Bakgrund   Demenssjukdomar är en grupp sjukdomar som orsakar att hjärnans celler successivt och irreversibelt förlorar funktion och dör. Detta kallas neurodegeneration. Symtomen för demens varierar mellan de olika typerna av demenssjukdom. Demenssjukdomar kan behandlas till en viss grad, men går inte att bota. Alla med demenssjukdom behöver till slut stöd och hjälp i vardagen. Vissa med demenssjukdom bor i någon form av icke-ordinärt boende, alltså inte i det egna hemmet. På icke-ordinära boenden får den demenssjuke personen hjälp av personal för att klara av vardagen och sin sjukdom, men många bor hemma. Då är det inte sällan anhöriga som står för hjälp och stöd. Syfte Syftet var att beskriva anhörigas erfarenheter av att vårda en person med demenssjukdom i hemmet. Metod Denna litteraturöversikt är icke-systematisk med kvalitativ ansats. Resultatet baserades på tio vetenskapliga artiklar, varav nio med kvalitativ ansats och en med mixad metod. Artiklarna inhämtades från sökning i databasen PubMed. Artiklarna analyserades genom integrerad analys. Resultat Fem teman identifierades i resultatet: Förändrade relationer och en ny framtid, Den nya rollen, Erfarenheter av samhälle och kultur, Konsekvenser för anhörigvårdaren samt Positiva erfarenheter. Resultatet påvisade att anhöriga som vårdar personer med demens i hemmet i hög utsträckning känner sorg och förlust, dels över den demenssjuke personen, dels för relationen de haft och som inte längre är densamme. Det framkom även frustration och en känsla av otillräcklighet i den nya rollen som anhörigvårdare. Slutsats Omvårdnaden och vården som anhöriga bistår sina demenssjuka familjemedlemmar är viktig och ovärderlig för samhället. Dock blir de anhöriga inte sällan påverkade psykiskt, fysiskt och existentiellt av vad det innebär att vara anhörigvårdare. / Background Dementia is a group of diseases that cause brain cells to successively and irreversibly lose function and die. This is called neurodegeneration. The symptoms of dementia differ between the different types of dementia. Dementia can be treated to a certain degree but cannot be cured. All persons with dementia will at some point need support in their everyday lives. Some with dementia live in a residential facility or nursing home, thus not in the ordinary home. In residential facilities or nursing homes, the person with dementia receives help and support from personnel to manage everyday life, yet many live in their own homes. Those who live at home often receive help and support from family and relatives. Aim The aim was to describe the experiences of family caregivers caring for a relative with dementia at home. Method This literature review is non-systematic with a qualitative approach. The result was based on ten research articles, nine of which had qualitative approaches and one was a mixed method study. The articles were retrieved from searches in the database PubMed. The articles were analyzed with an integrated analysis.  Results Five themes were identified in the result: Changed relationships and a new future, The new role, Experiences of society and culture, Consequences for the family caregiver, and Positive experiences. The result showed that family caregivers largely experience grief and loss, partly over the person with dementia, and partly over the relationship they had and that is no longer what it used to be. Frustration and a feeling of inadequateness in their new roles also emerged as a result. Conclusions The care that family caregivers provide their relatives with dementia is important and invaluable for society. Yet the family caregivers often suffer psychological, physical, and existential consequences from what caregiving entails.

Yes / In this article we address how relatives of people with frontal-variant frontotemporal dementia (fvFTD) experience the illness and how it impacts their lives. We interviewed 6 participants and carried out interpretative phenomenological analysis. We report on 11 themes that reflect distinctive challenges. Five themes relate to witnessing bizarre and strange changes: changed appetites and drives, loss of planning ability, loss of inhibition leading to social embarrassment, risky behavior, and communication problems. Four relate to managing these changes and two to the impact on the person and his or her relationships. Relatives must live with unusual changes in the person with fvFTD and the stigma this carries in social settings. They learn to act assertively for their relatives and put effort into promoting quality of life, using strategies adapted for fvFTD. Relatives grieve the loss of the person with fvFTD and their mutual relationship, but nonetheless find sources of solace and hope.

