This thesis explores the experience of dementia as recounted by family carers and people with the early experience of dementia. Between October, 1992 and May, 1996 sixty four semi-structured interviews were conducted with family carers of people with dementia using a modified grounded theory approach. Constant comparative analysis of the data led to the emergence of a five stage integrated scheme to explain their experiences, namely: Recognising the Need (1); Taking it On (2); Working Through It (3); Reaching the End (4); and A New Beginning (5), with critical junctures attached to each stage which either locked the carer in, or moved the carer through, the model. A second phase of data collection comprised eleven interviews with ten people with the early experience of dementia and their family carers. Analysis of these data resulted in the emergence of the stage of Keeping it Hidden with its supporting strategies: Closing Down; Regrouping; and Covering your Tracks which help to explain how people with early dementia manage their changing cognitive abilities. Following a theoretical integration of the two phases of data collection the process of 'working' emerged in three forms, i.e. Working Apart; Working Together; and Working Alone to explain movement between the above two models. Transcending the data, the study also generated the linking scheme of Maintaining Involvement to help explain the dynamics of dementia. The 'fit and grab' of this linking scheme was subjected to preliminary empirical scrutiny via a third series of interviews with six carers of people with dementia. It is suggested that the grounded theory emerging from this study helps to explain the shared experience of dementia, while also having implications for policy and practice which are briefly explored in the concluding chapter, together with some of the methodological implications and limitations of the study.

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Yes / Population ageing and fiscal austerity are set to increase the reliance on family carers, who already provide much of the support for people with long term health conditions. Although most carers are willing, providing care can be hugely stressful, affecting mental and physical health1 and resulting in social isolation and financial hardship.2 When under strain, carers are less likely to be effective, increasing the risk that the care recipient is admitted to hospital or a care home.3 Health systems could reduce strain on family carers by routinely considering carers’ needs alongside patients’ needs in everyday healthcare decisions—a concept we term “carer proofing”. / none

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This study, completed in 2008, aims to address gaps in the literature on caring concerning the reluctance of CALD communities in Australia to use formal care. It hypothesises that broader cultural considerations, rather than merely language barriers and lack of information, are responsible for the preference of CALD communities for informal care. The literature on caring, mediated by certain aspects of Bourdieu??s habitus, is employed as a conceptual framework to analyse the informal and formal strategies employed by carers from the Italian and Greek speaking communities. The study concludes that habitus, informed by cultural factors, influences both the means of access to formal care and the type of formal care acceptable to these communities but differs between communities and between generations within each community. However,second and third order influences can lead to modification of habitus and caring strategies

This study, completed in 2008, aims to address gaps in the literature on caring concerning the reluctance of CALD communities in Australia to use formal care. It hypothesises that broader cultural considerations, rather than merely language barriers and lack of information, are responsible for the preference of CALD communities for informal care. The literature on caring, mediated by certain aspects of Bourdieu??s habitus, is employed as a conceptual framework to analyse the informal and formal strategies employed by carers from the Italian and Greek speaking communities. The study concludes that habitus, informed by cultural factors, influences both the means of access to formal care and the type of formal care acceptable to these communities but differs between communities and between generations within each community. However,second and third order influences can lead to modification of habitus and caring strategies

The intention of this thesis is to explore and discuss the experiences of consumers and carers with psychiatric disability support services. In particular their participation in service development and delivery and the degree to which their relationship with services and providers has influenced this participation, is explored and discussed. These relationships are particularly relevant in the context of the dynamics that determine power and the strategies that consumers have adopted so that they become more empowered and have control over their own lives. / Consumers and their carers are placing greater demands on the mental health service system within Victoria. Reforms to mental health and psychiatric disability support service delivery and practice have resulted in deinstitutionalisation, recognition of fundamental human rights and changes to mental health legislation. Participation by consumers and carers in service development and delivery has been viewed by governments as necessary and important in contributing to care, treatment and support systems. / The National Mental Health Policy developed by the Australian Health Ministers paid substantial attention to the need to include consumers and carers in decisions that shape mental health services. These are underpinned by the World Health Organisation’s doctrine that people have the right and duty to participate individually and collectively in the planning and implementation of their health care. (WHO 1990, p. 14). In Victoria, the National Mental Health Policy lead to the development of a framework for mental health services that reinforced consumer and carer participation in service development and delivery. / A qualitative methodology was used for this investigation. In-depth interviews were conducted with consumers and carers to gain a thorough understanding of their experiences and perceptions of the current mental health system. A review of available literature on the developing mental health consumer movement and on the concepts and practices of empowering strategies was undertaken. The opportunities for participation in the design, development and delivery of services in the context of actual experiences, are discussed with consumers and carers with particular emphasis on consumers’ perceptions of power and empowerment. / The transition from institution to community, known as deinstitutionalisation, has not been an easy one to accept by consumers and carers alike. The changes to service design and delivery with a greater focus on community and out reach services, and the necessary changes in attitudes by providers toward consumers as a result of these changes, have established major challenges for the mental health and psychiatric disability support services sector. Consumers and carers argue that the rhetoric inherent in the decision to implement deinstitutionalisation policies and practices that have lead to a shift to services primarily delivered outside of institutions, needs to be taken to another level. They want to ensure that they are recognised and accepted as bringing essential knowledge and experience to a service system that should be designed to support consumers and carers who face life altering circumstances as a result of a mental illness. / The information provided by consumer participants suggests that the reforms to some degree have provided them with more opportunities to take control over their own lives particularly in relation to their involvement in community based psychiatric disability support services. However, they describe the attitudes of providers as remaining the greatest barrier to advancing consumer participation. Carers on the other hand describe their experiences with psychiatric disability support services as disempowering. Their disillusionment with the mental health system is attributed to the lack of support and their perceived lack of recognition in their role as carers.

The aim of phase one was to explore the self-concept of young carers and to identify school staff awareness regarding young carers. Eleven young carers (aged 11 to 14) participated in a single session involving a self-concept activity and a demographic questionnaire. The self-concept activity was designed to elicit salient aspects of self in the form of twenty statements. These statements subsequently formed a card sorting exercise to identify which statements were most important to the young carer, and considered positive or negative. Through thematic analysis, salient aspects of self were identified, which included reference to individual traits, interests, competencies, social relationships and family, as well as to helping and the caring role. Statements related to traits and family were found to be most important to young carers. Statements regarding traits and competencies were identified as most positive. 39 school staff respondents completed a questionnaire on defining young carers, internal and external support and perceived effectiveness in supporting young carers. Descriptive statistics were used and analysis was carried out on these data. School staff demonstrated a basic awareness of young carers although some inconsistencies regarding knowledge of the young carer experience still remain. School staff provided detail of internal and external support but felt they could still be more effective in supporting young carers. The findings from young carers and school staff are discussed in relation to relevant literature and strengths and limitations of phase one have been noted. In phase two, five young carers participated in three focus group sessions, seeking to identify valued support. Thematic analysis identified key areas of support that are summarised in an information booklet for school staff. The findings are discussed in the context of relevant literature and strengths and limitations of phase two are identified. An overall discussion situates the research in a wider context, reflecting on future directions for research and implications for educational psychologists.