The impact of stroke survivors' behavioral and psychological symptoms on informal caregivers' mental health

Background. Behavioral and psychological symptoms (BPS) exhibited by stroke survivors are becoming recognized as significant contributors to informal caregivers' (IC) emotional distress (depression symptoms). Unfortunately, common methodological limitations, including sample, measures, and research design, limit the generalizability of findings. In addition, BPS are considered a global construct, but it is more likely that domains of BPS may differentially affect IC mental health.;Objectives. (1) Determine the contribution of BPS to IC emotional distress after controlling for other important aspects of the care situation; (2) identify the domains of BPS; (3) determine if IC emotional distress changes during the first year post-stroke; and (4) identify the specific domains of BPS that are associated with IC emotional distress.;Method. Three studies were conducted to achieve these objectives. Study one (objective one) entailed a cross-sectional study of IC to stroke survivors. Linear regression determined the contribution of BPS to IC emotional distress after controlling for other important factors. Study two (objective two) determined the domains of BPS by exploratory factor analysis. Study three (objectives three and four) used a longitudinal repeated-assessment (one, three, six and 12 months post-stroke) cohort study of survivors of their first stroke and their IC. Individual growth curve modeling evaluated change in emotional distress over time and identified the domains of BPS associated with IC emotional distress.;Results. In study one, BPS explained 8% (p < .001) of the variability in emotional distress after controlling for level of care provided, lifestyle interference, and mastery. Study two identified four domains of BPS including apathy, depression, comprehension/memory difficulties, and irritability. Study three did not observe a change in emotional distress during this first year and depression symptoms were the only BPS associated with IC emotional distress. Overall, IC experienced more emotional distress when stroke survivors had more depression symptoms and physical disability, and caregivers experienced more lifestyle interference, were younger, female, in poorer physical health, and had less mastery.;Conclusion. This research highlights the importance of assisting IC to: (1) manage BPS, (2) maintain valued aspects of their lifestyle, and (3) enhance their sense of control over the care situation.