Lying in dementia care: An example of a culture that deceives in people's best interests

Elvish, Ruth; James, Ian A.; Milne, Derek

doi:10.1080/13607861003587610

Cited by 50 publications

(57 citation statements)

References 11 publications

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“…While researchers have highlighted the issue of duplicity in caregiving and the kinds of ethical dilemmas it can create (see Blum, 1994; Elvish, James & Milne, 2010; Strech, Mertz, Knüppel, Neitzke, & Schmidhuber, 2013), the current study identifies the turning point in the social process of care when family members began using duplicitous techniques. The evidence shows that they began using these techniques (identified herein as restrictive unilateral autonomy management techniques) as a self-conscious strategy when the elder’s awareness ability was thought to have declined severely enough to make transparent negotiation difficult.…”

Section: Discussionmentioning

confidence: 93%

How family members manage risk around functional decline: The autonomy management process in households facing dementia

Berry

Apesoa-Varano

Gomez

2015

Social Science & Medicine

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Most dementia research investigates the social context of declining ability through studies of decision-making around medical treatment and end-of-life care. This study seeks to fill an important gap in research about how family members manage the risks of functional decline at home. Drawing on three waves of retrospective interviewing in 2012–2014, it investigates how family members in US households manage decline in an affected individual’s natural range of daily activities over time. The findings show that early on in the study period affected individuals were perceived to have awareness of their decline and routinely drew on family members for support. Support transformed when family members detected that the individual’s deficit awareness had diminished, creating a corresponding increase in risk of self-harm around everyday activities. With a loss of confidence in the individual’s ability to regulate his or her own activities to avoid these risks, family members employed unilateral practices to manage the individual’s autonomy around his or her activity involvements. These practices typically involved various deceits and ruses to discourage elders from engaging in activities perceived as potentially dangerous. The study concludes by discussing the implications that the social context of interpretive work around awareness and risk plays an important role in how families perceive an elder’s functional ability and manage his or her activity involvements.

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Section: Discussionmentioning

confidence: 93%

How family members manage risk around functional decline: The autonomy management process in households facing dementia

Berry

Apesoa-Varano

Gomez

2015

Social Science & Medicine

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“…Some authors contend that lying is morally distinct from deception (Benn, 2001;Jackson, 2001), whereas others argue that both acts in clinical practice are ethically akin, because they are both a deliberate abuse of power and an "affront" to patient dignity (Bakhurst, 1992). Whatever the terminology used, empirical studies demonstrate that decision-making about honest communication is a common issue faced by professionals caring for patients with dementia (Day, James, Meyer & Lee, 2011;Elvish, James & Milne, 2010;James, Wood-Mitchell, Waterworth, Mackenzie & Cunningham, 2006;Tuckett, 2012).…”

Section: Introductionmentioning

confidence: 99%

Why is dementia different? Medical students' views about deceiving people with dementia

Tullo¹,

Lee²,

Robinson³

et al. 2014

Aging & Mental Health

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“…As regards our immediate interests, for example, current evidence suggests that lying and deception are common practice in the care of people with dementia, albeit often well intended to prevent distress to the person with dementia. For example, Elvish, James, and Milne () found that 97% of people in paid care for people with dementia lied for various reasons. These included protecting the person from distress, for example to avoid retelling them of the death of a loved one, or to encourage them to do something that would avoid potential harm at a later stage, such as keeping a chiropodist appointment.…”

Section: Selfhood Truth and Deception In The Context Of Dementiamentioning

confidence: 99%

Digital technologies as truth‐bearers in health care

2016

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In this paper, we explore the idea of digital technologies as truth-bearers in health care and argue that devices like SenseCam, which facilitate reflection and memory recall, have a potentially vital role in healthcare situations when questions of veracity are at stake (e.g., when best interest decisions are being made). We discuss the role of digital technologies as truth-bearers in the context of nursing people with dementia, as this is one area of health care in which the topic of truth-telling has been hotly debated. People with dementia have been excluded from research studies and decisions that affect their lives because they are not regarded as truth-bearers-that is, as being capable of giving truthful accounts of their experiences. Also, considerable research has focused on the ethics of lying to and deceiving people with dementia. Given their increasing prominence in healthcare settings, there has been surprisingly little discussion of what role digital technologies might play in relation to these questions of truth and deception. Drawing on theories from science and technology studies (STS), we explore their possible future role in some of the truth-making processes of health care. In particular, we discuss the potential value of constraints on use of SenseCam to support the accounts of people with dementia as part of their care.

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Lying in dementia care: An example of a culture that deceives in people's best interests

Abstract: This study contributes to a more informed understanding regarding both the definition and use of lies. On the whole, participants developed a less generic perspective about lying, becoming more supportive of lies when used in specific situations in the best interests of the recipients.

Cited by 50 publications

References 11 publications

How family members manage risk around functional decline: The autonomy management process in households facing dementia

How family members manage risk around functional decline: The autonomy management process in households facing dementia

Why is dementia different? Medical students' views about deceiving people with dementia

Digital technologies as truth‐bearers in health care

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