The strong family support system saves Indian govt billions of dollars but exposes the caregiver to additional stress

Hyderabad: Caregiving is typically done within the context of a family. Caregiver burden (CB), defined as “the physical, psychological or emotional, social, and financial problems that can be experienced by family members caring for impaired older adults,” is one of the consequences of caregiving (George & Gwyther, 1986, p 253).

The core cultural values of collectivism and emotionalism underpin Indian society. People with dementia continue to live with their families in this developing country. Adult family members who live in the same house provide this long-term unpaid care to the disabled elderly. The strong family support system undoubtedly saves the Indian government billions of dollars each year. Caring for dementia patients at home, on the other hand, places significant physical, emotional, and financial strain on the carer (Gupta et al, 2012). Long-term care is the most pressing necessity in an ageing society. Family members are the informal, albeit primary, carers for the elderly in Indian culture. Caregiving necessitates significant emotional and financial investment (Chakraborty et al, 2023).

In caring for the health and well-being of the elderly, family members acting as informal carers may become exposed to poor health due to additional stress and burden. In most circumstances, carers have much greater rates of depressive symptoms than non-caregivers. Depressive symptoms are diagnosed in 29% of carers, compared with 27.58% of non-caregivers. In contrast, 11% of carers reported poor self-rated health (SRH) (Chakraborty et al, 2023).

According to studies, behavioural abnormalities in dementia patients are one of the most significant variables contributing to CB (Beeri et al, 2002; Sink et al, 2005). Aggression, agitation, and nighttime wandering are all substantially linked to CB and depressive symptoms (Gallicchio et al, 2002; Gaugler et al, 2005).

Price of Relationships

The most immediate determinant of burden is the quality of relationships (Gupta, 2009a). Caregivers frequently express feelings of attachment to the care recipient. According to recent research, emotional closeness in a relationship between the carer and care receiver is an important factor in explaining the level of carer burden (Lecovich, 2008; Spaid & Barusch, 1994). According to Stoller and Pugliesi (1989), carers who have positive relationships with their care recipients are less likely to experience high levels of carer burden, regardless of the amount of care they provide.
Poor relationship quality between the carer and care recipient increases the carer burden (Koerner, Kenyon, & Shirai, 2009; Gupta, 2009a). As a result, it is likely that as “relationship quality” improves, so will the amount of perceived carer burden. In addition, this caregiving within the family is bounded by normative gender specific.

Given the role of women as carers in the Asian Indian context, women are more likely than men to provide care to the elderly and thus experience a perceived carer burden (Kahn, McGill, & Bianchi, 2011; Miller, Lynda, & Cafasso, 1992; Navaie-Waliser, Spriggs, & Feldman, 2002). Because of gender-related expectations, caregiving duties may be imposed on women (primarily daughters-in-law), causing their relationship with the care recipient to become strained. As a result, women are more likely than men to have poorer relationship quality with the care recipient (Gupta et al, 2012).

Spillage of Disputes

Family disputes can occur as a result of the caregiver’s experience or when long-standing unresolved family issues continue to spill over into the caregiver’s experience, increasing demands and interfering with the support they might otherwise receive (Neufeld & Harrison, 2003). To reduce the degree of CB, Li and Sprague (2002) discovered that carers require help and assistance from family members, as well as their verbal praise and appreciation for the carers’ labour. Conflict in the family is a key predictor of carer depression. It was also discovered that when cognitive impairment worsens, carers perceive the family to be more conflicted and less adaptive (Deimling et al, 2001).

Previous research indicates that elderly people who live with their primary carers are well cared for if they contribute to the household with resources such as their finances, emotional support, and information (Gupta, 2002; Gupta & Chaudhuri, 2009). Role overload has no effect on relationship quality. Caregiving is delivered in the context of role conflict and role overload, but their impact on carer strain is mitigated by seniors’ supporting positions (Gupta et al, 2012).

Implications

Why it is critical to solving these issues? For starters, the poor mental health of carers can have an impact on the quality of care they deliver. Depressed carers, for example, are more likely to participate in patient neglect and abuse, which are known to predict patient mortality.

Second, the social relationship between patients and carers has been harmed. Caregivers, for example, frequently report feeling lonely and isolated in their relationships. Poor relationship functioning has been linked to poor physical health, reduced immunological function and death among relationship partners. Finally, carers with poor mental health may negatively influence patients through emotional contagion or behavioural mimicry (Lwi et al, 2017).

Effective interventions to minimise CB are critical components of providing optimal care to dementia patient-caregiver dyads (Etters et al, 2008). Family intervention programmes that include education, stress management and coping skills have been shown to significantly reduce depression and stress among carers while also reducing behavioural problems (Marriott et al, 2000).

This article has been authored by Krisha Balsarkar, Third Year Undergraduate Student, FLAME University, and Dr. Garima Rajan, Faculty of Psychology, FLAME University.