EXPLORING THE EXPERIENCES OF CAREGIVERS OF NEWLY DIAGNOSED DEMENTIA PATIENTS: A QUALITATIVE DESCRIPTIVE STUDY

Abstract

Aim: This study aims to explore the experiences and perceptions of caregivers caring for newly diagnosed dementia patients, the challenges they faced as well as their current needs while transitioning into their caregiving role. Background: There were many studies exploring the experiences of new caregivers transitioning into the caregiving role. However, there is a lack of studies studying this phenomenon in an Asian context. With the growing number of older adults being diagnosed with dementia and the ageing population in Singapore, it is imperative to explore the needs and experiences of people who are caring for them. Methods: This study uses a descriptive qualitative design. Face-to-face interviews were conducted using a semi-structured interview guide. Interviews with new caregivers caring for their loved ones, who recently received a dementia diagnosis within one month, were audio recorded and transcribed verbatim. The transcripts were then analyzed using thematic analysis. Results: Four themes emerged from the thematic analysis. The first narrating the experiences of caregivers “Receiving the diagnosis”. The second and third theme depicts the transitional process of the participants into their caregiving roles: “Reacting to caregiving” and “Responding to change”. The last theme “Recalibrating for tomorrow” explains the fears and needs of the caregivers with regards to the care of their loved ones with dementia. Conclusion: This study presents the experiences of new caregivers and their transitional process into the caregiving role. The results drive future qualitative studies to be conducted to explore more about the information needs of the dementia patients and their caregivers, as well as the introduction of advanced care planning to caregivers and patients in early dementia. Additionally, novel sources of information can be explored in interventional studies in order to fulfil the caregivers’ information needs.