End of life and dementia

eol

End of life conversations can be challenging. That said,  it is unlikely that most of us don’t have some firm ideas of how we would like to conclude a life lived.

This post looks at a variety of considerations and discussions around this very important topic.


Dementia Australia resources

palliative care and dementia _ daPalliative care and dementia : Paper 43 (2018)
This Dementia Australia discussion paper provides guidance for health professionals on palliative and end-of-life care for people with dementia and those who support them.

Download paper

 

Start2Talk has been developed by Dementia Australia and our partners to help all Australians start the conversations involved in planning ahead.

 


making tough decisionsMaking Tough Decisions about End-of-Life Care in dementia  by Anne Kenny (2018)

In Making Tough Decisions about End-of-Life Care in Dementia, Dr. Anne Kenny, a skilled palliative care physician, describes how to navigate the difficult journey of late-stage dementia with sensitivity, compassion, and common sense. Combining her personal experience caring for a mother with dementia with her medical expertise in both dementia and end-of-life care, Dr. Kenny helps the reader prepare for a family member’s death while managing their own emotional health.

Drawing on stories of families that Dr. Kenny has worked with to illustrate common issues, concerns, and situations that occurs in late-stage dementia, this book includes practical advice about

• making life-altering decisions while preparing for a loved one’s inevitable death
• medical care, pain, insomnia, medication, and eating
• caring for the caregiver
• having conversations about difficult topics with other family members and with health care, legal, and financial professionals

Available from the Dementia Australia library in hard copy or Ebook


Ted talk: How my dad’s dementia changed my idea of death (and life)

Beth Malone (2017)

With warmth and grace, Beth Malone tells the deeply personal story of her dad’s struggle with frontotemporal lobe dementia, and how it changed how she thinks about death (and life). A moving talk about a daughter’s love — and of letting go and finding peace.

 


end of life careEnd of life care for people with dementia : a person-centred approach  /  Murna Downs, Laura Middleton-Green, Jane Chatterjee and Sarah Russell.  (2017)

This book describes not only what can be done to ensure maximum quality of life for those in the final stages of the illness, but also how best to support those involved in caring for them. Emphasising the importance of being attuned to the experiences and needs of the person with dementia, the authors explain why and how they should be included in decisions relating to their end of life care. Practical strategies for ensuring physical and emotional wellbeing are provided, drawing on useful examples from practice and providing solutions to potential challenges that carers and family members will face. Dilemmas surrounding end of life care are explored in detail, including the moral dilemma of medical intervention, and the authors suggest ways of supporting family members through the process in terms of providing information, helping them adjust to change and loss, and involving them in their relative’s care, and at how care staff can be supported through appropriate education and training, team building and information-giving.

Available from the Dementia Australia library in hard copy or Ebook


death talkerThe death talker : what we need to know to help us talk about death  /  Molly Carlile  (2016)

Since the dawn of time, human beings have been curious about death. Most of us have little time in our busy lives to think about the things that are important to us. Often, it s not until we have a personal experience that we give any serious thought to our own life and our mortality.

The Death Talker offers a common sense approach to the issues we should all be thinking about so we can live and die well. The personal stories and practical information provide a sensitive guide for exploring the stuff that matters to each of us and to help us have meaningful conversations with the people we love.

Molly Carlile AM has over twenty years experience as a specialist palliative care nurse, grief and bereavement counsellor and educator. More recently she has held senior executive roles in both palliative care and acute health, currently as Chief Executive Officer of a large metropolitan, community palliative care service.

Available from the Dementia Australia library


being mortalBeing mortal  /  Atul Gawande  (2014)

Medicine has triumphed in modern times, transforming the dangers of childbirth, injury, and disease from harrowing to manageable. But when it comes to the inescapable realities of aging and death, what medicine can do often runs counter to what it should.

Through eye-opening research and gripping stories of his own patients and family, Gawande reveals the suffering this dynamic has produced. Nursing homes, devoted above all to safety, battle with residents over the food they are allowed to eat and the choices they are allowed to make. Doctors, uncomfortable discussing patients’ anxieties about death, fall back on false hopes and treatments that are actually shortening lives instead of improving them.

In his bestselling books, Atul Gawande, a practicing surgeon, has fearlessly revealed the struggles of his profession. Now he examines its ultimate limitations and failures-in his own practices as well as others’-as life draws to a close. Riveting, honest, and humane, Being Mortal shows how the ultimate goal is not a good death but a good life-all the way to the very end.

Available from the Dementia Australia library in hard copy or Ebook


good life to the end.jpgA Good Life to the End Taking control of our inevitable journey through ageing and death  / Ken Hillman (2017)

A huge majority of people at the end of their lives want to die at home, but only a small number manage to do this. This vital book asks why.

Professor Ken Hillman has worked in intensive care since its inception. But he is appalled by the way the ICU has become a place where the frail, soon-to-die and dying are given unnecessary operations and life-prolonging treatments without their wishes being taken into account.

A Good Life to the End will embolden and equip us to ask about the options that doctors in hospital should offer us but mostly don’t. It lets us know that there are other, gentler options for patients and their loved ones that can be much more sympathetic to the final wishes of most people facing the end of their lives.

