Caregiver burden, depression, and anxiety in caregivers of dementia patients: A hospital-based cross-sectional study

INTRODUCTION

Dementia is a disorder defined by progressive loss of cognitive abilities affecting multiple cognitive domains, seriously hindering social and professional functioning, and leading to increased dependence on caregivers.^[1,2] As the illness worsens, individuals with dementia require continuous assistance with activities of daily living, behavioral management, and emotional support.

Caregivers of persons with dementia are exposed to relentless strain related to continuous supervision, behavioral disturbances, emotional demands, and disruption of social and occupational roles.^[3] These stressors frequently result in caregiver burden, a multifaceted construct encompassing physical exhaustion, social isolation, psychological distress, and financial strain.^[4] Elevated levels of caregiver burden have been associated with anxiety and depressive symptoms, leading to adverse mental health outcomes.^[5] Anxiety may arise from concerns regarding patient safety, symptom progression, and future caregiving demands, while depressive symptoms may develop from feelings of overwhelm, loss of personal autonomy, and inadequate social support.^[6] Research consistently indicates that caregiver burden, anxiety, and depression are interrelated rather than independent phenomena.^[7]

Despite the expanding body of work on caregiver mental health, many studies have examined these variables in isolation. Additionally, limited data is available from hospital-based settings in resource-poor regions where caregiving is family-based. It is essential to gain an insight into the relationship between caregiver burden and emotional distress to develop targeted interventions. Therefore, the present study aimed to assess caregiver burden, anxiety, and depressive symptoms among caregivers of patients with dementia and to examine the relationship between these variables.

MATERIAL AND METHODS

RESULTS

DISCUSSION

The present hospital-based cross-sectional study examined caregiver burden, anxiety, and depressive symptoms among caregivers of patients with dementia at a tertiary psychiatric facility in Kashmir and explored the interrelationships among these variables. The study was conducted on 65 caregivers of patients with dementia, comprising both male and female caregivers, using standardized assessment tools, namely the ZBI and the HADS.

The study revealed significant psychological distress among caregivers of patients with dementia, with a large proportion experiencing moderate to severe caregiver burden alongside elevated anxiety and depressive symptoms. These findings support the body of research demonstrating that dementia caregiving places considerable emotional demands on caregivers.^[3,6]

The overall burden levels observed in this study, with 50.8% of caregivers experiencing severe burden and a mean ZBI score of 58.2, are consistent with and at the higher end of findings reported in the literature. Brodaty et al. (2014) found that nearly 58% of caregivers experienced high burden after 12 months of caregiving, while Brodaty and Donkin (2009) reported that 50-70% of dementia caregivers experience moderate to high burden.^[3,8] The high burden observed in the present sample warrants contextual interpretation. All diagnoses in this study were made using ICD-10 criteria. The predominance of FTD over Alzheimer's disease in our sample (52.3% vs. 41.5%) is a clinically important finding that reflects the nature of the referral setting rather than the community-level prevalence of these conditions. As a tertiary care psychiatric facility, IMHANS-K receives a disproportionate volume of referrals for behavioral variant FTD, which presents disinhibition, apathy, social misconduct, and personality change. These symptoms prompt psychiatric referral more readily than the amnestic presentation of early Alzheimer's disease, which is more commonly managed within neurological services. Furthermore, FTD characteristically affects individuals below 65 years of age, consistent with the younger caregiver profile observed in our sample (mean age 39.2 years). In resource-limited settings such as Kashmir, early memory symptoms are frequently attributed to normal aging and go unreferred, further skewing the clinical sample toward behaviorally complex diagnoses. This distribution carries direct implications for burden interpretation: our data showed that 61.8% of FTD caregivers experienced severe burden compared with 44.4% of Alzheimer's disease caregivers (Chi-square = 14.0, p = 0.029), consistent with published literature demonstrating that the behavioral and interpersonal dimensions of FTD are substantially more distressing for caregivers than the primarily cognitive symptom profile of Alzheimer's disease.^[9,10] The overall burden scores in this study may therefore be higher than those of a population-representative or Alzheimer 's-predominant sample, and this should be considered when interpreting and generalizing these findings.

