• 'All the world's a stage': Accounting for the dementia experience - insights from the IDEAL study

      Hillman, A.; Jones, I.R.; Quinn, Catherine; Nelis, S.M.; Lamont, R.A.; Clare, L. (2020-10)
      Qualitative dementia research emphasises the importance of recognising the voice of the person with dementia. However, research imbued with a politics of selfhood, whereby individuals are called upon to give coherence to experience and emotion, jars with representations of dementia as a gradual decline in capacity. Moreover, it reinforces an assumption that there is an essential experience that can be accessed through different methods. Drawing on Atkinson and Silverman, we view the interview not as confessional but rather as an outcome of social interaction. This paper draws on qualitative interviews from the Improving the Experince of Dementia and Enhancing Active Life (IDEAL) study, to focus specifically on the forms of accounting and storytelling of people living with dementia and how these are produced through the course of the interview encounter. Extracts from our interviews highlight key aspects of this interactional process: (a) social conventions and temporality, (b) self presentation and identity work, (c) accounts and wider cultural meanings. To conclude, we suggest that qualitative research with people with dementia requires a reframing of both the interview encounter and interpretive practices.
    • 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.
    • Inequalities in living well with dementia-The impact of deprivation on well-being, quality of life and life satisfaction: Results from the improving the experience of dementia and enhancing active life study

      Wu, Y.-T.; Clare, L.; Jones, I.R.; Martyr, A.; Nelis, S.M.; Quinn, Catherine; Victor, C.R.; Lamont, R.A.; Rippon, I.; Matthews, F.E.; et al. (2018-12)
      Area level factors, such as deprivation and urban/rural settings, have been associated with variation in local resources and services and health inequality in later life. The aim of this study is to investigate the potential impact of deprivation and urban/rural areas on capability to live well with dementia and to examine whether availability of informal carers modified the associations. The analysis was based on a large cohort study of 1547 community-dwelling people with dementia across Great Britain. Quality of life, life satisfaction, and well-being were measured as indices of "living well." Multivariate modelling was used to investigate differences in living well measures across deprivation quintiles and urban/rural areas adjusting for sociodemographic factors and number of comorbidities and stratifying by three groups: those living with a carer, those with a noncoresident carer and those without a carer. Negative dose-response relationships between deprivation and measures of quality of life (-2.12; 95% CI: -3.52, -0.73), life satisfaction (-1.27; 95% CI: -2.70, 0.16), and well-being (-5.24; 95% CI: -10.11, -0.36) were found in participants living with a carer. The associations were less clear in those with a noncoresident carer and those without a carer but these two groups generally reported lower scores on living well indicators than participants living with a carer. There was no urban/rural difference. The findings suggest inequalities in living well with dementia according to levels of deprivation. Additional resources are needed to improve postdiagnostic care in highly deprived areas and support those who have no informal carer.
    • Living well with dementia: a systematic review and correlational meta-analysis of factors associated with quality of life, well-being and life satisfaction in people with dementia

      Martyr, A.; Nelis, S.M.; Quinn, Catherine; Wu, Y.-T.; Lamont, R.A.; Henderson, C.; Clarke, R.; Hindle, J.V.; Thom, J.M.; Jones, I.R.; et al. (2018-10)
      Current policy emphasises the importance of 'living well' with dementia, but there has been no comprehensive synthesis of the factors related to quality of life (QoL), subjective well-being or life satisfaction in people with dementia. We examined the available evidence in a systematic review and meta-analysis. We searched electronic databases until 7 January 2016 for observational studies investigating factors associated with QoL, well-being and life satisfaction in people with dementia. Articles had to provide quantitative data and include ⩾75% people with dementia of any type or severity. We included 198 QoL studies taken from 272 articles in the meta-analysis. The analysis focused on 43 factors with sufficient data, relating to 37639 people with dementia. Generally, these factors were significantly associated with QoL, but effect sizes were often small (0.1-0.29) or negligible (<0.09). Factors reflecting relationships, social engagement and functional ability were associated with better QoL. Factors indicative of poorer physical and mental health (including depression and other neuropsychiatric symptoms) and poorer carer well-being were associated with poorer QoL. Longitudinal evidence about predictors of QoL was limited. There was a considerable between-study heterogeneity. The pattern of numerous predominantly small associations with QoL suggests a need to reconsider approaches to understanding and assessing living well with dementia.
    • The perceived and objective availability of green and blue spaces and quality of life in people with dementia: results from the IDEAL programme

