TY  - JOUR
AU  - McCormack, Lynne
AU  - Walmsley, Bruce
PY  - 2018
DA  - 2018/10/08
TI  - Dementia: Aloneness, Social and Relational Engagement, and Psychological Growth in Families
JO  - OBM Geriatrics
SP  - 013
VL  - 02
IS  - 04
AB  - Background: Minimal research investigates negative and positive perspectives of wellbeing in families, when a member with dementia is limited in their speech, or speech is absent.  

Methods: Seeking to explore this phenomenon further, semi-structured interviews sought negative and positive subjective interpretations from 27 family carers (mild to profound dementia). Interviews explored the participants’ experience of changing relational and social engagement when a family member lives with dementia. Data were analysed using the protocols of Interpretive Phenomenological Analysis.

Results: One superordinate theme, Lost and found, described family carers struggle to make sense of ambiguous and inconsistent social engagement in a member with dementia.   It overarched three sub-themes: Aloneness; Engagement and Psychological growth. First, these participants describe a growing sense of isolation that accompanied unexpected societal stigma towards themselves and their family member with dementia, and consequential feelings of shame. Second, seeking solace in their family group, carers rediscovered opportunities for more intimate engagement rooted in familial bonds, familiarity and trust. Third, in response to their experiences of aloneness and stigma associated with dementia, personal integrity became the conduit for psychological growth where ‘self’ was able to nurture hope, acceptance, meaning and advocacy. 

Conclusions: Family carers’ acceptance of a need to be more adaptive brought positive redefinitions of self and relationships within the family group.  As a result, Relational Social Engagement (RSE) during family interactions was something to be enjoyed despite the distress of loss and uncertainty.  These findings can inform health professional support.
SN  - 2638-1311
UR  - https://doi.org/10.21926/obm.geriatr.1804013
DO  - 10.21926/obm.geriatr.1804013
ID  - McCormack2018
ER  -