Resilience is defined as doing well despite significant hardships. Based on four principles informing a social-ecological definition of resilience (that is, decentrality, complexity, a typicality, and cultural relativity), Ungar (2011, 2012) hypothesised an explanation of social-ecological resilience. Seen from this perspective, resilience involves active youthsocial-ecological transactions towards meaningful, resilience-promoting supports. Youths’ usage of these supports might differ due to, among others, specific lived experiences, contextual influences, and youths’ subjective perceptions. While Ungar’s explanation is both popular and plausible, it has not been quantitatively tested, also not in South Africa. Moreover, there is little quantitatively informed evidence about youths’ differential resource-use, particularly when youth share a context and culture, and how such knowledge might support social ecologies to facilitate resilience processes. The overall purpose of this study was, therefore, to investigate black South African youths’ resilience processes from a social-ecological perspective, using a sample of black South African youth. This purpose was operationalised as sub-aims (explained below) that addressed the aforementioned gaps in theory. Data to support this study were accessed via the Pathways to Resilience Research Project (see www.resilienceresearch.org), of which this study is part. The Pathways to Resilience Research Project investigates the social-ecological contributions to youths’ resilience across cultures. This study consists of three manuscripts. Using a systematic literature review, Manuscript 1 evaluated how well quantitative studies of South African youth resilience avoided the pitfalls made public in the international critiques of resilience studies. For the most part, quantitative studies of South African youth resilience did not mirror international developments of understanding resilience as a complex socio-ecologically facilitated process. The results identified aspects of quantitative studies of South African youth resilience that necessitated attention. In addition, the manuscript called for quantitative studies that would statistically explain the complex dynamic resilience-supporting transactions between South African youths and their contexts. Manuscript 2 answered the aforementioned call by grounding its research design in a theoretical framework that respected the sociocultural life-worlds of South African youth (that is, Ungar’s Social-Ecological Explanation of Resilience). Ungar’s Social-Ecological Explanation of Resilience was modelled using latent variable modelling in Mplus 7.2, with data gathered with the Pathways to Resilience Youth Measure by 730 black South African school-going youth. The results established that South African youths adjusted well to challenges associated with poverty and violence because of resilience processes that were co-facilitated by social ecologies. It was, furthermore, concluded that school engagement was a functional outcome of the resilience processes among black South African youth. Manuscript 2 also provided evidence that an apposite, necessary, and respectful education contributed towards schooling as a meaningful resource. Manuscript 3 provided deeper insight into aspects of black South African youths’ resilience processes. Manuscript 3 investigated youths’ self-reported perceptions of resilience-promoting resources by means of data gathered by the Pathways to Resilience Youth Measure. Consequently, two distinct groups of youth from the same social ecology made vulnerable by poverty were compared (that is, functionally resilient youth, n = 221; and formal service-using youth, n = 186). Measurement invariance, latent mean differences in Mplus 7.2, and analyses of variance in SPSS 22.0 were employed. What emerged was that positive perceptions of caregiving (that is, physical and psychological) were crucial to youths’ use of formal resilience-promoting resources and subsequent functional outcomes. The conclusions resulted in implications for both caregivers and practitioners. / PhD (Educational Psychology) North-West University, Vaal Triangle Campus 2015

Resilience is defined as doing well despite significant hardships. Based on four principles informing a social-ecological definition of resilience (that is, decentrality, complexity, a typicality, and cultural relativity), Ungar (2011, 2012) hypothesised an explanation of social-ecological resilience. Seen from this perspective, resilience involves active youthsocial-ecological transactions towards meaningful, resilience-promoting supports. Youths’ usage of these supports might differ due to, among others, specific lived experiences, contextual influences, and youths’ subjective perceptions. While Ungar’s explanation is both popular and plausible, it has not been quantitatively tested, also not in South Africa. Moreover, there is little quantitatively informed evidence about youths’ differential resource-use, particularly when youth share a context and culture, and how such knowledge might support social ecologies to facilitate resilience processes. The overall purpose of this study was, therefore, to investigate black South African youths’ resilience processes from a social-ecological perspective, using a sample of black South African youth. This purpose was operationalised as sub-aims (explained below) that addressed the aforementioned gaps in theory. Data to support this study were accessed via the Pathways to Resilience Research Project (see www.resilienceresearch.org), of which this study is part. The Pathways to Resilience Research Project investigates the social-ecological