This dissertation comprises three main chapters, book-ended by an introduction and a concluding chapter. Chapters 2 and 3 examine the impacts of health insurance programs in the Philippines and Indonesia on healthcare utilization, healthcare expenditures, and health outcomes. Chapter 4 then examines the age-related trajectories of health-related quality of life of Canadians with diabetes. In Chapter 2, we examine the impact of the national health insurance program of The Philippines on maternal and health outcomes among poor mothers. We find that the program is associated with greater likelihood of prenatal care visits, facility-based birth delivery, and post-natal care, and the impact is most pronounced among the poorest women, but we do not observe improvements in birthweight. In Chapter 3, we evaluate the impact of Jamkesmas, the largest subsidized health insurance in Indonesia, on healthcare utilization, health outcomes, and healthcare expenditures. We find that Jamkesmas is associated with higher probability of using outpatient care and inpatient care and lower out-of-pocket healthcare expenditures, but no significant impact on catastrophic healthcare expenditures and health outcomes. In Chapter 4, we characterize the age-related-trajectories of health-related quality of life of Canadians with diabetes. We find that women and low-income individuals with diabetes experience a lower health-related quality of life trajectories, but there is no evidence that the rate of deterioration of their health-related quality of life is faster than their counterparts without diabetes. / Dissertation / Doctor of Philosophy (PhD)

N/A / Thesis / Master of Science (MS)

The purpose of this project was to augment self-efficacy, outcome expectations, and self-regulatory skills for women with breast cancer through a quality of life intervention based on Social Cognitive Theory. Relationships between social cognitive variables, positive coping behaviors, and quality of life were explored. The intervention was conducted in collaboration with an established cancer treatment center and provided information, guided feedback, and mastery experiences in a supportive environment for breast cancer survivors. A total of 32 women were enrolled and randomized to either the 8-week intervention or standard-care. With a final n of 14, the lack of statistical power made it difficult to determine whether differences existed between the two groups. Data trends suggested that some women benefited from the program. Implications for the content and delivery of future psychosocial interventions with cancer patients were discussed. / Ph. D.

The comorbidity of anxiety disorders and autism spectrum disorder (ASD) is well-established. Although research on the comorbidity of anxiety disorders in adults with ASD is limited, preliminary studies suggest rates of comorbidity comparable to those found in children and adolescents. Little is known about the manifestation of anxiety symptoms in adults with ASD or the potential for these symptoms to impact quality of life in this population. The current study aimed to examine the role of anxiety symptoms in quality of life among young adults with ASD. We collected online survey data from a large sample (N = 224) of parents of young adults with ASD and a subsample of adults with ASD. Parent- and self-report data suggested a substantial proportion of adults with ASD exceeded clinical cutoffs for anxiety symptoms. Anxiety moderated the relationship between ASD severity and the social relations domain of quality of life. Anxiety symptoms did not, however, significantly moderate the effect on the psychological domain. Exploratory analyses also demonstrated significant indirect effects of ASD severity on social and psychological quality of life through anxiety symptoms. Results provide preliminary evidence that anxiety symptoms contribute to quality of life in adults with ASD independently of core ASD symptomatology. Future research should aim to further characterize anxiety symptoms among adults with ASD, as well as evaluate the impact of anxiety symptoms on quality of life and overall outcome through the use of prospective longitudinal studies. / Master of Science

No / To investigate the cross-cultural validity of international Dutch-English comparisons when using the Dutch Rivermead Mobility Index (RMI), and the intra-test reliability and construct validity of the Dutch RMI. METHODS: Cross-cultural validity was studied in a combined data-set of Dutch and English patients undergoing rehabilitation after stroke, who were assessed with the Dutch version of the RMI and the original English RMI, respectively. Mokken scale analysis was used to investigate unidimensionality, monotone homogeneity model fit, and differential item functioning between the Dutch and the English RMI. Intra-test reliability and construct validity were studied in the Dutch patients by calculating the reliability coefficient and correlating the Dutch RMI and the Dutch Barthel Index. RESULTS: The RMI was completed for Dutch (n = 200) and English (n = 420) patients after stroke. The unidimensionality and monotone homogeneity model fit of the RMI were excellent: combined Dutch-English data-set (coefficient H = 0.91); Dutch data-set (coefficient H = 0.93); English data-set (coefficient H = 0.89). No differential item functioning was found between the Dutch and the English RMI. The intra-test reliability of the Dutch RMI was excellent (coefficient rho = 0.97). In a sub-sample of patients (n = 91), the Dutch RMI correlated strongly with the Dutch Barthel Index (Spearman's correlation coefficient rho = 0.84). CONCLUSION: The Dutch RMI allows valid international Dutch-English comparisons, and has excellent intra-test reliability and construct validity.

