• Caregiver influences on 'living well' for people with dementia: Findings from the IDEAL study.

      Quinn, Catherine; Nelis, S.M.; Martyr, A.; Morris, R.G.; Victor, C.; Clare, L. (2019-05)
      Objectives: The capability to ‘live well’ in people with dementia can be influenced by many factors, including those related to the experiences of their informal caregiver. How caregivers experience their own role can affect not only their well-being but also the way they provide care and hence the experience of the person with dementia. The aim of this study is to identify the potential impact of the caregiver’s perception of the caregiving experience on how people with mild to moderate dementia self-rate their QoL, well-being and satisfaction with life. Method: This study utilised time-point 1 data from 1283 informal caregiver and the 1283 people with dementia whom they provide care from the IDEAL cohort study. Multivariate modelling was used to investigate the associations between measures related to the caregiver’s perception of the caregiving experience (caregiving stress, perceived social restrictions, caregiving competence, positive aspects of caregiving, and coping) and the self-ratings of QoL, satisfaction with life, and well-being by the person with dementia. Results: Lower QoL ratings by the person with dementia were associated with high caregiver stress (−1.98; 95% CI: −2.89, −1.07), high perceived social restrictions (−2.04; 95% CI: −2.94, −1.14) and low caregiving competence (−2.01; 95% CI: −2.95, −1.06). Similar associations were found for satisfaction with life and wellbeing. Positive aspects of caregiving and coping were not associated with outcomes for the person with dementia. Conclusion: The findings indicate that how the caregiver experiences caregiving can affect the person with dementia. This finding reinforces the importance of providing support to caregivers.
    • A Comprehensive Model of Factors Associated with Capability to "live Well" for Family Caregivers of People Living with Mild-to-Moderate Dementia: Findings from the IDEAL Study

      Clare, L.; Wu, Y.-T.; Quinn, Catherine; Jones, I.R.; Victor, C.R.; Nelis, S.M.; Martyr, A.; Litherland, R.; Pickett, J.A.; Hindle, J.V.; et al. (2019)
      Understanding key influences on outcomes for caregivers of people with dementia is hampered by inconsistent conceptualization and measurement of outcomes and limited evidence about the relative impact of different variables. We aimed to address these issues. We analyzed data from 1283 caregivers of community-dwelling individuals with mild-to-moderate dementia in the Improving the experience of Dementia and Enhancing Active Life cohort study. We generated a “living well” latent factor from measures of quality of life, satisfaction with life, and well-being. We used structural equation modelling to derive latent variables for 7 domains reflecting caregivers’ perceptions of their personal resources and experiences, and to examine the associations with caregivers’ perceptions of their capability to “live well.” The domain of psychological characteristics and psychological health was most strongly related to living well [2.53; 95% confidence interval (CI), 2.08-2.97], followed by physical fitness and physical health (1.48; 95% CI, 1.04-1.91) and experiencing caregiving (1.34; 95% CI, 0.99-1.70). Social capitals, assets and resources (0.68; 95% CI, 0.35-1.00) and relationship with the person with dementia (−0.22; 95% CI, −0.41 to −0.03) had smaller, significant associations. Social location (0.28; 95% CI, −0.33 to 0.89) and managing everyday life with dementia (0.06; 95% CI, −0.15 to 0.28) were not significantly associated with living well. These findings demonstrate the importance of supporting caregivers’ psychological and physical health and their ability to develop and maintain positive coping strategies, as well as enabling them to maintain vital social capitals, assets and resources.
    • A comprehensive model of factors associated with subjective perceptions of "living well" with dementia: findings from the IDEAL study

      Clare, L.; Wu, Y-T.; Jones, I.R.; Victor, C.R.; Nelis, S.M.; Martyr, A.; Quinn, Catherine; Litherland, R.; Pickett, J.A.; Hindle, J.V.; et al. (2019-01)
      Introduction: We aimed to better understand what predicts the capability to “live well” with dementia by identifying the relative contribution of life domains associated with the subjective experience of living well. Methods: We analyzed data from 1547 individuals with mild-to-moderate dementia in the IDEAL cohort. We generated a “living well” latent factor from measures of quality of life, satisfaction with life, and well-being. We used multivariate modeling to identify variables related to living well measures and structural equation modeling to derive latent variables for 5 life domains and to examine the associations of these domains with living well. Results: All 5 domains were individually associated with living well. When modeled together, the psychological characteristics and psychological health domain was the only independent predictor of living well [effect size, 3.55; 95% confidence interval (CI): 2.93-4.17], and effect sizes were smaller for physical fitness and physical health (1.23, 95% CI: −0.10 to 2.58), social capitals, assets and resources (0.67; 95% CI: −0.04 to 1.38), managing everyday life with dementia (0.33; 95% CI: −0.06 to 0.71), and social location (0.08; 95% CI: −2.10 to 2.26). Discussion: Psychological resources, and the social, environmental, and physical factors that underpin positive psychological states, are potentially important targets for interventions and initiatives that aim to improve the experience of living with dementia.