiver burden in LOD |
Quantitative Cross sectional |
Caregiver burden was assessed by the ZBI | Dyads of caregivers and patients with LOD with major depression (N = 25) mean age (47, 67, respectively). Dyads of caregivers and patients with AD (N = 25). Mean age (56, 71 respectively) |
Medical college hospital, southern India/Manjeri (Rural area) |
LOD and AD caregiving burdens are similar. Caregiver burden in AD is predicted by the Behavioral Pathology in Alzheimer’s Disease Scale score, lower income, presence of diabetes, and in-laws as caregivers |
| Lamech et al., 2019, [34] | The support needs of family caregivers of persons with dementia in India: Implications for health services | To explore the needs and challenges of family caregivers in Chennai, India | Qualitative | Focus group discussions and in-depth interviews were conducted using a topic guide | Purposive sample of family caregivers of PwD (N = 19), mean age (52) |
Dementia care unit in SCARF (DEMCARES) out-patient facility in southern India/ Chennai (Urban area) |
The themes highlighted caregivers’ challenges accessing treatment. Identified needs included person-centered care, trained health workers, information on dementia, advanced care needs, and cost-effective services |
| Lamech et al., 2021, [33] | Support groups for family caregivers of persons with dementia in India | To evaluate a support group service for caregivers of PwD; to identify the needs met and to explore the key facilitating factors and barriers for the caregivers to participate in the support group | Qualitative, prospective design | Observations and 11 group discussions conducted over one year | Convenience sample of caregivers attending an on-going support group (N = 22), mean age (56,5) | Dementia care unit in SCARF (DEMCARES) out-patient facility in southern India/Chennai (Urban area) | The support group met caregivers’ information, emotional, and counselling needs, with trust as a key facilitator. Barriers to participation included lack of home support, distance from the venue and work commitments. Support groups provide valuable information and peer support |
| Martis et al., 2022, [28] | Caring burden and quality of life among the caregivers of people living with dementia – a cross-sectional study in Udupi district of Karnataka | To assess the caring burden and QoL among the caregivers of people with dementia, as well as to ascertain the relationship between QoL scores and burden | Quantitative, Descriptive Cross-sectional study | The WHOQOL BREF questionnaire, which has 26 items was used to measure the caregivers’ overall QoL |
Caregivers of PLWD (N = 80) with most of the participants (N = 53) living in rural area Average age 46 ± 12.7 |
Selected hospitals in the Udupi District (Rural area) |
The majority of the participants (73.8%) experienced severe profound burden, while 17.5% experienced moderate to severe burden. The majority (n = 59, 73.8%) of the caregivers experienced severe profound burden, while few (n = 14, 17.5%) caregivers experienced moderate to severe burden. Results demonstrate that there is a significant association between the caregivers’ QoL, and the hours of care given per day to the PLWD |
| Narayan et al., 2015, [49] | Caregiving experiences of family members of persons with dementia in South India | To investigate to which extent the meaning and impact of caregiving are the same across cultures before adapting a family caregiving program model developed in USA | Qualitative | Semi structured interviews with caregivers of PwD based on an interview guide |
FCGs of PwD (N = 30), mean age (51) |
Geropsychiatric clinic at a tertiary hospital in southern India/Bengaluru (Urban area) | Family members knew “caregiving” but could not translate it, contrasting with the West. Dementia understanding was limited. FCGs reported feeling distressed, overwhelmed, and frustrated with caregiving. They were interested in an educational program, but had unrealistic expectations, including reversing the condition. The findings guide caregiver curriculum adaptations for Indian PwD caregivers |
| Natarajan et al., 2022, [27] | Acceptability of Social Robots and Adaptation of Hybrid-Face Robot for Dementia Care in India: A Qualitative Study | To understand the acceptability of social robots and adaptation of the hybrid face robot for dementia care in India | Qualitative | One focus group discussion with caregivers and professionals. In-depth interviews with the dyads | Dyads of PwD and their caregivers (N = 7), health care professionals (N = 2), technical experts in robotics (N = 2), mean age (information not provided) |
