Longitudinal associations of loneliness and social isolation with care dependence among older adults in Latin America and China: A 10/66 dementia research group population-based cohort study.

OBJECTIVES: With increasing life expectancy and rapid ageing, there is an expanding number of older people who have functional declines, greater needs for care and support and who are at increased risk of insufficient social interaction. Longitudinal investigations on the interplay between loneliness, social isolation and care dependence remain limited. This study thus aimed to investigate the longitudinal reciprocal association between social isolation/loneliness and care dependence among older adults in Latin America and China. METHODS: We analysed data from the population-based cohorts from the 10/66 Dementia Research Group (DRG) project (baseline 2003-07 and follow-up 2007-2010). The 10/66 DRG study recruited and followed up older adults aged 65 years or above in 11 catchment areas in Latin America and China. A total of 15,027 older adults from Latin America and China (mean age = 73.5, standard deviation = 6.5) were included in our analyses. Cross-lagged panel models were used to investigate potential reciprocal associations. RESULTS: Loneliness was positively associated with care dependence at baseline (ß = 0.11, p < 0.001 in Latin America; ß = 0.16, p < 0.05 in China]. Social isolation consistently had a stronger positive association with care dependence across all study sites in both waves. Longitudinally, care dependence positively predicted loneliness (ß = 0.10, p < 0.001) and social isolation (ß = 0.05, p < 0.001) in Latin American study sites but not in China. Yet there was no statistical evidence of lagged effects of loneliness and social isolation on care dependence in all study countries. CONCLUSIONS: Older people with care dependence are at risk of developing loneliness and social isolation. It is crucial to develop complex care models using a societal approach to address social and care needs holistically, especially for the older group with declining functional capacity. Future longitudinal research is required to explore the causal mechanisms of relationships and cultural differences, in order to inform the development of culturally appropriate care models.

Interventions to enhance pre-pregnancy care for women with type 2 diabetes: A systematic review of the literature.

AIMS: The aim of the study was to examine the content and impact of interventions that have been used to increase the uptake of pre-pregnancy care for women with type 2 diabetes, and their impact on maternal and fetal outcomes. METHODS: A systematic search of multiple databases was conducted in November 2021, and updated July 2022, to identify studies assessing interventions to enhance pre-pregnancy care for women with type 2 diabetes. Over 10% of articles were screened by two reviewers at title and abstract phase, after which all selected full-text articles were screened by two reviewers. Quality assessment was conducted using the Critical Appraisal Skills Programme checklist for cohort studies. Meta-analysis was not possible due to study heterogeneity; therefore, narrative synthesis was conducted. RESULTS: Four eligible cohort studies were identified. The conclusions able to be drawn by this review were limited as women with type 2 diabetes (n = 800) were in the minority in all four studies (35%-40%) and none of the interventions were exclusively tailored for them. The uptake of pre-pregnancy care was lower in women with type 2 diabetes (8%-10%) compared with other participant groups in the studies. Pregnancy preparation indicators generally improved among all groups exposed to pre-pregnancy care, with varying impact on pregnancy outcomes. CONCLUSIONS: This review demonstrates that previous interventions have had a limited impact on pre-pregnancy care uptake in women with type 2 diabetes. Future studies should focus on tailored interventions for improving pre-pregnancy care for women with type 2 diabetes, particularly those from ethnic minorities and living in poorer communities.

Advance Statements for Black African and Caribbean people (AdStAC): protocol for an implementation study.

