Perceived social support among family caregivers of persons with dementia during hospitalization: A cross-sectional study

INTRODUCTION

Recent decades have seen a rise in the incidence of chronic conditions such as dementia, and the number of persons diagnosed with dementia and requiring long-term care management and high caregiving support is on the rise.^[1] Compared to other conditions, older people with dementia have a higher disability, increased mortality, with limited availability, accessibility, and increased health care costs, a lack of knowledge about the illness and poorer social support.^[2] Persons with dementia (PWD) and the course of the illness influence the persons who take care of them in hospitals, as well as at home, called informal caregivers, who are usually family members or close friends. Informal caregivers’ social support can also influence their care recipient’s health outcomes, including the number of readmissions and the affordability of healthcare costs.^[3] People diagnosed with dementia depend on their caregivers to receive adequate help with their activities of daily living and to manage their chronic conditions.^[4] In cases of divergence, informal caregivers rely on their social networks to support their caregiving and maintain their physical and emotional well-being.^[5] Social support, whether from family, friends, or other sources, can play a key role in managing chronic conditions and improving health outcomes.^[6] Dementia substantially impacts not only the individual but also their family caregivers, who frequently provide the majority of care over extended periods.^[7] Caregivers frequently face emotional strain, financial burden, and social isolation. Social support has been recognized as a buffer against the negative impact of caregiving, improving caregiver well-being and enhancing the quality of care for the person with dementia.^[3]

The complex difficulties faced by caregivers of people with dementia have been well studied, including through studies from India, which also emphasize the necessity of context-specific support networks. Structured support groups can significantly improve caregivers’ emotional well-being, coping mechanisms, and sense of shared experience, thereby addressing the isolation frequently reported in caregiving.^[8] A qualitative study conducted during the COVID-19 pandemic^[9] found increased unmet psychosocial needs, greater caregiver burden, and disruptions in healthcare access, highlighting caregivers’ vulnerability during times of systemic strain. Furthermore, while caregivers had moderate knowledge of dementia, their attitudes toward the condition were less positive. These results point to the necessity of assessing the attitudes and knowledge of those who care for individuals with dementia, and the gaps must be filled to enhance outcomes for both the individuals with dementia and their caregivers.^[10]

In India, where family caregiving is culturally embedded, transitions of care, such as hospitalization or shifting between home and institutional settings, present unique challenges.^[11] However, research on the levels and predictors of social support among Indian caregivers, particularly during such transitions, remains scarce. Identifying factors influencing social support can help design targeted interventions to strengthen caregiver resilience and improve long-term care outcomes. The purpose of this study was to describe the levels of felt social support among informal family caregivers of dementia patients and to determine the aspects influencing social support.

The research question that guided the study was framed as: What is the level of social support perceived by caregivers of PWD during hospitalization, and does this vary across the socio-demographic profiles and stages of dementia?

MATERIALS AND METHODS

Study Design: A descriptive, cross-sectional study was conducted to determine the extent of social support perceived by family caregivers during their first hospitalization. The present study was a part of a larger doctoral research work to understand transitions of care by the first author. Strengthening the Reporting of Observational Studies in Epidemiology Statement: Guidelines for reporting cross-sectional studies were followed [Supplementary file] in the reporting.

Participants and settings: Fifty-five participants diagnosed with dementia and their caregivers, registered in the department of neurology and receiving inpatient treatment at a tertiary care hospital in Bengaluru, Karnataka, India, were interviewed between October 2023 and December 2024. The participants were approached for the study if the caregiver was above 18 years, spoke English, Kannada, Hindi, Tamil, Malayalam, and if the caregiver was mainly responsible for the care of the PWD, provided care for at least 4 h a day, had been living with the PWD for the past 6 months, and had given consent to take part in the study. Caregivers who have not been living with the patient for the past 6 months and have other neuro-psychiatric problems were omitted from the study. Convenience sampling was used in this study. The sample size for the study is estimated at a minimum of 15 for dementia, based on the social support multidimensional perceived social support (MPSS) scale, which has the highest standard deviation (SD) among the scales. The calculation is done using G Power software. The sample for the current study consisted of 55 PWD and their caregivers, to ensure a representative sample. Descriptive statistics and the Kruskal–Wallis H test for nonparametric analysis, with Bonferroni correction for post hoc pairwise comparisons, were used.

