Beyond isolation: How stigma drives loneliness among informal caregivers

Background

Among the many burdens of informal care is the risk of stigma. Caregivers face stigmatizing responses from their peers and society, also increasing their risk for experiencing loneliness. Despite known burdens of caregiving, the specific intersection between stigmatization and the subjective experience of loneliness remains insufficiently addressed in current literature. This study aimed to explore informal caregivers’ experiences of stigmatization and how it plays a role in experiences of loneliness and social disconnection.

Methods

Between September 2025 and April 2026, 35 informal caregivers were interviewed twice about their experiences of loneliness, stigmatization, and related needs. The data was analysed using inductive reflexive thematic analysis.

Results

Results indicate that informal caregivers experience stigma related to their roles, their loneliness, and the care receiver’s type of disease. Participants reported misperceptions and false judgements about their caregiving role or the care receiver, leading to avoidance, exclusion or loss of relationships. Furthermore, participants reported that peers often confuse loneliness with social isolation, frequently judging the caregiver’s perceived lack of social initiative. Such stigmatizing views result in the dismissal of their emotional distress and increased social disconnection. Conversely, caregivers explicitly mentioned stigma as a significant contributor to their sense of loneliness.

Conclusions

Stigmatization seems to be an important but overlooked aspect in informal caregivers’ lives, which negatively impacts both the quantity and quality of social connections. These insights into experiences of stigma and the connection to loneliness in adult informal caregivers can be used to inform the development of interventions addressing loneliness and stigma in informal caregivers, improving individual and public mental health.

Key messages

• Stigma significantly drives informal caregiver loneliness and social disconnection. Addressing these external factors is essential for sustainable caregiving and effective public health support.

• Equating loneliness with isolation triggers stigma that blames a caregiver’s social initiative. Addressing this misconception is crucial to stop the dismissal of their emotional distress.