Enhancing Older Adults’ Health: The Role of Participatory Approaches in Informal Care Research

Participatory approaches are increasingly recognized as essential in researching the health and well-being of older adults and their informal caregivers, enabling deeper engagement with the lived experiences of those involved in caregiving. This paper highlights the significance of employing participatory methods in studying informal care, drawing insights from two projects: INTERCARE, focusing on young caregivers in education, and SIWSON, examining informal caregiving for older individuals with dementia.

Early findings from INTERCARE indicate that young carers face significant challenges in balancing caregiving responsibilities with educational commitments, leading to increased stress and decreased academic performance. By engaging young caregivers and persons they care for in participatory manner the project ensures that the research accurately reflects their real-life challenges and needs.

The SIWSON project addresses the experiences of informal caregivers during the early stages of caregiving for individuals with dementia. Participatory methods capture the complexities of stress and social exclusion experienced by caregivers, revealing that those who lack support networks report higher levels of emotional distress. Insights gained from caregiver involvement emphasize the need for targeted interventions that strengthen social connections and improve mental well-being.

Participatory methods are critical in this both projects as they facilitate a comprehensive understanding of caregiving's impact beyond clinical symptoms by incorporating the social dimensions of caregivers' experiences. This approach not only identifies gaps in existing support systems but also co-creates solutions that directly respond to caregivers' needs, ultimately enhancing the health and well-being of older adults.This paper argues that participatory approaches are crucial for researching informal care, ensuring that caregivers’ voices are central to the inquiry, leading to findings that are more accurate, relevant, and actionable.