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Use and costs of services and unpaid care for people with mild-to-moderate dementia: Baseline results from the IDEAL cohort studyHenderson, C., Knapp, M., Nelis, S.M., Quinn, Catherine, Martyr, A., Wu, Y.T., Jones, I.R., Victor, C.R., Pickett, J.A., Hindle, J.V., Jones, R.W., Kopelman, M.D., Matthews, F.E., Morris, R.G., Rusted, J.M., Thom, J.M., Clare, L. 08 November 2019 (has links)
Yes / Introduction
We examined 3-month service use and costs of care for people with mild-to-moderate dementia in Great Britain.
Methods
We analyzed Improving the experience of Dementia and Enhancing Active Life cohort study baseline data on paid care, out-of-pocket expenditure, and unpaid care from participants with dementia (N = 1547) and their carers (N = 1283). In regression analyses, we estimated per-group mean costs of diagnostic and sociodemographic subgroups.
Results
Use of services apart from primary and outpatient hospital care was low. Unpaid care accounted for three-quarters of total costs (mean, £4008 [standard error, £130] per participant). Most participants (87%) received unpaid care equating to 36 hours weekly. Estimated costs for people with Parkinson's dementia were £8609, £4359 for participants with mixed dementia, and £3484 for those with Alzheimer's disease. Total costs were lower for participants with dementia living alone than living with others (£2484 vs. £4360); costs were lower for female than for male participants (£3607 vs. £4272).
Discussion
Costs varied by dementia subtype, carer status, and living arrangement. Policy makers should recognize the high costs of unpaid care for people with dementia, who do not always get the support that they need or would like to receive. / The first phase of the IDEAL program was funded jointly by the Economic and Social Research Council (ESRC, United Kingdom) and the National Institute for Health Research (NIHR, United Kingdom) through grant ES/L001853/2. “Improving the experience of dementia and enhancing active life: living well with dementia”.
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The use and costs of paid and unpaid care for people with dementia longitudinal findings from the IDEAL cohort programmeHenderson, C., Knapp, M., Martyr, A., Gamble, L.D., Nelis, S.M., Quinn, Catherine, Pentecost, C., Collins, R., Wu, Y.-T., Jones, I.R., Victor, C.R., Pickett, J.A., Jones, R.W., Matthews, F.E., Morris, R.G., Rusted, J., Thom, J.M., Clare, L. 10 January 2022 (has links)
Yes / The drivers of costs of care for people with dementia are not well understood and little is known on the costs of care for those with rarer dementias. To characterise use and costs of paid and unpaid care over time in a cohort of people with dementia living in Britain. To explore the relationship between cohort members’ demographic and clinical characteristics and service costs. Methods: We calculated costs of health and social services, unpaid care, and out-of-pocket expenditure for people with mild-to-moderate dementia participating in three waves of the IDEAL cohort (2014-2018). Latent growth curve modelling investigated associations between participants’ baseline sociodemographic and diagnostic characteristics and mean weekly service costs. Results: Data were available on use of paid and unpaid care by 1537 community-dwelling participants with dementia at Wave 1, 1199 at Wave 2, and 910 at Wave 3. In models of paid service costs, being female was associated with lower baseline costs and living alone was associated with higher baseline costs. Dementia subtype and caregiver status were associated with variations in baseline costs and the rate of change in costs, which was additionally influenced by age. Conclusion: Lewy body and Parkinson's disease dementias were associated with higher service costs at the outset, and Lewy body and frontotemporal dementias with more steeply increasing costs overall, than Alzheimer’s disease. Planners of dementia services should consider the needs of people with these relatively rare dementia subtypes as they may require more resources than people with more prevalent subtypes. / The first phase of the IDEAL program was funded jointly by the Economic and Social Research Council (ESRC, United Kingdom) and the National Institute for Health Research (NIHR, United Kingdom) through grant ES/L001853/2.
