'Dementia has got two faces': grief as an experience of holding on and letting go for people living with primary progressive aphasia and posterior cortical atrophy.

Abstract

Background: research on grief in people with primary progressive aphasia (PPA) and posterior cortical atrophy (PCA), is limited, despite the unique challenges these individuals face due to lack of understanding of their condition, younger age at onset and atypical symptom profile. The current study explores the losses people living with PPA or PCA experience and what helps to navigate these losses.

Methods: in-depth semi-structured research conversations were conducted with 14 participants (n = 8 PCA, 6 PPA) to explore experiences of grief and loss related to their dementia. Data was analysed using abductive thematic coding techniques.

Results: the impact and navigation of loss is reflected across five interconnecting themes: what I have lost, am losing and will lose, shared and unique sense of loss, balance between what is lost and what remains, changes in relationships and what helps in navigating loss.

Conclusions: the dynamic interplay between what participants had lost and what they held on to carries significant implications for the design and delivery of support. These findings will be used alongside existing grief theory and interventional frameworks to develop a psychosocial intervention for people living with dementia.