Life at Home for People with a Dementia by Ruth Bartlett Tula Brannelly

Author:Ruth Bartlett, Tula Brannelly [Ruth Bartlett, Tula Brannelly]
Language: eng
Format: epub
Tags: Social Science, Social Work, Medical, Nursing Home Care, Nursing, Gerontology, Sociology, General
ISBN: 9781351619691
Google: RV0zDwAAQBAJ
Publisher: Routledge
Published: 2018-06-14T03:38:48+00:00

PART TWO

Towards social justice

5

ETHICS AND CARE FOR PEOPLE WITH A DEMENTIA AT HOME

Introduction

In this chapter, we provide an overview of the ethical dimensions of care at home for a person with a dementia from the literature in this field. We have selected three contested matters because they are of interest to the dementia community. For example, our discussant for this chapter, Philippa, brought to our attention the relevance and ethics of genetic testing. Philippa’s thoughts are presented in the boxed text throughout the chapter. Truth telling is contested with a critical consideration of how this may impact on the relationships between people with a dementia and others, and how an acceptance of deception positions people with a dementia as passive and lacking citizenship. Difficult situations can arise whereby people with a dementia and their carers find themselves in situations where violence and aggression are present. Current responses include trying to baffle the person by hiding doors or adding locks that mean people are unable to leave or using CCTV and alarms to alert the carer when someone leaves the house. Carers are left alone to cope, often with emergency services their only backup. Finally, dementia is increasingly described as familial or hereditary. Now, open access direct to consumer predictive testing is available over the internet. Typically, consumers pay for the test kit, provide a saliva sample and a prediction is given for the likelihood of developing Alzheimer’s disease, or other forms of dementia in the future. This new form of prediction operates outside of services and therefore comes without support, counter to best practice in this area. Predictive testing has been available for Fronto-temporal Lobe dementia (otherwise known as Pick’s disease) and Huntington’s Chorea for some time, and best practice includes a support package pre and post testing and recognition of the implications of a positive test both on the individual but also for other broader considerations, such as the availability of life insurance.

Following on from the discussions of these three topics, we turn to ethical guidance for dementia and look at the ways in which people with a dementia may remain participative. As the progress of dementia may mean that people are able to have a less direct say over their care, the ways in which their voices may be carried through the care process are explored. To build on this, we present the Nuffield ethical framework and introduce the integrity of care. Part of the ethics of care is to consider how helpful that would be to shape practices and guide interventions. The potential for transforming current approaches are discussed.

Home as a political space

Every day around the world, care occurs. It happens for children to become adults, for disabled people to live out their lives and for older people to have their needs met and it occurs, mostly, in the home. Much of the care for people with a dementia happens in their own homes, so it is no surprise that there are associated challenges to giving and receiving care.

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