BACKGROUND: The UK government committed to legislating for Advance Choice Documents/Advance Statements (ACD/AS) following their recommendation by the Independent Review of the MHA (2018). ACDs/AS are yet to be implemented in routine practice despite evidence and high demand; they are associated with improved therapeutic relationships and a reduction (25%, RR 0.75, CI 0.61-0.93) in compulsory psychiatric admission. Barriers to their implementation are well documented, ranging from low knowledge levels to logistical challenges in accessing the content during episodes of acute care. In the UK this is an issue for Black people, who experience detention rates disproportionately (over three times) higher than those of White British people and have poorer care experiences and outcomes. ACDs/AS allow for Black people to have their concerns heard by mental health professionals in a care system where they often feel their views are ignored. AdStAC aims to improve Black service users' experiences in mental health services in South London by co-producing and testing an ACD/AS implementation resource with Black service users, mental health professionals and carers/supporters of Black service users. METHODS/DESIGN: The study will take place in South London, England over three phases: 1) formative work through stakeholder workshops; 2) co-production of resources through a consensus development exercise and working groups; and 3) testing of the resources using quality improvement (QI) methods. A lived experience advisory group, staff advisory group and project steering committee will support the study throughout. The implementation resources will comprise: advance choice document/advance statement (ACD/AS) documentation, stakeholder trainings, a manual for mental health professionals to facilitate the processes of creating and revising advance statements, and informatics development. DISCUSSION: The implementation resources will help increase the likelihood of the new mental health legislation in England being implemented effectively; through aligning evidence-based medicine, policy and law to effectively provide positive clinical, social and financial outcomes for Black people, the National Health Service (NHS) and wider society. This study will likely benefit a wider group of people with severe mental illness, as when marginalised groups who are least engaged, can be supported with these strategies, then the strategies are likely to work for others.

The Every Mind Matters campaign: changes in mental health literacy and its associations with campaign awareness.

BACKGROUND: The aim of this study is to investigate the effects on population level mental health literacy (MHL) of Every Mind Matters over 30 months following campaign launch. METHODS: To observe changes in MHL over time, we conducted regression analyses on a nationally representative, repeated cross-sectional dataset of nine survey waves from September 2019 to March 2022 and an individual participant data meta-analysis with data from October 2019 to March 2021 to examine the association between campaign awareness and the outcomes. RESULTS: There were small improvements in knowledge of management of stress, depression and anxiety, mental health vigilance, sleep literacy and psychological wellbeing self-efficacy from September 2019 to March 2020 and a deterioration in most MHL outcomes from March 2020 compared with September 2019. Campaign awareness was positively associated with symptom management of depression and anxiety, help seeking self-efficacy, stigma related to mental disorders and mental health vigilance. CONCLUSIONS: There is little evidence that the campaign improved MHL in the general population beyond March 2020. Those who were aware of the campaign may have benefitted from its resources.

How is return on investment from quality improvement programmes conceptualised by mental healthcare leaders and why: a qualitative study.

BACKGROUND: Return on Investment (ROI), whereby the ratio of costs to benefits is assessed, is encouraged in-order to justify the value of Quality Improvement (QI) programmes. We previously performed a literature review to develop a ROI conceptual framework for QI programmes. We concluded that, QI-ROI is conceptualised as any monetary and non-monetary benefit. In the current study, we explored if this finding is shared by mental healthcare leaders. We also investigated the stability of this conceptualisation against influencing factors and potential for disinvestment. METHODS: We performed qualitative interviews with leaders in an NHS mental health organisation. There were 16 participants: nine board members and seven senior leaders. The interviews were held online via Microsoft Teams and lasted an hour on average. We performed deductive-inductive analysis to seek data from our initial ROI framework and any new data. RESULTS: We found that in mental healthcare, QI-ROI is also conceptualised as any valued monetary and non-monetary benefits. There was a strong emphasis on benefits to external partners and a de-emphasis of benefit monetisation. This conceptualisation was influenced by the 1) perceived mandates to improve quality and manage scarce resources, 2) expectations from QI, 3) health and social care values, 4) ambiguity over expectations, and 5) uncertainty over outcomes. Uncertainty, ambiguity, and potential for disinvestment posed a threat to the stability of this conceptualisation but did not ultimately change it. Health and social care values supported maintaining the QI-ROI as any benefit, with a focus on patients and staff outcomes. Socio-political desires to improve quality were strong drivers for QI investment. CONCLUSION: Mental healthcare leaders primarily conceptualise QI-ROI as any valued benefit. The inclusion of externalised outcomes which are hard to attribute may be challenging. However, mental healthcare services do collaborate with external partners. The de-emphases of benefit monetisation may also be controversial due to the need for financial accountability. Mental healthcare leaders recognise the importance of efficiency savings. However, they raised concerns over the legitimacy and utility of traditional ROI as a tool for assessing QI value. Further research is needed to bring more clarity on these aspects of the QI-ROI concept.

A multi-centre cohort study on healthcare use due to medication-related harm: the role of frailty and polypharmacy.

