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Perspectives on the Person with Dementia and Family Caregiving in Ireland

Suzanne Cahill

This book is all about dementia in Ireland and what has and has not been happening in a country where dementia has been a taboo topic for so long. In particular it examines the dementia landscape since late 2014, following the launch of Ireland’s first National Dementia Strategy. A lot has happened in Ireland since that time but a lot more needs to happen for people to live well with dementia and have their human rights upheld. There are an estimated 55,000 Irish people living with dementia and these figures are set to triple by 2050. Although topics explored in the book,such as obtaining a diagnosis, accessing home care services and moving from home into a nursing home relate to Ireland, they are discussed against the backdrop of policy, practice and research developments in dementia in other parts of the world. In this way the book provides the reader with a wealth of information including research evidence, best practice guidelines and international expertise. The book has been dedicated to Mnánah Éireann, in recognition of the hard physical and emotional work, caregivers,mostly women do behind closed doors. Throughout the book, an appeal is made for more state support to be given to these formal and informal caregivers.

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CHAPTER 6 Personhood, autonomy, capacity and decision-making

Extract

Introduction

In this chapter attention returns to the person living with dementia and to what informal and formal caregivers, family members and friends can do to promote that person’s personhood, independence, autonomy and dignity and help the individual enjoy a good quality of life. Several misunderstandings about dementia prevail in society and there is a tendency for the public to regard all dementias as the same and sometimes to consider a diagnosis as a death sentence, when in fact there is huge diversity in presentations of dementia and in how people experience their symptoms. There is also much diversity in the degree of severity experienced in cognitive impairments and in the behaviour, actions, mood, abilities and disabilities of people diagnosed (Taylor, 2008). Indeed day-by-day, minute by minute, the individual’s subjective experience and behaviour is liable to fluctuate.

We live in a hyper-cognitive world where an undue emphasis is often placed on smart thinking, rationality and economic productivity (Post, 2000; Hughes, 2014). A person whose mind is no longer razor-sharp may be made to feel inferior by others and may be marginalized, ridiculed, dismissed and excluded from mainstream society (Mental Health Foundation, 2016). A nihilist discourse of tragedy doom and gloom about dementia can also prevail (George, 2010; Gilmour and Brannelly, 2010; Gove et al., 2015). Ageism is rife in society and dementia is often equated with old age and with end-stage Alzheimer’s disease. The latter is seen primarily as a terminal illness or fatal with no...

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