The overall aim of this thesis is to gain a better understanding how people with dementia and their spouses experience dementia over time, especially the impact it has on their inter-personal relationships and patterns of everyday life. Data were collected using separate semi-structured interviews with 20 persons with dementia and their spouses of 6 monthly intervals over an 18-months period (132 interviews in total), and analysed using constructivist grounded theory. Analysis suggested that whilst spouses are aware of and acknowledge the diagnosis of dementia, they do not routinely talk about it but rather the focus of their combined efforts is on making life as meaningful as possible. To do this couples, rather than individuals, actively ‘work together’ to create a ‘nurturative relational context’ in order to sustain the quality of their relationship, and maintain the self-image and sense of agency of the person with dementia. In order to create a ‘nurturative relational context’ couples continued to ‘do things together’ for as long as possible by understanding complementary roles underpinned by a mutual appreciation of each others contribution in a way that builds upon the remaining strengths of the person with dementia. Their focus is therefore on ‘couplehood’ as much as ‘personhood’. An analysis of the complete data set identified three temporally sequenced but overlapping phases of the experience of couplehood termed ‘sustaining couplehood’, ‘maintaining involvement’, and ‘becoming alone’. ‘Sustaining couplehood’ had the primary goal of ensuring that the spuses’ ‘work’. This involved four interrelated sets of activities: talking things through, in order to ensure good communication and acknowledge and value differences; being affectionate and appreciative by demonstrating continued attractiveness to their spouse; making the most of things by enjoying everyday pleasures, looking for positive interpretations of events and focussing on the present (living for today); and finally, keeping the peace by being aware of potential points of friction and not responding to difficult behaviour. Both the person with dementia and the non-affected spouse were active strategies in the above process. In addition both spouses worked to ‘maintain the involvement’ of the person with dementia by ensuring that they had an active role to play. However, despite their efforts, eventually the non-affected spouse took on an increasing role and this occurred in a number of ways, either by the person with dementia consciously ‘handing over’ responsibility or more passively ‘letting go’, or by the non-affected spouse ‘taking over’. ‘Sustaining couplehood’ and ‘maintaining involvement’ often occurred simultaneously but the relative emphasis changed over time as ‘sustaining couplehood’ became more difficult and increasing effort was expended in ‘maintaining involvement’. As this occurred the data suggested that the non-affected spouse became increasingly ‘alone’ as the dementia progressed. This process has yet to be fully explored, however, it is clear that for spouses a complete understanding of the dementia experience is not possible without consideration of ‘couplehood’.

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Made available in DSpace on 2016-06-02T19:46:05Z (GMT). No. of bitstreams: 1 2340.pdf: 590880 bytes, checksum: 577464dd148d47bc60a87a37af5cb726 (MD5) Previous issue date: 2009-02-26 / The scientific literature indicates that certain family characteristics can act as risk factors for children s social development, such as low income and low educational attainment levels, adolescent pregnancy, social isolation, parents who are highly stressed, single-parent families, a parent with a psychiatric disorder (including depression), parents with a criminal history, a history of drug abuse, or a high-conflict spousal relationship. More detailed information about some of these factors is lacking, particularly with respect to the Brazilian context, as in the case of spousal conflicts. Such information is essential to permit the construction of preventive programs that could reduce risk factors for infant social development, in Brazil. Risk factors can contribute to the development of problem behaviors among children and, as a result, interfere in their social relationships, as well as contributing to other difficulties such as learning problems, depression, anxiety and other psychological conditions. For this reason, the identification and prevention of risk factors that can harm human development is one of the research areas of the Special Education Graduate Program at the Federal University of São Carlos (Brazil). Although the number of Special Education prevention programs has increased significantly, especially in the United States, there are few prevention programs in this area, in Brazil, resulting in a situation in which professionals face the difficult task of remediating long-term problems. Considering the paucity of Brazilian studies that aim to verify the impacts of conflicts in the spousal relationship on infant