Alzheimer’s Disease and Human Rights

Dološić, Silvija; Babić, Marina Milić; Rusac, Silvia

doi:10.24869/spsih.2019.470

Cited by 6 publications

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“…Many cases of dementia remain undiagnosed until the later stages of the disease, and the majority of people with Alzheimer’s disease are not treated with standard anti-dementia drugs (which are expensive) but with supportive (alternative) medication, such as, for example, Gingko biloba, statins, Vitamin E or curcuma (Mimica and Presečki, 2010). Health-care professionals and social workers do not have adequate training to work with people with Alzheimer’s disease (Samardžija, 2013); the existing capacity for medical care in hospitals, long-term care facilities and day-care centres is insufficient; and palliative care is underdeveloped (Dološić et al, 2019). A national dementia strategy has not yet been adopted, and people with dementia are often exposed to potential human rights violations and loss of dignity (Dološić et al, 2019).…”

Section: People With Dementia In Croatiamentioning

confidence: 99%

“…Health-care professionals and social workers do not have adequate training to work with people with Alzheimer’s disease (Samardžija, 2013); the existing capacity for medical care in hospitals, long-term care facilities and day-care centres is insufficient; and palliative care is underdeveloped (Dološić et al, 2019). A national dementia strategy has not yet been adopted, and people with dementia are often exposed to potential human rights violations and loss of dignity (Dološić et al, 2019). Psychological counselling and legal advice are sporadically available in larger hospitals and can be obtained from civic and religious organizations, but it is insufficient because it is available only in some parts of the country and is subject to the availability of resources.…”

Section: People With Dementia In Croatiamentioning

confidence: 99%

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Public library services for people with dementia: A study of students’ perceptions

Žilić,

Faletar

2023

IFLA Journal

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Although librarians have not been traditionally recognized as professionals who provide care for persons with dementia, recent research indicates that libraries can contribute to the development of dementia-friendly communities. They can offer cognitive engagement and social inclusion events for people with dementia, provide information to their caregivers and educate the general public about dementia. In this article, the authors present the findings from a study that attempted to answer the following research questions: ‘How much do library and information science students in Croatia know about dementia?’ and ‘How do they perceive the role of public libraries in developing dementia-friendly communities?’ The study was conducted using a quantitative methodology among 183 library and information science students. Although the respondents had somewhat poor knowledge about dementia, they believed people with dementia have an inherent right to library materials and programmes suited to their specific needs, and that libraries can raise the quality of their life in the community.

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Section: People With Dementia In Croatiamentioning

confidence: 99%

Section: People With Dementia In Croatiamentioning

confidence: 99%

Public library services for people with dementia: A study of students’ perceptions

Žilić,

Faletar

2023

IFLA Journal

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“…Many cases of dementia remain undiagnosed until the final stages of the disease and many patients are treated with supportive (alternative) medication instead of antidementives (Mimica & Presečki, 2010). Existing capacities for medical care are underdeveloped, CGs are not provided adequate support and people with dementia are often exposed to potential human rights violations and loss of dignity (Dološić, Milić Babić & Rušac, 2019) because national dementia strategy has not been adopted yet. Currently the needs of people with dementia in relation to diagnosis, treatment, care and support in Croatia are not met.…”

Section: Introductionmentioning

confidence: 99%

How Information Science Research Can Contribute to the Development of Dementia‐Friendly Communities

Faletar,

Petr Balog

2023

Proceedings of the Association for Information Science and Tech

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Dementia is a progressive and incurable disease which impacts both people who have been diagnosed with some type of neurocognitive disorder but also their family members. Since dementia care has lately started to include not only pharmacological treatment and medical care but also a person‐centred and evidence‐based (neuro)rehabilitation in the community, library and information science scholars and professionals have started to investigate how they can contribute to development of dementia‐friendly communities. The paper discusses how findings from an ongoing multi‐phase research have been translated into practice in the city of Osijek, Croatia. Information sciences scholars have collaborated with librarians, civic organizations, neurology and human rights professionals to develop diverse programs in the local community, which aim to raise the quality of life of older citizens, people with dementia and their caregivers through information sharing and raising awareness, supporting their health and wellbeing, and capacity building of librarians.