OBJECTIVES: To determine the association between frailty and medication-related harm requiring healthcare utilisation. DESIGN: Prospective observational cohort study. SETTING: Six primary and five secondary care sites across South East England, September 2013-November 2015. PARTICIPANTS: One thousand and two hundred and eighty participants, ≥65 years old, who were due for discharge from general medicine and older persons' wards following an acute episode of care. Exclusion criteria were limited life expectancy, transfer to another hospital and consent not gained. MAIN OUTCOME MEASURES: Medication-related harm requiring healthcare utilisation (including primary, secondary or tertiary care consultations related to MRH), including adverse drug reactions, non-adherence and medication error determined via the review of data from three sources: patient/carer reports gathered through a structured telephone interview; primary care medical record review; and prospective consultant-led review of readmission to recruiting hospital. Frailty was measured using a Frailty Index, developed using a standardised approach. Marginal estimates were obtained from logistic regression models to examine how probabilities of healthcare service use due to medication-related harm were associated with increasing number of medicines and frailty. RESULTS: Healthcare utilisation due to medication-related harm was significantly associated with frailty (OR = 10.06, 95% CI 2.06-49.26, P = 0.004), independent of age, gender, and number of medicines. With increasing frailty, the need for healthcare use as a result of MRH increases from a probability of around 0.2-0.4. This is also the case for the number of medicines. CONCLUSIONS: Frailty is associated with MRH, independent of polypharmacy. Reducing the burden of frailty through an integrated health and social care approach, alongside strategies to reduce inappropriate polypharmacy, may reduce MRH related healthcare utilisation.

The development of the concept of return-on-investment from large-scale quality improvement programmes in healthcare: an integrative systematic literature review.

BACKGROUND: Return on Investment (ROI) is increasingly being used to evaluate financial benefits from healthcare Quality Improvement (QI). ROI is traditionally used to evaluate investment performance in the commercial field. Little is known about ROI in healthcare. The aim of this systematic review was to analyse and develop ROI as a concept and develop a ROI conceptual framework for large-scale healthcare QI programmes. METHODS: We searched Medline, Embase, Global health, PsycInfo, EconLit, NHS EED, Web of Science, Google Scholar using ROI or returns-on-investment concepts (e.g., cost-benefit, cost-effectiveness, value). We combined this terms with healthcare and QI. Included articles discussed at least three organisational QI benefits, including financial or patient benefits. We synthesised the different ways in which ROI or return-on-investment concepts were used and discussed by the QI literature; first the economically focused, then the non-economically focused QI literature. We then integrated these literatures to summarise their combined views. RESULTS: We retrieved 10 428 articles. One hundred and two (102) articles were selected for full text screening. Of these 34 were excluded and 68 included. The included articles were QI economic, effectiveness, process, and impact evaluations as well as reports and conceptual literature. Fifteen of 68 articles were directly focused on QI programme economic outcomes. Of these, only four focused on ROI. ROI related concepts in this group included cost-effectiveness, cost-benefit, ROI, cost-saving, cost-reduction, and cost-avoidance. The remaining articles mainly mentioned efficiency, productivity, value, or benefits. Financial outcomes were not the main goal of QI programmes. We found that the ROI concept in healthcare QI aligned with the concepts of value and benefit, both monetary and non-monetary. CONCLUSION: Our analysis of the reviewed literature indicates that ROI in QI is conceptualised as value or benefit as demonstrated through a combination of significant outcomes for one or more stakeholders in healthcare organisations. As such, organisations at different developmental stages can deduce benefits that are relevant and legitimate as per their contextual needs. TRIAL REGISTRATION: Review registration: PROSPERO; CRD42021236948.

Psychometric properties of the PHQ-9 measure of depression among Brazilian older adults.

