From research papers, blogs and articles to plays, poems and literature: the Created Out of Mind team share what they have been reading to better inform their practice and increase their understanding around what it means to live with a dementia.
A Look Inside Alzheimer's (by Marjorie N Allen, Susan Dublin RN, and Patricia j Kimmerly)
Shared by a member of a Rare Dementia Support PCA Support Group
This book was written by the wife of a man that had Alzheimer's, a nurse who has Posterior Cortical Atrophy (PCA), and her friend who also has younger onset dementia. The book is not just written from the view point of someone with Alzheimer's, but has input from family and friends, who discuss the impact on their lives as well.
Where memories go: why dementia changes everything (by Sally Magnusson)
Shared by Seb Crutch, Director of Created Out of Mind
"This is an account of the author and broadcaster’s experiences of loving and caring for her mother Mamie, herself a renowned journalist. Written to reflect the continuing conversations, both spoken and unspoken, between mother and daughter, the book is littered with phrases which elegantly capture the experiences, challenges, tensions and responses to living with dementia:
‘Many of our most entertaining moments are rooted…in your persistent attempts to build a present reality around fragments of remembrance’
‘I think back to that conversation now and I want to laugh and cry and congratulate you all over again. You were working out a narrative that made sense of innumerable misdirected visual and memory signals and it was an inspired one’
‘I realise now it was never as simple as that. You had not miraculously returned either to full mental vigour or to what we routinely thought of now as your old self. Rather, the gradual ‘pulling apart’ of your selfhood was serving you well as a coping mechanism. It blunted the sharpest edges of reality and tamed those parts of the imagination that make hope a struggle. Cold medical fact, the grasp of atrocious odds, the imagining of what might so easily come next: these are what make a person despair. Dementia dooms you to an eternal present, but there are some situations where the present is a better place to be.’ "
Forget Memory: Creating Better Lives for People with Dementia (by Anne Davis Basting)
Shared by Julian West, Core team member and Head of Open Academy, Royal Academy of Music.
"I have found this book very inspiring and it has hugely informed my approach to making music with people living with dementia.
This cultural critique of dementia care offers a vision for how we can change the way we think about and care for people living with dementia. Basting discusses our fear of dementia and memory loss, and how the two are not necessarily linked. She discusses the nature of memory itself (“memory is not a camera aimed at the past”), and argues that it is our fear and dread of losing our memory that make the experience of the condition worse that it needs to be. In her own words, “Dementia is hard, but it needn’t be this hard.” Through a series of case studies, she explores the ways in which the arts can enable us all to connect and communicate with each other."
The Hand, an Organ of the Mind (edited by Zdravko Radman)
Shared by Charlie Harrison, Artist at Created Out of Mind.
"Thoughts are manifested also as movements." (Radman, Beforehand, xxii)
"I'm reading this book to get a better idea of the connections between hand and mind. One of the things I'm particularly interested in with the Single Yellow Lines project is that participants seem to give away their creative insights almost unconsciously. In this way, painting, drawing and gestures act as a method, similar to collecting physiological information. Even in the first few pages of the book I've come across relevant thoughts and quotes for this research:
“We use the limbs without being conscious, or at least, without any conception of the thousand parts which must conform to a single act” (Bell (1833) 1979, 13-14) (pg 3).
One of the first articles in the book talks about people who lose the ability to control and coordinate movement. It also gives an intriguing account of the development of our brains as we evolved to become 'handed' creatures; the ability to use our hands for many tasks freed up the face and mouth for more complex emotional and communicational roles.
Gesture, touch and bodily movement are also important for communication and play a key role in the relationships of people living with dementia (especially where language or other forms of communication have been lost) and I'm hoping this book will extend my knowledge of this alongside the various creative and other capacities of the hand and mind."
Beyond Forgetting: Poetry and Prose about Alzheimer’s Disease (edited by Holly Hughes, 2009)
Shared by Hannah Zeilig, Created out of Mind Collaborator and Senior research fellow at the University of the Arts, London
"This collection is written both by people living with a dementia and by carers or friends of people with a dementia. The pieces are all contextualised by their authors and help the reader imaginatively enter some of the experiences associated with living with these conditions.
I am particularly interested in exploring the ways in which people with a dementia and those who care for them articulate their experiences and use figurative language such as metaphors. This collection has provided some interesting insights. For example: the title of one poem (by someone with a dementia) ‘My mind is a cold oven’ is a novel metaphor that uses a simple domestic image to conjure a sense of mental emptiness and isolation.
In ‘The Bath’ a daughter describes her attempts to bathe her mother and the way in which this potentially contentious situation is transformed into a moment of tenderness when the daughter gets into the bath and allows her mother to wash her: ‘I turn around to thank her, catch her smiling/lips pursed, humming/still a mother with a daughter/whose back needs washing’. The reciprocity, intimacy and the constancy of the relationship that remain possible despite the mother having an advanced dementia is beautifully captured here.
Walk the Walk, Talk the Talk (by Keith Oliver)
Shared by Emma Harding, PhD Student, Dementia Research Centre, UCL
On New Year's Eve 2010, Keith Oliver was told by a doctor that he had Alzheimer's Disease. He was just 55, the head of a thriving primary school, a husband, father and grandfather, in the process of studying for an MA in Education.
Walk the Walk, Talk the Talk is the story of Keith's life before, during and since receiving his diagnosis, told not just by Keith, but by the health professionals, friends and family who know him best, and including a selection of the talks he has given to a wide variety of audiences since his diagnosis. This is a story of hope and encouragement that is both moving and inspiring.
Dance for Life Evaluation Report (findings of Dr Edana Minghella)
Shared by Barbara Stephens, Chief Executive of Dementia pathfinders
Dance for Life is a pioneering collaboration between Matthew Bourne's New Adventures & Re:Bourne and Dementia Pathfinders, aiming to bring dance into care home settings for older people living with dementia. This celebratory event launched the findings of Dr Edana Minghella's independent evaluation of the pilot year. The report is available here.
This list aims to stimulate new conversations on dementias across our collaborative networks and the public. It does not serve to endorse specific materials or research; rather it is where the Created Out of Mind community reflect on a range of materials they have found useful or interesting to their practice.