Disquieting disconnection: Finding meaning and purpose in life when journeying with a partner who lived and died with Semantic Younger Onset Dementia

This research explored the phenomenon of disquieting disconnection as experienced within a lifelong relationship as a consequence of the impact upon personhood when journeying with a partner who lived and died with Semantic Younger Onset Dementia (S-YOD). This study was informed by a heuristic approach to enquiry using Moustakas’ (1994) method, providing congruence when addressing the lived experience of the spouse, the lone subject, who was experiencing disquieting disconnections. Three major themes were identified during this research journey of finding meaning and purpose in life: ‘Feeling Abandoned’, ‘There Are No Words’ and ‘Running in the Opposite Direction’. Constant immersion in the heuristic process led to the acquisition of new realisations. The main themes along with associated sub-themes and/or paradoxes were integrated and the accompanying creative synthesis of the experience evolved. This provided a depiction of a process of grieving, expressed within a thematic conceptualisation entitled ‘Seasons of Grief’. Paradoxically, the strength of this research can be viewed as its limitation. In essence, it is one person’s journey, providing intensity and detail, however it is one person’s perspective. It is the recommendation there be further studies highlighting the experience of others. The more lenses we are provided to look through, the richer our understanding will become. More studies on spousal experiences of living, loving and grieving a partner who lives and dies with YOD are required, in particular from those who represent minority groups. Key words: disquieting disconnections, younger onset dementia, heuristic, grief, lesbian