Dementia care unit in SCARF (DEMCARES) out-patient facility in southern India/ Chennai (Urban area) |
Three themes emerged: a) Acceptability of robots in dementia Care in India, b) Adaptation of Hybrid-Face robot and c) Future of robots in dementia Care. Caregivers and PwD welcomed social robots in dementia care, viewing them as helpful with caregiving challenges and foreseeing a positive future with robots |
| Pandya, 2019, [50] | Meditation Program Enhances Self-efficacy and Resilience of Home-based Caregivers of Older Adults with Alzheimer's: A Five-year Follow-up Study in Two South Asian Cities | To investigate the impact of a customized meditation program on caregiver burden mitigation and enhancing caregiving self-efficacy and resilience (as core outcomes) of home-based caregivers in Mumbai, India and Kathmandu, Nepal | Quantitative A 5-year follow-up, longitudinal study | ZBI, Revised Caregiving Self-Efficacy Scale, Resilience Scale for Adults and Caregiver Resilience Scale | Family caregivers of PwD. Mumbai: Control group; pre-/posttest (N = 56/43; intervention group pre /posttest (N = 58/51). Kathmandu; control group; pre/posttest (N = 33/24), intervention group; pre/posttest (N = 38/27). Mean age: control pretest and intervention pretest (53), Control post-test and intervention posttest (58) |
Home-based caregivers, recruited through network of voluntary agencies working with older adults, geriatric clinics and units in private hospitals in Mumbai and Kathmandu (Urban area) |
The intervention group reported less perceived caregiving burden and higher self-efficacy than the control group. Home practice significantly reduced caregiving burden. The culturally appropriate meditation program, drawing on familiar traditions, proved effective for home-based caregivers of Alzheimer’s. Women and spouse caregivers responded better to the program than male caregivers |
| Parveen et al., 2022, [51] | Knowledge and attitude of caregivers of people with dementia | To evaluate the knowledge and attitude of caregivers of people with dementia towards the Alzheimer disease, and to assess the association of attitude and knowledge towards dementia |
Quantitative Cross-sectional |
ADKS and Dementia Attitude Scale |
Dyads of caregivers of PwD (N = 50), mean age caregivers (48) |
Patient population attending psychogeriatric clinic outpatient services at a tertiary care hospital in northern India/Chandigarh (Urban area) | Most caregivers were aware of different aspects of dementia. The highest scores were for the course and symptoms, then “treatment and management.” The Dementia Attitude Scale’s mean score was 76.4 ± 18.4, indicating that caregivers hold fewer positive attitudes towards dementia |
| Pattanayak et al., 2010, [52] | Assessment of burden in caregivers of Alzheimer's disease from India | To assess the burden in relation to key variables and explore its predictors in caregivers of Alzheimer’s disease |
Quantitative Cross- sectional |
BAS | Dyads of caregivers and PwD (N = 32), mean age caregivers (54) |
Dementia clinic of a tertiary hospital in northern India/New Delhi (Urban area) |
Caregivers experienced moderate burden, increasing with patient’s behavior and cognitive impairment. Male patients’ caregivers felt more burdened than those for females. Female and older caregivers reported more physical, mental, and spouse-related burden. Caregivers from joint families had similar burden levels to nuclear families, except for less external support |
| Pattanayak et al., 2011, [53] | Coping and its relationship to quality of life in dementia caregivers | To assess coping strategies and Quality of life (QoL) and to studying the relationship between coping, QoL and severity of dementia |
Quantitative Cross-sectional |
Coping checklist (CCL) and WHOQOL-BREF Hindi version | Dyads of caregivers of PwD (N = 32), mean age caregivers (54) |
Dementia clinic of a tertiary hospital in northern India/New Delhi (Urban area) |
Two articles used the same dataset. Education positively influenced total coping score, problem-solving, positive distraction, acceptance, and negatively affected religion and denial. Problem-solving positively correlated with psychological QoL, while denial/blame negatively correlated with physical and psychological QoL. Social support, as the most beneficial coping strategy, positively influenced psychological, social, and environmental QoL domains. Coping strategies and QoL relied more on caregiver traits than patient’s dementia severity |