contributions to youths’ resilience across cultures. This study consists of three manuscripts. Using a systematic literature review, Manuscript 1 evaluated how well quantitative studies of South African youth resilience avoided the pitfalls made public in the international critiques of resilience studies. For the most part, quantitative studies of South African youth resilience did not mirror international developments of understanding resilience as a complex socio-ecologically facilitated process. The results identified aspects of quantitative studies of South African youth resilience that necessitated attention. In addition, the manuscript called for quantitative studies that would statistically explain the complex dynamic resilience-supporting transactions between South African youths and their contexts. Manuscript 2 answered the aforementioned call by grounding its research design in a theoretical framework that respected the sociocultural life-worlds of South African youth (that is, Ungar’s Social-Ecological Explanation of Resilience). Ungar’s Social-Ecological Explanation of Resilience was modelled using latent variable modelling in Mplus 7.2, with data gathered with the Pathways to Resilience Youth Measure by 730 black South African school-going youth. The results established that South African youths adjusted well to challenges associated with poverty and violence because of resilience processes that were co-facilitated by social ecologies. It was, furthermore, concluded that school engagement was a functional outcome of the resilience processes among black South African youth. Manuscript 2 also provided evidence that an apposite, necessary, and respectful education contributed towards schooling as a meaningful resource. Manuscript 3 provided deeper insight into aspects of black South African youths’ resilience processes. Manuscript 3 investigated youths’ self-reported perceptions of resilience-promoting resources by means of data gathered by the Pathways to Resilience Youth Measure. Consequently, two distinct groups of youth from the same social ecology made vulnerable by poverty were compared (that is, functionally resilient youth, n = 221; and formal service-using youth, n = 186). Measurement invariance, latent mean differences in Mplus 7.2, and analyses of variance in SPSS 22.0 were employed. What emerged was that positive perceptions of caregiving (that is, physical and psychological) were crucial to youths’ use of formal resilience-promoting resources and subsequent functional outcomes. The conclusions resulted in implications for both caregivers and practitioners. / PhD (Educational Psychology) North-West University, Vaal Triangle Campus 2015

Thesis (MScMedSc (Rehabilitation))--University of Stellenbosch, 2008. / Stroke is the second commonest cause of mortality worldwide and remains a leading cause of adult physical disability. It is estimated that sixty percent of South African stroke survivors require assistance with at least one activity of daily living. This burden is predominantly on the shoulders of mostly untrained caregivers. The process of enabling caregivers to make choices conducive to their own health as well as the health of the stroke survivors is multidimensional. One of the cornerstones of this process is the provision of information. In 1995, the Centre for Rehabilitation Studies of the University of Stellenbosch started to develop a training package for stroke care at home. The training takes the form of an interactive workshop and a booklet with practical information. The aim of this study was to refine and pilot this booklet for implementation with the training. The study found that existing guidelines to evaluate the appropriateness of written material for developing communities (measured by Hugo’s grading model), were inadequate. Consequently, a new checklist, based on twenty existing checklists, was compiled. This list, as well as the Suitability Assessment of Material (SAM), was used to evaluate the booklet and make recommendations for a pre-pilot refinement. Even though this checklist has not been validated, it revealed similar results to the SAM when applied to the booklet. After cosultation with the authors, improvements were effected to the booklet The booklet was tested with four samples of the target audience. The functional literacy of the participants was determined using a standardised literacy test. A fifth sample completed a questionnaire on their preference between the pre- and postrefined booklet. Experts in the field of rehabilitation and graphic design also commented on the booklet. This study confirmed the need of stroke survivors and their caregivers for written health information. The refined booklet was found to be an appropriate tool to address the needs of the target audience. The participants perceived the booklet as useful and comprehensible and the readability level was shown to correspond with the tested literacy level of the samples. However, there is a need for printed material on topics related to stroke not currently covered in the booklet, e.g. spasticity. This study showed that the checklist could be used to tailor written health information that is preferred by the target audience. It confirmed that the testing of printed material with stakeholders could expose additional gaps after applying the checklist. Recommendations for further improvements were made based on the comments of the participants. It is foreseen that the new checklist could be a valuable tool for developing future written health material. Finally, it is recommended that an interdisciplinary team that includes a graphic designer be involvement from the planning stages.

