Background: A high degree of burden is often experienced by informal caregivers of stroke survivors. However, little is known about the long-term impact of the caregiving role. This study sought to examine the relationship between social support and the psychological effects experienced by long-term caregivers of stroke survivors. Methods: The design was a prospective, multicentre, hospital-based stroke cohort study with 3 years of follow-up. Caregivers of participating stroke survivors completed questionnaires either through face-to-face interview or over the telephone. Primary outcome measures were the Medical Outcome Study (MOS) Social Support Survey and the Irritability, Depression, and Anxiety (IDA) Scale, and the association between them was investigated using multivariate logistic regression. Results: 174/217 (80%) stroke survivors participated at 3 years, involving 116 informal caregivers (mean age 66.9 years, 71% female). Increasing social support was correlated with lower levels of depression, anxiety and inward irritability in caregivers. Social support was independently associated with anxiety (OR 0.55, 95% CI 0.35–0.85; p = .007) and inward irritability (OR 0.47, 95% CI 0.29–0.77; p = .002). Furthermore, social support was significantly associated with carer strain, as assessed by the Caregiver Strain Index. Conclusions: The amount of social support available to long-term caregivers of stroke survivors may be an important factor in lowering psychological burden in these caregivers.

Background: A carer-held record (CHR) was developed to enable carers to contribute to care plans for their relatives with dementia, alongside other professionals. The aim of this study was to establish whether CHRs provide any measurable benefits for carers, in the areas of health, stress, knowledge of dementia and locus of control.

Methods: This was a controlled parallel-group trial involving 84 carer/patient pairs, drawn from all new referrals to two community mental health teams (CMHTs). Subjects from one CMHT were given CHRs. The control group from the other CMHT were not offered the initiative. Carers in both groups completed instruments measuring knowledge of dementia, carer stress and strain, carer health, and locus of control (internal, external, chance, shared care) at three time points: baseline, 6 months and 1 year.

Results: Findings are reported for outcome at 6 months and 1 year on 51 carer/patient pairs. Having a CHR was associated with significantly reduced scores on the Carer Strain Index at 1 year (mean between-group difference: −1.34, 95% CI −2.67 to −0.02). Regarding locus of control, external control scores were significantly lower in the intervention group, by 2.5 points at 6 months (95% CI −4.82 to −0.18) and 3.43 points at 1 year (95% CI −5.57 to −1.29) (p = 0.01). There was a significant group by time interaction in chance control, with the difference in chance control between groups widening between 6 and 12 months. In the shared care dimension of locus of control, there was no difference at 6 months, but a significant group by time interaction, with the intervention group maintaining a higher level of internal control between 6 and 12 months, while the control group reduced. No significant differences were identified in the domains of carer health or knowledge of dementia.

Conclusions: Although not a randomized controlled trial, and limited by smaller sample size than planned, this study indicates that use of CHRs provides some benefits for carers in the domains of carer strain and locus of control.