Caregiver burden showed significant associations with socioeconomic status, education level, and patient diagnosis in the Chi-square analysis, suggesting variation in burdens across these categories. Examination of descriptive distributions indicated that higher levels of burden were more frequently observed among caregivers from socioeconomically disadvantaged backgrounds, a pattern that has also been noted in earlier studies.^[11] Anxiety was similarly found to be associated with socioeconomic status and education, with descriptive trends indicating greater anxiety among caregivers facing economic and resource-related constraints. Elevated anxiety was observed in 70.8% of caregivers (HADS-A ≥ 11), with the highest rates among caregivers of patients with Alzheimer's disease and FTD. This finding is consistent with Hwang and Kim, (2024), who reported that over 60% of caregivers experienced significant anxiety, and with the broader literature demonstrating that the unpredictable behavioral manifestations of dementia, particularly wandering, aggression, and personality change, are key drivers of caregiver anxiety.^[12,13] Behavioral and psychological symptoms of dementia (BPSD), including agitation, apathy, wandering, and sleep disturbances, are well-established contributors to caregiver anxiety and burden and were clinically present across all patients in this study, particularly given the high proportion of FTD. Formal assessment of BPSD using a standardized instrument such as the Neuropsychiatric Inventory was not conducted in this study, which limits the ability to quantify the independent contribution of individual behavioral symptoms to caregiver outcomes. Future studies should incorporate such instruments to examine this relationship systematically.

Correlation analysis demonstrated significant positive relationships among caregiver burden, anxiety, and depressive symptoms, supporting evidence that emotional distress and caregiver burden are closely interrelated.^[14] Additionally, anxiety and depressive symptoms were positively correlated with each other (rho = 0.473, p < 0.001), reflecting the frequent co-occurrence of these emotional states among caregivers, a pattern well-documented in the literature. Regression analysis further identified anxiety and depressive symptoms as significant independent predictors of caregiver burden, with depression exerting a stronger predictive effect (β = 1.88, p < 0.001) than anxiety (β = 0.85, p = 0.023), accounting for 45% of variance in burden scores (Adjusted R² = 0.4371). This finding is consistent with Mahoney et al. (2005), who reported that depression is a stronger predictor of perceived burden than anxiety, likely because depressive symptoms develop from prolonged exposure to chronic unrelenting stress and signal a more severe deterioration of caregiver wellbeing.^[14] Together, these results suggest that emotional distress is not merely a consequence of caregiving demands but also a significant contributor to the experience of burden, creating a bidirectional cycle that warrants clinical attention, consistent with recent literature.^[13]

Descriptive trends in the present study indicated relatively higher levels of psychological distress among certain caregiver subgroups. Caregivers from lower socioeconomic backgrounds and rural areas showed substantially elevated burden, anxiety, and depressive symptoms. The socio-cultural context of Kashmir is important for interpreting these patterns. Gender role expectations, joint family structures, stigma surrounding mental illness, and the limited availability of community-based dementia care services collectively shape the caregiving experience in this setting in ways that differ from Western contexts. Female caregivers showed relatively elevated distress, which may reflect the greater caregiving responsibilities assumed by women within family structures in this sociocultural context. The majority of caregivers were women (55.4%), suggesting that caregiving frequently falls to women while simultaneously managing domestic responsibilities. The absence of statistically significant gender differences in formal chi-square testing, despite descriptive trends favoring higher burden and anxiety in female caregivers, may reflect the constraints of the sample size rather than genuine gender equivalence in caregiving burden in this population. In addition, caregivers in the 28–50-year age group experienced elevated levels of distress, consistent with evidence that middle-aged caregivers face the dual demands of caregiving alongside occupational and family responsibilities. Prior research has similarly reported that caregiver burden and psychological distress are higher among female caregivers and those facing socioeconomic disadvantages, highlighting the influence of demographic and contextual factors in dementia caregiving.^[15-17]

LIMITATIONS

Several limitations of this study warrant consideration.the sample size was determined by participant availability over the study period rather than a formal a priori calculation, and purposive sampling may limit the generalizability of findings. dementia severity was not formally assessed using standardized instruments such as the clinical dementia rating scale or mini-mental state examination, limiting the ability to examine burden as a function of both dementia type and illness severity. BPSD were not formally quantified using a standardized tool such as the neuropsychiatric inventory. the specific dyadic relationship between caregiver and patient (spouse, adult child, daughter-in-law) was not captured, despite its established influence on burden outcomes. Social support was not formally assessed, despite robust evidence linking it to caregiver mental health. the zbi and hads were administered in english, urdu, and kashmiri according to participant proficiency. Formal psychometric validation of the urdu and kashmiri versions was not undertaken, which is acknowledged as a limitation. future studies should conduct formal translation and validation of these instruments in local languages. The cross-sectional design restricts causal interpretation.

CONCLUSION

Caregivers of patients with dementia experience significant caregiver burden along with elevated anxiety and depressive symptoms. The high prevalence of FTD in this tertiary care sample and its associated behavioral complexity contribute to the elevated burden observed. The significant positive relationship between caregiver burden, anxiety, and depression, with depression emerging as the stronger predictor of burden, highlights the need for routine psychological screening of caregivers in dementia services. Targeted psychosocial interventions, including psychoeducation, cognitive-behavioral approaches, and structured support groups, should be integrated into the standard care pathway for dementia patients.