No / In a developing country such as South Africa, where needs surpass resources, elderly persons living in institutional care due to dementia are generally viewed as well-cared for if their basic needs for security, food and personal hygiene are met. Due to the disabling effect of the condition, residents are often unable to engage independently in occupations that they find meaningful, requiring staff support to enable them to do this. In South Africa staff training on dementia and person-centred care (PCC) is limited, which in turn impacts on how staff interact with residents. This often results in persons with dementia being deprived of opportunities for engagement and occupation that have the potential to bring about well-being. The first author conducted an initial pilot feasibility study to assess Dementia Care Mapping (DCM), a method used internationally to help improve the quality of formal dementia care, at three identified residential care facilities in South Africa. DCM is an observational tool that involves observing care from the perspective of the person with dementia. This paper examines whether DCM could be used as a means to develop quality dementia care in formalcare settings in South Africa despite a lack of human and financial resources.

Yes / Area level factors, such as deprivation and urban/rural settings, have been associated with variation in local resources and services and health inequality in later life. The aim of this study is to investigate the potential impact of deprivation and urban/rural areas on capability to live well with dementia and to examine whether availability of informal carers modified the associations. The analysis was based on a large cohort study of 1547 community-dwelling people with dementia across Great Britain. Quality of life, life satisfaction, and well-being were measured as indices of "living well." Multivariate modelling was used to investigate differences in living well measures across deprivation quintiles and urban/rural areas adjusting for sociodemographic factors and number of comorbidities and stratifying by three groups: those living with a carer, those with a noncoresident carer and those without a carer. Negative dose-response relationships between deprivation and measures of quality of life (-2.12; 95% CI: -3.52, -0.73), life satisfaction (-1.27; 95% CI: -2.70, 0.16), and well-being (-5.24; 95% CI: -10.11, -0.36) were found in participants living with a carer. The associations were less clear in those with a noncoresident carer and those without a carer but these two groups generally reported lower scores on living well indicators than participants living with a carer. There was no urban/rural difference. The findings suggest inequalities in living well with dementia according to levels of deprivation. Additional resources are needed to improve postdiagnostic care in highly deprived areas and support those who have no informal carer.

Yes / and Objectives: There is a growing evidence base that informal caregivers can identify positive aspects of providing care and that this may have a beneficial influence on their well-being. The aim of this systematic review was to explore how positive aspects of caregiving (PAC) affects the well-being of caregivers of people with dementia. Research Design and Methods: We searched electronic databases for quantitative studies exploring the association between PAC and caregiver well-being. Studies were included if they involved informal (unpaid) caregivers of people with dementia, at least 75% of whom had to be residing in the community. A narrative synthesis was used to explore patterns within the data. Results: Fifty-three studies were included in the narrative synthesis. Most studies utilized a cross-sectional design. The majority of samples consisted primarily of spouses and female caregivers. Twenty different PAC measures were employed and studies referred to a variety of constructs, such as satisfactions, gains, meaning, and rewards. PAC was associated with lower depressive symptoms and burden. Conversely, PAC was associated with better mental health, quality of life, satisfaction with life, and competence/self-efficacy. PAC was not associated with self-rated health or personal strain/stress. Discussion and Implications: The findings suggest that identifying PAC is associated with better caregiver well-being, although further longitudinal studies are required to explore how this relationship changes over time. Interventions that enable caregivers to gain a more positive experience of caregiving could be beneficial for their well-being.

