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Perspectives on the Person with Dementia and Family Caregiving in Ireland

by Suzanne Cahill (Author)
Monographs XVI, 148 Pages

Summary

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.

Table Of Content

  • Cover
  • Title
  • Copyright
  • About the author
  • About the book
  • This eBook can be cited
  • Contents
  • Foreword
  • Preface
  • Acknowledgements
  • Abbreviations
  • CHAPTER 1 An introduction to dementia
  • CHAPTER 2 Models of dementia care
  • CHAPTER 3 Diagnostic and post-diagnostic services
  • CHAPTER 4 The journey to diagnosis and living with dementia: Still me
  • CHAPTER 5 Informal caregivers of people with dementia
  • CHAPTER 6 Personhood, autonomy, capacity and decision-making
  • CHAPTER 7 Long-term residential care
  • CHAPTER 8 Conclusions and future directions
  • References
  • Notes on Contributors
  • Index

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Foreword

Interest and awareness in dementia in Ireland is high, partly due to the Understand Together Awareness campaign led by the HSE – a programme broadcast on the airwaves and designed to increase understanding, but also because more and more people are affected by dementia either through a family member, friend or work colleague who has been diagnosed. People are finally talking about Alzheimer’s disease, and dementia has finally come out of the closet, so to speak.

Despite this heightened awareness many myths still prevail. Some people think that dementia is a normal part of ageing. Many have a huge fear of dementia and believe that a diagnosis is a death sentence. Others think that there is no point in obtaining a diagnosis given that there is no cure for dementia, and several believe that only older people get dementia. In this book Professor Suzanne Cahill attempts to challenge several of these myths by shedding new light on the evidence.

One of the features that make the book appealing is the author’s detailed attention to the politics of dementia care and to how these politics have helped to shape the life of the person diagnosed. Throughout the book, the history of how dementia, a condition once neglected and under-resourced in Ireland, finally started to receive political and budgetary attention, is told in a factual, easy-to-absorb way. In this way, it is the only book I know of its kind that brings together in one volume much useful information about dementia and dementia care services in the Irish context.

What is also unique about this book is the way in which boundaries are pushed and an argument is made for the importance of seeing every individual beyond the dementia. So often a person with dementia is regarded as not only having the disease but also being the disease, and in this book the person is placed at the centre stage always.

There are several chapters in the book that particularly appeal to me. One is Chapter 4 where Kathy Ryan, a person like me, who has young-onset dementia, provides a detailed and honest account of her experience ←ix | x→of getting a diagnosis and how that diagnosis has impacted on her life. Chapter 6 which addresses the important topics of decision-making, personhood, capacity, autonomy and the new Assisted Decision-Making Capacity Act is both factual and useful. This new Act is complicated and, in the chapter, its components and guiding principles are clearly outlined. It is a sad indictment of Irish society and certainly a key concern of mine that this visionary piece of legislation has still not been fully implemented.

The Irish National Dementia Strategy (2015–2020) will soon expire. This book is timely therefore, given Ireland’s ageing population, the increase in prevalence of dementia, the expected decline in the future availability of Irish family caregivers and a national dementia strategy about to come to an end with no impetus for its update or renewal. The book is all the more timely given Covid-19 and the tragic consequences the pandemic has had on the lives of many older Irish people living in nursing homes. Many of those most severely affected by the pandemic have dementia, but sadly they have remained invisible in the entire debate.

It has been a dream for me to work with Professor Suzanne Cahill since my journey through dementia first started in 2012. Her empathy and understanding of the difficulties people like those of us who have this condition experience and her passion for ensuring that our human rights are respected and upheld have been so important for many of us here in Ireland and globally. Her contribution to the field of dementia and ageing both at Trinity College and St James’s hospital where she has worked for most of the last two decades has been enormous. This book further consolidates that contribution.

Helen Rochford-Brennan

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Preface

There were several reasons behind why I wrote this book. The first is that for years, dementia and especially Alzheimer’s disease have been taboo topics in Ireland. Dementia was largely invisible in the health and social care system and hidden from most people. In short dementia was seldom talked about and rarely diagnosed. Then in 2016, the HSE launched a public awareness campaign on dementia. This campaign probably helped many family members open up a conversation about an illness once feared and often associated with guilt, shame and embarrassment. It also created a need for more information on a topic about which no comprehensive Irish book was available. Hence the rationale behind writing this book.

The second reason, which stems from the first, was my hope to bring together in one corpus the wealth of knowledge about dementia that has accumulated in Ireland over a number of decades. For at many levels and in recent times, this new knowledge has been somewhat explosive. It has also been accompanied by a change in public discourse, with a richness in thinking and insights, often led by people who themselves are living with dementia. I wanted to dig deep, collate and analyse information and make it accessible to all those affected by dementia at the coalface. I also wanted to make it accessible to the public and to all those that are very hard working in the field of dementia care in Ireland.

The third reason relates to whom this book is dedicated – Mná na h’Éireann. Dementia is clearly a gendered issue: more women than men develop dementia and many more women than men are involved in care roles, both as formal and informal caregivers. These are women whose unpaid or poorly paid work behind closed doors often goes unnoticed. They are women who need a lot more support and recognition for the wide range of health and social care services they deliver, often at enormous personal sacrifice. Therefore, throughout the chapters an appeal is made for more government support for formal and informal caregivers.

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This book is a bit of a smörgåsbord. It straddles many different areas but its key storyline, and one that I hope I have made clear, is that all of us must work hard to see the person beyond the dementia and to preserve that person’s dignity, humanity and selfhood, since how the person is regarded and treated will significantly affect their quality of life. The complexities and challenge of dementia mean that it requires multiple responses drawing on multiple frameworks and we need to work collaboratively and not in silos.

Finally, as shown throughout the chapters of this book, the dementia landscape has changed significantly and for the better in Ireland over recent years and we are now at a critical juncture. To complete this process of change, further effort is needed in these most testing of times. I hope this book will add fuel to the movement currently underway in Ireland to improve how the person with dementia is understood, supported and treated by others.

Details

Pages
XVI, 148
ISBN (PDF)
9781800791169
ISBN (ePUB)
9781800791176
ISBN (MOBI)
9781800791183
ISBN (Softcover)
9781789978513
Language
English
Publication date
2021 (March)
Published
Oxford, Bern, Berlin, Bruxelles, New York, Wien, 2021. XVI, 148 pp.

Biographical notes

Suzanne Cahill (Author)

Professor Suzanne Cahill is an Adjunct Professor of Social Work and Social Policy at Trinity College Dublin and holds an honorary professorship in Dementia Care at the CESRD in NUI Galway. She is also an affiliated Professor in Health and Welfare at the Institute of Gerontology in Jönkoping University Sweden.

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Title: Perspectives on the Person with Dementia and Family Caregiving in Ireland