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

OBJECTIVES: This 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. METHODS: 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. RESULTS: 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. DISCUSSION: 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.

Perceived and objective availability of green and blue spaces and quality of life in people with dementia: results from the IDEAL programme.

PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

The prevalence and predictors of loneliness in caregivers of people with dementia: findings from the IDEAL programme.

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.

Prevalence and determinants of loneliness in people living with dementia: Findings from the IDEAL programme.

OBJECTIVE: To establish the prevalence and determinants of loneliness among people living with dementia. METHODS: Using data from the baseline wave of the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort study, we examined the prevalence and predictors of loneliness in 1547 people with mild-to-moderate dementia. Loneliness was assessed using the six-item De Jong Gierveld loneliness scale. RESULTS: About 30.1% of people with dementia reported feeling moderately lonely and 5.2% severely lonely. Depressive symptoms and increased risk of social isolation were associated with both moderate and severe loneliness. Those living alone were more likely to experience severe loneliness as were those reporting poorer quality of life. Marital status was not associated with loneliness nor were dementia diagnosis or cognitive function. CONCLUSIONS: This is one of the few large-scale studies to explore the prevalence of and determinants of loneliness among people living with dementia. Social isolation, depression and living alone were associated with experiencing loneliness. Longitudinal studies are needed to determine the directionality of these associations.

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.

Psychological predictors of 'living well' with dementia: findings from the IDEAL study.

Objectives: Increasingly, 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.Method: 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).Results: 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.Conclusion: 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.

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.

INTRODUCTION: 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. METHODS: 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." RESULTS: 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. DISCUSSION: 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.

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.

The impact of co-morbidity on the quality of life of people with dementia: findings from the IDEAL study.

BACKGROUND: The aim was to investigate the co-morbidity profile of people with dementia and examine the associations between severity of co-morbidity, health-related quality of life (HRQoL) and quality of life (QoL). METHODS: 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 co-morbid conditions. Participants also provided ratings of their health-related and dementia-specific QoL. RESULTS: 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 co-morbid conditions was associated with low QoL scores, and those with severe co-morbidity (≥5 conditions) showed the greatest impact on their well-being. CONCLUSIONS: Co-morbidity is an important risk factor for poor QoL and health status in people with dementia. Greater recognition of the nature and impact of co-morbidity is needed to inform support and interventions for people with dementia and a multidisciplinary approach to care provision is recommended.

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.

OBJECTIVES: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Perceived age discrimination in older adults.

OBJECTIVES: to examine perceived age discrimination in a large representative sample of older adults in England. METHODS: this cross-sectional study of over 7,500 individuals used data from the fifth wave of the English Longitudinal Study of Ageing (ELSA), a longitudinal cohort study of men and women aged 52 years and older in England. Wave 5 asked respondents about the frequency of five everyday discriminatory situations. Participants who attributed any experiences of discrimination to their age were treated as cases of perceived age discrimination. Multivariable logistic regression analysis was used to estimate the odds ratios of experiencing perceived age discrimination in relation to selected sociodemographic factors. RESULTS: approximately a third (33.3%) of all respondents experienced age discrimination, rising to 36.8% in those aged 65 and over. Perceived age discrimination was associated with older age, higher education, lower levels of household wealth and being retired or not in employment. The correlates of age discrimination across the five discriminatory situations were similar. CONCLUSION: understanding age discrimination is vital if we are to develop appropriate policies and to target future interventions effectively. These findings highlight the scale of the challenge of age discrimination for older adults in England and illustrate that those groups are particularly vulnerable to this form of discrimination.

Older adults' experiences of loneliness over the lifecourse: An exploratory study using the BBC loneliness experiment.

PURPOSE: To explore older adults' experiences of loneliness across the lifecourse and the relationship with current loneliness. METHODS: Our sample is 6,708 people aged 65 years and older, resident in the UK, who participated in the BBC Loneliness Experiment in spring 2018. Loneliness was assessed using the 3 item UCLA Loneliness Scale, using a threshold score of 6+ to define loneliness. Participants were asked if they had experienced loneliness in 5 life-stages ranging from childhood to old age and, if so, at which stage had they experienced loneliness most intensely. Multivariate logistic regression analysis was used to estimate the odds ratios of experiencing loneliness in relation to previous experiences of loneliness and key covariates. FINDINGS: 41% of participants reported current feelings of loneliness and were more likely than those who did not to spend time alone, have poorer self-rated health, be unmarried, have fewer financial resources, and lower levels of neighbourhood trust. 71% reported they had experienced loneliness at some previous stage in their life, with 26% experiencing it in childhood (5-15 years and 39% as a young adult (16-24 years). Having had three or more prior life stage experiences of loneliness was an independent risk factor for current loneliness. CONCLUSION: We highlight the potential importance of examining older adults' experience of loneliness within a lifecourse perspective. We suggest a research agenda that examines the importance of the number and timing of previous loneliness experiences and investigates the strategies used to cope with loneliness across the lifecourse as a pathway to developing more effective and personalised loneliness interventions.

What Are the Benefits of Pet Ownership and Care Among People With Mild-to-Moderate Dementia? Findings From the IDEAL programme.

Pet ownership has been associated with positive outcomes in many populations, yet the associations with physical and psychological wellbeing in people with dementia remain unclear. The current study used baseline data from 1,542 people living at home with mild-to-moderate dementia from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) programme. Regression analyses investigated associations of pet ownership and pet care with self-reports of walking, loneliness, depression, and quality of life (QoL). After adjusting for covariates, having any pet was associated with higher likelihood of walking over 3 hr in the last week. Those with a dog and who were involved in its care were less likely to be lonely than those with no dog. Having any pet but no involvement in its care was associated with increased depression and decreased QoL compared with those without a pet. The key factor in the associations was involvement in the care of the pet by the person with dementia.

Is the relationship between subjective age, depressive symptoms and activities of daily living bidirectional?

OBJECTIVES: The aim of the current study was to investigate the prospective association between subjective age and depressive symptoms and activities of daily living (ADLs), and to test for reciprocal relationships. METHODS: We used data from 9886 respondents aged 50 years and over who participated in the English Longitudinal Study of Ageing (ELSA). We fitted a series of multiple regression models to analyse the relationships between subjective age, depressive symptoms, and ADL limitations over a four-year period. RESULTS: Following adjustment for demographic, social, cognitive, lifestyle, and health factors, we found that having an older subjective age independently predicted increased ADL limitations (B = -0.16, 95% CI -0.25, -0.07) and greater depressive symptoms (B = -0.40, 95% CI -0.57, -0.23). By contrast, we observed no significant associations between depressive symptoms and ADL limitations and future subjective age in the fully-adjusted model. CONCLUSION: In conclusion, older subjective age is associated with future depression and functional health, but the reverse pattern is confounded by initial health and social factors. These findings indicate that an individual's age identity may have an important effect on both depressive symptoms and activities of daily living.

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.