Objectives: To obtain evidence on the psychometric properties of the Patient Health Questionnaire - 9 (PHQ-9, one of the most extensively used tools for assessing depression) in the Brazilian older population.Method: Data on 3,356 Brazilian adults aged 60+ years living in Guarulhos, São Paulo state were used. The factor structure of the questionnaire was analysed using a factor analysis approach. The questionnaire's measurement equivalence was tested across gender, age, personal income, and education level groups. The scores were compared across groups based on the highest level of equivalence achieved. The questionnaire's internal consistency was analysed considering its factor structure.Results: A one-factor solution was identified as the most adequate factor structure, with the factor explaining 57.6% of the items' variance. The correlation of the resulting latent score with the overall raw sum score in the PHQ-9 was r = 0.96. Measurement equivalence regarding thresholds and loadings was achieved for all tested groups. On average, women, older, less educated, and poorer people had higher latent scores on the depression factor. The measure showed a good internal consistency with Revelle's omega total ωt=0.92.Conclusion: The results suggest that, among Brazilian older adults living in Guarulhos, São Paulo state, the PHQ-9 measures depressive symptomatology equivalently across different sociodemographic subgroups. Moreover, it can be scored using the raw sum of the item scores to adequately reflect different levels of depressive symptomatology.

Home-Based Contingency Management Delivered by Community Health Workers to Improve Alcohol Abstinence: A Randomized Control Trial.

AIM: To evaluate the effectiveness of home-based contingency management (CM) in improving abstinence in an incentive-dependent manner among alcoholic individuals. METHODS: A 12-week, home-visit (HV) only controlled, randomized incentive-ranging trial of 161 adults with current alcohol dependence was recruited using social network theory techniques. Participants randomly received HV, low- (CM-L) or higher-magnitude CM (CM-H). Community health workers made regular home visits, monitored drinking behavior and delivered CM as appropriate. Two follow-up visits at weeks 13 and 16 were conducted to assess whether abstinence would still be maintained after the interventions discontinued. Rates of continuous reported abstinence (primary), numbers of positive breath samples (secondary) over the intervention period and rates of prolonged reported abstinence (secondary) were evaluated. RESULTS: CM did not significantly improve the rates of continuous reported abstinence across the 12-week intervention period (odds ratio (OR) for trend 1.2, 95% confidence interval (CI) 0.7-2.1, P = 0.601). There was a significant reduction, however, in the average number of positive breath samples submitted by the CM-H group (generalized linear model, ß -0.5, 95% CI -0.9 to -0.2, P = 0.005). The CM-H arm also had a significantly higher abstinence rate during the follow-up period (OR 3.4, 95% CI 1.3-8.8, P = 0.013). Event history model suggested that the CM-H condition had significantly higher chances of achieving renewed abstinence across the study period (OR 2.0, 95% CI 1.3-3.2, P = 0.003). CONCLUSIONS: Home-based CM with sufficient incentive is promising in reducing alcohol use and in improving rates of abstinence over time. Allowing for a certain grace period may better capture the delayed treatment effect of home-based CM.

Sertraline and Mirtazapine Versus Placebo in Subgroups of Depression in Dementia: Findings From the HTA-SADD Randomized Controlled Trial.

OBJECTIVE: Studies have shown that antidepressants are no better than placebo in treating depression in dementia. The authors examined antidepressant efficacy in subgroups of depression in dementia with different depressive symptom profiles. METHODS: This study focuses on exploratory secondary analyses on the randomized, parallel-group, double-blind, placebo-controlled Health Technology Assessment Study of the Use of Antidepressants for Depression in Dementia (HTA-SADD) trial. The setting included old-age psychiatry services in nine centers in England. The participants included 326 patients meeting National Institute of Neurological and Communicative Disorders and Stroke/Alzheimer's Disease and Related Disorders Association probable/possible Alzheimer disease criteria, and Cornell Scale for Depression in Dementia (CSDD) scores of 8 or more. Intervention was placebo (n = 111), sertraline (n = 107), or mirtazapine (n = 108). Latent class analyses (LCA) on baseline CSDD items clustered participants into symptom-based subgroups. Mixed-model analysis evaluated CSDD improvement at 13 and 39 weeks by randomization in each subgroup. RESULTS: LCA yielded 4 subgroups: severe (n = 34), psychological (n = 86), affective (n = 129), and somatic (n = 77). Mirtazapine, but not sertraline, outperformed placebo in the psychological subgroup at week 13 (adjusted estimate: -2.77 [standard error (SE) 1.16; 95% confidence interval: -5.09 to -0.46]), which remained, but lost statistical significance at week 39 (adjusted estimate: -2.97 [SE 1.59; 95% confidence interval: -6.15 to 0.20]). Neither sertraline nor mirtazapine outperformed placebo in the other subgroups. CONCLUSION: Because of the exploratory nature of the analyses and the small sample sizes for subgroup analysis there is the need for caution in interpreting these data. Replication of the potential effects of mirtazapine in the subgroup of those with depression in dementia with "psychological" symptoms would be valuable. These data should not change clinical practice, but future trials should consider stratifying types of depression in dementia in secondary analyses.