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“…Ukoliko usmjerimo pažnju na organizaciju, brojnost i raznolikost oblika plaćene skrbi starijih i nemoćnih, u institucionalnom okruženju kao i u prostoru kućanstva, broj radova je nešto veći, no gotovo isključivo proizlazi iz područja prava i ekonomije (Bađun 2017, Dobrotić 2015), demografije (Podgorelec i Klempić, 2007) te socijalne gerontologije (Havelka i Despot Lučanin, 2007, Jedvaj, Štambuk i Rusac 2014, Štambuk i Levak 2018, Štambuk, Rusac, Skokandić 2019. Iz tog razloga, u proteklih petnaestak godina grupa autora upozorava na poteškoće skrbi o oboljelima od Alzheimerove bolesti (Rusac, Laklija, Milić Babić 2012), zanemarenost ljudskih prava oboljelih (Dološić, Milić Babić i Rusac 2019) te na gorući nedostatak sustavnih akcijskih i kvalitativnih istraživanja o plaćenim radnicima skrbi u institucionalnom okruženju s ciljem unaprjeđenja i podrške istima (Laklija, Milić Babić, Rusac 2009). Uporište u argumentaciji nalaze i u dosadašnjem dominantnom istraživačkom fokusu prema neformalnim njegovateljima odnosno članovima uže i šire obitelji starije i nemoćne osobe te ekonomskim, socijalnim i psihološkim izazovima u pružanju skrbi (Štambuk i Levak, 2018: 193).…”

