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Influence of hope, social support, and self-esteem in early stage dementia
- Authors:
- COTTER Valerie T., et al
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 17(2), 2018, pp.214-224.
- Publisher:
- Sage
Background: People in the early stages of dementia adjust to the illness through stages of awareness, coping, and evaluation. Studies have found that hope, social support, and self-esteem facilitate coping, adjustment, and adaptation in chronic illness. Objective: The purpose of this descriptive study was to examine the relationships between hope, social support, and self-esteem in individuals with early stage dementia. Methods: Data were obtained from 53 individuals with early stage dementia. The scores on the Herth Hope Index, Social Support Questionnaire Short-Form, and the State Self-Esteem Scale were analysed using linear regression. Results: Hope was moderately associated with self-esteem (r = .49, p < .001). Hope accounted for 25% of the variance in self-esteem and was a key component in predicting self-esteem. No significant relationship was found between social support and self-esteem. Conclusion: Findings suggest that hope may be an important factor to help individuals manage potential threats to self-esteem in the experience of early stage dementia. Strategies to inspire hope and then enhance self-esteem are promising for individuals living with early stage dementia. (Edited publisher abstract)
I'm still the same person: the impact of early-stage dementia on identity
- Authors:
- CADDELL Lisa S., CLARE Linda
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 10(3), August 2011, pp.379-398.
- Publisher:
- Sage
Using a sample of 5 women and 5 men aged between 65 and 88 years who were participating in a wider study on identity in dementia, this qualitative research examined participants' perceptions of the impact of dementia on their identity. It focused on whether people with early-stage dementia felt they had changed as a person, what kind of person they thought they were, and how they thought their identity might be affected by dementia in the future. The article reports on findings from the interviews with participants, which were analysed using interpretive phenomenological analysis. Four main themes emerged from the data: I'm still the same person versus I'm different to what I used to be, I'll always stay the same versus I'm not sure what to expect, life is much the same versus it is affecting my life, and always that connection versus it's not just me (relationships with friends and family). The analysis suggested that for the most part participants felt that little had changed with respect to their identities as a whole, but most identified features of themselves that were different than they had been prior to the onset of dementia. The authors discuss the findings and their implications.
Care at home for people with dementia: as in a total institution?
- Authors:
- ASKHAM Janet, et al
- Journal article citation:
- Ageing and Society, 27(1), January 2007, pp.3-24.
- Publisher:
- Cambridge University Press
This article examines three kinds of social relationship likely to be present when people with dementia are cared for at home by relatives or friends: custodial care, an intimate relationship, and home-life. Using Goffman's three defining aspects of custodial care – routinisation, surveillance and mortification of the self – the paper examines whether these characterised the care of people with dementia at home and, if so, whether they conflicted with the intimate relationship and with home-life. The study involved sustained observations and interviews with 20 people with dementia and their carers in and around London, and qualitative analysis of the data. It was found that all three aspects of custodial care were present although not fully realised, and that they led to difficulties, many of which were associated with the concurrent pursuit of an intimate relationship and home-life. In all cases, daily life was routinised partly to help accomplish care tasks but was found monotonous, while surveillance was usual but restrictive, and prevented both the carers and those with dementia from doing things that they wished to do. Those with dementia were distressed by the denial of their former identities, such as car-driver or home-maker, and by being treated like children. Both the carers and the people with dementia had various ways of balancing custodial care, their intimate relationships and home-life, such as combining routines with other activities, evading surveillance or carrying it out by indirect means, and there were many attempts to maintain some semblance of former identities.
AWARE: exploring awareness in early stage dementia
- Authors:
- CLARE Linda, et al
- Journal article citation:
- Journal of Dementia Care, 12(2), March 2004, p.35.
- Publisher:
- Hawker
The authors explore the concept of 'awareness' in dementia. Also outlines the AWARE project, funded by the European Commission, which aims to share ideas about awareness in dementia and develop a plan for future research that includes the perspectives of people who are living with dementia.
Developing the Senses Framework to support relationship-centred care for people with advanced dementia until the end of life in care homes
- Author:
- WATSON Julie
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 18(2), 2019, pp.545-466.
- Publisher:
- Sage
People with advanced dementia living in care homes can experience social death before their physical death. Social death occurs when a person is no longer recognised as being an active agent within their relationships. A shift is required in how we perceive people with advanced dementia so that the ways they continue to be active in their relationships are noticed. Paying attention to embodied and interembodied selfhood broadens the scope and opportunities for relationships with people with advanced dementia, acting as a counter to social death. This has the potential to improve the quality of care, including end of life care, of people with advanced dementia in care homes. This study examined the role of embodied and interembodied selfhood within care-giving/care-receiving relationships in a specialist dementia care home. Empirical findings and their implications for the development of relationship-centred care and the Senses Framework in care homes are discussed. (Publisher abstract)
‘They're just who they've always been’: the intersections of dementia, community and selfhood in Scottish care homes
- Authors:
- MULLAY Steve, et al
- Journal article citation:
- Ageing and Society, 38(5), 2018, pp.1063-1082.