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A profile of informal carers in South AfricaJoubert, Janetta Debora 02 December 2005 (has links)
Demographic and epidemiological change has resulted globally in changes in population and individual health, which, in turn, have resulted in changing care needs. Demographic change in South Africa, mainly through a confluence of declining fertility rates and pre-AIDS increases in life expectancy, has produced an ageing population that is expected to continue ageing for at least the next 10 to 15 years. Currently, South Africa’s older population (60 years+) has a much higher annual average percent growth rate than the total population. Having more older persons than ever before implies increased prevalence of frailty, chronic disease and disability through a tendency of declining physical, mental and cognitive functional capacities—hence meaning a larger demand for care. The changing age structure of a population is commonly associated with changes in health, disease and cause of death patterns. Recent research indicates an intensive, quadruple burden of disease, with the major addition of HIV/AIDS to persistent pre-transitional conditions, non-communicable conditions, and high rates of injuries—implying an extensive and diverse need for care. While demographic and epidemiological change have led to an increased demand for care, health system change, shortages in formal public health care delivery, and the spiralling costs of private care have led to decreased availability of formal care. Care-requiring persons therefore may need to rely increasingly on ‘informal care’, defined here as ‘care provided at home to another person who, because of frailty disability or ill-health, cannot manage on his/her own’. Research on informal care in developed nations is well-established and extensive, but has received very little attention in South Africa where it is not clear how many and who it is that are informal carers. The thesis study has hence been conducted to contribute to the limited research in the field of informal care, aiming to establish the national extent of informal care, and to present a demographic and socio-economic profile of informal carers. A multi-stage stratified area cluster probability sample of 2704 persons was drawn from free-living adults in a nationally-representative household survey in 2000. Field data were collected during 2611 individual face-to-face interviews. Basic univariate and logistic regression analyses were conducted. Of the adult population, 27% were found to be informal carers. Significant prevalence differences were found regarding sex, population group, geographic residence, education, employment status, and income. Adjusting for selected demographic characteristics, the significance status and levels of some relationships changed. It is concluded that informal caregiving is widespread in South Africa. While demographic and epidemiological evidence suggest that the reliance on informal carers is expected to increase, many informal carers are struggling to shoulder the physical, mental and financial burden. A national strategy to focus on informal carers is recommended, to raise awareness about their essential role and value in the health care system; to recognize their contributions to population and individual health; to comprehensively support them; and to assess their needs and concerns through ongoing research. / Dissertation (MA (Demography))--University of Pretoria, 2006. / Sociology / unrestricted
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Exploring gender division of labour within households: the case of Schoemansdal Village in Nkomazi Local Municipality, Mpumalanga Province, South AfricaShabangu, Busi Florence 18 May 2018 (has links)
MGS / Institute for Gender and Youth Studies / One of the most pressing issues contributing to the persistence of gender inequality is the gendered division of domestic labour. Women still carry out more domestic labour than men. Housework is shared quite unequally among most married couples. Work performed directly in the service of families including housework and childcare is often unacknowledged all over the world because of cultural assumptions that a wife or mother should work in the privacy of the home. This study adds extra depth to the doing gender approach by testing whether or not couple negotiate specific conjugal and parent roles in terms of the division of household labour. This study therefore seeks to discuss numerous variables that impact the division of household labour between men and women. This study suggests that patriarchal power structures seem to take a powerful and effective impact on the South African marriage institution, especially in the black communities. The study was therefore conducted in Schoemansdal village situated in Nkomazi region, Mpumalanga Province. To explore issues behind gender division of labour within households. The study embarked on a qualitative research design to collect and analyze the data. Samples of married men and married women were selected in this study. The findings of the study are as follows: Women do a disproportionate share of the housework, even when the women work and the men don‟t, and even when the women want to share the housework more equally. When men aren‟t working, they don‟t see domestic labour as a means of contributing. In fact, they double down and do less of it, since it challenges their masculinity. But when men earn more, women who are almost all working too, feel obliged to contribute in some way to maintaining the household, generally by cooking and cleaning. / NRF
