• '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.
    • 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.
    • Caregivers' beliefs about dementia: findings from the IDEAL study

      Quinn, Catherine; Jones, I.R.; Martyr, A.; Nelis, S.M.; Morris, R.G.; Clare, L.; IDEAL Study Team (2019)
      Objective: Informal caregivers of people with dementia develop their own beliefs about the condition, referred to as Dementia Representations (DRs), as they try to make sense of the changes they are observing. The first aim of this study was to provide a profile of the types of DRs held by caregivers. The second aim was to examine the impact of caregivers’ DRs on their well-being, satisfaction with life (SwL) and caregiving stress. Methods: Participants were 1264 informal caregivers of people in the mild-to-moderate stages of dementia from time-point 1 of the IDEAL cohort study. Measures: DRs were measured using questionnaire items covering: Identity, Cause, Control, and Timeline. Results: Almost half (49.2%) of caregivers used a diagnostic term to describe the person’s condition, although 93.4% of caregivers stated they were aware of the diagnosis. Higher well-being, SwL, and lower caregiving stress were associated with the use of an identity term relating to specific symptoms of dementia, attributing the cause to ageing or not knowing the cause, and believing the condition would stay the same. Lower well-being, SwL, and higher caregiving stress were associated with believing there was little that could be done to control the effects of the condition. Conclusion: Healthcare professionals should assess and gain an understanding of caregivers’ DRs in order to provide more tailored information and support.
    • 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.
    • Dualities of dementia illness narratives and their role in a narrative economy

      Hillman, A.; Jones, I.R.; Quinn, Catherine; Nelis, S.M.; Clare, L. (2018-06)
      The concept of 'narrative economies' has recently been proposed as a set of exchange relationships that, through biography and story-telling, facilitate access to resources and act as a source of value. We utilise this concept to inform our analysis of 18 qualitative interviews with five people with dementia and four informal carers. Our participants are members of a pre-existing group of dementia advocates, representing the voices of those living with the condition. There are a growing number of people in the early stages of dementia - like our participants - being called upon to account for their experience, as a means of developing a politicised 'collective illness identity'. These interviews present an opportunity to study a group of people who are actively involved in speaking as, and for, people with dementia. Four themes emerged from the data: becoming a voice of or for people with dementia; biographical reinforcement; responsibilisation; and resistance. These themes illustrate the ways in which people with dementia participate in their own identity construction and, as representatives of those living with dementia, they also illustrate the ways in which illness narratives produce material and symbolic value.
    • Factors associated with self- and informant ratings of quality of life, well-being and life satisfaction in people with mild-to-moderate dementia: results from the Improving the experience of Dementia and Enhancing Active Life programme

      Wu, Y-T.; Nelis, S.M.; Quinn, Catherine; Martyr, A.; Jones, I.R.; Victor, C.R.; Knapp, M.; Henderson, C.; Hindle, J.V.; Jones, R.W.; et al. (2020-05)
      Background: a large number of studies have explored factors related to self- and informant ratings of quality of life in people with dementia, but many studies have had relatively small sample sizes and mainly focused on health conditions and dementia symptoms. The aim of this study is to compare self- and informant-rated quality of life, life satisfaction and well-being, and investigate the relationships of the two different rating methods with various social, psychological and health factors, using a large cohort study of community-dwelling people with dementia and carers in Great Britain. Methods: this study included 1,283 dyads of people with mild-to-moderate dementia and their primary carers in the Improving the experience of Dementia and Enhancing Active Life study. Multivariate modelling was used to investigate associations of self- and informant-rated quality of life, life satisfaction and well-being with factors in five domains: psychological characteristics and health; social location; capitals, assets and resources; physical fitness and health; and managing everyday life with dementia. Results: people with dementia rated their quality of life, life satisfaction and well-being more highly than did the informants. Despite these differences, the two approaches had similar relationships with social, psychological and physical health factors in the five domains. Conclusion: although self- and informant ratings differ, they display similar results when focusing on factors associated with quality of life, life satisfaction and well-being. Either self- or informant ratings may offer a reasonable source of information about people with dementia in terms of understanding associated factors.
    • The impact of comorbidity on the quality of life of people with dementia: findings from the IDEAL study

      Nelis, S.M.; Wu, Y.-T.; Matthews, F.E.; Martyr, A.; Quinn, Catherine; Rippon, I.; Rusted, J.; Thom, J.M.; Kopelman, M.D.; Hindle, J.V.; et al. (2019-05)
      The aim was to investigate the comorbidity profile of people with dementia and examine the associations between severity of comorbidity, health-related quality of life (HRQoL) and quality of life (QoL). The improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort consisted of 1,547 people diagnosed with dementia who provided information on the number and type of comorbid conditions. Participants also provided ratings of their health-related and dementia-specific QoL. The majority of the sample were living with more than one chronic condition. Hypertension was commonly reported and frequently combined with connective tissue disease, diabetes and depression. The number of comorbid conditions was associated with low QoL scores, and those with severe comorbidity (≥5 conditions) showed the greatest impact on their well-being. Comorbidity is an important risk factor for poor QoL and health status in people with dementia. Greater recognition of the nature and impact of comorbidity is needed to inform support and interventions for people with dementia and a multidisciplinary approach to care provision is recommended.
    • The impact of relationship quality on life satisfaction and well-being in dementia caregiving dyads: findings from the IDEAL study

