Dyadic perspectives on loneliness and social isolation among people with dementia and spousal carers: findings from the IDEAL programme

YesThis study aims to investigate the impact of self and partner experiences of loneliness and social isolation on life satisfaction in people with dementia and their spousal carers. We used data from 1042 dementia caregiving dyads in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) programme cohort. Loneliness was measured using the six-item De Jong Gierveld loneliness scale and social isolation using the six-item Lubben Social Network Scale. Data were analysed using the Actor-Partner Interdependence Model framework. Self-rated loneliness was associated with poorer life satisfaction for both people with dementia and carers. The initial partner effects observed between the loneliness of the carer and the life satisfaction of the person with dementia and between social isolation reported by the person with dementia and life satisfaction of the carer were reduced to nonsignificance once the quality of the relationship between them was considered. Experiencing greater loneliness and social isolation is linked with reduced life satisfaction for people with dementia and carers. However, having a positive view of the quality of the relationship between them reduced the impact of loneliness and social isolation on life satisfaction. Findings suggest the need to consider the experiences of both the person with dementia and the carer when investigating the impact of loneliness and social isolation. Individual interventions to mitigate loneliness or isolation may enhance life satisfaction for both partners and not simply the intervention recipient.‘Improving the experience of Dementia and Enhancing Active Life: living well with dementia. The IDEAL study’ was funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health and Care Research (NIHR) through grant ES/L001853/2. ‘Improving the experience of Dementia and Enhancing Active Life: a longitudinal perspective on living well with dementia. The IDEAL-2 study’ is funded by Alzheimer’s Society, grant number 348, AS-PR2-16- 001

A comprehensive model of factors associated with subjective perceptions of living well with dementia: findings from the IDEAL study

Background: The concept of ‘living well’ is increasingly used to indicate that it is, or should be, possible for a person living with dementia to experience a subjective sense of ‘comfort, function and contentment with life.’ We used a theoretically-derived conceptual framework to investigate capability to ‘live well’ with dementia through identifying the relative contribution of domains associated with the subjective experience of living well. Methods: We analysed data from 1550 community-dwelling individuals with mild to moderate dementia participating in the baseline wave of the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort study. Subjective perceptions of ability to live well were obtained by generating a living well latent factor from responses on the Quality of Life in Alzheimer’s disease (QoL-AD), Satisfaction with Life and WHO-5 Well-being scales. Multivariate modelling and structural equation modelling was used to investigate variables potentially associated with living well. Variables were grouped into five domains, latent variables were constructed representing Social Location, Capitals, Assets and Resources, Psychological Characteristics and Psychological Health, Physical Fitness and Health, and Managing Everyday Life with Dementia, and associations with living well were examined. All models were adjusted for age, sex and dementia sub-type. Results: Considering the domains singly, the Psychological Characteristics and Psychological Health domain was most strongly associated with living well (3.56; 95% CI: 2.25, 4.88), followed by Physical Fitness and Physical Health (1.10, 95% CI: -2.26, 4.47). Effect sizes were smaller for Capitals, Assets and Resources (0.53; 95% CI: -0.66, 1.73), Managing Everyday Life with Dementia (0.34; 95% CI: 0.20, 0.87), and Social Location (-0.12; 95% CI: -5.72, 5.47). Following adjustment for the Psychological Characteristics and Psychological Health domain, other domains did not show independent associations with living well. Conclusions: Psychological resources are central to subjective perceptions of living well and offer important targets for immediate intervention. Availability of social and environmental resources, and physical fitness, underpin these positive psychological states, and also offer potential targets for interventions and initiatives aimed at improving the experience of living with dementia

A comprehensive model of factors associated with subjective perceptions of living well with dementia: findings from the IDEAL study