This thesis is an ethnographic analysis of a Continuing Care Retirement Community (CCRC) in the American Midwest. I examine salient aspects of American culture, and how persons in the American Midwest understand relationships and themselves in the context of eldercare, and particularly, how issues of personhood and kinship are conceptualised in a long-term care facility. Rather than focusing exclusively on just the labour of caregivers, or how the residents in the CCRC receive care, my study is grounded in the interaction and relations that obtain during specific regimes of caregiving. Because the exigencies of ageing are met with certain exigencies of care, this study touches upon three dominant themes that make sense of the tensions that emerge when principles and practices do not square up. The first theme deals with how ageing and care are constituted, and made relational to one other. Secondly, I demonstrate that in the CCRC where I conducted fieldwork, ageing is constructed as a process and institutionalised, resulting in a distinctive way in which space and time are dealt with and unravelled from their inextricability. The resulting consequences affect not just the older residents and the CCRC staff, but also impacts how caregiving takes on specific forms and meanings. Thirdly, I investigate how formal (professional) caregivers and care receivers produce a type of social relation, which cannot be understood alone by conventional studies of kinship and economic relations. Ultimately, this thesis sets the frame for future debate on the ontological commitments involved in eldercare, and how the segregation of care and of the elderly in society relate to wider social norms regarding ageing and marginality.

Thèse numérisée par la Division de la gestion de documents et des archives de l'Université de Montréal.

American businesses have confronted a changing world economy marked by increasing competition , technological innovation, and instability. Many more women have entered the labor force. Many families' caregiving needs are now being met by family members who also are holding down jobs. This, in turn, has fueled the rising need among employees for workplace policies that enable them to meet the often competing demands of job and home. In 1993, Congress passed the Family and Medical Leave Act (FMLA of the Act) to provide a national policy that supports families in their efforts to strike a workable balance between the competing demands of the workplace and the home. The objective of this study is to examine the amount of FMLA lost time at one particular company in order to determine a demographic and job characteristic profile of employees who take time away from their jobs for reasons that are protected by the Act.