Section: Hrvatskojunclassified

Svakodnevne prakse i iskustva plaćenih radnica u kućanstvu u Istri i Primorju

Mavrinac

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This dissertation focuses on paid domestic work and paid care for elderly in contemporary Croatia. Specifically, it explores experiences of work of domestic and care workers and practices of care work for people affected by Dementia in Istria and Primorje. In contrast to most current researches on contemporary paid domestic work, which are focused on transnational and global markets, this dissertation is focused on local and informal domestic and care markets in which both female workers and employers share the same civic rights and place of residence. Research and interpretation included: 1) outline of the global scale of the phenomenon and the most significant case studies and theoretical approaches in conceptualizing paid domestic work; 2) analysis of the local market of informal paid domestic and care work in Istria and Primorje; 3) analysis of continuity and transformation in paid domestic and care work as well as the economic activities of female subject at the end of the 19th century; 4) analysis of the experiences and practices of paid domestic and care work for people affected by Dementia by placing the research field within the household space, and 5) analysis of paid domestic and care work within the postfordistic paradigm as an archetype of modern production and an example of comprehensive feminization of work. This research has shown that in the Croatian context, the formal and informal markets of paid domestic and care work coexist to some extent although the informal one is predominant. Its prevalence is confirmed by the high number of supply and demand advertisements on websites and social networks. However, in relation to formal markets of care, especially social programs for the employment of a housekeeper for the elderly and caregivers in an institutional context (with a note that the number of homes for the elderly and infirm is still insufficient in relation to the needs of the population), informal domestic work is insufficiently defined and legally protected at all. The lack of this protection points to the negligence and continuous delay of state institutions regarding the development of a systematic plan for the protection and care of both the ageing population, which is mostly affected by dementia, and the domestic workers whose working conditions and compensations are a point of negotiation between the employer and the worker, and not the result of clearly defined legal frameworks. I dedicate the first part of the research to the conceptualization and analysis of the scope of contemporary paid domestic work in the European Union and throughout the world, and the migration flows that this phenomenon initiates. At the same time, I outline the most salient theoretical ad methodological approaches and trends in research at the end of the twentieth and the beginning of the twenty-first century. Migration theories and feminist theory take a critical look at different forms of paid domestic work (nannies, cleaners, caregivers, etc.) questioning their role in building and strengthening global inequalities and preserving the traditional patriarchal system. The second chapter provides an overview of some case studies that analytically focus on the countries of arrival, migration, and the modalities of life and work of paid domestic workers in the migration context. Such studies indicate an ambivalent attitude of the state towards contemporary care markets which is reflected in the application of a restrictive migration policy with a simultaneous dependence on the availability of cheap (migrant) labour. In addition, legislative vagueness, lack of social and economic recognition and the stigmatization of this form of work and its derivatives led to its marginalization as the largest sector of illegal or informal employment of migrant women in the European Union (Gutiérrez Rodríguez 2007: 65). The third chapter analyses in detail the methodological framework applied in the research. That is, archival research of primary and secondary sources (content analysis), ethnographic research (semi-structured interviews, ethnography and participant observation), phenomenological approach and material culture methodology. From these methodological standpoints the thesis focuses on everyday practices and work experiences of paid domestic workers in Istria and Primorje. The chosen research area is a place of dynamic economic activity of women at the end of the nineteenth and throughout the twentieth century, characterized by circular female labour migration that reappeared after a kind of lull in socialism in the postsocialist period. The historical contextualization of the phenomenon pointed to an active and mobile female population that connected the peripheral parts of Istria with the important ports and urban centres of Trieste and Rijeka. A century later, in 1990, women began to move again more intensively in the direction of the nearby regions of central and northern Italy as paid domestic workers, especially as paid care workers of the elderly. The research has shown some salient features of the local informal domestic and care work market like its simultaneous local and transnational character. For this reason, many of my interlocutors, even though they were working in Croatia at the time of the research, testify either to earlier experience of working in Italy or to the possibility of continuously switching locations between Italy and Croatia, according to better working conditions, while expanding the ring of economic movement. In the fourth chapter, I present the analysis of the collected data. In the first subchapter, I analyse collected archival materials, articles and advertisements published in daily local newspapers, written in Italian and Croatian, and magazines from the wider area of the monarchy. The materials depict the entry of a female subject into the labour market and to some extent dissolve the view towards the meaning of paid domestic work, that is, domestic service and the social and economic status of female workers and domestic servants at the end of the 19th and the beginning of the 20th century. Then, to better contextualize the local informal market of paid domestic work, I briefly review current problems of the unemployed and retired population + 65 years of age and the institutional and non-institutional frameworks of care for the elderly and infirm. In the second part of the chapter, I analyse the motivations of female workers in choosing local and transnational informal paid domestic work, specifically paid care work for the elderly and sick, and the relationships among female workers who work in the same household. Consequently, I focus on specific challenges of care work for dementia patients in which the workers lack formal training hence rely mainly on their own knowledge and personal experiences acquired elsewhere. In addition, I analyse the features and meanings of material, emotional and affective work as well as experiences and practices of care and domestic work in four households in Rijeka and Pula. Entering the household space and the place of work enabled insight into the process of construction of the meaning of contemporary paid care work that is inseparable and "collides" with the materiality of the space in which the sick and older person resides. The research has shown how practices of paid care work are built through the material culture of the household as well as care for the domestic space and the objects in it. Secondly, this thesis has shown that care work and domestic work are extremely demanding forms of work woven from material and immaterial aspects. The experience of caring for an elderly and weakly mobile person is undoubtedly a deep physical experience in which the body is a place and means of work. More so, paid care work is also a deeply emotional and affective form of work. Calming, consoling, hugging, laughing, whispering or convincing a sick and elderly person that the worker is in the room and hears their needs, fears and desires, are all activities placed in the complex spectrum of care as affective and emotional work. In addition to the wide range of tasks and obligations, the worker's relational work is one of the key determinants of paid informal care. The workers build this relational work through building relationships with the sick person, but also in maintaining, or partially restoring, broken family ties due to the severity of the disease and loss of memory of the sick person. The fifth and final chapter suggests that paid domestic work is a longue durée phenomenon present throughout the 19th, 20th, and 20th centuries, not only because of its presence during historical periods, but also because of its durability and adaptability in different contexts. More so, I analyse meaning and practices of contemporary paid domestic and care work by contextualising it within a broader framework of transformation of work and labour in postfordist economies. Such new phase of capitalist production uses women, that is, the historical asymmetry of gender relations, transferring them into production that it feminizes. The latter does not mean only a large share of women's participation, the dependence and subsumption of centuries of women's experience, on the labour market but also in the household domain, which are now becoming the general paradigm of work, regardless of gender. Among others, the aim of this research is created both as an advocacy practice and a critique of the systematic neglect of the phenomenon and its far-reaching consequences for the worker and the wider society. In the context of the demographic aging of the population in Croatia, this dissertation contributes to broadening the spectrum of knowledge about elderly care and the specific challenges faced by dementia sufferers, their family members, and the workers who care for them. The topic of care in the past decade has crystallized as a hub for numerous problems of contemporary societies of the global north. Care as a warm, allencompassing activity based on altruism, love and reciprocity has left the intimate and gendered private space and now follows the logic of the market economy. The contemporary crisis of care brings with it the question of the social organization of care and the crisis of social reproduction, pointing to the resulting ruptures in life support systems. The modern development of the economy of care for our households, children and the elderly are the result of a new form of commodification of reproductive work and care work. In these economic processes, what is bought is not 'only the labor power' of the worker, but her entire personality, emotions and previously acquired biographical experiences, and the boundaries between the very essence of the worker and her work are porous and unclear. The new reproductive paradigm reveals how the boundaries between the production of goods and the reproduction of people are shifting due to the redefinition of what constitutes unskilled activities, activities necessary for survival (necessary work) and those activities that are valued. In these processes of redefining care (work) in the household, old or completely new possibilities for marginalization, exploitation and oppression are strengthened.

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Alzheimer’s Disease and Human Rights

Cited by 6 publications

References 0 publications

Public library services for people with dementia: A study of students’ perceptions

Public library services for people with dementia: A study of students’ perceptions

How Information Science Research Can Contribute to the Development of Dementia‐Friendly Communities

Svakodnevne prakse i iskustva plaćenih radnica u kućanstvu u Istri i Primorju

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