Policy Primer: Impact of Extended Caregiving

Extended caregiving is defined as the long-term personal, social, and medical support provided to individuals with diminished physical or mental capacity, often by family or community members (WHO, 2022). Driven by demographic shifts, increased life expectancy, and stretched health services, informal caregiving is rising globally (Carers UK, 2024). In the UK, 5.8 million people are informal carers, with over 63 million worldwide (International Alliance of Carer Organisations, 2018; Verbakel et al., 2017). This paper critically evaluates the psychological impacts of extended caregiving, considering theories and evidence to explore both adverse impacts and conditions that generate positive psychological outcomes

Theoretical perspectives
Different theories have been used to situate the impacts of caregiving. The Stress Process Model identifies primary stressors (e.g., care tasks) and secondary strains (e.g., financial pressure) that impact carer wellbeing (Pearlin et al., 1990). Adaptations to this theory incorporate intersectional realities, including multigenerational and minority ethnic caregiving (Cheng et al., 2020).
Role Theory considers competing social roles (e.g., work and parenting) that lead to role conflict and psychological strain (Goode, 1960). While Conservation of Resources Theory (Hobfoll, 1989), frames stress as a result of loss/threat of loss of core resources such as time and health—especially visible during crises like the COVID-19 pandemic (Romero-Moreno et al., 2022).
The concept of compassion fatigue (Figley, 1995) explains emotional depletion from sustained empathic engagement, while Empathic Distress Theory emphasises the need for emotional regulation to avoid burnout (Klimecki and Singer, 2012). These theories highlight caregiving strain but are criticised for focusing on individual responses while downplaying structural factors—such as gendered norms, economic disadvantage and unequal access to support (Greenwood et al., 2019). There has been a shift to integrated psychological, sociological, and public health approaches (Thomas, 2020).

Negative psychological consequences
Caregiving is strongly associated with anxiety, burnout, depression and physical illness. Carers report higher rates of depression than non-carers, particularly when caring for individuals with dementia or chronic illness (Pinquart and Sörensen, 2003; Sallim et al., 2015). Prolonged exposure can precipitate anticipatory grief and helplessness (Joling et al., 2015).
Burnout—emotional exhaustion, detachment, and reduced efficacy—occurs when caregiving demands exceed personal resources (Maslach et al., 2001; Krämer and Bleidorn, 2024; 2024a). Burnout risk increases when carers lack formal support and time for self-care.
Social isolation is another common experience, as time-intensive caregiving necessitates limits to social interactions and leisure time. This can exacerbate loneliness and lead to poorer cognitive and emotional outcomes for carers (Glasdam et al., 2015; Holt-Lunstad et al., 2015). These effects are compounded in rural or marginalised communities (Greenwood et al., 2019).
The burden is unequally distributed. Women, especially those from minority ethnic or low-income backgrounds, are more likely to face intersecting pressures tied to social expectations of class, gender and culture (Arber and Ginn, 1995; Larkin et al., 2019).

Moderating and mediating factors
Outcomes for extended caregivers vary due to factors that buffer or intensify psychological impact. Social support is one of the most protective variables. According to the stress-buffering hypothesis, practical and emotional support reduces the perceived burden of caregiving (Cohen and Wills, 1985). Access to support groups, family help, or community networks correlates with lower depression and anxiety (Chappell and Reid, 2002). However, support must be meaningful—unsympathetic responses can worsen distress (Litzelman et al., 2015).
Formal support—respite care or counselling—can be crucial, yet often remains inaccessible, especially for minority and low-income carers (Greenwood et al., 2019). Lack of culturally appropriate services further limits engagement. Furthermore, carers with secure income and housing tend to fare better psychologically. Economic insecurity restricts access to professional help and worsens stress (Schulz and Eden, 2016). Structural factors, such as welfare cuts and inflexible employment, intensify the burden (Carers UK, 2024).
At the individual level, coping strategies and personality traits moderate wellbeing. Problem-focused coping (e.g., seeking information) is generally protective, whereas avoidant strategies correlate with poorer outcomes (Folkman and Moskowitz, 2004). Traits like resilience and optimism are associated with lower distress (Labbas and Stanfors, 2023). Yet framing coping as an individual responsibility overlooks systemic limits: many carers lack the time, support, or autonomy to “cope well” (Larkin et al., 2019). A structural lens is necessary to contextualise coping ability.

Positive psychological outcomes
Despite its challenges, caregiving can also foster growth and resilience. The concept of post-traumatic growth (Tedeschi and Calhoun, 2004) describes positive psychological changes following adversity. Some carers report increased empathy, closer relationships, or a stronger sense of purpose, particularly when caregiving aligns with their values (Kim et al., 2007).
Research suggests cultural context plays a role. In some societies, caregiving is viewed as a moral or spiritual duty, which can buffer distress and enhance meaning-making. For example, one study found that carers in Kenya described care as a source of spiritual strength despite hardship (Gona et al., 2011). However, narratives such as these may conceal unacknowledged distress or be used to justify institutional and government neglect.
Park and Schumacher (2014) found that positive outcomes are more likely when carers have autonomy, support, and the opportunity to find meaning. When care is coerced or unsupported, psychological benefits are far less common. Critics warn against idealising resilience. Framing carers as naturally selfless or fulfilled can silence legitimate distress and shift responsibility from systems to individuals (Thomas, 2020).

Policy implications
The studies and theories covered above suggest that psychological frameworks should be situated within broader socio-political contexts. The focus on individual pathology rather than the systemic injustices—like austerity, homophobia, racism and sexism—neglects lived caregiver experiences. A critical question for both researchers and policymakers is: how much stress is deemed acceptable before society intervenes? Too often, caregiver exhaustion is normalised, or even moralised, reinforcing harmful expectations of silent endurance (Larkin et al., 2019).
When caregiving is unsupported, it damages not only carers’ mental health, but the experience of those being cared for and also social cohesion. Carers may become isolated, resentful, or detached—especially those navigating systems without training or recognition (Greenwood et al., 2019).
Commentators recommend that policy reform must extend beyond symbolic recognition to material support: accessible respite care, flexible employment policies, financial aid, and culturally sensitive services (WHO, 2022; Carers UK, 2024). Integrating carers into health and social care systems, with regular psychological screening and tailored interventions, would reduce crisis points and improve long-term wellbeing.
Psychological research must also evolve to centre equity and justice, designing interventions that reflect the lived experiences of marginalised groups including LGBTQ+ carers, disabled carers, and carers of colour, often ignored by policy considerations. Moving from a discourse of carer “coping” to carer rights is gaining momentum especially given the rising demand for extended caregiving (Carers UK, 2024).

Conclusion
The psychological impacts of extended caregiving are shaped by emotional demands of the role and by how care is valued, supported, and distributed. Caregiving can bring personal growth, but it is also a site of significant psychological risk—particularly when carers are unsupported or structurally marginalised. Caregiver distress is not inevitable, but often the product of cultural expectations, policy choices, structural biases and neglect. To address these impacts, and uphold the health and wellbeing of extended caregivers, an integrated, justice-informed approach should be pursued, that affirms both the emotional realities and the rights of extended caregivers.

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