Introdução: Este estudo tem como objeto as práticas de autocuidado e o cuidado familiar do indígena com Doença Crônica Não Transmissível. Objetivo: Analisar as práticas de autocuidado e do cuidado familiar, seguido pela caracterização demográfica e socioeconômica, verificação da prevalência da Doença Crônica Não Transmissível, identificação das práticas de autocuidado, das características do cuidado familiar, avaliação do desempenho das Atividades da Vida Diária e Atividades Instrumentais da Vida Diária dos índios da etnia Mura, além da associação com as variáveis do estudo. Método: Estudo exploratório, descritivo, transversal, com abordagem quantitativa, de 198 índios adultos com Doença Crônica Não Transmissível, cadastrados no Polo-base Pantaleão do município de Autazes, Amazonas. Foi aplicado um formulário com questões referentes aos dados demográficos, socioeconômicos e de condição de saúde, às práticas de autocuidado e do cuidado familiar, além dos instrumentos como o Índice de Barthel e a Escala de Lawton. Na análise descritiva, procedeu-se a descrição dos dados por meio da distribuição de frequência, porcentagem e medidas descritivas (média, desvio padrão, amplitude mínima e máxima). Na análise inferencial foram empregados os testes Qui-Quadrado de Pearson e o Exato de Fisher para associação entre as variáveis, sendo adotado um nível de significância de 5%. Resultados: Houve predomínio do sexo feminino, com média de 59 anos. Quanto às práticas de autocuidado relacionadas aos hábitos alimentares e de vida: 92,5% relataram consumir frutas, 83,8% verduras, 98,0% legumes, 68,2% carne, 88,4% frango, 96,0% peixes; 86,4% não tabagistas, 92,4% não etilistas, 85,4% não praticantes de exercício físico e 97,5% de esporte. Com relação ao cuidado familiar, a dimensão instrumental e emocional demonstrou-se mais frequente, promovida pelos familiares como as filhas e os cônjuges. A avaliação do autocuidado nas Atividades da Vida Diária e Atividades Instrumental da Vida Diária constatou que a maioria é considerada independente funcional. Dos dados analisados, foi encontrada associação estatística entre as Doenças do Sistema Circulatório com os sinais e sintomas e a etiologia para o conhecimento da Doença Crônica Não Transmissível, internação hospitalar, restrição no consumo de alimento gorduroso, no uso de sal na refeição já servida e não seguir nenhuma restrição alimentar, medicamento, quantidade de medicamento, Dieta/alimentação e o comportamento na prática de autocuidado, Dieta/alimentação nas orientações recebidas sobre o autocuidado; as Doenças Nutricional e Endócrina Metabólica com o sexo, antecedente familiar, fisiologia e não ter conhecimento da Doença Crônica Não Transmissível, consumo de frango, não seguir nenhuma restrição alimentar, quantidade de medicamento, não seguir nenhuma prática de autocuidado, os aspectos emocionais e comportamentais para as dificuldades no autocuidado, Dieta/Alimentação para as orientações recebidas sobre o autocuidado; as Doenças do Sistema Osteomuscular e Tecido Conjuntivo com idade, renda pessoal, número de refeições, quantidade de medicamento e o conforto na prática de autocuidado. As Atividades da Vida Diária apresentaram associação estatística com a idade, escolaridade, autoavaliação de saúde, consulta na unidade, consumo de frutas, não realizar nenhuma prática de autocuidado, aspectos financeiros, físicos e não ter dificuldades no autocuidado Quanto às Atividades Instrumentais da Vida Diária, teve associação estatística com a idade, escolaridade, situação ocupacional, renda pessoal e familiar, Índice de Massa Corpórea, consumo de frutas, etilismo, exercício físico, aspectos físicos para as dificuldades no autocuidado, Dieta/alimentação nas orientações recebidas sobre o autocuidado, dimensão instrumental e material no apoio social. As dimensões do apoio social apresentaram associação estatística entre o instrumental com o arranjo familiar, número de moradores; o emocional com a idade e escolaridade; material com as doenças do sistema nervoso; a interação social positiva com idade, escolaridade, arranjo familiar e as doenças dos olhos e anexos. Conclusão: Diante dos resultados obtidos neste estudo, reconhecemos a importância dos profissionais de saúde do Polo-base nas questões sobre o conhecimento das práticas de autocuidado, e o apoio social promovido pela família para a abordagem no tratamento e acompanhamento ao índio com Doença Crônica Não Transmissível. / Introduction: This study objectifies the self-care practices and family caregiving to the Indigenous individual suffering from Non-Communicable Diseases (NCDs). Objective: To analyze the self-care practices and family caregiving followed by the demographic and socioeconomic profile, assessment of the prevalence of Non-Communicable Diseases, identification of self-care practices, characteristics of the family caregiving and evaluation of the performance in the Activities of Daily Living (ADLs) and in the Instrumental Activities of Daily Living (IADLs) among Mura Indigenous individuals, besides the association with the study variables. Method: Exploratory, descriptive, crosscut, quantitative study