Sociodemographic and clinical profile, caregiver burden, and quality of life in dementia: A cross-sectional study

Sociodemographic characteristics of study participants

Among the 30 study participants, 43.3% (n = 13) were male and 56.7% (n = 17) were female. Regarding religion, the majority were Hindu (80.0%, n = 24), while 20.0% (n = 6) were Muslim. In terms of education, 70.0% (n = 21) were illiterate and 30.0% (n = 9) were literate. The socioeconomic status distribution showed that 36.7% (n = 11) belonged to the lower class, 16.7% (n = 5) to the lower middle class, 3.3% (n = 1) to the upper middle class, and 43.3% (n = 13) to the upper lower class. Occupationally, 23.3% (n = 7) were laborers, another 23.3% (n = 7) were farmers, and 53.3% (n = 16) were housewives. Marital status data revealed that 53.3% (n = 16) were married, and 46.7% (n = 14) were separated or widowed. Regarding family type, 73.3% (n = 22) lived in joint families, whereas 26.7% (n = 8) were in nuclear families. Concerning domicile, 90.0% (n = 27) resided in rural areas and 10.0% (n = 3) in urban areas.

Caregiver burden was significantly associated with place of residence (c² = 7.778, df = 3, p = 0.050) and DSRS scores (c² = 15.310, df = 6, p = 0.018), indicating that caregivers in certain locations and those caring for patients with more severe dementia reported higher burden levels.

Association of WHO-QOL with sociodemographic variables (Gender, Religion, and Domicile)

An independent samples t-test was conducted to compare WHO-QOL domain scores across categories of gender, religion, and domicile. *p < 0.05 is considered statistically significant.

WHO-QOL scores revealed a significant gender difference only in the environmental domain (t = −1.868, df = 28, P = 0.036), with no significant gender differences in the physical, psychological, social, or total scores. No domain showed significant variation by religion. Domicile (urban vs. rural) was significantly associated with the psychological domain (t = −2.03, df = 28, p = 0.026), with rural participants scoring lower, while other domains and the total score showed no significant differences.

A one-way ANOVA was conducted to examine the relationship between the WHO-QOL domains and both cognitive status, as indicated by the Hindi mental status examination scale (HMSE), and the severity of dementia, measured by the DSRS.

Regarding HMSE, statistically significant differences between groups were found in all QOL domains: Physical (F [2, 27] = 40.61, p < 0.001, 95% CI for mean difference: −21.3–−13.5), psychological (F [2, 27] = 5.55, p = 0.010, 95% CI: −14.2–−3.1), social (F [2, 27] = 15.90, p < 0.001, 95% CI: −26.8–−11.9), environmental (F [2, 27] = 20.38, p < 0.001, 95% CI: −19.5–−9.4), and total QOL (F [2, 27] = 33.58, P < 0.001, 95% CI: −75.6–−44.3).

Similarly, for DSRS, significant differences were observed across all domains: Physical (F [2, 27] = 8.84, p = 0.001, 95% CI: 5.2–18.9), psychological (F [2, 27] = 6.60, p = 0.005, 95% CI: 3.9–16.2), social (F [2, 27] = 11.40, p < 0.001, 95% CI: 8.4–23.7), environmental (F [2, 27] = 27.24, p < 0.001, 95% CI: 10.5–21.3), and total QOL (F [2, 27] = 21.96, p < 0.001, 95% CI: 35.2–88.1).

A multiple linear regression analysis was carried out to further assess the predictors of QOL. HMSE scores were positively correlated with all QOL domains (b ranging from 0.42 to 0.63, all p < 0.01), indicating that enhanced cognitive function was predictive of higher QOL scores. In contrast, DSRS scores exhibited a negative correlation with QOL domains (b ranging from −0.39 to −0.58, all p < 0.01), suggesting that increased dementia severity was associated with lower QOL. The adjusted R² values ranged from 0.41 to 0.69, indicating that cognitive status and dementia severity together explained a considerable amount of variance in QOL scores.

A one-way ANOVA was conducted to examine differences in WHO-QOL domain scores across four groups. The psychological domain showed a statistically significant difference among the groups (F [3, 26] = 5.776, p = 0.004), indicating that psychological QOL varied significantly between groups.

However, no significant differences were observed in the physical (p = 0.740), social (p = 0.244), environmental (p = 0.147), or overall QOL scores (p = 0.110) across the groups. These findings suggest that group differences were specifically associated with psychological well-being rather than other QOL domains.

