Associations between support service usage and social connectedness in those with lived experience of rare dementias
Authors: Brotherhood Emilie V , Wood Olivia K , Waddington Claire , Hayes Oliver S , Harding Emma , Baou Celine El , Williams Millie van der Byl , Street Rebecca E , Zimmermann Nikki , Hoare Zoe , Camic Paul , Tudor‐Edwards Rhiannon , McKee‐Jackson Roberta , Stott Joshua , Sullivan Mary Pat , Windle Gill , Crutch Sebastian J 
Published: December 2023

Background

Disease‐specific and general support is available for individuals experiencing rare [genetic and/or non‐memory‐led] dementia, broadly categorised into: professionally‐led [e.g. interacting with specialist support teams/resources] or socially‐oriented [e.g. large/small groups, buddying, online fora, and social media] offers. Membership of and engagement with different social networks may help to maintain emotional wellbeing in people living with/alongside dementia. Understanding the relationship between support service use and social connectedness, at different disease and life stages, will enable healthcare professionals to make evidence‐based individualised recommendations for support.

Method

207 participants either living with (PLWD N = 51) or alongside a rare dementia (Caregiver N = 156) provided responses via videoconference and online survey about support usage, and social connectedness. Support usage was characterised by (a) range of usage (indicated by number of different support formats accessed at least once); (b) frequency of usage rated using 4‐point Likert scales relating to 11 different types of support available. Level of social connectedness was ascertained through standardised scales: Social Network Index (SNI); De Jong Gierveld Loneliness Scale (6‐item), and Lubben Social Network Scale of social engagement (LSNS‐6). Associations between support usage and connectedness were examined separately for all/socially‐oriented support using multiple linear regressions covarying for group (PLWD/caregiver), gender, severity and age.

Result

Range of support usage was significantly associated with greater social engagement (LSNS‐6: 0.071[0.003,0.139]), greater social network size (SNI:0.035[0.001,0.068]) and fewer networks (SNI: ‐0.486[‐0.947,‐0.026]). Both frequency of all‐support‐type usage and range of socially‐oriented support access was additionally associated with greater social engagement (LSNS‐6: 0.195[0.022,0.369] and 0.044[0.001,0.086] respectively). Usage across all and socially‐oriented support types was significantly associated with group (PLWD>Carers: all‐types frequency = 2.102[0.104,4.101]; social‐only frequency = 1.620[0.242,2.997]), and greater disease severity (years since diagnosis: all types frequency = 0.361[0.047,0.674]; social‐only frequency = 0.354[0.138,0.570] and social‐only range = 0.124[0.046,0.201]). Usage across all support was significantly associated with younger membership (Frequency = ‐0.125[‐0.220,‐0.030]; Range = ‐0.051[‐0.088,‐0.013]).

Conclusion

Preliminary analysis indicates a relationship between range and frequency of support usage and social connectedness. The role of individual factors in and complexity of relationship between support usage and social connectedness underlines the need for co‐ordinated person‐centred provision of information‐ and socially‐based services.