• 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.
    • Community Ageing Research 75+ (CARE75+) REMOTE study: a remote model of recruitment and assessment of the health, well-being and social circumstances of older people

      Brown, L.; Heaven, A.; Quinn, Catherine; Goodwin, V.; Chew-Graham, C.; Mahmood, F.; Hallas, S.; Jacob, I.; Brundle, C.; Best, K.; et al. (2021-11)
      The Community Ageing Research 75+ (CARE75+) study is a longitudinal cohort study collecting extensive health and social data, with a focus on frailty, independence and quality of life in older age. CARE75+ was the first international experimental frailty research cohort designed using trial within cohorts (TwiCs) methodology, aligning epidemiological research with clinical trial evaluation of interventions to improve the health and well-being of older people. CARE75+ REMOTE is an extension of CARE75+ using a remote model that does not require face-to-face interactions for data collection in the current circumstances of a global pandemic and will provide an efficient, sustainable data collection model. Methods and analysis Prospective cohort study using TwiCs. One thousand community-dwelling older people (≥75 years) will be recruited from UK general practices by telephone. Exclusions include: nursing home/care home residents; those with an estimated life expectancy of 3 months or less; and people receiving palliative care. Data collection Assessments will be conducted by telephone, web-submission or postal questionnaire: baseline, 6 months, 12 months, 18 months, 24 months, 30 months and 36 months. Measures include activities of daily living, mood, health-related quality of life, comorbidities, medications, frailty, informal care, healthcare and social care service use. Consent will be sought for data linkage and invitations to additional studies (sub-studies). Ethics and dissemination CARE75+ was approved by the National Research Ethics Service (NRES) Committee Yorkshire and the Humber—Bradford Leeds 10 October 2014 (14/YH/1120). CARE75+ REMOTE (amendment 13) was approved on the 18th November 2020. Consent is sought if an individual is willing to participate and has capacity to provide informed consent. Consultee assent is sought if an individual lacks capacity. Results will be disseminated in peer-reviewed scientific journals and conferences. Results will be summarised and disseminated to study participants via newsletters, local engagement events and on a bespoke website.
    • 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.
    • Dementia Care Mapping (DCM): A Review of the research literature

      Brooker, Dawn J.R. (2005)
      The published literature on dementia care mapping (DCM) in improving quality of life and quality of care through practice development and research dates back to 1993. The purpose of this review of the research literature is to answer some key questions about the nature of the tool and its efficacy, to inform the ongoing revision of the tool, and to set an agenda for future research. Design and Methods: The DCM bibliographic database at the University of Bradford in the United Kingdom contains all publications known on DCM (http://www.bradford.ac.uk/acad/health/dcm). This formed the basis of the review. Texts that specifically examined the efficacy of DCM or in which DCM was used as a main measure in the evaluation or research were reviewed. Results: Thirty-four papers were categorized into five main types: (a) cross-sectional surveys, (b) evaluations of interventions, (c) practice development evaluations, (d) multimethod evaluations, and (e) papers investigating the psychometric properties of DCM.
    • Does awareness of condition help people with mild-to-moderate dementia to live well?

      Alexander, C.M.; Martyr, A.; Gamble, L.D.; Savage, S.A.; Quinn, Catherine; Morris, R.G.; Clare, L. (2021-09-25)
      People living with dementia vary in awareness of their abilities. We explored awareness of the condition and diagnosis in people with mild-to-moderate dementia, and how this relates to quality of life, well-being, life satisfaction, and caregiver stress. This study was a cross-sectional exploratory analysis of data from the IDEAL cohort, which recruited people with dementia living at home and available caregivers from 29 research sites in Great Britain. Our study included 917 people with mild-to-moderate dementia and 755 carers. Low and high awareness groups were derived from self-reported responses to a dementia representation measure. Logistic regression was used to explore predictors of awareness of condition and diagnosis using demographic, cognitive, functional and psychological measures, and the relationship with quality of life, well-being and life satisfaction (‘living well’), and caregiver stress. There were 83 people with low awareness of their condition. The remaining 834 people showed some awareness and 103 of these had high awareness of their condition and diagnosis. Psychosocial factors were stronger predictors of awareness than cognitive and functional ability. Those with higher awareness reported lower mood, and lower scores on indices of living well as well as lower optimism, self-efficacy and self-esteem. Low awareness was more likely in those aged 80y and above, and living in more socially deprived areas. No relationship was seen between caregiver stress and awareness. Awareness of the condition and diagnosis varies in people with mild-to-moderate dementia and is relevant to the capability to live well. Awareness should be considered in person-centered clinical care.
    • 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.
    • Impact of COVID-19 on carers of people with dementia in the community: Findings from the British IDEAL cohort