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[en] BLACK WOMEN AT THE CROSSROADS OF CARE: A STUDY ON UNPAID CARE AND DOMESTIC WORK / [pt] MULHERES NEGRAS NA ENCRUZILHADA DO CUIDADO: ESTUDO SOBRE TRABALHO DE CUIDADO E DOMÉSTICO NÃO REMUNERADOTHAMIRES DA SILVA RIBEIRO 08 August 2023 (has links)
[pt] A tese busca compreender a estratificação da organização social e política dos cuidados no Brasil a partir da intersecção de raça, gênero e classe na sua provisão, distribuição e usufruto/acesso, com foco na centralidade de mulheres cis negras na provisão do trabalho de cuidado e doméstico não remunerado. E reflete sobre a racialização, familiarização, feminização e mercantilização do cuidado. Pensar o cuidado pelo viés interseccional e como um trabalho constitutivo da sustentabilidade humana possibilita enxergar disparidades complexas que dinamizam esta organização. Nesse percurso, parte-se do campo das ciências sociais, econômicas e do direito, a fim de analisar o cuidado no centro da agenda pública e acadêmica, o concebendo como uma encruzilhada. Trata-se de uma pesquisa de natureza exploratória do tipo descritiva, com abordagem qualiquantitativa a partir da realização de testes de hipótese articulado à execução de entrevistas semiestruturadas com treze mulheres cis negras anônimas, na faixa etária de 30 a 65 anos, residentes no município do Rio de Janeiro e Região Metropolitana. A triangulação de métodos tem a finalidade de analisar como a provisão, distribuição, usufruto/acesso fortalece as assimetrias de raça, gênero e classe, em um sistema interligado de opressão que produz as desigualdades do cuidado. A pesquisa estrutura seu quadro teórico na epistemologia negra feminista em diálogo com autoras do campo de produção sobre cuidados, privilegiando a interlocução com autoras ladino-amefricanas e afirma a necessidade de enegrecer o cuidado. Os resultados atestam uma lacuna racial nas pesquisas de cuidado e que mulheres negras sustentam o funcionamento do sistema de cuidados no Brasil, sendo protagonistas em sua provisão ao mesmo tempo em que se encontram à margem do usufruto, incidindo em sua permanência na base da pirâmide social. Tais resultados fundamentam a conclusão de que a pauta do cuidado como direito na agenda pública deve considerar prioritariamente a experiência e a condição de mulheres negras, a fim de viabilizar uma reparação histórica, fortalecendo ciclos geracionais de libertação e colaborando para a superação de desigualdades sociais. / [en] The thesis seeks to understand the stratification of the social and political organization of care in Brazil from the intersection of race, gender and class in its provision, distribution and usufruct/access, focusing on the centrality of cis black women in the provision of care work and unpaid household work. It reflects on the racialization, familiarization, feminization and commodification of care. Pondering about care from an intersectional angle and as a constitutive work of human sustainability makes it possible to see the complex disparities that make this organization dynamic. Accordingly, we depart from the field of social, economic and legal sciences, in order to analyze care at the center of the public and academic agenda, conceiving it as a crossroads. This is an exploratory research of the descriptive type, with a quantitative and qualitative approach based on the performance of hypothesis tests articulated with the execution of semi-structured interviews with 13 anonymous black cis women, aged between 30 and 65 years, residing in the city of Rio de Janeiro and Metropolitan Region. The triangulation of methods aims to analyze how the provision, distribution, usufruct/access strengthen imbalances of race, gender and class, in an interconnected system of oppression that produces inequalities in care. The research structures its theoretical framework in black feminist epistemology in dialogue with authors from the field of production on care, privileging the interlocution with Ladino-Amefrican authors and affirms the need to blacken care. The results attest to a racial gap in care research and that black women support the functioning of the care system in Brazil, being protagonists in its provision while at the same time being on the margins of attainment, focusing on their permanence at the base of the social pyramid. Such results support the conclusion that the agenda of care as a right on the public agenda should consider the experience and condition of black women as a priority, in order to enable historical reparation, strengthening generational cycles of liberation and collaborating to overcome social inequalities.
