Browsing by Author "Purkis, Mary Ellen"
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ItemRe-thinking the nature of day programs for people with dementia: implications for research(2019) Symonds-Brown, Holly; Ceci, Christine; Duggleby, Wendy; Purkis, Mary EllenDay programs are commonly identified in dementia strategies as a solution for keeping people with dementia home for as long as possible. Limited research evidence is available to support these policy approaches, and much of what exists demonstrates equivocal results. While key day program researchers have called for improvements in methodological and theoretical efforts, we argue that basic assumptions concerning what a day program is, and how the effects of day programs should be studied, also require reconsideration. Problematization is a systematic review strategy used to identify and critique assumptions guiding research practices and knowledge development in a field of study. The approach entails a broad overview of a field of research alongside a close reading of key texts to identify prevailing assumptions about the object of study and how it can be known. The intent is to discern how these assumptions are influencing research practices and thus knowledge development. A review of historical texts and research literature reviews was used (1) to identify trends in day program research between 1990 and 2018 and (2) to support identification of influential and typical studies for closer analysis (n = 36). The outcome of our analysis of the research literature suggests three sets of assumptions that guide much of the day program research literature: dementia is mainly treated as a problem of the individual; day programs are treated as stand-alone units of substitute care; and the space of day programs is seen as a simple background to care. We argue that the assumptions regarding care and space have narrowed the field of research and contributed to the production of equivocal findings. We suggest alternative framings of notions of care and space, informed by a Science and Technology Studies’ approach to care practices, to generate knowledge about day programs that can usefully inform policy and practice. ItemSeeing the collective: family arrangements for care at home for older people with dementia(2018) Ceci, Christine; Symonds-Brown, Holly; Purkis, Mary EllenWith the predicted growth in the number of people with dementia living at home across the globe, the need for home-based care is expected to increase. As such, it will be primarily family carers who will provide this crucial support to family members. Designing appropriate support for family carers is thus essential to minimise risks to their health, to prevent premature institutionalisation or poor care for persons with dementia, as well as to sustain the effective functioning of health and social care systems. To date, the high volume of research related to care at home and acknowledged low impact of interventions suggests that a re-examination of the nature of care at home, and how we come to know about it, is necessary if we are to advance strategies that will contribute to better outcomes for families. This paper describes findings from an ethnographic study that was designed to support an analysis of the complexity and materiality of family care arrangements – that is, the significance of the actual physical, technological and institutional elements shaping care-giving situations. In this paper, we describe the arrangements made by one family to show the necessary collectivity of these arrangements, and the consequences of the formal care system's failure to respond to these.