      Quinn, Catherine; Gamble, L.D.; Parker, S.; Martyr, A.; Collins, R.; Victor, C.; Dawson, E.; Hunt, A.; Pentecost, C.; Allan, L.; et al. (2022-05)
      Unpaid carers for people with dementia play a crucial role in society. Emerging evidence suggests the COVID-19 pandemic has negatively impacted on carers. This study sought to explore the impact of the COVID-19 pandemic on carers for community-dwelling people with dementia and compare responses with pre-pandemic data. Data were collected between September 2020 and April 2021 in England and Wales. Carers were identified from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort and data were collected either through the telephone, video conferencing, or an online questionnaire. Responses from 242 carers were compared against benchmark data from the IDEAL cohort collected pre-pandemic. Analyses were conducted for the full sample of carers and spousal/partner carers only. In total 48.8% of carers thought their healthcare needs were negatively affected during the pandemic. Compared with pre-pandemic data carers were more lonely and experienced less life satisfaction. There was little impact on carers' experience of caregiving, although carers felt trapped in their caregiving role. Carers were more optimistic and had higher social contact with relatives. There were changes in the methods carers used for contacting relatives and friends. Most carers coped very or fairly well during the pandemic. There was little difference in the experiences of spousal/partner carers and the full sample. After a long period of providing care under pandemic conditions carers require additional support. This support needs to be focused on alleviating feelings of loneliness and increasing life satisfaction. Services need to consider how to improve access to health care, particularly resuming face-to-face appointments.
    • Impact of COVID-19 on ‘living well’ with mild-to-moderate dementia in the community: findings from the IDEAL cohort

      Clare, L.; Martyr, A.; Gamble, L.D.; Pentecost, C.; Collins, R.; Dawson, E.; Hunt, A.; Parker, S.; Allan, L.; Burns, A.; et al. (2022)
      Background. Negative impacts of the COVID-19 pandemic on people with dementia have been widely-documented, but most studies have relied on carer reports and few have compared responses to information collected before the pandemic. Objective. We aimed to explore the impact of the pandemic on community-dwelling individuals with mild-to-moderate dementia and compare responses with pre-pandemic data. Methods. During the second wave of the pandemic we conducted structured telephone interviews with 173 people with dementia and 242 carers acting as informants, all of whom had previously participated in the IDEAL cohort. Where possible we benchmarked responses against pre-pandemic data. Results. Significant perceived negative impacts were identified in cognitive and functional skills and ability to engage in self-care and manage everyday activities, along with increased levels of loneliness and discontinuity in sense of self and a decline in perceived capability to ‘live well’. Compared to pre-pandemic data there were lower levels of pain, depression and anxiety, higher levels of optimism, and better satisfaction with family support. There was little impact on physical health, mood, social connections and relationships, or perceptions of neighbourhood characteristics. Conclusion. Efforts to mitigate negative impacts of pandemic-related restrictions and restore quality of life could focus on reablement to address the effects on participation in everyday activities, creating opportunities for social contact to reduce loneliness, and personalised planning to reconnect people with their pre-COVID selves. Such efforts may build on the resilience demonstrated by people with dementia and carers in coping with the pandemic.
    • 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: what is possible and how to promote it

      Quinn, Catherine; Pickett, James A.; Litherland, R.; Morris, R.G.; Martyr, A.; Clare, L. (2022-01)
      Key points: The focus on living well with dementia encourages a more positive and empowering approach. The right support can improve the experience of living with dementia. An holistic approach to assessing the needs of people with dementia and identifying the factors that impact on their well-being is essential. Enabling people to live better requires a broad approach that encompasses both health and social systems and the wider community.
    • The long-term (24-month) effect on health and well-being of the Lifestyle Matters community-based intervention in people aged 65 years and over: a qualitative study

