Understanding and Strengthening Resilience in Informal Caregivers of People with Dementia

Abstract

Formal care systems are often inefficient or inaccessible for older adults and their families. Consequently, many individuals take on the role of informal caregivers, providing non-professional care for an elderly family member. Dementia - a major challenge in elderly care - presents unique difficulties for caregivers. It is associated with several neurodegenerative diseases and typically manifests as memory loss, communication difficulties, behavioural problems and impaired reasoning. Studies suggest that informal caregivers of people with dementia (PwD) face a heightened risk of developing depression [1]. To prevent and alleviate caregiver burden, support systems and preventive measures are needed within healthcare services.

Resilience is a key psychological concept in understanding caregiver burden. Although a complex phenomenon with various definitions, resilience can be broadly understood as the capacity to adapt positively to adversity. While it was traditionally viewed as a stable trait, it is increasingly regarded as a dynamic state shaped by environmental and contextual factors. Notably, resilience has also been identified as a protective factor against depression [2].

This study is part of a larger international initiative on mental health support for informal caregivers, called DemiCare+, which involves participants from Austria, the Netherlands, and Romania. The thesis project, conducted in collaboration with the Austrian Institute of Technology, explores caregiver needs by identifying key risk and protective factors influencing resilience. To achieve this, a literature review will first be conducted. The identified factors will then be categorised (e.g., personal traits and beliefs, social support, access to formal care), forming a preliminary theoretical model of resilience specific to this group.

Building on the literature review, group workshops with caregivers and expert interviews will be conducted. The collected data will be analysed using qualitative content analysis [3], with particular attention to the interaction between environmental and psychological factors. Drawing on theories of situated cognition, the analysis will help refine the initial theoretical model. The outcome will be a comprehensive resilience model for informal caregivers of PwD, providing guidance for supporting them. Finally, recommendations for further research and targeted interventions will be proposed.

The employed methodology is grounded in human-centred design and diversity-sensitive approaches, commonly applied in problem-solving and the development of inclusive technologies. The focus is on the discovery phase of the design thinking process, emphasising empathy for the lived experiences of informal caregivers. By integrating mental health, social contexts and technology, this thesis aims to lay the foundation for future research on digital mental health interventions.

References

[1] R. N. Collins and N. Kishita, “Prevalence of depression and burden among informal care-givers of people with dementia: a meta-analysis,” Ageing and Society, vol. 40, no. 11, pp. 1–38, Jun. 2019. doi: 10.1017/s0144686x19000527.

[2] F. L. Vázquez et al., “Resilience as a protective factor against depression in informal caregivers,” Frontiers in Psychology, vol. 15, Jul. 2024. doi: 10.3389/fpsyg.2024.1370863.

[3] P. Mayring, "Qualitative content analysis: theoretical foundation, basic procedures and software solution, " Klagenfurt, 2014. [Online]. Available: https://nbn-resolving.org/urn:nbn:de:0168-ssoar-395173. [Accessed: May 09, 2025].