Dementia and Human Rights by Cahill Suzanne

Author:Cahill, Suzanne [Cahill, Suzanne]
Language: eng
Format: epub
Tags: Social Science, Gerontology
ISBN: 9781447331384
Google: lQZpDwAAQBAJ
Publisher: Policy Press
Published: 2018-03-28T04:32:09+00:00

Supporting a cognitively impaired person with their personal care needs, including assisting a person to dress, shower, bath, eat and toilet, is an extremely intimate and private matter (Baker, 2015), and the provision of this type of personal support must be done in a way that is not degrading or inhuman, and is respectful of the person's dignity (Nuffield Council on Bioethics, 2009). Knowing the right amount of support to offer requires skill, knowledge, sensitivity, judgement, time and occasionally, positive risk-taking. It may be easier for busy staff to take over completely, doing everything for the individual rather than enabling that person to slowly undertake parts of their own routines by themselves (Brooker and Latham, 2016). By denying the individual opportunities to undertake even minor aspects of their own personal care, such as buttoning cardigans/shirts or tying shoe laces, or by adopting the role of decision-making in every aspect of the individual's life (Parker and Penhale, 1998; O'Connor and Purves, 2009), staff may inadvertently deskill and disempower the resident (Woods, 1999).

Freedom to choose and exercise control over decision-making are important aspects of quality of life for the individual living with a dementia in a care home (Dröes et al, 2006; Crespo et al, 2011; Moyle et al, 2011; O'Rourke et al, 2015). Yet, autonomy (see Chapter Three for a definition) in the context of dementia still tends to be regarded by many as an all-or-nothing concept, and some individuals, because of dementia, are at risk of having all their autonomy rights restricted or removed (Boyle, 2008; O'Connor and Purves, 2009). In this context, the concept of relational autonomy as espoused by the Nuffield Council on Bioethics (2009) (see Chapter Three) is very helpful. This is where autonomy is no longer understood as the ability to make and communicate rational decisions but rather, it is seen in a broader sense to reflect the individual's sense of self and that person's capacity to value one thing over another and express their preferences (Nuffield Council on Bioethics, 2009). Adopting this more nuanced approach to understanding autonomy has much potential to promote a person's quality of life in long-term care.

In terms of personal care, supporting a person to toilet independently may be challenging for care staff, particularly if the individual resists assistance and reacts aggressively, believing that their privacy and personal space is being intruded (Woods, 2001). It is not unusual for some older people to be designated as incontinent and given incontinence pads simply because they can no longer walk independently or because the system of care cannot adapt to their complex needs (Alzheimer Europe, 2012). A colleague whose mother had dementia and who recently died in a nursing home discussed with me the fact that her mother was compelled to wear incontinence pads, even though her main health problem was immobility and not incontinence. Commenting on a particular incident that occurred when she requested urgent assistance for her mother but was ignored, she said:

I think the crux of it is that Mum

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