      Chatters, R.; Roberts, J.; Mountain, Gail; Cook, S.; Windle, G.; Craig, C.; Sprange, K. (2017-09)
      Objectives To assess the long-term effect on health and well-being of the Lifestyle Matters programme. Design Qualitative study of a subset of intervention arm participants who participated in the Lifestyle Matters randomised controlled trial (RCT). Setting The intervention took place at community venues within two sites in the UK. Participants A purposeful sample of 13 participants aged between 66 and 88 years from the intervention arm of the RCT were interviewed at 24 months post randomisation. Interviews aimed to understand how participants had used their time in the preceding 2 years and whether the intervention had any impact on their lifestyle choices, participation in meaningful activities and well-being. Intervention Lifestyle Matters is a 4-month occupational therapy intervention, consisting of group and individual sessions, designed to enable community living older people to make positive lifestyle choices and participate in new or neglected activities through increasing self-efficacy. Results Interviews revealed that the majority of interviewed participants were reportedly active at 24 months, with daily routines and lifestyles not changing significantly over time. All participants raised some form of benefit from attending Lifestyle Matters, including an improved perspective on life, trying new hobbies and meeting new friends. A number of intervention participants spoke of adapting to their changing circumstances, but there were significant and lasting benefits for 2 of 13 intervention participants interviewed. Conclusion The majority of those who experienced the Lifestyle Matters intervention reported minor benefits and increases in self-efficacy, but they did not perceive that it significantly improved their health and well-being. The two participants who had experienced major benefits also reported having had life-changing events, suggesting that this intervention is most effective at the time when lifestyle has to be reconsidered if mental well-being is to be sustained.
    • 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.
    • Psychological processes in adapting to dementia: illness representations among the IDEAL cohort

      Clare, L.; Gamble, L.D.; Martyr, A.; Quinn, Catherine; Litherland, R.; Morris, R.G.; Jones, I.R.; Matthews, F.E. (2022-06)
      How people understand and adapt to living with dementia may influence well-being. Leventhal’s Common Sense Model (CSM) of Self-Regulation provides a theoretical basis for exploring this process. We used cross-sectional and longitudinal data from 1,109 people with mild-to-moderate dementia in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort. We elicited dementia representations (DRs) using the Representations and Adjustment to Dementia Index (RADIX), a validated measure based on the CSM, identified groups sharing distinct DR profiles, and explored predictors of group membership and associations with well-being, and whether problem-focused coping played a mediating role in these associations. We identified four DR classes: people who see the condition as a disease and adopt a diagnostic label; people who see the condition as a disease but refer to symptoms rather than a diagnostic label; those who see the condition as part of aging; and those who are unsure how to make sense of the condition. A fifth group did not acknowledge any difficulties. “Disease” representations were associated with better cognition and younger age, while “aging” and “no problem” representations were associated with better mood and well-being. The association with well-being remained stable over 24 months. There was limited partial support for a mediating role of problem-focused coping. Variations in DRs may reflect individual differences in the psychological processes involved in adjusting to dementia. DRs provide a framework for personalizing and tailoring both communications about dementia and interventions aimed at supporting people in coping with dementia. There is a need to debate what constitutes a positive DR and how its development might be encouraged.
    • The role of subjective social status in living well for carers of people with dementia: findings from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) programme

      Victor, C.R.; Rippon, I.; Quinn, Catherine; Martyr, A.; Clare, L. (2021-08)
      We investigated how carers of people with dementia evaluate their standing in their community and wider society, and if this is related to ‘living well’. We used baseline data from the Improving the experience of Dementia and Enhancing Active Life programme and found that carers rated their standing in society higher than in their local community. Higher evaluations of both were associated with enhanced life satisfaction, well-being and quality of life. Initiatives that increase support or engagement in the community or wider society may help to increase carers’ perceptions of their social status, enhancing their ability to ‘live well’.
    • 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.
    • A UK survey of COVID-19 related social support closures and their effects on older people, people with dementia, and carers

      Giebel, C.; Lord, Kathryn; Cooper, C.; Shenton, J.; Cannon, J.; Pulford, D.; Shaw, L.; Gaughan, A.; Tetlow, H.; Butchard, S.; et al. (2021-03)
      Objectives: The aim of this national survey was to explore the impact of COVID-19 public health measures on access to social support services and the effects of closures of services on the mental well-being of older people and those affected by dementia. Methods: A UK-wide online and telephone survey was conducted with older adults, people with dementia, and carers between April and May 2020. The survey captured demographic and postcode data, social support service usage before and after COVID-19 public health measures, current quality of life, depression, and anxiety. Multiple linear regression analysis was used to explore the relationship between social support service variations and anxiety and well-being. Results: Five hundred and sixty-nine participants completed the survey (61 people with dementia, 285 unpaid carers, and 223 older adults). Paired samples t-tests and X2 -tests showed that the mean hour of weekly social support service usage and the number of people having accessed various services was significantly reduced post COVID-19. Multiple regression analyses showed that higher variations in social support service hours significantly predicted increased levels of anxiety in people with dementia and older adults, and lower levels of mental well-being in unpaid carers and older adults. Conclusions: Being unable to access social support services due to COVID contributed to worse quality of life and anxiety in those affected by dementia and older adults across the UK. Social support services need to be enabled to continue providing support in adapted formats, especially in light of continued public health restrictions for the foreseeable future.