| Shaji et al., 2003, [54] | Caregivers of people with Alzheimer's disease: a qualitative study from the Indian 10/66 Dementia Research Network | To explore the care arrangements for people with dementia and the strain experienced by their family caregivers | Qualitative | Open ended individual interviews using a topic-based guide | Caregivers of PwD (N = 17), mean age (information not provided) |
A rural community-based dementia care service in southern India/Thrissur (Rural area) |
Most caregivers were young women, often daughters-in-law to dementia patients. Behavioral problems of dementia and incontinence caused strain, worsened by insufficient local health services and occasional family criticism. Family conflict was common. Many caregivers had significant mental health decline. Tragically, one caregiver committed suicide after her husband’s death |
| Shaji et al., 2009, [55] | Behavioral symptoms and caregiver burden in dementia | To examine the prevalence of BPSD in a community sample of patients with dementia and its impact on the caregivers |
Quantitative Cross-sectional |
Caregiver- Rated BEHAVE-AD, General Health Questionnaire (GHQ-12) was used to measure psychiatric morbidity. Caregiver strain was assessed by ZBI | Dyads of patients diagnosed with dementia and their caregivers (N = 29), mean age caregivers (information not provided) | Dementia care service in a rural community in southern India/Thrissur (Rural area) | Of 28 patients (96.6%), all had at least one BPSD as per BEHAVE -AD. A significant association existed between BEHAVE-AD’s total score and high caregiver distress on global rating. Caregiver burden negatively impacted the carer’s mental health |
| Sinha et al., 2017, [56] | Caregiver burden in Alzheimer-type dementia and psychosis: A comparative study from India | To evaluate the burden of care in caregivers of patients with Alzheimer-type dementia and compare it with elderly psychosis; and to also study the factors that influence burden of care in Alzheimer’s dementia |
Quantitative Cross-sectional |
NPI and ZBI were used to evaluate burden of care and to study the factors that influence burden of care | Dyads of caregiver-patients of Alzheimer-type dementia (N = 32), mean age (53) were compared with dyads of caregiver-elderly patients of psychosis (N = 32), mean age (50) |
Outpatient departments of Psychiatry and Neurology at a tertiary center in northern India/Delhi (Urban area) |
The mean dementia caregiver burden was 47.7, while elderly psychosis caregivers scored 33.6 (p < 0.001). Spouses bore the most burden, which in dementia was linked to cognitive impairment and ADL dysfunction. Caregivers’ psychological distress also indicated higher dementia burden |
| Tomita et al., 2010, [36] | Characteristics and Perceived Supports of Primary Caregivers of Home-Based Older Adults With Dementia in India, Taiwan, and the United States | To compare the characteristics of caregivers of older patients with dementia and describe their perception of social supports in India, Taiwan and the United States |
Quantitative Cross-sectional, cross-national study |
Interview form survey translated from English into Indian and Mandarin was conducted through person-to-person, phone and email. GDS was used to compare caregivers’ characteristics | Primary caregivers of home-based older adults with dementia; from India (N = 50) mean age (49), Taiwan (N = 67), mean age (54) and United States (N = 50), mean age (62) | Caregivers of PwD living in urban community recruited through psychiatric hospitals, day care center, private psychiatric clinics Alzheimer’s disease association’s website (Taiwan), Alzheimer’s clinics (United States), and (Mumbai, India – Urban area) | India, Taiwan, and the United States, despite their varied economies, healthcare systems, and cultures, rely greatly on informal caregivers for care of dementia patients. Differences were found in managing problematic behaviors. All Indian caregivers reported preventing wandering and unsafe behaviors, compared to 60% of Taiwanese and 50% of American caregivers. Universal and country-specific interventions were identified to alleviate caregivers’ burden |
| Tomita et al., 2010, [35] | Psychological Health of Primary Caregivers of Home-Based Older Adults with Dementia in India, Taiwan, and the United States | To identify positive and negative aspects of caregivers’ psychological health in the 3 countries |
Quantitative Cross-sectional, cross-national study |
