Full bibliography

Dementia is a progressive cognitive disease affecting 55 million people worldwide. Each of these 55 million people needs at least one caregiver to support them as dementia progresses. By exploring home-based caregiving as a process, I attempt to highlight how a bioecological approach to study caregivers could shed some light on issues currently unidentified by extant caregiving studies. A bioecological approach also shows the systemic implications to caregivers’ human development due to the proximal processes between the care recipient and the caregiver. Nine Singaporean Chinese caregivers with at least three years of dementia caregiving experience were interviewed and analysed using thematic analysis. Research findings reveal three major themes of (a) human development with subthemes of self-growth and self-preservation, (b) proximal processes between caregiver and care recipient with subthemes of rollercoaster of emotions, meaning-making and adaptive behaviours and (c) bioecological effects of dementia caregiving with subthemes of role engulfment and support from others. By using a bioecological approach, this study moves beyond conventional themes frequently explored in extant caregiver literature, such as caregiver burdens and gains. The findings from these studies extend beyond Singaporean and Asian caregivers with relevance to caregivers worldwide, as dementia is a global healthcare condition with common challenges faced by caregivers worldwide. My research findings shed light on how the caregiver’s systemic interactions with principal persons such as the care recipient’s spouse, siblings and helpers play crucial roles in sustaining the caregiver’s wellbeing and enable them to carry on caregiving. This study advocates that caregivers continue their caregiving journey because of systemic support from principal persons and the relationship with the care recipient. The implications of these research findings are discussed from a microsystemic perspective, focusing on the individual caregiver, and mesosystemic, exosystemic and macrosystemic perspectives, focusing on society, community and government policies. Taking a systemic approach, practical suggestions include counselling support and psychotherapeutic interventions for caregivers throughout their caregiving journey to improve personal happiness, more proactive and microsystemic support from grassroots and public agencies focusing on the early days of a caregiver’s journey to improve caregiver visibility, reduce feelings of isolation and provide support. Increasing the profile of caregivers in the public domain could also promote a sense of visibility and recognition of individual caregivers. By helping caregivers, society could keep people living with dementia in family-level care and reduce public healthcare costs and reliance on formal institutions.