Development of a healthy ageing index in Latin American countries - a 10/66 dementia research group population-based study.

BACKGROUND: Our population is ageing and in 2050 more than one out of five people will be 60 years or older; 80% of whom will be living in a low-and-middle income country. Living longer does not entail living healthier; however, there is not a widely accepted measure of healthy ageing hampering policy and research. The World Health Organization defines healthy ageing as the process of developing and maintaining functional ability that will enable well-being in older age. We aimed to create a healthy ageing index (HAI) in a subset of six low-and-middle income countries, part of the 10/66 study, by using items of functional ability and intrinsic capacity. METHODS: The study sample included residents 65-years old and over (n = 12,865) from catchment area sites in Cuba, Dominican Republic, Peru, Venezuela, Mexico and Puerto Rico. Items were collected by interviewing participants or key informants between 2003 and 2010. Two-stage factor analysis was employed and we compared one-factor, second-order and bifactor models. The psychometric properties of the index, including reliability, replicability, unidimensionality and concurrent convergent validity as well as measurement invariance per ethnic group and gender were further examined in the best fit model. RESULTS: The bifactor model displayed superior model fit statistics supporting that a general factor underlies the various items but other subdomain factors are also needed. The HAI indicated excellent reliability (ω = 0.96, ωΗ = 0.84), replicability (H = 0.96), some support for unidimensionality (Explained Common Variance = 0.65) and some concurrent convergent validity with self-rated health. Scalar measurement invariance per ethnic group and gender was supported. CONCLUSIONS: A HAI with excellent psychometric properties was created by using items of functional ability and intrinsic capacity in a subset of six low-and-middle income countries. Further research is needed to explore sub-population differences and to validate this index to other cultural settings.

Multimorbidity and care dependence in older adults: a longitudinal analysis of findings from the 10/66 study.

BACKGROUND: In an ageing world facing an epidemic of chronic diseases, there is great interest in the burden of multimorbidity on individuals and caregivers, yet no studies have examined the longitudinal association between multimorbidity and care dependence in low and middle income countries. Mental and cognitive disorders are associated with dependence but little is known about their role in the pathway to dependence in the context of multimorbidity. This study aims to determine (1) the association of multimorbidity with the onset of care dependence in older adults, accounting for mortality and controlling for sociodemographic factors, and (2) the independent effects of physical multimorbidity, mental and cognitive disorders. METHODS: A population-based cohort study of people aged 65 years and older in six countries in Latin America, and China. Data on chronic conditions and sociodemographic factors were collected at baseline. Multimorbidity was ascertained as a count of up to 15 mental, cognitive and physical health conditions. Dependence was ascertained through informant interviews at baseline and follow-up. We used competing risk regression to assess the association between multimorbidity and the onset of care dependence, acknowledging the possibility of dependence-free death. We also assessed the independent effects of physical multimorbidity and depression, anxiety and dementia individually. RESULTS: 12,965 participants, with no needs for care at baseline, were followed up for a median of 3.0-4.9 years. Each unit increase in multimorbidity count increased the cumulative risk of dependence by 20% in the fully adjusted model. Age was the only variable to confound this relationship. Physical multimorbidity was associated with only a modest increased risk of care dependence. Dementia, depression and anxiety were independently associated with incident care dependence at every level of physical multimorbidity, and depression and anxiety attenuated the effect of physical multimorbidity. CONCLUSION: Multimorbidity consistently predicts care dependence with little variation between countries. Physical multimorbidity imparts a lower risk than multimorbidity with mental and cognitive disorders included. Mental and cognitive disorders independently increase the risk of care dependence. Comprehensive and holistic assessment of disorders of body, brain and mind can help to identify older people at high risk of care dependence.

Neurological signs as early determinants of dementia and predictors of mortality among older adults in Latin America: a 10/66 study using the NEUROEX assessment.

