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.

Yes / We explored carers experiences during the COVID-19 pandemic in England to identify long-term impacts and implications, and to suggest future support for caregivers. Data were collected during COVID-19 rapid response studies (IDEAL-CDI; INCLUDE) from carers participating in a British longitudinal cohort study (IDEAL). Semi-structured interview data were compared to their accounts from previous interviews conducted during the first 18 months of the pandemic. There was indication of some return to pre-pandemic lifestyles but without appropriate support carers risked reaching crisis point. Evidence points to a need for assessment and management of support needs to ensure well-being and sustainable dementia caregiving. / Economic and Social Research Council (ESRC) through grant ES/V004964/1. Economic and Social Research Council (ESRC) and the National Institute for Health and Care Research (NIHR) through grant ES/L001853/2. Alzheimer’s Society, grant number 348, AS-PR2-16-001.

Yes / The increasing heterogeneity of the population of older people is reflected in an increasing number of people with dementia and carers drawn from minority ethnic groups. Data from the IDEAL study are used to compare indices of 'living well' among people with dementia and carers from ethnic minority groups with matched white peers. We used an exploratory cross-sectional case-control design to compare 'living well' for people with dementia and carers from minority ethnic and white groups. Measures for both groups were quality of life, life satisfaction, wellbeing, loneliness, and social isolation and, for carers, stress, relationship quality, role captivity and caring competence. The sample of people with dementia consisted of 20 minority ethnic and 60 white participants and for carers 15 and 45 respectively. People with dementia from minority ethnic groups had poorer quality of life (-4.74, 95% CI: -7.98 to -1.50) and higher loneliness (1.72, 95% CI: 0.78-2.66) whilst minority ethnic carers had higher stress (8.17, 95% CI: 1.72-14.63) and role captivity (2.00, 95% CI: 0.43-3.57) and lower relationship quality (-9.86, 95% CI: -14.24 to -5.48) than their white peers. Our exploratory study suggests that people with dementia from minority ethnic groups experience lower quality of life and carers experience higher stress and role captivity and lower relationship quality than their white peers. Confirmatory research with larger samples is required to facilitate analysis of the experiences of specific minority ethnic groups and examine the factors contributing to these disadvantages. / Economic and Social Research Council. National Institute for Health and Care Research. Grant Number: ES/L001853/2

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 / The comorbidity of anxiety disorders and autism spectrum disorder (ASD) is wellestablished. 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 (<i>N</i> = 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 have clinically significant levels of anxiety. Anxiety symptoms contributed to poor quality of life above and beyond ASD symptoms alone. Exploratory analyses also demonstrated significant effects of ASD severity on quality of life through the path of anxiety symptoms. Results provide initial evidence that anxiety symptoms contribute to quality of life in adults with ASD independently of core ASD symptoms. 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.

The purpose of this study is to investigate the differences and similarities of quality of life (QoL) in American and Portuguese cancer patients with hematological malignancies as well as the robustness of the measures cross-culturally. Portuguese participants were 98 patients and 49 accompanying persons and the American participants were 55 patients and 22 accompanying persons. Fifty (Portuguese sample) to 40% (American sample) of the patients came with an accompanying person who answered the questionnaire concerning the patient's QoL. The two cultural groups were characterized in terms of QoL (measured by the SF-36 and the FLIC), social support (Social Support Scale), socio-demographic and clinical variables. Portuguese patients reported a higher QoL. However, this result could be attributable to the fact that the two cultural samples differ in socio-economic status. The measures seem to be comparable for the Portuguese and American samples, at least in what concerns reliability and concurrent validity.