ZBI, Center for Epidemiologic Studies Depression Scale (CES-D), UCLA Loneliness Scale and Picot Caregiver Rewards Scale were used to identify positive and negative aspects of caregivers’ psychological health | Primary caregivers of home-based older adults with dementia; from India (N = 50) mean age (49), Taiwan (N = 67), mean age (54) and United States (N = 50), mean age (62) | Caregivers of PwD living in urban community recruited through psychiatric hospitals, day care center, private psychiatric clinics Alzheimer’s disease association’s website (Taiwan), Alzheimer’s clinics (United States), and (Mumbai, India – Urban area) | Caregiver burden is closely associated with depression in India, Taiwan, and the US, and also correlates with loneliness. Indian caregivers reported the least negative psychological impacts, while Taiwanese caregivers experienced the worst outcomes of burden, depression, and severe loneliness. Unique predictors for psychological health were identified in each country. When accounting for caregivers’ residence in India, education about caregivers’ needs and governmental financial aid were deemed as essential interventions |
| Trivedi et al., 2013, [57] | Neuropsychiatric symptoms in mild cognitive impairment: An analysis and its impact on caregiving | To study the relevance of neuropsychiatric symptoms of MCI and the impact it has on caregivers of these patients |
Quantitative, Cross-sectional consecutive sampling |
GDS and NPI were used to assess NPS impact on caregivers |
Total 90 dyads; 30 dyads of elderly-relatives in each of three groups. Group 1; dyads of relatives and their elderly with no cognitive problems (N = 30). Group 2; dyads of relative of patients with diagnosis of MCI (N = 30) Group 3: dyads of relatives and patients with dementia (N = 30), mean age of relatives (61, 63 and 70, respectively) |
Psychiatry outpatient department of a tertiary care teaching municipal institute in western India, Mumbai (Urban area) |
Neuropsychiatric complaints were reported by 73.33% of MCI group subjects, 90% of dementia group subjects, and 53.33% of normal cognition subjects. Distress was experienced by 73.33% of MCI group relatives, 90% of dementia group relatives, and 46.67% of control group relatives. Neuropsychiatric symptoms, increasing in frequency and severity with cognitive decline, differed significantly among the three groups and significantly predicted caregivers’ distress |
| Vayalil et al., 2015, [58] | A Qualitative Study on Lived Experience of Caregivers of Alzheimer’s Disease Clients and Effectiveness of the Booklet on Caregiver’s Burden at Selected Alzheimer’s Care Centers in Kerala | To assess the effectiveness of the use of Booklet “They are valuable for us” on caregivers’ burden | A triangulation approach to conduct the study. A quantitative approach was used to assess the care burden of caregivers of Alzheimer’s disease clients and qualitative approach using the phenomenological method was adopted to qualitatively analyse the care burden | ZBI was used to assess the effectiveness of the Booklet on caregivers’ burden. Semi-structured interview to explore the lived experience of care givers of Alzheimer’s disease client | Caregivers of PwD (N = 40), mean age (information not provided) |
Alzheimer’s care center in southern India/Kottayam (Urban area) |
The mean pretest care burden was 37.2, decreasing to 30.1 post-test (p < 0.05). The study found the booklet “They are valuable for us” effectively reduced caregivers’ burden of Alzheimer’s patients |
AD Alzheimer’s Disease, ADKS Alzheimer’s Disease Knowledge Scale, ADL Activities of Daily Living, ARDSI Alzheimer’s Related Disorders Society of India, BAS Burden Assessment Schedule, BPSD Behavioral and Psychological Symptoms of Dementia, CCL Coping Checklist, CDR Clinical Dementia Rating scale, EASI Everyday Abilities Scale for India, FCGs Family caregivers, GDS Global Deterioration Scale, GHQ General Health Questionnaire, HCP Health Care Personnel, MCI Mild Cognitive Impairment, MMSE Mini-Mental State Examination, NPI Neuropsychiatric Inventory, NPI-D Neuropsychiatric Inventory-Distress, NPI-S Neuropsychiatric Inventory-Subject, NPS Neuropsychiatric Symptoms, PSS Perceived Stress Scale, PwD People/Patient/Patients with Dementia, RCT Randomized Controlled Trial, SPACE Scale for Positive Aspects of Caregiving Experience, VSID-I-Tool 2 Vellore Screening Instrument for Dementia-Informant Version, WHOQOL-BREF World Health Organization Quality of Life–BREF version, ZBI Zarit Caregiver Burden Interview, ZBS Zarit Burden Score, ZCBS Zarit Caregiver’s Burden Scale