Sociodemographic profile

Rural-Urban considerations

The cohort’s rural predominance (90%) and joint family structures are typical in India. While joint families may relieve some caregiver burden, rural residence frequently presents amplified challenges: less access to health resources, higher disability levels, and impaired social participation (Jia et al.;^[31] Kim et al.;^[32] Kroger et al.^[33]). Notably, the psychological domain of QOL was most affected by rural domicile – a point for future targeted interventions.

Severity of dementia and disability

In this study, most subjects were diagnosed with moderate dementia (56.7%), with severe cases accounting for 26.7%, and mild dementia for 16.7% [Chart 1 and Chart 2]. Higher severity correlated with significantly greater disability across all domains (P < 0.001), echoing findings that dementia is the leading contributor to disability in late life (Sousa et al.^[34]), and exhibiting the characteristic gradient of functional loss as neurodegeneration progresses [Table 2].

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Chart 1:

Distribution of Dementia Severity among Study Participants (n = 30) as per DSRS scores

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Chart 2:

Distribution of Cognitive Impairment measured among participants as per by HMSE Scores

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QOL domains

QOL assessments demonstrated marked deterioration in all WHO-QOL-BREF domains – physical, psychological, social, and environmental – as dementia severity increased (P < 0.001 for all domains). This multifaceted decline resonates with prior reviews showing a strong negative correlation between dementia severity and overall QOL (Burks et al.;^[35] Banerjee et al.^[36]).

Importantly, analyses of domicile highlighted specificity: only psychological QOL showed a significant association with rural residence (P = 0.026). Other domains did not yield significant differences, underscoring that the emotional impact of rural living may exceed physical, social, and environmental aspects – cautioning against over-interpretation regarding broader QOL impairment in rural populations [Table 3].

Caregiver burden

Caregiver burden was substantial, with 17% reporting severe, 50% moderate to severe, and 27% mild to moderate burden. These figures mirror previous progression estimates in the literature (Brodaty et al.^[37]), and our findings reaffirm that burden intensifies in tandem with functional disability, particularly in non-cognitive domains (mobility, self-care, social participation; P < 0.001). This escalation underlines the imperative for both formal and informal support mechanisms, especially in resource-limited settings (Ransmayr et al.^[38]).

Interplay between caregiver burden and patient QOL

Caregiver burden showed a measurable impact on patient-perceived QOL. Specifically, psychological QOL was significantly affected across burden categories (P = 0.004), with lower caregiver strain associated with better patient psychological well-being; trends in other QOL domains, though present, did not reach statistical significance. This aligns with population-based studies noting negative correlations and gender-linked variations in burden (Srivastava et al.^[39]), supporting the notion that caregiver well-being is closely entwined with patient outcomes in dementia.

Religious and spiritual context

While the cohort was predominantly Hindu (80%) and Muslim (20%), the sample was insufficient to draw conclusions regarding the protective roles of spiritual practices. Nonetheless, literature recognizes spiritual beliefs as potential buffers against morbidity, meriting further research in larger samples.

Limitations

1. The small sample size (n = 30) is a major limitation in the methods and discussion

2. Non-inclusion of physical co-morbidities from the analysis.

Future directions

1. Larger, multicenter studies to improve generalizability and allow subgroup analyses by demographics and sociocultural factors

2. Include physical co-morbidities (e.g., hypertension, diabetes, hypercholesterolemia) to assess their influence on dementia progression and caregiver burden

3. Longitudinal follow-up and interventional research to track disease trajectory and test community-based, culturally tailored caregiver support programs

4. Explore spirituality and coping strategies to understand potential protective effects in rural cultural contexts 5. Develop gender-responsive strategies addressing women’s vulnerability and disproportionate caregiver burden

5. Leverage technology such as telemedicine and mobile health tools to improve dementia screening, education, and specialist access in rural areas

6. Integrate dementia care into rural primary healthcare, using community health workers as frontline implementers

7. Study family structures and social networks to determine their role in dementia outcomes and caregiver support

8. Promote dementia literacy and advocacy through community awareness campaigns to reduce stigma and encourage early help-seeking.

Implications

1. Policy: Integration of dementia screening into rural primary healthcare, with a focus on early detection and disease education

2. Care models: Community-based, culturally adapted caregiver support programs to reduce burden and improve patient well-being

3. Public health priority: Lifelong cognitive stimulation through education and occupational enrichment to build cognitive reserve and lower long-term dementia risk.