      Rippon, I.; Quinn, Catherine; Martyr, A.; Morris, R.; Nelis, S.M.; Jones, I.R.; Victor, C.R.; Clare, L. (2020)
      Objectives: The quality of the relationship between people with dementia and their informal caregiver maybe an important determinant of life satisfaction and well-being for both members of the dyad. Taking a dyadic perspective, the aim of this study was to examine whether self- and partner- rated relationship quality influences life satisfaction and well-being for both people with dementia and their caregivers. Design and methods: Using data from 1283 dyads in the Improving the Experience of Dementia and Enhancing Active Life (IDEAL) cohort, we examined the impact of current relationship quality on life satisfaction and well-being in dementia caregiving dyads. Data were analysed using the Actor–Partner Interdependence Model (APIM) framework. Results: Self-rated relationship quality was associated with own life satisfaction and well-being for both people with dementia and caregivers. Partner-rated relationship quality did not influence own life satisfaction or well-being for either member of the dyad. Conclusion: This study is the first to use the APIM framework to explore the dyadic associations between relationship quality and life satisfaction and well-being in a large cohort of dementia caregiving dyads. The obtained findings suggest that the individual perception of the quality of the caregiving relationship held by each member of the caregiving dyad is an important factor for that member’s life satisfaction and well-being, while the partner’s perception of relationship quality is not. The findings highlight the importance of considering the individual perspective of both the person with dementia and the caregiver and enabling each to maintain positive perceptions of relationship quality.
    • 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 alone with mild-to-moderate dementia: findings from the IDEAL Cohort

      Clare, L.; Martyr, A.; Henderson, C.; Gamble, L.; Matthews, F.E.; Quinn, Catherine; Nelis, S.M.; Rusted, J.; Thom, J.; Knapp, M.; et al. (2020-11)
      A significant proportion of people with dementia live alone, but little is known about their specific needs. To understand the profile of people living alone with mild-to-moderate dementia in the UK and identify any systematic differences associated with living situation. We analyzed cross-sectional data from 1,541 people with mild-to-moderate dementia and 1,277 caregivers participating in the IDEAL cohort at the first wave of assessment. There were 1,256 (81.5%) people with dementia living with others and 285 (18.5%) living alone, of whom 51 (3% of whole sample) reported little or no informal support. There were relatively few differences associated with living situation and odds ratios were generally small. People living alone were older on average, and more likely to be female, than those living with others. Those living alone were more likely to have higher cognitive ability and self-reported functional ability, and more social contact with those from other households. They were also lonelier, expressed less satisfaction with life, and used home care services and equipment more. There were no differences in symptoms, mood, quality of life, or well-being. The findings support the view that it is possible to 'live well' with mild-to-moderate dementia while living alone, given appropriate support, including home care and equipment. Nevertheless, it is important to consider how those living alone may be supported to have a more satisfactory experience, and how health and social care services can best respond to their needs.
    • 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.
    • Longitudinal trajectories of quality of life among people with mild-to-moderate dementia: a latent growth model approach with IDEAL cohort study data

      Clare, L.; Gamble, L.D.; Martyr, A.; Sabatini, S.; Nelis, S.M.; Quinn, Catherine; Pentecost, C.; Victor, C.; Jones, R.W.; Jones, I.R.; et al. (2022-06)
      Objectives: We aimed to examine change over time in self-rated quality of life (QoL) in people with mild-to-moderate dementia and identify sub-groups with distinct QoL trajectories. Method: We used data from people with mild-to-moderate dementia followed up at 12 and 24 months in the IDEAL cohort study (baseline n=1537). A latent growth model approach examined mean change over time in QoL, assessed with the QoL-AD scale, and investigated associations of baseline demographic, cognitive and psychological covariates with the intercept and slope of QoL. We employed growth mixture modelling to identify multiple growth trajectories. Results: Overall mean QoL scores were stable and no associations with change over time were observed. Four classes of QoL trajectories were identified: two with higher baseline QoL scores, labelled Stable (74.9%) and Declining (7.6%), and two with lower baseline QoL scores, labelled Stable Lower (13.7%) and Improving (3.8%). The Declining class had higher baseline levels of depression and loneliness, and lower levels of self-esteem and optimism, than the Stable class. The Stable Lower class was characterised by disadvantage related to social structure, poor physical health, functional disability, and low psychological well-being The Improving class was similar to the Stable Lower class but had lower cognitive test scores. Discussion: Understanding individual trajectories can contribute to personalised care planning. Efforts to prevent decline in perceived QoL should primarily target psychological well-being. Efforts to improve QoL for those with poorer QoL should additionally address functional impairment, isolation, and disadvantage related to social structure.
    • 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.
    • Positive experiences in dementia care-giving: findings from the IDEAL programme