BACKGROUND: Neurodegenerative processes in the elderly damage the brain, leading to progressive, incapacitating cognitive, behavioral, and motor dysfunctions which culminate in dementia. Fully manifest dementia is likely to be preceded by the presence of neurological signs, which could serve as early determinants of dementia and predictors of mortality. The aims of this study were to assess the construct validity of a neurological battery assessed among older adults living in Latin America, and to test the association of groups of neurological signs with dementia cross-sectionally, and mortality longitudinally. METHODS: The 10/66 Dementia Research Group collected information on neurological symptoms via the NEUROEX assessment in population based surveys of older adults living in low and middle-income countries. Data from 10,856 adults participating in the baseline assessment of the 10/66 study and living in Cuba, Dominican Republic, Peru, Venezuela and Mexico were analysed. Exploratory and confirmatory analysis were used to explore dimensionality of neurological symptoms. Poisson regression analyses were used to link groups of neurological signs with dementia at baseline. Cox hazard regression models were used to explore the predictive validity of neurological signs with mortality at follow up. RESULTS: Exploratory and confirmatory factor analyses revealed four dimensions of neurological signs, which are associated with lesions of specific brain regions. The identified factors showed consistency with groups of neurological signs such as frontal, cerebellar, extrapyramidal, and more generalized gait disturbance signs. Regression analyses revealed that all groups of neurological signs were positively associated with dementia at baseline and predicted mortality at follow up. CONCLUSIONS: Our findings support the construct and predictive validity of the NEUROEX assessment, linking neurological and gait impairments with dementia at baseline, and with mortality at follow up among older adults living in five Latin American countries.

Estimating Impact Based on Stages of Mental Illness on Employment and Earnings in Bangkok Metropolitan Region.

BACKGROUND: Evidence suggests mental disorders are associated with substantial economic burden. However, as the status of mental illness tends to change over time, estimating the burden based on cross-sectional presence or severity of illness may be problematic. An approach based on illness staging may provide a more stable estimate. AIMS OF THE STUDY: We aim to explore whether three predefined stages of mental illness (i.e. early active, remitted, chronic) have differential impact on employment and earnings. METHODS: A community survey of household population aged 18 and over in a university hospital's catchment area within Bangkok Metropolitan Region (BMR) was conducted (N=3877). The third version of the World Health Organization-Composite International Diagnostic Interview (WHO-CIDI) was administered to assess lifetime and 12-month common major mental disorders and the Kessler Psychological Distress Scale (K6) to assess current psychological distress. Multivariate approaches were used to estimate the observed and expected annual earnings and employment for persons with mental illness at each stage, controlling for sociodemographic variables. RESULTS: Increasing level of chronicity, from the early active to the remitted and then to the chronic stage, was associated with increasing reduction in earnings (beta --0.14 95% CI -0.15 to --0.13, p = 0.004). All stages of illness were significantly associated with reduced earnings, with individuals at chronic stage having 12-month earnings averaging 78,522 Thai baht (USD 2,356) less than those without a history of mental illness, followed by those at remitted (38,703 baht or USD 1,161) and early active stages (25,870 baht or USD 776), with the same values for control variables. Remitted and chronic stages, but not early active one, were associated with reduced odds of paid employment. The estimated societal-level loss in earnings was 26.9 billion baht (USD 808.2 million) in the total BMR population. DISCUSSION: The findings suggest that all stages of mental disorders, particularly chronic one, are associated with substantial individual- and societal-level burden, and highlight differences in employment and earnings gaps among individuals at each stage of illness. IMPLICATIONS FOR HEALTH CARE PROVISION AND USE: Mental health service should be provided in close coordination with vocational and welfare services in order to alleviate financial and work difficulties faced by mentally ill people at various stages of illness. IMPLICATIONS FOR HEALTH POLICIES: There is a need to tailor disability benefits and employment promotion schemes to the needs of mentally ill people at each stage in order to maximize their productivity and quality of life. IMPLICATIONS FOR FURTHER RESEARCH: Direct and other indirect costs of mental illness should be further investigated. Longitudinal studies would help to clarify how much of the reported association is due to mental illness causing unemployment and reduced earnings or vice versa.

Quality-of-life assessment in dementia: the use of DEMQOL and DEMQOL-Proxy total scores.