      Wu, Y.T.; Clare, L.; Jones, I.R.; Nelis, S.M.; Quinn, Catherine; Martyr, A.; Victor, C.R.; Lamont, R.A.; Rippon, I.; Matthews, F.E. (2021-09)
      The aim of this study was to investigate the associations between quality of life and both perceived and objective availability of local green and blue spaces in people with dementia, including potential variation across rural/urban settings and those with/without opportunities to go outdoors. This study was based on 1540 community-dwelling people with dementia in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) programme. Quality of life was measured by the Quality of Life in Alzheimer’s Disease (QoL-AD) scale. A list of 12 types of green and blue spaces was used to measure perceived availability while objective availability was estimated using geographic information system data. Regression modelling was employed to investigate the associations of quality of life with perceived and objective availability of green and blue spaces, adjusting for individual factors and deprivation level. Interaction terms with rural/urban areas or opportunities to go outdoors were fitted to test whether the associations differed across these subgroups. Higher QoL-AD scores were associated with higher perceived availability of local green and blue spaces (0.82; 95%CI: 0.06, 1.58) but not objective availability. The positive association between perceived availability and quality of life was stronger for urban (1.50; 95%CI: 0.52, 2.48) than rural residents but did not differ between participants with and without opportunities to go outdoors Only perceived availability was related to quality of life in people with dementia. Future research may investigate how people with dementia utilise green and blue spaces and improve dementia-friendliness of these spaces.
    • Protocol for the IDEAL-2 longitudinal study: following the experiences of people with dementia and their primary carers to understand what contributes to living well with dementia and enhances active life

      Silarova, B.; Nelis, S.M.; Ashworth, R.M.; Ballard, C.; Bienkiewicz, M.; Henderson, C.; Hillman, A.; Hindle, J.V.; Hughes, J.C.; Lamont, R.A.; et al. (2018-10)
      There is a major need for longitudinal research examining the experiences of people with dementia and their primary carers, as relatively little is known about how the factors associated with capability to ‘live well’ vary over time. The main aim of the IDEAL-2 study is to investigate how and why, over time, people with dementia and their primary carers might vary in their capability to live well with dementia, whilst exploring both their use of health and care services and their unmet needs. IDEAL-2 will build on the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort of 1547 people (who, at recruitment between July 2014 and July 2016, had mild-to-moderate dementia), and their 1283 primary carers in Great Britain. The existing cohort will be enriched with additional participants with mild-to-moderate dementia (and their primary carers where available and willing) from the following groups: people with rarer forms of dementia, and/or those who are ≥90 years or < 65 years of age at time of recruitment. We will assess the primary outcome, capability to live well with dementia, and the factors influencing it using questionnaires at yearly intervals for 3 years. Additionally, we will seek to link the cohort data with administrative data to obtain information about health service use. Some participants will be invited for in-depth face-to-face interviews. The cohort study will be supplemented by linked research focusing on: the co-production of new measures of living well; including the perspectives of people with advanced dementia living in residential care settings; including people with dementia from black, Asian, and minority ethnic groups; and understanding the experience of people living with undiagnosed dementia. IDEAL-2 will provide evidence about the key indicators of, and factors associated with, living well over the course of dementia and how these differ for particular subgroups. It will tell us which combinations of services and support are most beneficial and cost-effective. Moreover, the IDEAL-2 study will gather evidence from underresearched groups of people with dementia, who are likely to have their own distinct perceptions of living well.
    • Psychological predictors of 'living well' with dementia: findings from the IDEAL study

      Lamont, R.A.; Nelis, S.M.; Quinn, Catherine; Martyr, A.; Rippon, I.; Kopelman, M.D.; Hindle, J.V.; Jones, R.W.; Litherland, R.; Clare, L. (2019)
      ncreasingly, research has explored how psychological resources enable adaptation to illness. However, it is unclear whether psychological resources protect against the potential negative effects on living well with a progressive and life-limiting condition such as dementia. This paper examines the association between psychological resources and the ability to ‘live well’ with dementia. Data from 1547 people with mild-to-moderate dementia in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort were used. Multivariate linear regression was employed to examine the association between self-reported measures of psychological resources (self-efficacy, optimism and self-esteem) and indices of capability to ‘live well’ (quality of life, well-being and life satisfaction). All three measures of psychological resources had positive and independent associations with indices of living well and the effect sizes were similar. Effect sizes reduced when accounting for shared variance between psychological resources, showing some overlap in these constructs. Self-efficacy, optimism and self-esteem were each associated with capability to ‘live well’. Overlap between these three resources is evident and when combined they may provide greater resilience when dealing with the challenges of living with dementia. Interventions for people with dementia could seek to improve levels of these potentially-modifiable psychological resources.
    • Self-esteem, self-efficacy and optimism as psychological resources among family caregivers of people with dementia: findings from the IDEAL study

      Lamont, R.A.; Quinn, Catherine; Nelis, S.M.; Martyr, A.; Rusted, J.M.; Hindle, J.V.; Longdon, B.; Clare, L. (2019-09)
      Being a family caregiver, and in particular giving care to someone with dementia, impacts upon mental and physical health, and potentially reduces the ability of caregivers to ‘live well’. This paper examines whether three key psychological resources, self-efficacy, optimism and self-esteem, are associated with better outcomes for caregivers of people with dementia. Design and Participants Caregivers of 1283 people with mild-to-moderate dementia in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) project responded to measures of selfefficacy, optimism and self-esteem, and ‘living well’ (quality of life, life satisfaction and well-being). Multivariate linear regression was used to examine the association between psychological resources and ‘living well’. Results Self-efficacy, optimism and self-esteem were all independently associated with better capability to ‘live well’ for caregivers. This association persisted when accounting for a number of potential confounding variables (age group, sex, and hours of caregiving per day). Conclusions Low self-efficacy, optimism and self-esteem might present a risk of poor outcomes for caregivers of people with dementia. These findings encourage us to consider how new or established interventions might increase the psychological resilience of caregivers.