Available from the Dementia Australia library in hard copy or Ebook


Website : Dying to talk – Palliative Care Australia
Dying to Talk aims to reach into the community to normalise dying in Australia and to help Australians work out what’s right for them at the end of their lives. Having a conversation with your loved ones about your end-of-life wishes will help them to make decisions on your behalf should you be unable to communicate your wishes. The Dying to Talk Discussion Starter guides you through talking with your loved ones.

http://dyingtotalk.org.au/


when breath becomes air.jpgWhen breath becomes air  /  Paul Kalanithi  (2016)
When Breath Becomes Air chronicles Kalanithi’s transformation from a medical student asking what makes a virtuous and meaningful life into a neurosurgeon working in the core of human identity – the brain – and finally into a patient and a new father.What makes life worth living in the face of death? What do you do when when life is catastrophically interrupted? What does it mean to have a child as your own life fades away?Paul Kalanithi died while working on this profoundly moving book, yet his words live on as a guide to us all. When Breath Becomes Air is a life-affirming reflection on facing our mortality and on the relationship between doctor and patient, from a gifted writer who became both.

Available from the Dementia Australia library in hard copy or Audio book 


2013 post    End of life planning and care for people with dementia

 

2018 LIBRARY digital footer


Ministering to people with dementia

This post describes our resources on ministering to people with dementia. Should you be interested in any of these resources, you can request them using this handy form.

JDCJulyAug2004Article: Spirituality, religion and faith in dementia care by Malcolm Goldsmith, Journal of Dementia Care 12(4), 2004

Despite the many definitions of ‘spirituality’, there is an increasingly united sense of its importance in dementia care. Malcolm Goldsmith reflects on what religious and spiritual ideas have to offer, and on relations between churches and people with dementia.

Note: should you be interested in this article please request it through our handy form.

spirituality and ageingBook: Spirituality and Ageing edited by Albert Jewell, 1999

This book presents the experience of ageing as an opportunity for spiritual reflection and affirmation of life. The contributors are religious and spiritual leaders and ethical thinkers from a range of different backgrounds. They define ‘spirituality’ not just as a religious concept but as the fulfillment of the universal human need for purpose, values and relationships – a sense of wholeness in life. This spiritual dimension helps people face the emotional and psychological challenges of growing older, such as memory loss, dementia, bereavement and fear of death. Existing systems of social care often focus on the material and physical needs of older people; this collection proposes that the spiritual needs for older people are as vital a consideration for their welfare. Through their spirituality, older people can attain a fuller appreciation and understanding of life, which can also inform and enrich the lives of others. Spirituality and Ageing will be an invaluable resource for carers looking for a holistic and more reflective approach to work with other people.

guideministeringalzheimerspatienBook: Guide to Ministering to Alzheimer’s Patients and Their Families, Pat Otwell, 2007

Guide to Ministering to Alzheimer’s Patients and Their Families examines the importance of spirituality in dealing with the everyday challenges of this mysterious disease. Not a “how-to” manual with step-by-step instructions or tried and true formulas, this unique book instead examines the essential elements of ministering to dementia patients based on first-hand accounts of family members living through pain and uncertainty. The book explores the nature and stages of Alzheimer’s: the desire to minister; theological understanding; grief and guilt; communicating with Alzheimer’s patients; spiritual needs and implications for spiritual care; ethical issues and the role of ministry in decision-making; models for ministry; faith, hope, and love; blessings; and resources. This book is designed for all who desire to minister to those affected by Alzheimer’s – especially pastors, priests, chaplains, pastoral counselors, church leaders, healthcare professionals, and seminary students.

JDCMayJune2003Article: Holding a religious service for people with dementia by Patricia Higgins, Journal of Dementia Care 11(3), May/June 2003

Patricia Higgins looks at how holding a religious ceremony can enrich life and well-being for people with dementia.

Note: should you be interested in this article please request it through our handy form.

ministeringpeoplewdementiaGuide: Ministering to people with dementia: a pastoral guide, Catholic Health Australia, 2008

inistering to People with Dementia: A Pastoral Guide , produced by Catholic Health Australia in cooperation with Alzheimer’s Australia is a practical handbook for the spiritual care of people with dementia. The Guide has been written expressly for those working in parish settings to assist in the provision of spiritual care of parishioners with dementia both at home and in residential care within the local community.

inastrangelandBook: In a strange land… : people with dementia and the local church : a guide and encouragement for ministry, Malcolm Goldsmith, 2004

About one person in twenty over the age of sixty-five and about one in five over the age of eighty have dementia. These people will have spouses, partners, children, relatives and friends. It is likely therefore that just about every church congregation and community will have a number of people affected, directly or indirectly, by dementia.

    • How do clergy and lay leaders, members of the congregation and others understand, relate to and support these people?
    • What happens to the faith of people with dementia? How do their carers cope with faith issues?
    • What happens when people move into residential or nursing homes or into hospital? What forms of ministry are appropriate?

This book, written by someone who has spent many years as a parish priest is full of reflections and suggestions. It is an attempt to guide and encourage people in this important but often neglected area of ministry.

Spirituality the heart of nursingBook: Spirituality : the heart of nursing edited by Professor Susan Ronaldson, foreword by Professor Mary Bailey, 1997

People in many cultures have long been aware of themselves as having a spirit as well as body and as being influenced by spiritual energies and spiritual presences.

Nurses know that something exists beyond the day-to-day care of people. Nurses are with people in time of crisis, when the mind turns to thoughts of what exists beyond. When a nurse can help someone to confront issues of doubt and belief, the sense of fulfillment explains why nurses do what they do.

This is a book to pick up and delve into. The chapters are written by experienced nurses in a style and language that is easy to understand. Here you will find knowledge and ideas that may help you make your own spiritual journey as well as helping people in your care to make theirs.

Spirituality:The Heart of Nursing is written by Australia nurses, from their own experience, for the benefit of other nurses. The message of the book is that nurses are special people conscious that our spiritual well-being is just as important as our physical health.