Atualmente, as pesquisas sobre qualidade de vida relacionada à saúde (QVRS) de pacientes com câncer têm contribuído para o planejamento de cuidado integral ao paciente e familiar. Este estudo teve como objetivo avaliar a QVRS de pacientes oncológicos, sem possibilidades terapêuticas de cura, de acordo com as dimensões do instrumento EORTC QLQ C-30 e sua associação com os aspectos sociodemográficos e clínicos. O referencial adotado foi o de QVRS de Ashing-Giwa. Trata-se de um estudo analítico, de corte transversal, realizado em João Pessoa - PB, com amostragem por conveniência. As entrevistas foram norteadas por dois instrumentos, o de caracterização sociodemográfica e clínica e o de avaliação de qualidade de vida - EORTC QLQ C-30. O estudo acatou as observâncias éticas normatizadas para pesquisas com seres humanos. Participaram 127 pacientes, sendo 59,1% mulheres, idade média de 63 anos; 43,3% casados e 44,1% tinham de 1 a 3 filhos; 40,9% com ensino fundamental; 72,4% católicos; 81,9% não praticavam atividade física. Quanto à situação financeira, 52,8% eram aposentados; 85,8% recebiam mensalmente de 1 a 3 salários mínimos; e 98,4% não tinham plano de saúde privado. Na caracterização clínica, o câncer foi mais prevalente nas mulheres (58,3%), com localização primária do tumor mais citado no útero, ovário, mama e colorretal, e nos homens o tumor se apresentou significativamente na cabeça, pescoço, próstata e pulmão. Tempo de diagnóstico menor que seis meses foi encontrado em 48,8% da amostra; 58,3% tinham tumor com disseminação regional e distante; 52,8% com metástase; 63,0% realizaram biópsia; 57,5% e 51,2% não realizaram radioterapia nem quimioterapia, respectivamente, e 78,0% estavam há menos de um mês hospitalizados. Os sintomas mais prevalentes foram dor (89,8%), fadiga (70,9%) e anorexia (53,5%). Na avaliação pelo EORTC QLQ-C30, os resultados com pior avaliação foram para o Estado de Saúde Global e Função Desempenho de Papel; na Escala de Sintomas, dor, fadiga, insônia e perda do apetite tiveram destaque bem como na escala Dificuldade Financeira. Na associação dos domínios do EORTC QLQ-C30, com as variáveis sociodemográficas, houve associação significativa (p<0,05) da faixa etária e escolaridade com Função Cognitiva; e renda mensal com Estado Geral de Saúde. Já com as variáveis clínicas, houve extensão da doença e metástase com Função Física; radioterapia com Função Social; e tempo de hospitalização com Escala Funcional. Na associação dos itens da Escala de Sintomas houve associação significativa de fadiga com extensão da doença, metástase, quimioterapia e tempo de hospitalização; dor com quimioterapia e tempo de hospitalização; insônia com procedimento cirúrgico; e perda de apetite com quimioterapia. A associação dos escores da escala Dificuldade Financeira com variáveis sociodemográficas mostrou resultado significativo com situação laboral atual, fonte de renda, renda mensal e situação financeira. E com variáveis clínicas, foi encontrada associação com tempo de hospitalização e com diabetes. Os resultados mostraram que os aspectos sociodemográficos e clínicos da população do estudo afetaram de forma significativa sua QVRS, principalmente com relação aos domínios Função Física e Função Cognitiva. Assim, o prejuízo na capacidade funcional, pelo impacto de uma doença como o câncer, afeta a capacidade de desempenhar suas atividades de vida diária, suas relações sociais, e sobremaneira, sua situação financeira / Nowadays, the pieces of research on quality of life related to the health (HRQoL) of patients with cancer have contributed to the whole care plan devoted to the patient and family member. This study aimed at evaluating the HRQoL to the oncology patients, with no therapeutic healing possibilities, according to the dimensions of the EORTC QLQ C-30 and its association with the socio-demographic and clinical aspects. Ashing-Giwa´s HRQoL was the reference adopted. It is an analytical and cross-sectional study carried out in João Pessoa - PB, with convenience sampling. The interviews were guided by two instruments: the socio- demographic and clinical characterization and the evaluation of quality of life - EORTC QLQ C-30. The study accepted the ethical observance ruled by pieces of research with human beings. A total of 127 patients took part in the research, being 59,1% women, mean age 63 years old; 43,3% married and 44,1% had 1 to 3 children; 40,9% with elementary education level; 72,4% catholic; 81,9% did not practice physical activity. In regard to the financial situation, 52,8% were retired; 85,8% received 1 to 3 minimum wages monthly; and 98,4% had no private health plan. In the clinical characterization, cancer was more prevalent in women (58,3%), with tumor primary locus in the uterus, ovary, breast and colorectal whereas in men, the tumor was meaningfully present in the head, neck, prostate and lung. Diagnosis period less than six months was found in 48,8% of the sample; 58,3% had tumor with regional and distant dissemination; 52,8% with metastasis; 63,0% fulfilled biopsy; 57,5% and 51,2% were submitted neither to radiotherapy nor to chemotherapy, respectively, and 78,0% had been hospitalized for less than a month. The most prevalent symptoms were pain (89,8%), fatigue (70,9%) and anorexia (53,5%). With reference to the EORTC QLQ-C30 assessment, the results with the worst evaluation were for the Global Health Status and Performance Status; in the Symptoms Scale, pain, fatigue, insomnia and appetite loss were highlighted as well as in the Financial Difficulty Scale. In the association of EORTC QLQ-C30 domains with the socio-demographic variables, there was meaningful association (p<0,05) of age group and education level with Cognitive Function; and monthly income with Global Health Status. With the clinical variables, there was length of the disease and metastasis with the Physical Function; radiotherapy with the Social Function; and the hospitalization period with the Functional Scale. While associating the items of the Symptom Scale, there was meaningful association of fatigue with the length of the disease, metastasis, chemotherapy and the hospitalization period; pain with chemotherapy and period of hospitalization; insomnia with surgical procedure; and appetite loss with chemotherapy. Score association of the Financial Difficulty Scale, with socio-demographic variables, showed meaningful result with the current work condition, income source, monthly income and financial situation. Concerning the clinical variables, there was association with the hospitalization period and with diabetes. Results showed that the clinical and socio-demographic aspects of the studied population affected meaningfully their HRQoL, especially, with reference to the Physical Function and Cognitive Function domains. Therefore, the damage regarding the functional capacity, by the impact of a disease as cancer, affects the capacity of performing their daily life activities, their social relations, and overall, their financial situation