social development, particularly among very young infants, the objective of this study was to investigate the relationships between personal parent-characteristics, characteristics of the spousal relationship and the social performance of their child, between one and two years of age. Given the exploratory nature of this study, a non-experimental design was used. Participants included 27 couples and their target child, who was between 15 and 26 months of age and who attended a daycare center in the city of Araraquara, São Paulo, Brazil. The parents completed an instrument to evaluate their socioeconomic situation, a Marital Social Skills Inventory, a Description of Conflict Situations, and Lipp s Adult Stress Symptoms Inventory. The Operationalized Portage Inventory was used to evaluate the children s social performance. Although there was a certain amount of variability in the participants responses, the correlations between the parents personal characteristics and their child s social performance were non-significant. With respect to the parents marital social skills, in this sample, there was a significant negative correlation between the frequency with which the parents reported that they stomped out of the room, and the child s social performance (r = - 0.48, p < 0.05). Using the results from this study together with those from other studies about this topic, it should be possible to create programs that can help prevent problems in families with children in this age group, striving to provide them with the means to transform some of the characteristics of their spousal relationship so that they will be protective factors for their child s development. / A literatura científica tem apontado algumas características familiares como fatores de risco para o desenvolvimento social das crianças, como por exemplo, baixa renda, baixa escolaridade, gravidez na adolescência, o isolamento social da família, pais vivendo com estresse elevado, famílias monoparentais, doença psiquiátrica parental (incluindo depressão), história parental criminal, história de abuso de substâncias, ou alto grau de conflitos conjugais. Alguns destes fatores, como no caso de conflitos conjugais, carecem de informações mais detalhadas, obtidas no contexto brasileiro, as quais são essenciais para fundamentar a construção de programas de prevenção para reduzir fatores de risco ao desenvolvimento infantil social, no Brasil. Os fatores de risco podem contribuir para o desenvolvimento de problemas de comportamento por parte das crianças e, conseqüentemente, prejudicarem seu convívio social, além de serem possíveis fontes para outros problemas como dificuldades de aprendizagem, depressão, ansiedade e outros quadros psicológicos. Em função disso, a identificação e prevenção dos fatores de risco que possam prejudicar o desenvolvimento humano é uma das áreas de estudo do Programa de Pós-Graduação em Educação Especial da Universidade Federal de São Carlos. Embora o número de programas de prevenção em Educação Especial tenha crescido significativamente, especialmente nos Estados Unidos, no Brasil pouco se fala em programas preventivos nesta área, restando aos profissionais que trabalham com esta população a difícil tarefa de remediar problemas de longa data. Considerando a escassez de estudos brasileiros que tenham como objetivo verificar os impactos de conflitos na relação conjugal no desenvolvimento social infantil especialmente com crianças muito pequenas, o objetivo deste estudo foi a investigação das relações entre características pessoais dos pais, características do relacionamento conjugal e o desempenho social de crianças na faixa etária de um a dois anos. Por se tratar de um estudo exploratório, o delineamento não-experimental foi utilizado. Participaram deste estudo 27 casais e seu filho-alvo, com idade entre 15 e 26 meses, matriculado em uma creche da cidade de Araraquara SP. Os pais preencheram um instrumento sobre seu perfil sócio-econômico, o Inventário de Habilidades Sociais Conjugais, uma Descrição das Situações de Conflito e o Inventário de sintomas de Stress para Adultos de Lipp. Para a avaliação do desempenho social das crianças o Inventário Portage Operacionalizado foi utilizado. Embora tenha existido certo grau de variação nas respostas dos participantes, não foram encontradas correlações significativas entre as características dos pais e o desempenho social das crianças. Com relação às habilidades sociais conjugais dos pais, houve uma correlação negativa significativa entre a freqüência com que o pai relatava que sai do lugar em que estava com seu parceiro, batendo o pé, e o desenvolvimento social das crianças desta amostra (r = - 0,48; p < 0,05). Espera-se que os resultados obtidos por este estudo e outros sobre a mesma temática possam ser utilizados como base para programas que tenham como objetivo trabalhar preventivamente com as famílias de crianças nesta faixa etária, a fim de instrumentalizá-los a transformar algumas das características de seu relacionamento conjugal em fatores de proteção para o desenvolvimento do seu filho.