From ‘not a big deal’ to ‘hellish’: Experiences of older people with dementia

Hulko, Wendy

doi:10.1016/j.jaging.2007.11.002

Cited by 95 publications

(95 citation statements)

References 51 publications

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“…Some people in the early stages are even quite indifferent towards it (Steeman, Godderis, Grypdonck, De Bal, & Dierckx de Casterle, 2007). A small-scale qualitative study of eight older people with dementia found that the descriptions of the experience of dementia ranged from "not a big deal" to "hellish" (Hulko, 2009). …”

Section: Perceptions Of People With Dementia Themselvesmentioning

confidence: 99%

Ethical implications of the perception and portrayal of dementia

2016

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The way we perceive and portray dementia has implications for how we act towards people with dementia and how we address the issue of dementia within society. As a multi-disciplinary working group, established within the framework of the European Dementia Ethics Network of Alzheimer Europe, we aimed to describe the different ways that people with dementia are perceived and portrayed within society and to consider the moral implications of this. In the current paper, we address perceptions of dementia as reflected in explanatory models of its cause and nature, descriptions of characteristics of people with dementia, the use of language, media portrayals and the views of people living with dementia. Academics and professionals could use this exploration to reflect on their behaviour and their use of language regarding people with dementia. About perceptions and the portrayal of dementiaPeople make sense of dementia through the meanings and explanations they give to their personal observations, knowledge, beliefs, expectations and experiences, and through direct and indirect interaction with other people. The meanings and explanations we construct reflect complex processes of attending to some factors while disregarding others (Schacter, 2011). Hence, certain characteristics and ways of making sense of dementia become emphasised whilst others are given little or no attention. The way we perceive and portray dementia has implications for how we act towards people with dementia and how we address the issue of dementia within society, for example, in terms of care, treatment, social inclusion and human rights. As such, our perceptions and portrayals of dementia affect the lives of people with dementia. Since perceptions and portrayals prompt and/or permit actions that may be beneficial or harmful for people living with dementia, we

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Section: Perceptions Of People With Dementia Themselvesmentioning

confidence: 99%

Ethical implications of the perception and portrayal of dementia

2016

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“…The extent to which accounts of the experience of dementia might be constrained within negative discourses and also subject to factors such as privilege and marginalization has recently begun to be examined (e.g. Hulko, 2009). …”

Section: Introductionmentioning

confidence: 99%

Living positively with dementia: a systematic review and synthesis of the qualitative literature

Wolverson

Clarke

Moniz-Cook

2015

Aging & Mental Health

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“…As Cassey (2005) notes, this is often because the representation of mental illness in film is angled to suit the needs of the plot and producers (i.e., the market) and melodramatic, sensationalist, or emotionally manipulative representations are more profitable than those that strive for more 'authenticity. ' Research by Hulko (2009) has shown that negative views of dementia on the part of people with a diagnosis are by no means as frequent as has been generally assumed. Such undramatic findings are, however, unlikely to provide a box office draw, or high TV audience ratings.…”

Section: Problematizing Representations Of People With Dementia In Mamentioning

confidence: 99%