Associations between support service usage and social connectedness in those with lived experience of rare dementias
Bibliographic record
Abstract
Abstract 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.
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.001 | 0.009 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.001 |
| Bibliometrics | 0.002 | 0.001 |
| Science and technology studies | 0.001 | 0.000 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.001 | 0.002 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.004 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".