End of life and dementia

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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

 

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