Background: The concept of ‘living well’ is increasingly used to indicate that it is, or should be, possible for a person living with dementia to experience a subjective sense of ‘comfort, function and contentment with life.’ We used a theoretically-derived conceptual framework to investigate capability to ‘live well’ with dementia through identifying the relative contribution of domains associated with the subjective experience of living well. Methods: We analysed data from 1550 community-dwelling individuals with mild to moderate dementia participating in the baseline wave of the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort study. Subjective perceptions of ability to live well were obtained by generating a living well latent factor from responses on the Quality of Life in Alzheimer’s disease (QoL-AD), Satisfaction with Life and WHO-5 Well-being scales. Multivariate modelling and structural equation modelling was used to investigate variables potentially associated with living well. Variables were grouped into five domains, latent variables were constructed representing Social Location, Capitals, Assets and Resources, Psychological Characteristics and Psychological Health, Physical Fitness and Health, and Managing Everyday Life with Dementia, and associations with living well were examined. All models were adjusted for age, sex and dementia sub-type. Results: Considering the domains singly, the Psychological Characteristics and Psychological Health domain was most strongly associated with living well (3.56; 95% CI: 2.25, 4.88), followed by Physical Fitness and Physical Health (1.10, 95% CI: -2.26, 4.47). Effect sizes were smaller for Capitals, Assets and Resources (0.53; 95% CI: -0.66, 1.73), Managing Everyday Life with Dementia (0.34; 95% CI: 0.20, 0.87), and Social Location (-0.12; 95% CI: -5.72, 5.47). Following adjustment for the Psychological Characteristics and Psychological Health domain, other domains did not show independent associations with living well. Conclusions: Psychological resources are central to subjective perceptions of living well and offer important targets for immediate intervention. Availability of social and environmental resources, and physical fitness, underpin these positive psychological states, and also offer potential targets for interventions and initiatives aimed at improving the experience of living with dementia

The impact of relationship quality on life satisfaction and well-being in dementia caregiving dyads: findings from the IDEAL study

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

Austrian Biomedical Research Outputs 1991-2000

In der vorliegenden Studie werden die österreichischen Publikationen in der biomedizinischen Forschung der Jahre 1991 bis 2000 - knapp 27.000 - analysiert. Sämtliche Publikationen dieser Datenbank wurden mit den Publikationen der Schweiz, Deutschlands, Israels, Schwedens und Großbritanniens verglichen. Ziel der Untersuchung ist die Analyse des Ist-Zustands des österreichischen wissenschaftlichen Outputs im Bereich der biomedizinischen Forschung und das Aufzeigen von zukünftigen Möglichkeiten zur Verbesserung und Spezialisierung sowie der Weiterentwicklung der relevanten Förderschienen

Positive experiences in dementia care-giving: findings from the IDEAL programme

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

Greater perceived age discrimination in England than the United States: Results from HRS and ELSA

Objectives. We examined cross-national differences in perceptions of age discrimination in England and the United States. Under the premise that the United States has had age discrimination legislation in place for considerably longer than England, we hypothesized that perceptions of age discrimination would be lower in the United States. Methods. We analyzed data from two nationally representative studies of aging, the U.S. Health and Retirement Study (n = 4,818) and the English Longitudinal Study of Ageing (n = 7,478). Respondents aged 52 years and older who attributed any experiences of discrimination to their age were treated as cases of perceived age discrimination. We used multivariable logistic regression to estimate the odds ratios of experiencing perceived age discrimination in relation to selected sociodemographic factors. Results. Perceptions of age discrimination were significantly higher in England than the United States, with 34.8% of men and women in England reporting age discrimination compared with 29.1% in the United States. Associations between perceived age discrimination and older age and lower levels of household wealth were observed in both countries, but we found differences between England and the United States in the relationship between perceived age discrimination and education. Discussion. Our study revealed that levels of perceived age discrimination are lower in the United States than England and are less socially patterned. This suggests that differing social and political circumstances in the two countries may have an important role to play.The English Longitudinal Study of Ageing was developed by a team of researchers based at the University College London, National Centre for Social Research, and the Institute for Fiscal Studies. The data were collected by the National Centre for Social Research. The funding is provided by the National Institute of Aging in the United States, and a consortium of UK government departments coordinated by the Office for National Statistics. The developers and funders of the English Longitudinal Study of Ageing and the UK Data Archive do not bear any responsibility for the analyses or interpretations presented here. The HRS (Health and Retirement Study) is sponsored by the National Institute on Aging (grant number NIA U01AG009740) and is conducted by the University of Michigan. The contents of this article are solely the responsibility of the authors and do not necessarily represent the official views of the sponsors. I.R. did the statistical analysis and wrote the first draft of the manuscript. All authors analyzed and interpreted the data, revised the manuscript, and approved the final version.I.R. is supported by an Impact PhD studentship from the International Longevity Centre–UK (ILC-UK) and University College London. A.S. is funded by the British Heart Foundation

Protocol for Scoping Review on Potential Pathways between Loneliness, Social Isolation & Depression

Protocol for Scoping review of the potential mediators in longitudinal relationships between loneliness or social isolation and depression across all ages