Dataset Information

A Comprehensive Model of Factors Associated With Subjective Perceptions of "Living Well" With Dementia: Findings From the IDEAL Study.

ABSTRACT: 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.

SUBMITTER: Clare L

PROVIDER: S-EPMC6416010 | biostudies-literature | 2019 Jan-Mar

REPOSITORIES: biostudies-literature

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A Comprehensive Model of Factors Associated With Subjective Perceptions of "Living Well" With Dementia: Findings From the IDEAL Study.

Clare Linda L Wu Yu-Tzu YT Jones Ian R IR Victor Christina R CR Nelis Sharon M SM Martyr Anthony A Quinn Catherine C Litherland Rachael R Pickett James A JA Hindle John V JV Jones Roy W RW Knapp Martin M Kopelman Michael D MD Morris Robin G RG Rusted Jennifer M JM Thom Jeanette M JM Lamont Ruth A RA Henderson Catherine C Rippon Isla I Hillman Alexandra A Matthews Fiona E FE

Alzheimer disease and associated disorders 20190101 1

<h4>Introduction</h4>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.<h4>Methods</h4>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 r ...[more]

PMID: 30802227

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Project description:BackgroundThe heterogeneity of symptoms across dementia subtypes has important implications for clinical practice and dementia research. Variation in subtypes and associated symptoms may influence the capability to live well for people with dementia and carers. The aim of this study is to investigate the potential impact of dementia subtypes on the capability to live well for both people with dementia and their carers.MethodsThe analysis was based on the 1283 dyads of community-dwelling people with dementia and carers in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) project, a large cohort study in Great Britain. Capability to live well was defined using three measures: quality of life, life satisfaction and wellbeing. Structural equation modelling was used to investigate capability to live well in seven dementia subtypes: Alzheimer's disease (AD), Vascular dementia (VaD), mixed AD/VaD, frontotemporal dementia (FTD), Parkinson's disease dementia (PDD), Lewy body dementia (LBD) and unspecified/other, accounting for dyadic data structure and adjusting for age and sex, type of relationship between person with dementia and their carer and the number of chronic conditions.ResultsThe major subtypes in this study population were AD (56%), VaD (11%) and mixed AD/VaD (21%). Compared to participants with AD, people with non-AD subtypes generally reported a lower capability to live well. Carers for people with PDD (- 1.71; 95% confidence interval (CI) - 3.24, - 0.18) and LBD (- 2.29; 95% CI - 3.84, - 0.75) also reported a lower capability to live well than carers for people with AD. After adjusting for demographic factors and comorbidity, PDD (- 4.28; 95% CI - 5.65, - 2.91) and LBD (- 3.76; 95% CI - 5.14, - 2.39) continued to have the strongest impact on both people with dementia and their carers.ConclusionsThis study suggests a variation in capability to live well across dementia subtypes. It is important for care providers to consider different needs across subtypes. Health professionals who provide post-diagnostic support may need to pay more attention to the complex needs of people living with PDD and LBD and their carers.

Project description:Importance:Subjective well-being is associated with reduced mortality, but it is not clear whether additional time is spent in good health or with chronic disease and disability. Objective:To evaluate the associations between affective well-being, total life expectancy, and life expectancy free of disability and chronic disease. Design, Setting, and Participants:This survey study used data on 9761 participants from the English Longitudinal Study of Ageing who were followed up for a maximum of 10 years (mean [SD] follow-up, 6 [3.7] years). Discrete-time multistate life table models were used to estimate total life expectancy and life expectancy free of disability or chronic disease. Data were collected between March 2002 and March 2013 and analyzed from December 2018 to April 2019. Analyses were adjusted for wealth and cohabiting status. Main Outcomes and Measures:The main outcome was life expectancy free of disability and chronic disease. Affective well-being was assessed at baseline as a combination of enjoyment of life and the lack of significant depressive symptoms. Disability was measured in terms of impaired activities of daily living and instrumental activities of daily living, and chronic disease as the occurrence of 6 serious illnesses. Results:Data were analyzed from 9761 participants (5297 [54%] female; mean [SD] age at baseline, 64 [9.9] years). High affective well-being was associated with longer life expectancy and with longer disability-free and chronic disease-free life expectancies. For example, a woman aged 50 years who reported high affective well-being could expect to live 6 years longer than a woman of similar age with low well-being; 31.4 of her remaining years (95% CI, 30.5-31.9 years) would be likely to be free of disability, compared with 20.8 years (95% CI, 20.1-22.1 years) for a woman with low affective well-being. A man aged 50 years with high affective well-being could expect to live 20.8 years (95% CI, 18.7-22.4 years) without chronic disease, compared with 11.4 years (95% CI, 8.5-14.6 years) for a man reporting low well-being. Similar patterns were observed at the ages of 60, 70, and 80 years. Conclusions and Relevance:This study suggests that people who report high levels of subjective well-being live longer and also healthier lives than those with lower well-being. These findings add weight to endeavors to promote the subjective well-being of older people.

Project description:ImportanceInpatient subspecialty consultations, a common and expensive practice within inpatient medicine, do not always go well; however, little is known about the failure modes of consultation, thus making it difficult to identify interventions to improve consultation quality.ObjectiveTo understand how stakeholders envision the ideal inpatient consultation and identify how and why consultations commonly fall short of this ideal.Design, setting, and participantsThis qualitative study used in-depth, semistructured interviews collected from April to October 2017 and analyzed from January 2018 to February 2020 using conventional content analysis. The setting was a single academic medical center in Boston, Massachusetts. Participants were hospitalists and specialists who had requested or performed a consultation for a non-intensive care unit patient in the previous 4 months, patients who had received a consultation while hospitalized at the medical center in the previous 15 months, and family members of such patients.Main outcomes and measuresConsultation experiences reported by participants. Clinicians were asked about characteristics of the ideal consultation, positive and negative consultation experiences, costs and benefits, and suggested improvements. Patients and family members were asked about their consultation experience, changes in care, communication preferences, and suggested improvements.ResultsThe study included 38 participants: 17 specialists, 13 hospitalists, 4 patients, and 4 family members. More than half (21 of 38) of the participants were female. There were 11 key information exchanges identified that occur among the specialist team, primary team, and patient/family during an ideal consultation. These exchanges are time sensitive and primarily carried out through unwritten protocols. We also identified 6 defects (process failures) that commonly derail information exchanges (complete omission, exclusion of a key stakeholder, poor timing, incomplete or inaccurate information, and misinterpretation) and 5 contextual factors (roles and boundaries, professionalism, team hierarchy, availability, and operational know-how) that influence how information exchange unfolds, making some consultations more prone to defects.Conclusions and relevanceSuccessful inpatient consultation requires a complicated, sequenced series of time-sensitive information exchanges that are highly vulnerable to failure. Maximizing the benefit of consultations will likely entail not only minimizing low-value consultations but also actively preventing defects, such as information inaccuracies and misinterpretation, that commonly derail the consultation process.

Project description:BackgroundThere 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.MethodsIDEAL-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.DiscussionIDEAL-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 under-researched groups of people with dementia, who are likely to have their own distinct perceptions of living well.

Dataset Information

A Comprehensive Model of Factors Associated With Subjective Perceptions of "Living Well" With Dementia: Findings From the IDEAL Study.

Publications

A Comprehensive Model of Factors Associated With Subjective Perceptions of "Living Well" With Dementia: Findings From the IDEAL Study.

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