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’.

Submitted by Mariana Dornelles Vargas (marianadv) on 2015-05-19T19:52:27Z No. of bitstreams: 1 conjugalidade_anos.pdf: 1781303 bytes, checksum: cbedcc42bf2f9f8cdaa2aa219988cc28 (MD5) / Made available in DSpace on 2015-05-19T19:52:27Z (GMT). No. of bitstreams: 1 conjugalidade_anos.pdf: 1781303 bytes, checksum: cbedcc42bf2f9f8cdaa2aa219988cc28 (MD5) Previous issue date: 2011 / Nenhuma / As experiências na família de origem impactam a trajetória do sujeito em vários aspectos de sua vida futura, dentre eles a formação da conjugalidade. O objetivo deste estudo foi compreender como as experiências na família de origem se refletem na vivência da conjugalidade nos anos inicias do casamento. Mais especificamente, objetivou identificar como jovens casais descrevem seu relacionamento conjugal; como se caracterizam as famílias de origem de cada um dos cônjuges; quais experiências vivenciadas na família de origem são consideradas relevantes pelo casal para a construção do seu relacionamento e como o casal integra as experiências trazidas de cada família. Para atingir os objetivos propostos, foi realizado um estudo de casos com três jovens casais, em primeira união, com no máximo dois anos de relacionamento estável. Os achados revelaram que o relacionamento com a família de origem é bastante significativo para a vivência do jovem casal, sendo os primeiros anos de casamento uma etapa crucial no desenvolvimento da identidade conjugal, a partir do processo de separação-individuação com relação às famílias de origem. O estudo possibilitou compreender a importância da família de origem na formação da conjugalidade, na perspectiva dos casais, evidenciando dificuldades no processo de separação-individuação e sofrimento psíquico de alguns membros da família em relação ao distanciamento promovido pelo casamento. A presente dissertação está constituída por dois artigos, um deles teórico, sobre a transgeracionalidade nas relações familiares, com base nas abordagens psicanalítica e sistêmica, e outro empírico, relatando o resultado do estudo realizado com três jovens casais sobre a formação da conjugalidade a partir das experiências nas famílias de origem / Experiences in family of origin impact the trajectory of the subject in various aspects of your future life, including the formation of marriage. The aim of this study was to understand how experiences in the family of origin are reflected in the experience of marital initial years of marriage. More specifically, it aimed to identify how young couples described their marital relationship, how to characterize thefamilies of origin of each spouse, which experiences in the family of origin are considered relevant by the couple to build their relationship and how the couple integrates experiences brought each family. To achieve the proposed objectives, a study of cases with three young couples at first marriage, with a maximum of two years of steady relationship. Findings revealed that the relationship with the family of origin is significant to the experience of the young couple, and the first years of marriage a crucial step in the development of marital identity, from the separation-individuation process in relation to families of origin. The study enabled us to understand the importance of family of origin in the formation of a marital status of couples in perspective, highlighting difficulties in the process of separation-individuation and psychological distress among some family members in relation to the distance promoted by marriage. This dissertation is composed of two articles, one theoretical, transgenerationality about family relationships, based on psychoanalytic and systemic approaches, and other empirical, reporting the results of the study of three young couples on the formation of conjugal from experiences in families of origin.

Falling by older people is of significant global concern as the population ages, because of subsequent injury, disability, admission to long-term care and mortality. Older people experiencing dementia are twice as likely to fall with more severe consequences. Unsurprisingly, carer-burden increases when a care-recipient falls. Older people are rarely asked about their falls experiences and those with dementia less so. The studies presented in this thesis explore the experiences of falling of older people with dementia and memory problems, and their carers. The studies were informed by contextualism and the primary study used interpretative phenomenological analysis to explore the experiences of nine older people with dementia and their 10 carers, using one-to-one and joint interviews, and three focus groups with nine older people experiencing memory problems and 12 carers from a branch of the Alzheimer’s society. Analysis of the data considered the falls experience itself and the perceived consequences of falls within two higher level themes: ‘Falling as a malevolent force’ as two themes - ‘Going back to the experience’, ‘Reactions, responses and coming to terms with events’, and ‘Falling as the manifestation of dementia’ as two themes - ‘Self, identity and falling’, ‘The caring relationship’. The secondary study elaborated upon primary study data using an inductive interpretative approach unaligned to any tradition. Older people recently diagnosed with dementia and carers from another Alzheimer’s Society branch participated in two focus groups. Participants discussed stimulus cards with quotations from primary study participants. Thematic analysis suggested four major themes: Making sense of falls, The personal and social significance of falling, Falling, self and identity and Struggling to care. The findings demonstrate how falling and dementia are enmeshed and embodied experiences for participants. Spouse-carers’ discussion of their own falls emphasise the need for joint assessment and intervention to reduce carerburden and preserve couplehood.

Yes / Objectives: Qualitative research has suggested that spousal experiences of discontinuity in their relationship with a person who has dementia (i.e. the relationship is experienced as radically changed) may contribute to heightened feelings of burden, entrapment, isolation, guilt and intolerance of behaviours that challenge. By contrast, continuity in the relationship may contribute to a greater sense of achievement and gratification from providing care. The present study served as a quantitative test of these suggestions. Method: A convenience sample of 71 spouses of people with dementia completed three questionnaires - the Zarit Burden Interview (ZBI), the Positive Aspects of Caregiving measure (PAC) and the Birmingham Relationship Continuity Measure (BRCM). Results: In accordance with the hypotheses, the experience of greater relationship continuity (higher BRCM scores) was correlated with fewer negative emotional reactions to caregiving (lower ZBI scores; rho = −.795) and more positive emotional reactions (higher PAC scores; rho = .764). Conclusions: The study provided some quantitative support for suggestions arising from qualitative research about how perceptions of continuity/discontinuity in the relationship may impact on the caregiving spouse's emotional well-being. Helping couples to maintain a sense of continuity and couplehood may assist their emotional adjustment to dementia.