Liz Charalambous is a nurse and PhD student. She tweets at @lizcharalambou and is a regular guest blogger for the BGS. Here she reviews ‘NOT Forgotten Lives: Felixstowe 2017’ edited by Julia Jones and Bertie Wheen
‘NOT Forgotten Lives’ is a written record, produced for the 2017 Felixstowe Book Festival, which celebrates the lives of older people living locally in residential accommodation. This slim volume is organised by an overview of what life story work is about, followed by photographs and accounts of the life stories of residents living in nursing and residential accommodation in Felixstowe. It concludes with a personal reflection from the co-editor, Bertie Wheen.
Why is this book important?
In a world where dementia is on the increase there are political, economic, ethical and often personal reasons why society must wake up to the reality of the disease. Currently an estimated 50 million people worldwide live with dementia, with a forecast of 131.5 million by 2050. In the UK there are 850,000 people living with the disease, estimated to increase to 2 million by 2050. These figures alone suggest that dementia is a disease which can no longer be ignored. There are calls for global action to increase the coverage of healthcare for people with dementia, and for it to be continuous, holistic and integrated. There is a groundswell of local initiatives with grassroots movements advocating a local approach, and an urgent need for increased public involvement at all levels of healthcare, especially the involvement of people who are directly affected by the disease, to help shape services.
In the absence of a cure, there is also a growing realisation that seemingly small ‘one to one’ personalised and bespoke interactions which value the person with dementia can be of enormous benefit and improve their quality of life. ‘NOT Forgotten Lives’ springs from this ideology. As memory, relationships, and contexts change, life stories offer an escape from the very often Kafkaesque and twilight world of old age. When a person is unable to find themselves they will rely on others to do so to ensure they remain rooted as themselves.
What can be learnt from this book?
In an era of frightening and upsetting ‘bad news stories’ which use negative terminology to describe and determine those with dementia, ‘NOT Forgotten Lives’ exemplifies a changing tide in dementia care. Instead of conforming to the perceived expectations of a shaming and judgemental society which seeks to hide dementia away through the old fashioned practice of mass ‘warehousing’ of people with nothing to do but become bored and alone in poorly resourced facilities, many are seeking to celebrate and value the lives of older people with dementia. An army of ambassadors of change, friendship and positivity are emerging and joining together to promote the positives of lives well lived, using empowering, optimistic and constructive terminology and language, and taking steps to challenge stigma.
‘NOT Forgotten Lives’ is part of this change and serves to remind us that the lives of older people and those living with dementia should not be forgotten, but a realisation that we must remain curious about the lives of those we love. One poignant account in the book illustrates this perfectly when looking through photograph albums. Many of them were unlabelled because ‘at the time you think you’ll never forget who that is or where that was…’
As such, ‘NOT Forgotten Lives’ is a reminder of the importance of crystallising in time the experiences that life brings, and what makes us who we are. It is also a reminder for us to recognise the limitations and failures of the medical model of healthcare. A reminder that this medical model, important as a means to an end but not an end in itself, should make way for a social model of healthcare and allow us to discover what is important in life.
‘NOT Forgotten Lives’ is not merely an account of lives once lived, but a lesson for anyone involved in the care of others. It echoes of the ideology underpinning the ‘This is me’ tool widely used in healthcare. The tool acknowledges the person being cared for as an individual, sentient, with likes, dislikes, preferences, and peccadillos. It helps us to care for others in a holistic way, and puts a person at the heart of patient centred care.
As a nurse caring for older people in acute hospital wards I have always appreciated families who bring in photographs of their loved ones. However much I believe in my person centred approach, these photographs and personal stories always help me to care for people in a much better, more holistic way. How privileged we are as healthcare professionals to hear the most intimate and personal of details, and to be trusted with this information to help make a person’s experience in hospital that little bit more bearable.
This local initiative has wider lessons for us all. It is not ‘just’ a celebration of lives lived, which is of course important, but a valuable lesson and timely reminder for people of all ages, that life should be celebrated and every single minute is precious.
NOT Forgotten Lives: Felixstowe 2017 is now available through Golden Duck Publishing http://golden-duck.co.uk/home/not-forgotten-lives-felixstowe-2017.html
A lovely review – thank you. It was a privilege to work with some of the carers whose stories feature and to help them find different ways of connecting with their loved ones. Full marks to Julia and Bertie for pulling al the stories together into an inspiring and useful book.