      Quinn, Catherine; Toms, G.; Rippon, I.; Nelis, S.M.; Henderson, C.; Morris, R.G.; Rusted, J.M.; Thom, J.M.; van den Heuvel, E.; Victor, C.; et al. (2022)
      There is a growing evidence base that identifying positive experiences in providing care can have a beneficial influence on carer wellbeing. However, there is a need to better understand what carers identify as the positive aspects of care-giving. The aim of this study is to explore the satisfying aspects of providing care to people with dementia. This study utilised Time 1 data from 1,277 carers of people in the mild-to-moderate stages of dementia taking part in the IDEAL (Improving the experience of Dementia and Enhancing Active Life) cohort study. Responses from 900 carers who answered the open-ended question ‘What is your greatest satisfaction in caring for your relative/friend?’ were analysed using thematic analysis. From the responses, 839 carers detailed satisfactions. Eight themes were identified, pertaining to three groups of beneficiaries: carers, people with dementia and the dyad. Perceived benefits for carers included identifying aspects of personal growth, seeing glimpses of the person, feeling they were making a difference and doing their duty. For the person with dementia, these included retaining independence, receiving good quality care and being happy. Dyadic benefits concerned the continuation of the relationship between carer and person with dementia. The findings highlight the need to take a dyadic approach when conceptualising positive experiences in providing care. Further research is needed to understand the role these positive experiences play and to develop interventions. Professionals working with carers should identify and validate these experiences.
    • Predictors of awareness of functional ability in people with dementia: the contribution of personality, cognition, and neuropsychiatric symptoms. Findings from the IDEAL programme

      Martyr, A.; Gamble, L.D.; Nelis, S.M.; Collins, R.; Alexander, C.M.; Morris, R.G.; Quinn, Catherine; Pentecost, C.; Rusted, J.M.; Victor, C.; et al. (2022)
      Introduction: Discrepancy scores reflecting the difference between parallel ratings made by people living with dementia (PwD) in the mild-to-moderate stages and by their informants provide a way to investigate awareness of functional ability in relation to activities of daily living (ADL). Methods: Two measures of ADL (Functional Activities Questionnaire; Dependence Scale) were completed by 1,227 PwD and their informants in the IDEAL cohort study baseline assessment. Self-rated and informant-rated scores were used to calculate discrepancies, which were used as an indicator of awareness of functional ability. Smaller discrepancy scores were considered to reflect greater awareness on the part of PwD. PwD completed questionnaires on depression, personality, comorbidities, neuropsychiatric symptoms, and completed a measure of cognition. Informants provided ratings of stress. Univariable and multiple regressions were used to investigate factors related to ADL discrepancy. Results: A similar pattern of associations were found for both ADL discrepancy scores. Smaller discrepancy scores were associated with higher levels of depression, higher neuroticism, fewer neuropsychiatric symptoms, higher comorbidity, lower carer stress, and receipt of less than 1 hour of care per day from the informant. Discussion/Conclusion: There was a clear pattern of factors that were associated with greater awareness for both measures of functional ability. These factors associated with smaller discrepancy scores could be used to identify PwD who might benefit from targeted interventions to support their independence.
    • The prevalence and predictors of loneliness in caregivers of people with dementia: findings from the IDEAL programme

      Victor, C.R.; Rippon, I.; Quinn, Catherine; Nelis, S.M.; Martyr, A.; Hart, N.; Lamont, R.; Clare, L. (2021-07)
      Objectives: To establish the prevalence of loneliness among family caregivers of people with dementia and to identify potential risk factors for loneliness. Methods: Using data from the baseline wave of the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort study, we examined loneliness in 1283 family caregivers of people with mild-to-moderate dementia living in Great Britain. Multinomial regression was used to examine the relative influence of a series of risk factors for caregiver loneliness. Results: Almost half, 43.7%, of caregivers reported moderate loneliness and 17.7% reported severe loneliness. Greater social isolation and increased caregiving stress were linked with both moderate and severe loneliness. Better quality of relationship with the person with dementia along with increased levels of well-being and life satisfaction were associated with a lower relative risk of reporting both moderate and severe loneliness. Discussion: This study examines the prevalence and predictors of loneliness in a large sample of family caregivers of people with dementia. Notably over two-thirds of caregivers in our sample reported feeling lonely. Interventions aimed at reducing caregiving stress and supporting meaningful relationships may go some way towards helping to reduce loneliness.
    • 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.
    • Reflections on PPI from the ‘Action on Living Well: Asking You’ advisory network of people with dementia and carers as part of the IDEAL study

      Litherland, R.; Burton, J.; Cheeseman, M.; Campbell, D.; Hawkins, M.; Hawkins, T.; Oliver, K.; Scott, D.; Ward, J.; Nelis, S.M.; et al. (2018-11-01)
      This article describes the work of the ‘Action on Living Well: Asking You’ group – an involvement group of people with dementia and carers attached to the IDEAL research study. The article describes the work of the group, the methods that have helped them to stay involved and people’s perspectives on their experiences of being involved and the impact it has had, for themselves and others. The article has been written following a reflective piece of work with the ‘Action on Living Well: Asking You’ group to review and remember the work of the past four years. An accompanying film brings to life the work and activities of the group, available at www.idealproject.org.uk/mclass/