Abstract
Related events, like buses, sometimes come in threes. At the time of writing, the United Kingdom was marking dementia awareness week, my university was hosting an inaugural lecture on the theme of mindfulness and the Wellcome Collection organised a debate on moral distress in nursing. Three disparate but, I suggest, connected events.
It is estimated that 46 million people globally experience dementia. 1 Dementia awareness week 2 brings much needed attention to the experience of people with dementia and of their families, friends and caregivers. Dementia awareness week causes all of us to reflect on the care and support needed to live as well as possible with dementia. It also prompts us to spare a thought for the many wonderful people who provide care to those with dementia – both family members and those who have made care their career.
Not all career caregivers feel they have the resources they need to do their job as well as they would like. Some feel that they have to cut corners as they deliver care and that they do not have the time necessary to make a person with dementia comfortable and to educate and reassure family members. Some of these caregivers will experience moral distress as they feel unable to do the right thing. This is a well researched area and, as a recent Wellcome Collection debate in London demonstrated, a contentious topic. Some have argued that focusing on moral distress disempowers nurses and caregivers, making them victims 3 and incapable of finding solutions.
The inaugural lecture was given by Ruby Wax, one of the new visiting professors at the University of Surrey. The theme was ‘The Art of Failing’. 4 The audience was moved and amused by Professor Wax’s honesty and humour relating to her own fallibility and learning through many interesting life experiences. A focus of her talk was the role and helpfulness of mindfulness. The panel discussion that followed the inaugural lecture addressed questions such as: Is mindfulness the new wonder drug? How can people make time for it given the frenetic lives we lead? And might it be used by organisations to placate workers who are already overworked and undervalued?
There was agreement that mindfulness is no panacea. However, it has an important role in enabling people to make time and space for themselves, to slow down and to practise self-compassion. Most will agree that mindfulness would be an ideal strategy for busy caregivers who work in challenging situations. We need to be cautious, however, that it isn’t used disingenuously by employers who wish to placate overworked and undervalued caregivers. It does sometimes seem that when the concept ‘resilience’ is used by managers they are aiming to encourage caregivers to do more and more with less and less.
Moral resilience is what should be aspired to so that caregivers can adhere to their ethical values no matter what the organisational challenges. Moral resilience will require that they are not rendered passive or placated and that they will act on their moral distress and actively advocate for care recipients and families – including those who experience dementia – raising and escalating concerns as necessary.
By the time this Editorial is published, we will be attending the 17th International Nursing Ethics Conference and Second International Ethics in Care Conference at the University of Sao Paulo, Ribeirao Preto College of Nursing. The theme of the conference is ‘Ethics and Human Rights in Health and Social Care’. We will also have our Editorial Board meeting prior to the conference. We very much look forward to meeting with and learning from conference delegates at our first conference in South America.
The Editorial Board of Nursing Ethics, the Advisory Group of the International Care Ethics (ICE) Observatory and the conference organisers wish those of you who can attend a very productive and enjoyable conference with many opportunities for engagement with colleagues from different parts of the world. For those of you unable to attend this year, we hope to see you at next year’s conference in Leuven, Belgium.