- Publisher:
- Cambridge University Press
Issues stemming from differences and similarities in cultural identities affect residents and workforces in care homes in Scotland, as they do across the United Kingdom. Theoretical guidance and policy drivers emphasise the importance of considering cultural diversity when planning or enacting person-centred care processes, regardless of where health or social care takes place. Nevertheless, there is a recognised worldwide dearth of research concerning the intersections of culture, dementia and long-term care. This being so, a recent research study found that inadequate understandings of issues stemming from cultural diversity could be seen to constrain person-centred care in some Scottish care homes. In addition, the study uncovered little-recognised socio-cultural phenomena which were observed to positively enhance person-centre care. This article will focus on that, and will lay out findings from the study which lead to the following broad assertion: there is a broad lack of understanding of the power, and potential utility, of shared identity and community as a bulwark against the erosion of personhood which is often associated with dementia. This article describes these findings in some detail, thereby providing fresh insights into how shared cultural identity, and the sense of community it may bring, bears upon the interactions between workers and residents with dementia in Scottish care homes. It then suggests how the school of ‘person-centred care’ may be developed through further research into these phenomena. (Edited publisher abstract)
Materialising memories: exploring the stories of people with dementia through dress
- Authors:
- BUSE Christina E., TWIGG Julia
- Journal article citation:
- Ageing and Society, 36(6), 2016, pp.1115-1135.
- Publisher:
- Cambridge University Press
In this article, the authors use clothes as a tool for exploring the life stories and narratives of people with dementia, eliciting memories through the sensory and material dimensions of dress. The article draws on an Economic and Social Research Council-funded study, ‘Dementia and Dress’, which explored everyday experiences of clothing for carers, care workers and people with dementia, using qualitative and ethnographic methods including: ‘wardrobe interviews’, observations, and visual and sensory approaches. In this analysis, the authors use three dimensions of dress as a device for exploring the experiences of people with dementia: kept clothes, as a way of retaining connections to memories and identity; discarded clothes, and their implications for understanding change and loss in relation to the ‘dementia journey’; and absent clothes, invoked through the sensory imagination, recalling images of former selves, and carrying identity forward into the context of care. The article contributes to understandings of narrative, identity and dementia, drawing attention to the potential of material objects for evoking narratives, and maintaining biographical continuity for both men and women. The paper has larger implications for understandings of ageing and care practice; as well as contributing to the wider Material Turn in gerontology, showing how cultural analyses can be applied even to frail older groups who are often excluded from such approaches. (Edited publisher abstract)
Interrogating personhood and dementia
- Authors:
- HIGGS Paul, GILLEARD Chris
- Journal article citation:
- Aging and Mental Health, 20(8), 2016, pp.773-780.
- Publisher:
- Taylor and Francis
Objectives: To interrogate the concept of personhood and its application to care practices for people with dementia. Method: The authors outline the work of Tom Kitwood on personhood and relate this to conceptualisations of personhood in metaphysics and in moral philosophy. Results: The philosophical concept of personhood has a long history. The metaphysical tradition examines the necessary and sufficient qualities that make up personhood such as agency, consciousness, identity, rationality and second-order reflexivity. Alternative viewpoints treat personhood as a matter of degree rather than as a superordinate category. Within moral philosophy personhood is treated as a moral status applicable to some or to all human beings. Conclusion: In the light of the multiple meanings attached to the term in both metaphysics and moral philosophy, personhood is a relatively unhelpful concept to act as the foundation for developing models and standards of care for people with dementia. Care, the author suggest, should concentrate less on ambiguous and somewhat abstract terms such as personhood and focus instead on supporting people's existing capabilities, while minimising the harmful consequences of their incapacities. (Edited publisher abstract)
Finding meaning in everyday life with dementia: A case study
- Author:
- ROBERTSON Jane M.
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 13(4), 2014, pp.525-543.
- Publisher:
- Sage
This paper presents a case study exploring an older woman’s perspective on the quality of her life with dementia. The case study establishes the importance of coherence across the life course in understanding how she evaluates her changed situation in the present compared to the past. The metaphoric description of moving from ‘up there’ to ‘down here’ represents the perceived struggle to maintain a sense of worth despite a marginalised social position. Being able to define self and social identity in ways that preserve a sense of social status is important to find meaning in everyday life. Finding meaning involves looking backwards to sustain continuity with the past and looking forwards to maintain momentum and keep going. A narrative framework is valuable in showing that quality of life is a dimension of meaning associated with maintaining a sense of social worth. (Publisher abstract)
“What made you choose blue?” On becoming more “awkward”
- Author:
- IPHOFEN Ron
- Journal article citation:
- Quality in Ageing and Older Adults, 15(1), 2014, pp.3-9.
- Publisher:
- Emerald
Purpose: The purpose of this paper is to offer insights into the personal experience of dealing with the progressive dementia of a close family member. Design/methodology/approach: Selected journal/diary entries over a ten-year period. Edited and anonymised. Findings: Even informed professionals with knowledge into the health and care system can struggle with the challenges of the progressive dementia of a loved one and managing the system. Research limitations/implications: One shot case study influenced by the moral and emotional proximity. Practical implications: Case studies can offer a range of diverse, if not unique, examples of the specific needs and problems faced by families that carers should take note of. Originality/value: All case studies are unique. But narrative accounts, even if episodic, can bring home-specific illustrations of good, best and problematic practices. (Publisher abstract)