Stories of the Impact on the Family When One Member Has Been Given a Diagnosis of Dementia

Biomedical models of dementia dominate UK policy and practice guidelines but can be criticised for neglecting personal, social and contextual factors. The medicalisation of dementia benefits powerful groups whilst shaping the narratives of people with dementia labels (PwDL) in line with dominant discourses of deficit and loss. Personhood has similarly been criticised for neglecting broader sociocultural factors that pervade the experience of dementia. A more recent movement towards understanding the impact of dementia from a relational focus has been narrowly conceptualised, as research usually only involves one significant other and does not consider the interaction of narrative strategies that family members employ.
Taking into consideration the limitations of previous research, this thesis drew upon narrative inquiry using a social constructionist epistemology to interview one family together, including the PwDL, to understand how they have made sense of dementia. By additionally interviewing the family members separately it was possible to explore how the impact of cognitive and functional difficulties has been co-constructed. In this way, it was hoped that the contribution of the family to scaffold or undermine PwDL identity could be discerned. Frank’s (2012) Dialogical Narrative Analysis was adapted to incorporate a systemic lens and was used to analyse interview data.
This research suggested that the experience of dementia is shaped by multiple personal, interpersonal and sociocultural factors, which interact to determine the way PwDL and their family members adjust to cognitive and functional changes (Górska, Forsyth & Maciver, 2017). In addition, a dementia diagnosis may be so threatening for some PwDL that their experiences may be best framed using a trauma lens. Clinical implications concern systemic and narrative approaches which may facilitate PwDL and their families to re-story their experiences, retain “empathic access” (Schechtman, 2003:245) to the past whilst re-defining identity, and maintain family connections. Health-care professionals can also advise policy-makers and the media to challenge dominant discourses around dementia and prevent the marginalisation and potential traumatisation of PwDL. Research implications concern further exploration of ways in which the personal, interpersonal and sociocultural interact by interviewing more families, from diverse backgrounds, over the longer term, and using a trauma lens.