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1 – 10 of 16Beatrice Godwin and Fiona Poland
The purpose of this paper is to examine the self-experience of people with moderate to advanced dementia. While people with dementia are widely assumed to lose their sense of…
Abstract
Purpose
The purpose of this paper is to examine the self-experience of people with moderate to advanced dementia. While people with dementia are widely assumed to lose their sense of self, emotions are preserved long into dementia and some can still discuss their lives, enabling exploration of respondents’ own self-conceptualisation of experience.
Design/methodology/approach
Ten people, purposively sampled, living in long-term residential or nursing care. A mixed methods design with Interpretative Phenomenological Analysis approach used semi-structured empathetic interviews to explore their experience and continuing goals, using supplementary information from family and others to contextualise core data. Data analysis identified emerging themes and superordinate concepts.
Findings
Sustained well-being and resistant ill-being emerged as major themes. Findings demonstrated continuity in sense of self, moral awareness and diversity of emotional reactions to living with dementia, associated with their emotional capital.
Research limitations/implications
The sample was small and limited to well- and moderately funded care homes. How to provide such support in less-well-funded homes needs further research as do reasons for resistant ill-being in advanced dementia.
Practical implications
Findings suggest care provision for people with advanced dementia which acknowledges individual feelings may support their sustained well-being. Psychological assessments should take closer account of multiple factors in individuals’ situations, including their emotional capital.
Social implications
Findings suggest everyday care of people with advanced dementia, may sustain their sense of self, well-being and emotional capital.
Originality/value
By empathically facilitating in-depth expression of individuals’ feelings and views, this research illuminates the personal self-experience of advanced dementia, hitherto little explored.
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Keywords
Government guidelines promote service user consultation without providing extensive advice on people in later dementia. “Seen as too difficult to involve, they are effectively…
Abstract
Purpose
Government guidelines promote service user consultation without providing extensive advice on people in later dementia. “Seen as too difficult to involve, they are effectively excluded from […] influenc(ing) service provision”, especially institutional care residents (Clare and Cox, 2003, p. 936). This hard-to-reach group presents methodological challenges. The purpose of this paper is to explore innovative approaches, offering even those with fragmented or lost speech the opportunity to contribute to decisions about their care.
Design/methodology/approach
This specialist dementia home consultation included staff and every resident, irrespective of the level of their communication impairment. Consultation on potential colour schemes took the form of a ballot. Staff helped develop an unpatronising, person-centred approach. Visual aids supported communication, de-emphasising the spoken word and promoting inclusion.
Findings
The majority of residents appeared to express an opinion on the potential decor. Others chose a colour while not necessarily grasping the context. The approach engaged all except four.
Research limitations/implications
Even people with moderate/advanced dementia may be enabled to participate in consultation. Further research needs to refine methodology to include everyone and clarify the interpretation of results.
Practical implications
Service providers may widen their expectations of inclusivity in consultation exercises.
Originality/value
This consultation is important to researchers and practitioners because it explores ways of communicating, which avoid privileging the spoken word, revealing seldom-recognised abilities in people with moderate/advanced dementia.
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Uncertainty over ethical impact may hinder uptake of assistive technology (AT) in dementia. This study aims to examine whether AT contributes to person‐centred care, whether users…
Abstract
Purpose
Uncertainty over ethical impact may hinder uptake of assistive technology (AT) in dementia. This study aims to examine whether AT contributes to person‐centred care, whether users can participate in research and to explore ethical dilemmas with users, family and professional carers.
Design/methodology/approach
People with dementia, at home or in residential care, and carers were allocated equipment and consulted about ethics. In a small, qualitative study, data were collected using semi‐structured interviews and vignettes and content‐analysed to establish themes.
Findings
AT in person‐centred dementia care requires meticulous assessment, reliability and availability in rapidly evolving situations. Users displayed insight, logic and empathy in ethical evaluation. They disliked remote monitoring and surveillance, whereas carers were pragmatic, prioritising safety.
Research limitations/implications
This research provides further evidence that users with dementia can be included in research. It demonstrates a significant potential role for AT in dementia care, with an ethical checklist to help professionals evaluate ethical dilemmas.
Originality/value
AT potentially increases wellbeing, enabling users to remain longer at home, delaying or avoiding moves to or between homes.
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Dr. F. J. H. COUTTS'S report to the Local Government Board on an inquiry as to condensed milks, with special reference to their use as infants' foods, has been issued as No 56 of…
Abstract
Dr. F. J. H. COUTTS'S report to the Local Government Board on an inquiry as to condensed milks, with special reference to their use as infants' foods, has been issued as No 56 of the new series of reports on public health and medical subjects.