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Developing approaches to measure dependency across different domains of need in later life : an exploration of the relationship between need and care receipt using the English Longitudinal Study of AgeingSanders, Robert John January 2016 (has links)
This thesis explores the relationship between the needs people experience in later life and the types of care they receive. The thesis provides evidence on the role of different types of care in supporting the needs of people aged 60+ in England using the English Longitudinal Study of Ageing (ELSA). The research presented adopts a number of new approaches to capturing the multi-dimensional nature of dependency by utilising a range of binary indicators of difficulty performing 10 actions related to upper and lower body mobility, 6 activities of daily living (ADL) and 7 instrumental activities of daily living (IADL). The thesis provides a detailed analysis of the prevalence of these items when considered independently and collectively in combination. A central aim of the research is to develop a more nuanced understanding of dependency to allow for the dimensionality of the needs experienced by older people living in their own homes to be considered. The thesis utilizes a number of different approaches, including simple binary and count-based indicators of need and more complex measures reflecting dependency across different domains of need. These approaches allow a more dynamic picture of dependency in later life to be considered. Using these measures, the research explores the role of different types of care in meeting different types of need. Of these, a unique application of an existing assessment tool is presented, the Indicator of Relative Need (IoRN), which is used as a framework to derive an equivalent measure – the Array of Need (AoN). Given the aim of the study is to investigate the multi-dimensional nature of dependency, various data reduction approaches are used including principal components analysis. Finally, research from similar studies is acknowledged and work from the Survey of Health, Ageing and Retirement in Europe (SHARE) study is reproduced using ELSA. The thesis suggests that when considering the dependency needs experienced by older people living in the community, it is important to be aware that this group includes both less and more dependent older people. As such, developing a better understanding of the dynamic relationship between dependency and the receipt of informal and formal care may require more suitable measurements of dependency.
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Economic policy, childcare and the unpaid economy : exploring gender equality in ScotlandAzong, Jecynta A. January 2015 (has links)
The research undertaken represents an in-depth study of gender and economics from a multi-disciplinary perspective. By drawing on economic, social policy and political science literature it makes an original contribution to the disciplines of economics and feminist economics by advancing ideas on a feminist theory of policy change and institutional design. Equally, the study develops a framework for a multi-method approach to feminist research with applied policy focus by establishing a pragmatic feminist research paradigm. By espousing multiple research philosophies, it extends understanding of gender differences in policy outcomes by connecting theories from feminist economics, feminist historical institutionalism and ideational processes. Jointly funded by the Economic and Social Research Council UK and the Scottish Government, this project attempts to answer three key questions: What is the relative position of men and women in the Scottish economy and how do childcare responsibilities influence these? Which institutions, structures and processes have been instrumental in embedding gender in Scottish economic policy? To what extent and how is the Scottish Government’s approach to economic policy gendered? Quantitative analysis reveals persistently disproportionate differences in men and women’s position in the labour market. Women remain over-represented in part-time employment and in the public sector in the 10years under investigation. Using panel data, the multinomial logistic regression estimation of patterns in labour market transitions equally reveal disproportionate gendered patterns, with families with dependent children 0-4years at a disadvantage to those without. Qualitative analysis indicates that these differences are partly explained by the fact that the unpaid economy still remains invisible to policymakers despite changes in the institutional design, policy processes and the approach to equality policymaking undertaken in Scotland. Unpaid childcare work is not represented as policy relevant and the way gender, equality and gender equality are conceptualised within institutional sites and on political agendas pose various challenges for policy development on unpaid childcare work and gender equality in general. Additionally, policymakers in Scotland do not integrate both the paid and unpaid economies in economic policy formulation since social policy and economic policy are designed separately. The study also establishes that the range of institutions and actors that make-up the institutional setting for regulating and promoting equality, influence how equality issues are treated within a national context. In Scotland, equality regulating institutions such as parliament, the Scottish Government, equality commission and the law are instrumental variables in determining the range of equality issues that are embedded in an equality infrastructure and the extent to which equality issues, including gender, are consequently embedded in public policy and government budgets. Significantly despite meeting all the attributes of an equality issue, unpaid care is not classified as a protected characteristic in the Equality legislation. These institutions can ameliorate, sustain or perpetuate the delivery of unequitable policy outcomes for men and women in the mutually dependent paid and unpaid economy. Thus, economic, social and political institutions are not independent from one another but are interrelated in complex ways that subsequently have material consequences on men and women in society. In summary, there are interlinkages between the law, labour market, the unpaid economy, the welfare state and gendered political institutions such that policy or institutional change in one will be dependent on or trigger change in another. These institutions are gendered, but are also interlinked and underpin the gender structure of other institutions to the extent that the gendered norms and ideas embedded in one institution, for example legislation or political institutions, structure the gendered dimensions of the labour market, welfare state, and the unpaid economy. By shedding light on institutional and political forces that regulate equality in addition to macroeconomic forces, the analysis reveals the important role of institutions, policy actors and their ideas as instrumental forces which constantly define, redefine and reconstruct the labour market experiences of men and women with significant material consequences.
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