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. / The full-text of this article will be released for public view at the end of the publisher embargo on 29 Aug 2024.

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

Several assumptions of the indirect reflective model of the Multidimensional Students’ Life Satisfaction Scale (MSLSS) were tested to assess its validity as a measure of adolescents’ satisfaction with life generally and with five important life domains (family, friends, living environment, school, and self perception). We also examined whether adolescents’ perceived mental and physical health status significantly explained their global quality of life (QOL) and whether these relationships were mediated by their satisfaction with the five life domains. The data were taken from a cross-sectional health survey of 8,225 adolescents in 49 schools in British Columbia, Canada. Global QOL was measured using Cantril’s ladder and a single-item rating of the adolescents’ satisfaction with their QOL. Confirmatory factor and factor mixture analyses were used to examine the measurement assumptions of the MSLSS, and structural equation modeling was applied to test the hypothesized mediation model. The Pratt index (d) was used to evaluate variable importance. The adolescents did not respond to all MSLSS items in a consistent manner. An abridged 18-item version of the MSLSS was therefore developed by selecting items that were most invariant in the sample. Good model fit was obtained when the abridged MSLSS was used to test the hypothesized mediation model, which explained 76% of the variance in global QOL. Relatively poorer mental health and physical health were significantly associated with lower satisfaction in each of the life domains. Global QOL was predominantly explained by the adolescents’ mental health status (d = 30%) and by their satisfaction with self (d = 42%) and family (d = 20%). Self and family satisfactionwere the predominant mediating variables of the relationships between mental health (45% total mediation) and physical health (68% total mediation) and global QOL.Satisfaction with life domains and perceived physical and mental health can be viewed as conditions that potentially contribute to adolescents’ global QOL. Questions about adolescents’ experiences with important life domains require more attention in population health research so as to target appropriate supportive services for adolescents, particularly those with mental or physical health challenges. / Michael Smith Foundation for Health Research / Canadian Nurses Foundation / Trinity Western University

The literature available on financial aid addresses how aid promotes access and equal educational opportunity by enabling students to matriculate into college. The literature also discusses how financial aid impacts students' ability to persist to degree completion. However, there seems to be little research on how financial aid affects students' lives while they are in college. The present study attempted to address this gap in the existing literature by examining the differences in quality of life between college students receiving financial aid and those not receiving such aid. For purposes of this study, quality of life was defined by four dimensions culled from the literature: (a) material possessions; (b) housing; (c) use of time; and (d) support mechanisms. Financial aid was defined as any need-based grant, loan, or work-study money awarded to a student. Data were collected using the Quality of Life survey developed specifically for this study. The survey consisted of 59 items that were designed to measure the four dimensions of students' quality of life. The target sample for this study consisted of 600 first year undergraduate students: 300 financial aid recipients and 300 non-aid recipients. The findings revealed significant differences in three of the four areas: material possessions, use of time, and support mechanisms. These findings suggest that those who administer financial aid programs and those responsible for creating financial aid policies may wish to consider the role financial aid plays in the quality of life of students. / Master of Arts

Heart disease is a major health problem affecting the octogenarian today. As age increases, so does the risk for heart disease. One accepted treatment for heart disease is open-heart surgery. The incidence of open-heart surgery performed on the octogenarian is increasing. Open-heart surgery has risks. It is costly and stressful for the patient and family. A major focus of the last decade has been on healthcare costs, outcomes, and quality of life. While information on functional status of the octogenarian following open-heart surgery is available, there is little information available related to the perceived quality of life in the octogenarian following open-heart surgery. Comprehensive tools specific to this population are also not available. The purpose of this study was to examine the perceived quality of life and functional status in the octogenarian following open-heart surgery. The theoretical framework used for this study was the Quality of Life (QOL) model adapted for cancer survivors (QOL-CS) (Ferrell et al., 1995). A descriptive research design was used. The sample frame included eligible octogenarians, who underwent open-heart surgery between January 1, 1998 and February 1, 1999, by a group of cardiac surgeons in the Central Florida area. The New York Heart Association (NYHA) functional status was used to assess the participant's functional level. To assess quality of life, the Quality of Life Scale/Cancer Survivor (Ferrell, Grant, & Hassey-Dow, 1995), in modified form, was used. Both instruments were assessed by a panel of experts to establish content validity. The QOL-CS tool had established validity, internal consistency, and reliability based on the literature review. Crohnbach's alpha measure of internal consistency was also performed on the revised tool. Pfeiffer's Short Portable Mental Status Questionnaire (SPMQ) was administered to assess the participant's mental status prior to their completing the QOLCS tool. The tools were administered over the phone or at the participants home based on their preference. Inclusion criteria were that the participant be between 80 and 90 years old at the time of having open-heart surgery. They also had to be mentally competent and able to understand the English language. The participants completed the SPMQ, a demographic questionnaire, and the QOL-CS modified for this population. The NYHA functional classification was made based on the participant's reported symptoms. Twenty-five people were operated on that fit the criteria and time frame, ten died prior to initiation of the study. Fifteen people were eligible for inclusion in the study, three were unable to be contacted and one refused to participate. Eleven subjects participated in the study. The QOL-CS tool analyzed the domains of physical, psychological, social, and spiritual well being on a Likert scale of one to ten. The mean results were as follows; physical 7.2, psychological 7.2, social 7.1, and spiritual 5.0. A majority of the subjects (73%) were in a NYHA functional class of I or II. The remaining subjects were in class III. This study revealed that for this group, quality of life was above average following open-heart surgery. Further research is needed on larger samples to confirm these results. As more and more open-heart surgeries are performed on the octogenarian, research should continue on the functional outcomes and quality of life associated with these interventions. A tool to examine quality of life, specific to this unique population should be developed.

Approximately 21,550 women were diagnosed with Ovarian Cancer (OVCA) in 2009 and 14,600 died from their disease, making it the number one killer of women among gynecological cancers. Seventy percent of cases of OVCA are not detected until the disease has progressed to stage III or stage IV. Both diagnosis and aggressive treatments for late-stage OVCA can have a negative impact on women's psychosocial well-being resulting in anxiety, depression, and fear. The purpose of this integrative review of literature was to evaluate interventions designed to improve psychosocial well-being in women with OVCA. This review of literature was conducted using the CINAHL, PsycINFO, and MEDLINE databases using various key terms including "ovarian cancer or neoplasm" and "psychological and psychosocial", "well-being", "fear or anxiety or depression". Five studies met the inclusion criteria and were included in this review. These interventions include psychosocial, psychoeducational, and personal counseling interventions. The findings indicate that these interventions result in a significant improvement in participant's psychosocial well-being including decreased depressive symptoms, fear, and anxiety. This evidence supports that there is a need for psychosocial intervention in women with OVCA. It also suggests that women with OVCA benefit from tailored interventions and one-on-one educational and counseling sessions. Clinicians can use this information to anticipate potential problems in their client's psychosocial well-being and provide more education and support or refer them for counseling. More research is needed about reducing the psychosocial sequelae that results in women with OVCA.

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