PURPOSE: There is a need to determine whether health-related quality-of-life (HRQL) assessments in dementia capture what is important, to form a coherent basis for guiding research and clinical and policy decisions. This study investigated structural validity of HRQL assessments made using the DEMQOL system, with particular interest in studying domains that might be central to HRQL, and the external validity of these HRQL measurements. METHODS: HRQL of people with dementia was evaluated by 868 self-reports (DEMQOL) and 909 proxy reports (DEMQOL-Proxy) at a community memory service. Exploratory and confirmatory factor analyses (EFA and CFA) were conducted using bifactor models to investigate domains that might be central to general HRQL. Reliability of the general and specific factors measured by the bifactor models was examined using omega (ω) and omega hierarchical (ω h) coefficients. Multiple-indicators multiple-causes models were used to explore the external validity of these HRQL measurements in terms of their associations with other clinical assessments. RESULTS: Bifactor models showed adequate goodness of fit, supporting HRQL in dementia as a general construct that underlies a diverse range of health indicators. At the same time, additional factors were necessary to explain residual covariation of items within specific health domains identified from the literature. Based on these models, DEMQOL and DEMQOL-Proxy overall total scores showed excellent reliability (ω h > 0.8). After accounting for common variance due to a general factor, subscale scores were less reliable (ω h < 0.7) for informing on individual differences in specific HRQL domains. Depression was more strongly associated with general HRQL based on DEMQOL than on DEMQOL-Proxy (-0.55 vs -0.22). Cognitive impairment had no reliable association with general HRQL based on DEMQOL or DEMQOL-Proxy. CONCLUSIONS: The tenability of a bifactor model of HRQL in dementia suggests that it is possible to retain theoretical focus on the assessment of a general phenomenon, while exploring variation in specific HRQL domains for insights on what may lie at the 'heart' of HRQL for people with dementia. These data suggest that DEMQOL and DEMQOL-Proxy total scores are likely to be accurate measures of individual differences in HRQL, but that subscale scores should not be used. No specific domain was solely responsible for general HRQL at dementia diagnosis. Better HRQL was moderately associated with less depressive symptoms, but this was less apparent based on informant reports. HRQL was not associated with severity of cognitive impairment.

Caregiver Burden: Looking Beyond the Unidimensional Total Score.

The Zarit Burden Interview allows caregiver burden to be interpreted from a total score. However, recent studies propose a multidimensional Zarit Burden Interview model. This study aims to determine the agreement between unidimensional (UD) and multidimensional (MD) classification of burden, and differences in predictors among identified groups. We studied 165 dyads of dementia patients and primary caregivers. Caregivers were dichotomized into low-burden and high-burden groups based upon: (1) UD score using quartile cutoffs; and (2) MD model via exploratory cluster analysis. We compared UD versus MD 2×2 classification of burden using κ statistics. Caregivers not showing agreement by either definition were classified as "intermediate" burden. We performed binary logistic regression to ascertain differences in predictive factors. The 2 models showed moderate agreement (κ=0.72, P<0.01), yielding 104 low, 20 intermediate (UD "low burden"/MD "high burden"), and 41 high-burden caregivers. Neuropsychiatric symptoms [odds ratio (OR)=1.27, P=0.003], coresidence (OR=6.32, P=0.040), and decreased caregiving hours (OR=0.99, P=0.018) were associated with intermediate burden, whereas neuropsychiatric symptoms (OR=1.21, P=0.001) and adult children caregivers (OR=2.80, P=0.055) were associated with high burden. Our results highlight the differences between UD and MD classification of caregiver burden. Future studies should explore the significance of the noncongruent intermediate group and its predictors.

Differential perceptions of quality of life (QoL) in community-dwelling persons with mild-to-moderate dementia.