RESULTS

Sociodemographic characteristics of participants

The study included 55 patient-caregiver dyads, with a mean caregiver age of 53.9 years (SD = 15.78, range: 22–89) [Figure 1]. It was found that 31 (56.4%) of the caregivers in the sample were male, and 24 (43.6%) were female. The mean age of PWD was 62.58 ± 9.23 years, and 63.6% were spouses of PWD [Table 1 and 2]. A total of 36 (65.5%) patients were female, 61.8% had fronto-temporal dementia, and 34 (61.8%) had suffered from dementia for more than 1 year. Social support was measured across four domains: SO, friends, family, and total. Age distribution showed that 27.3% (n = 15) were aged 61–70, followed by 25.5% (n = 14) in the 41– 50 group. Most of the caregivers were male (56.4%, n = 31) and married (87.3%, n = 48). The majority were spouses of PWD (63.6%, n = 35), while 34.5% (n = 19) were offspring. Education levels varied: 43.6% (n= 24) completed secondary education, 18.2% (n = 10) held post-graduate degrees, and 9.1% (n = 5) were illiterate. Occupations included private sector employment (40.0%, n = 22), homemakers (32.7%, n= 18), and government workers (27.3%, n = 15). The mean CDR score was 1.5 (SD = 0.78), indicating that most of the individuals fell within the mild-to-moderate range of dementia severity, with scores ranging from 1 to 3. Functional ability, measured by the DAD, averaged 11.45 (SD = 9.14) and ranged from 0 to 32. According to the MPSS scale, the average perceived social support was moderate, with subscale means of 4.86 (SD = 1.23), 4.83 (SD = 1.50), and 5.58 (SD = 1.36) for SO, friends, and family support, respectively. Overall, the total perceived social support also reflected moderate levels (Mean = 5.09, SD = 1.22), with notable heterogeneity in dementia severity and functional status within the cohort [Table 2].

Table 1: Socio-demographic characteristics of PWD and their caregivers.

Demographic characteristics	Patient (n=55) standard deviation	Family caregiver (n=55)
Sex
Male (%)	19 (34.5)	31 (56.4)
Female (%)	36 (65.5)	24 (43.6)
Education (%)
Illiteracy	8 (14.5)	5 (9.1)
Primary school	16 (29.1)	7 (12.7)
Secondary school	12 (21.8)	24 (43.6)
Graduation	13 (23.6)	9 (16.4)
Post-graduation	6 (10.9)	10 (18.2)
Occupation (%)
Home maker	34 (61.8)	18 (32.7)
Private	8 (14.5)	22 (40.0)
Govt	13 (23.6)	15 (27.3)
Marital status (%)
Married	48 (87.3)	48 (87.3)
Widow/divorced	7 (12.7)	2 (3.6)
Unmarried		5 (9.1)
Socioeconomic status (%)
LSES	23 (41.8)	-
MSES	20 (36.4)	-
HSES	12 (21.8)	-
Domicile (%)
Urban	33 (60.0)	-
Rural	22 (40.0)	-
Caregiver age range (%)
Below 40	-	10 (18.2)
41–50	-	14 (25.5)
51–60	-	9 (16.4)
61–70	-	15 (27.3)
Above 70	-	7 (12.7)
Relationship with patient
Spouse	-	35 (63.6)
Off springs	-	19 (34.5)
In-laws	-	1 (1.8)

PWD: Persons with dementia, LSES: Low socioeconomic status, MSES: Middle socioeconomic status, HSES: High socioeconomic status

Table 2: Clinical profile of dementia patients.