Fan Chi Fun, Cindy. / Thesis (M.Ph.)--Chinese University of Hong Kong, 1984 / Bibliography: leaves 236-245

Chu Kwok-chung. / Thesis (M.Phil.)--Chinese University of Hong Kong, 1991. / Includes bibliographical references. / Abstract --- p.i / Acknowledgements --- p.ii / List of Illustrations --- p.v / List of Tables --- p.vii / List of Appendix --- p.ix / Chapter / Chapter 1. --- "INTRODUCTION: THE PROBLEMS, OBJECTIVE AND ITS SETTING" --- p.1 / Chapter 1.1 --- Urbanization as a current subject of great concern --- p.1 / Chapter 1.2 --- Urbanization Policies in China --- p.2 / Chapter 1.3 --- Shift of social concern to social well-being (SWB) in national development --- p.5 / Chapter 1.4 --- The problems --- p.6 / Chapter 1.5 --- Objective of this study --- p.8 / Chapter 1.6 --- The scope of the study --- p.9 / Chapter 1.7 --- The organization of the remainder of the thesis --- p.9 / Chapter 2. --- CONCEPTUAL BACKGROUND --- p.11 / Chapter 2.1 --- Definition of Spatial inequality --- p.11 / Chapter 2.2 --- Types of spatial inequalities and different levels and units of analysis in China --- p.12 / Chapter 2.3 --- Definition of Social Well-being --- p.16 / Chapter 2.4 --- Ingredient of Social Well-being --- p.16 / Chapter 2.5 --- The present selection of the ingredient of SWB --- p.18 / Chapter 2.6 --- Characteristics of welfare goods allocation in China --- p.22 / Chapter 2.7 --- Two approaches in measuring spatial inequalities of SWB --- p.25 / Chapter 2.7.1 --- Single component approach --- p.26 / Chapter 2.7.2 --- Integrated approach --- p.27 / Chapter 3. --- RESEARCH DESIGN --- p.32 / Chapter 3.1 --- Procedure of analysis --- p.32 / Chapter 3.2 --- Assumptions and approximation --- p.34 / Chapter 3.3 --- Techniques of analysis and Treatment of Data --- p.35 / Chapter 3.3.1 --- Measuring spatial inequality via single variable --- p.35 / Chapter 3.3.2 --- Establishing the composite index of SWB --- p.37 / Chapter 3.3.3 --- Unit of analysis (UOA) and level of aggregation (LOA) --- p.41 / Chapter 3.3.4 --- Analyzing the association between the composite index and some economic variables --- p.45 / Chapter 4. --- SPATIAL INEQUALITY IN SEVERAL WELFARE INDICATORS OF CHINESE CITIES IN THE 1980s --- p.48 / Chapter 4.1 --- Spatial inequality by single indicators --- p.48 / Chapter 4.1.1 --- Income and Wealth --- p.48 / Chapter 4.1.2 --- Living facilities --- p.63 / Chapter 4.1.3 --- Education --- p.69 / Chapter 4.1.4 --- Medical facilities --- p.72 / Chapter 4.2 --- Summary --- p.76 / Chapter 5. --- SPATIAL PATTERN OF SOCIAL WELL-BEING OF CHINESE CITIES IN THE 1980s --- p.78 / Chapter 5.1 --- Spatial pattern of social well-being of individual citie --- p.78 / Chapter 5.2 --- Results of different levels of aggregation of UOA --- p.105 / Chapter 5.2.1 --- SWB by City-class level --- p.105 / Chapter 5.2.2 --- SWB by provincial level --- p.107 / Chapter 5.2.3 --- SWB by Economic regions level --- p.110 / Chapter 5.3 --- Summary --- p.113 / Chapter 6. --- POSSIBLE FACTORS AFFECTING INEQUALITY OF URBAN SWB AND IMPLICATIONS ON CHINA'S URBANIZATION POLICIES --- p.116 / Chapter 6.1 --- Economic factors -- Influence of economic variables on urban SWB --- p.116 / Chapter 6.2 --- Policy factor - the formation of the urban SWB pattern --- p.123 / Chapter 6.2.1 --- Differentials of urban development due to biased priorities and conceptualization of cities --- p.124 / Chapter 6.2.2 --- Urbanization policies -- population control polic --- p.132 / Chapter 6.2.3 --- The population control policy and the welfare services provision --- p.139 / Chapter 6.3 --- Examples -- the stories of two provincial capitals --- p.141 / Chapter 6.3.1 --- Lanzhou --- p.142 / Chapter 6.3.2 --- Kunming --- p.148 / Chapter 6.4 --- Implication on China's urbanization policies --- p.151 / Chapter 7. --- "SUMMARY, CONCLUSION AND RECOMMENDATIONS FOR FURTHER RESEARCH" --- p.158 / Chapter 7.1 --- Summary of findings --- p.158 / Chapter 7.2 --- Limitations of this study --- p.164 / Chapter 7.3 --- Directions for further research --- p.167 / Appendix / Bibliography