with 198 adult Indigenous individuals, Mura ethnicity, suffering from NCDs, registered at Pantaleão Primary Health Care Center in the municipality of Autazes, Amazonas State, Brazil. A formulary was applied with questions regarding demographic, socioeconomic data, health status, self-care practices and family caregiving, as well as instruments, such as the Barthel Index and Lawton Scale. In the descriptive analysis, data description was performed by means of percentage frequency distribution, and descriptive measures (mean, standard deviation, amplitude, maximum and minimum values). Inferential Statistical Analysis was performed by means of Pearsons Chi-square Test and Fishers Exact Test for variable association, significance level of 5%. Results: Female prevalence, average age of 59 years. Regarding self-care practices related to food and lifestyle habits, 92.5% reported fruit consumption, green leaves (83.8%), vegetables (98.0%), meat (68.2%), chicken (88.4%), and fish (96.0%); non-smokers (86.4%), non-alcoholic (92.4%), 85.4% do not exercise or practice sports (97.5%). In relation to family caregiving, the instrumental and emotional dimension was the most frequent, promoted by family members, such as daughters and spouses. Self-care assessment for the ADLs and IADLs evidenced that most individuals were functionally independent. From the analyzed data, statistical association was found between circulatory system diseases (CSDs) with their signs and symptoms and the etiology for NCD knowledge, hospitalization, restriction of high-fat food intake, addition of salt to the served food, non-compliance to any dietary guidelines, medication, amount of medication, diet/food and behavior for self-care practice, diet/food under the received self-care guidance; Endocrine, nutritional and metabolic diseases were associated with gender, family history, physiology and unawareness of NCDs, chicken consumption, non-compliance to any dietary guidelines, amount of medication, non-compliance to any self-care practice; emotional and behavioral aspects were associated with self-care deficits, Diet/Food with received self-care guidance; Osteomuscular system and connective tissue diseases were associated with age, income, number of meals, amount of medication and ease on the self-care practice. ADLs were statistically associated with age, schooling, health status self-assessment, health care center visits, fruit intake, non-compliance to any self-care practice, financial and physical aspects, and ease on self-care. As for the IADLs, they were statistically associated with age, schooling, occupational status, individual and family income, Body Mass Index (BMI), fruit intake, alcoholism, exercising, physical aspects for self-care deficits, Diet/food in the received self-care guidance, instrumental and material dimensions for social support. Social support dimensions evidenced statistical association between the instrumental and the family arrangement, number of residents; the emotional social support dimension was associated with age and schooling; the material dimension with nervous system diseases; positive social interaction with age, schooling, family arrangement and eye-related diseases. Conclusion: Due to the obtained results in this study, we recognize the importance of the healthcare professionals from the referred Primary Health Care Center in the issues regarding the knowledge of self-care practices, as well as the social support promoted by the family on the treatment approach and follow up to the Indigenous individual suffering from a Non-Communicable Disease.

Identified by European research as an aging crisis, vulnerabilities in the rural Bulgarian elderly population such as intergenerational caregiver loss, are sociohistorical consequences and barriers to successful aging. This transcultural study investigated the aging crisis in rural Bulgaria to create a contextual definition of successful aging and to address successful aging and the identification of challenges and barriers faced by social workers and elders to support successful aging. Guided by continuity theory in aging and contextualized by overarching ecological systems theory, the research questions examined Bulgarian social workers' perceptions and expectations of successful aging and barriers to it. A collaborative action research design was commissioned with a purposeful sample of an 8-member participant group drawn from multileveled Bulgarian social workers affiliated with the rural elderly population. Data were distilled by a thematic analysis into perceptions, expectations, and barriers of successful aging, which were validated by triangulation through translation and repetitive member checking processes. The findings revealed no universal threshold of successful aging achievement, but because expectations were unmet due to systemic barriers successful aging is not occurring in Bulgaria. The study results might bring about positive change by unifying Bulgarian multilevel social work practice to restore successful aging opportunity for the rural Bulgarian population by actions that systemically respond to the identified barriers.