An unanticipated journey within the landscape of care

Ahead of her seminar on 18 November, Jo Alexjuk reflects on her own journey in undertaking research into anticipatory grief, loss and bereavement of carers of people with dementia:

It was a pleasure to be asked by colleagues within the School of Health in Social Science to present at the CRFR Emotions Seminar Series this semester. They were particularly interested in my doctoral research which relates to: The journey from dementia diagnosis to final bereavement: an exploration of anticipatory grief, loss and bereavement experienced by carers of people with dementia. I felt this topic was extremely pertinent to the content requirements of the series, however, their request made me stop and think about my own ‘journey’ in undertaking this research and reflect on aspects that, for me at least, were totally unanticipated.

Research undertaken within the field of social sciences often reports on the ‘facts and stats’, the emotional experiences of the study participants: particularly with regard to research undertaken within the field of dementia care. Yet, as researchers employing research methods - whether utilising quantitative, mixed methods or as in my case a qualitative hermeneutic phenomenological approach - are we in actual fact ‘method researchers’? By this I mean are we akin to method actors? Are we the Meryl Streep or Robert de Nero of the research world who, especially with regard to phenomenology, impartially bring and immerse ourselves into the life-world, the lived-experience of others? And once the research is completed, do we withdraw with the ‘results or findings’, without acquiring any emotional residue from that experience?

My research journey began in 2008 and although I was pragmatic in my view towards my research role, for example in choosing my topic, how long the process may take and what I may encounter, I was nonetheless full of optimism. However, seven years on having experienced six close family bereavements (three of which were dementia-related) and a serious road accident involving my mother, I felt that I have been repeatedly thrown into a dual ‘role’ of family-caregiver and family-caregiver researcher.

On reflection this duality of roles has not been problematic insofar as my experience has offered a ‘truer’, more empathic approach to my research, which I felt that I already possessed, but perhaps hadn’t always previously maintained. The elucidation of a deeper understanding of the ‘lived experience’, the perceived and understood reality of the experiential ‘journeys’ of caregivers has resonated with me deeply.

During the research process I was always cognisant in adhering to professional boundaries with regard to my research aims and methodological application, but equally mindful of carer-participants’ expressions that caregiving is about more than the cognitive losses experienced by the person with dementia. There are also the physical and emotional experiences acquired by caregivers during and beyond their caring role.

Looking back over my research journey I have not only acquired an in-depth experiential perspective of caregivers of people with dementia, but I have also attained a personal understanding of the landscape of dementia care. My unanticipated journey will end with the submission of my PhD dissertation in April 2016, although I do anticipate future research journeys within this landscape of care.


Jo Alexjuk is a Lecturer in Dementia and Programme Director of the MSc in Dementia: International Experience Policy and Practice within the School of Health in Social Science, University of Edinburgh, as well as a member of the Edinburgh - Centre for Research on the Experience of Dementia: E-CRED. She is particularly interested in grief, loss and end-of-life care experiences of people living with dementia, whether they are family carers or people with dementia themselves. For further information contact Jo at ealexjuk@ed.ac.uk.

Jo Alexjuk’s seminar An unanticipated journey within the landscape of care will be held at CRFR on 18th November (12-2pm). To book a place email crfr.events@ed.ac.uk or call 0131 651 1832