Dementia subtypes (%)	Frequency (%)
Alzheimer’s disease	13 (23.6)
Frontotemporal dementia	34 (61.8)
Others	8 (14.5)
Duration of illness (%)
Below 1 year	8 (14.5)
1 to 3 years	34 (61.8)
Above 3 years	13 (23.6)
Duration of illness in years, mean±SD	2.84±1.85 (1.5,4)
CDR (mean±SD)	1.5±0.78
DAD (mean±SD)	11.45±9.14
MPSS domains (mean±SD)
Significant others (SO)	4.86±1.23
Family	4.83±1.50
Friends	5.58±1.36
Total	5.09±1.22

MPSS: Multidimensional perceived social support, SD: Standard

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Figure 1: Strengthening the reporting of observational studies in epidemiology diagram of participant selection.

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DISCUSSION

This study indicates that the familial caregivers of individuals with dementia in India received moderate social support during hospitalization, with notable discrepancies in the “significant others” support domain. These findings align with previous research indicating that caregivers often rely heavily on close family members, while support from extended social networks may be limited. The predictors identified caregiver age, income, occupation, and place of residence- highlighting socio-economic disparities in access to and utilization of social support. Caregivers with lower levels of education and income may have reduced awareness of available resources or face barriers to accessing them. Similarly, rural caregivers may lack access to structured support systems, while urban caregivers may experience social isolation despite being physically close to services.

Perceived social support plays a vital role in shaping families’ caregiving experiences for a person with dementia. Caregivers often describe their journey as emotionally and physically demanding, and the belief that help is available, whether through family, friends, or community networks, can significantly buffer stress and feelings of isolation. Emotional support through empathy, reassurance, and shared experiences helps caregivers feel less alone, while practical assistance with daily tasks and financial responsibilities reduces their sense of being overwhelmed. Importantly, studies suggest that it is not just the actual support received but also the perception that support is reliably available that strongly impacts caregiver well-being.^[15] However, cultural and social contexts shape these experiences: in many collectivist societies. At the same time, caregiving is seen as a family duty, stigma surrounding dementia and limited awareness often prevent caregivers from openly seeking support.^[16] Over time, some of the caregivers report a phenomenon of “support erosion,” where social networks gradually withdraw as the illness progresses, leaving them with fewer resources.^[17] Women, particularly spouses and daughters, often shoulder greater responsibilities and report higher burdens, but they also tend to mobilize more emotional support than male caregivers.^[18] The absence of perceived support has been linked with increased risk of depression, anxiety, and poorer physical health among caregivers.^[19] In contrast, strong supportive networks enhance resilience, coping, and even the ability to find meaning in caregiving.^[20] Interventions such as psychoeducational programs, support groups, and increasingly, online peer forums, have shown promise in strengthening caregivers’ sense of connectedness and reducing distress.^[21,22] Taken together, these findings underscore the importance of fostering supportive environments, both socially and structurally, to sustain the health and well-being of caregivers with dementia. Interventions to strengthen caregiver support should focus on expanding community-based networks, integrating peer-support programs, and offering targeted education and counseling for vulnerable groups. Enhancing “significant others” support may involve mobilizing friends, neighbors, and workplace colleagues through awareness campaigns and by including caregivers in community activities.

CONCLUSION

Perceived social support among caregivers of PWD is an essential factor in care management. To improve the quality of the caregiving process, caregivers should be strengthened with adequate social support. Psychosocial health care professionals can integrate multiple activities into their practice and caregiving plans for family caregivers, which can help them formally and informally support during post-diagnostic care management.

In the Indian context, informal caregivers of PWD report moderate social support with lower support from SO compared to friends and family. Socio-economic and demographic factors influence perceived support, underscoring the need for targeted, culturally sensitive interventions to enhance caregiver resilience and wellbeing, which emphasize better care and management.

Family emerged as the most dependable source across dementia stages and functionality, caregiver demographics, according to this study, which sheds light on the moderate levels of felt social support among caregivers of PWD during hospitalization. The independent significance of social support for caregiver resilience is highlighted by the fact that support varied considerably by age, education, occupation, and urban domicile. These findings have important implications for clinical practice and policy in India, where dementia affects families with minimal resources. While addressing vulnerabilities in remote areas, lower-education groups, and specific occupations, such as customized peer support programs or community outreach for homemakers and private employees, interventions should concentrate on strengthening family networks.