Loneliness among informal caregivers: qualitative insights into factors of social disconnection

Background

Loneliness among informal caregivers shows a higher prevalence compared to the general public. However, how the informal caregiving role drives experiences of loneliness has so far remained unclear. This study explored informal caregivers’ experiences of loneliness and identified factors that intensify or alleviate these feelings.

Methods

Between September 2025 and April 2026, a heterogeneous group of 35 informal caregivers participated in two semi-structured interviews. Participants were asked about their caregiving roles, loneliness, coping strategies, experiences of stigmatization, and support needs. Data were analysed using inductive reflexive thematic analysis.

Results

Findings indicate that loneliness is an integral aspect of the caregiving experience. Participants highlighted a lack of emotional support from loved ones, the isolating burden of care, and the shift in life priorities that created a sense of disconnection from peers. Furthermore, caregivers reported feeling dismissed or unseen by both their communities and professional support systems, further strengthening feelings of loneliness. Conversely, openness and interaction with peer caregivers appeared to alleviate some of the loneliness caregivers experience.

Conclusions

Our results indicate that caregiver loneliness is not merely impacted by individual factors, but is largely driven by external influences, such as a lack of societal understanding and a deficit of inclusive support from both social and professional networks. These insights can inform comprehensive, multi-level interventions to protect and support sustainable caregiving; an outcome that is essential from individual, societal, and public health perspectives.

Key messages

• Loneliness is an integral caregiver experience. Interventions must shift from an individual focus to multi-level approaches that improve social connection and address external barriers.

• Caregivers are often left out by peers and current health structures. We need a shift toward inclusive professional systems and community understanding to reduce their sense of loneliness.