BACKGROUND: Discordance between patient- and caregiver-reported quality of life (QoL) is well recognized. This study sought to (i) identify predictors of discrepancy between patient- and caregiver-rated QoL amongst community-dwelling persons with mild-to-moderate dementia, and (ii) differentiate between patients who systematically rate their QoL lower versus those who rate their QoL higher relative to their caregiver ratings. METHODS: We recruited 165 patient-caregiver dyads with mild-to-moderate dementia. Quality of life in Alzheimer's disease (QoL-AD) scale was administered separately to patients and caregivers. Data on socio-demographics, interpersonal relationship, and disease-related characteristics (cognitive performance, mood, neuropsychiatric symptoms, functional ability, and caregiver burden) were collected. Patient-caregiver dyads were categorized based on whether patient-rated QoL was lower or higher than their respective caregiver ratings. Univariate analyses and multiple regression models were performed to identify predictors of dyadic rating discrepancy. RESULTS: Mean patient-rated QoL was significantly higher than caregiver rating (mean difference: 3.8 ± 7.1, p < 0.001). Majority (111 (67.2%)) of patients had more positive self-perceived QoL (QoL-ADp (QoL-AD self rated by the patient) > QoL-ADc (QoL-AD proxy-rated by a caregiver)), compared with those (44 (26.7%)) with poorer self-perceived QoL (QoL-ADp < QoL-ADc). Patient's education level, depressive symptoms, and severity of neuropsychiatric symptoms predicted magnitude of discrepancy. Depression (OR = 1.17, 95% CI = 1.02-1.35) and being cared for by other relative (non-spouse/adult child; OR = 7.54, 95% CI = 1.07-53.03) predicted poorer self-perceived QoL. CONCLUSIONS: Dyadic rating discrepancy in QoL should draw the clinician's attention to patient depression and neuropsychiatric symptoms. Consideration should also be given to nature of patient-caregiver relationship when discordance between patient and caregiver assessments of QoL is observed.

Study protocol for a cross-sectional online survey investigating patient preferences and experiences of waiting for elective cardiac surgery.

INTRODUCTION: Being on a waiting list for elective (planned) cardiac surgery can be physically and psychologically challenging for patients. Research suggests that stress associated with waiting for surgery is dependent on different individual and contextual factors. However, most data on patients' experiences of waiting for surgery and preferences for waiting list management derives from non-cardiac clinical populations. The aim of the current study is to explore patients' experiences of being on a waiting list for elective cardiac surgery, and their views on how the waiting experience could be improved in the future. This work will inform the patient management strategy during the waiting period for surgery across the four major hospitals in London directly involved in this study, and potentially beyond by transferring learning to other services. METHODS AND ANALYSIS: This is a mixed-methods study that will collect quantitative and qualitative data using a cross-sectional online survey. Patients who are on waiting lists for elective surgery across four major cardiac surgery departments in London hospitals, and are at least 18 years old, will be invited by their healthcare team via text message or letter to complete the survey. The target sample size of non-randomly selected participants will be 268. Bivariable and multivariable regression models will be used to assess associations between survey items measuring the impact of the cardiac condition on specific life domains (eg, daily activities, social and family relationships, hobbies, sexual life), anxiety and depression symptoms as measured by the Patient Health Questionnaire-4 and survey items evaluating experiences of health services. Data on experience and preferences for improvements to the waiting experience will be analysed with qualitative content analysis using an inductive approach. ETHICS AND DISSEMINATION: This study was reviewed and granted ethical approval by the East of England-East Cambridge Research Ethics Committee. Findings from this study will be disseminated through peer-reviewed journals, a research website and social media and with an online event engaging patients, members of the public, healthcare professionals and other relevant stakeholders. TRIAL REGISTRATION NUMB: NCT05996640.

Cost of informal care for community-dwelling mild-moderate dementia patients in a developed Southeast Asian country.

BACKGROUND: Cost of informal care constitutes an important component of total dementia care cost. It also reflects resource utilization by patients and caregivers. We aim to quantify the informal cost of care for mild to moderate dementia patients. METHODS: We recruited 165 patient-caregiver dyads with mild to moderate dementia. Informal care burden was assessed using the Resource Utilization in Dementia (RUD)-Lite instrument. A generalized linear model was fitted for association between cost of informal care and cognitive impairment, taking into account patient demographics, disease factors, and use of paid domestic help. Marginal estimates were obtained from the model for the purpose of illustration and discussion. RESULTS: Total hours of informal care by primary caregiver doubled in moderate dementia patients, with 57.9% having paid domestic help to assist in care. Functional factors and use of paid domestic help were significantly associated with informal care costs. Costs were consistently higher for patients without paid domestic help for mild- and moderate dementia. CONCLUSION: This study demonstrates the informal care costs of caring for mild-moderate dementia patients in Singapore, with the unique cost savings provided by live-in paid domestic help, and potentially may aid policy-makers in allocation of resources and support to caregivers.