Richard Whitefield (Chartered Accountant, MsC Psychological Sciences)
Contact details
Current research interests
Dementia Carers Young Onset dementiaProject activity
Abstract
Navigating the Biographical Journey: A Qualitative Study of Spousal Caregivers' Experiences from Pre-Diagnosis to Post Caregiving in Young-Onset Dementia
Richard Whitefield
Under the supervision of Dr Edgar Rodriguez-Dorans and Dr Paula Jacobs
This qualitative research study explores how spouses and partners of individuals diagnosed with young-onset dementia (YOD), navigate the evolving biographical journey from the pre-diagnosis phase through to caregiving and into life after caregiving.
YOD, defined as a dementia diagnosis before the age of 65, represents less than 5% of dementia diagnoses, presenting unique challenges given that it occurs during midlife, often disrupting family roles, working and social lives, finances, identity, and future expectations.
Guided by an interpretivist/constructionist research paradigm, the study assumes a relativist ontology in which multiple realities are constructed through lived experience, and an interpretivist–subjectivist epistemology that recognises knowledge as being co-created between the researcher and the purposive participant.
A blended methodological approach is proposed, comprising narrative inquiry (NI), interpretative phenomenological analysis (IPA), and longitudinal qualitative research. NI offers participants the opportunity to recall their unique experiences and share their personal stories, highlighting how meaning is constructed. IPA provides a detailed exploration of how the participants interpret and make sense of significant life transitions as a result of the diagnosis, including their caregiving responsibilities over time, and the untimely bereavement of their loved one, leading to their post-caregiving adjustment. The longitudinal design would allow examination of how meanings, identities, and coping strategies evolve over the trajectory of the disease.
By focusing on lived experiences across time, the study aims to generate rich insights into identity reconstruction, relational change, and emotional adaptation. It is anticipated that findings will contribute to a deeper understanding of the long-term internal impact of YOD, informing greater awareness of a remarkably under-researched topic, leading to more relevant and accessible support services and policy development.