Yes / . Negative impacts of the COVID-19 pandemic on people with dementia have been widely-documented, but most studies have relied on carer reports and few have compared responses to information collected before the pandemic. Objective. We aimed to explore the impact of the pandemic on community-dwelling individuals with mild-to-moderate dementia and compare responses with pre-pandemic data. Methods. During the second wave of the pandemic we conducted structured telephone interviews with 173 people with dementia and 242 carers acting as informants, all of whom had previously participated in the IDEAL cohort. Where possible we benchmarked responses against pre-pandemic data. Results. Significant perceived negative impacts were identified in cognitive and functional skills and ability to engage in self-care and manage everyday activities, along with increased levels of loneliness and discontinuity in sense of self and a decline in perceived capability to ‘live well’. Compared to pre-pandemic data there were lower levels of pain, depression and anxiety, higher levels of optimism, and better satisfaction with family support. There was little impact on physical health, mood, social connections and relationships, or perceptions of neighbourhood characteristics. Conclusion. Efforts to mitigate negative impacts of pandemic-related restrictions and restore quality of life could focus on reablement to address the effects on participation in everyday activities, creating opportunities for social contact to reduce loneliness, and personalised planning to reconnect people with their pre-COVID selves. Such efforts may build on the resilience demonstrated by people with dementia and carers in coping with the pandemic. / ‘Identifying and mitigating the individual and dyadic impact of COVID-19 and life under physical distancing on people with dementia and carers (INCLUDE)’ was funded by the Economic and Social Research Council (ESRC) through grant ES/V004964/1. Investigators: Clare, L., Victor, C., Matthews, F., Quinn, C., Hillman, A., Burns, A., Allan, L., Litherland, R., Martyr, A., Collins, R., & Pentecost, C. ESRC is part of UK Research and Innovation (UKRI). ‘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 Research (NIHR) through grant ES/L001853/2. Investigators: L. Clare, I.R. Jones, C. Victor, J.V. Hindle, R.W. Jones, M. Knapp, M. Kopelman, R. Litherland, A. Martyr, F.E. Matthews, R.G. Morris, S.M. Nelis, J.A. Pickett, C. Quinn, J. Rusted, J. Thom. ESRC is part of UK Research and Innovation (UKRI). IDEAL data were deposited with the UK data archive in April 2020 and will be available to access from April 2023. Details of how the data can be accessed after that date can be found here: http://reshare.ukdataservice.ac.uk/854293/ ‘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. Investigators: L. Clare, I.R. Jones, C. Victor, C. Ballard, A. Hillman, J.V. Hindle, J. Hughes, R.W. Jones, M. Knapp, R. Litherland, A. Martyr, F.E. Matthews, R.G. Morris, S.M. Nelis, C. Quinn, J. Rusted. L. Clare acknowledges support from the NIHR Applied Research Collaboration South-West Peninsula. The views expressed are those of the author(s) and not necessarily those of the ESRC, UKRI, NIHR, the Department of Health and Social Care, the National Health Service, or Alzheimer’s Society. The support of ESRC, NIHR and Alzheimer’s Society is gratefully acknowledged.

Yes / Global initiatives that promote public health responses to dementia have resulted in numerous countries developing new national policies. Current policy guidelines in England, for example, recommend that people diagnosed with mild-to-moderate dementia receive information and psychosocial interventions to improve their ability to ‘live well’. However, it remains unclear to what extent these recommendations are being achieved. Methods: Self-reported information from 1537 people living with dementia and informant-reported information from 1277 carers of people living with dementia was used to quantify receipt of community-based dementia support services, including health and social care services provided by statutory or voluntary-sector organisations, in Britain from 2014 to 2016. Demographic factors associated with differences in receipt of support services were also investigated to identify particularly vulnerable groups of people living with dementia. Results: Both self- and informant reports suggested that approximately 50% of people living with dementia received support services for dementia. Receipt of support services was lower among people living with dementia who are older, female, and have fewer educational qualifications. Receipt of support services also differed according to diagnosis and carer status, but was unrelated to marital status. Conclusions: Limited receipt of dementia support services among people living with dementia in Britain provides a baseline to assess the efficacy of current policy guidelines regarding provision of information and support. Targeted efforts to facilitate receipt of support services among the particularly vulnerable groups identified in the current study could improve the efficacy of dementia support services both in Britain and internationally, and should inform policy development. / The IDEAL study’ was funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR) through grant ES/L001853/2. The IDEAL‐2 study’ is funded by Alzheimer's Society, grant number 348,AS‐PR2‐16‐001.