Wednesday, 4 November 2015

Dementia in Fiction

A few months ago, I was given a copy of Unbecoming by Jenny Downham for review (still not read it. DON'T JUDGE ME!!! [For those curious, Unbecoming is out now and published by DFB in hardback]). I read a few pages and it made me think about dementia and my understanding of dementia. I realised that I know very little about it and I wanted to learn more. 

Luckily for me, I was chatting to Hayley from ED Public Relations and she knew a few people who could help. And even better, we had Faradane from Dementia UK who found time to send me the following gets blog post and managed to get Dr Karen Harrison Dening to share some thoughts about dementia in fiction. 

So, before I can it over, I must thank Dr Karen, Faradane and Hayley for making this guest blog post possible. And if you want to know more, you can go to Dementia UK's website ( or visit them on their Twitter (@DementiaUK). 

What is dementia?
Dementia is a broad umbrella term given to several conditions (syndromes) which describe brain damage that causes long term and often gradual decline in an individual’s ability to think and remember; to the degree that it affects their daily functioning. Symptoms may include problems with memory, concentration, problem-solving, mood, behaviour, communication, and perception. Dementia is a progressive condition, which means the symptoms will gradually get worse.
There are a number of forms of dementia with over 128 causes. Alzheimer’s and Vascular dementia are the two most common types of dementia.
Alzheimer’s: The most common form of dementia (about two-thirds of cases). It is thought that brain cells are damaged due to protein and abnormal ‘tangles’, leading to failure of the brains transport system. The cause is not yet fully understood.
Vascular dementia: is the second most common dementia. It can be caused if the brain is damaged due to the failure of its oxygen blood supply (the vascular system). This can be due to a stroke, or a series of small strokes over a period of time. Strokes are caused when the flow of blood is disrupted, for example by a clot, leading to the cell being starved of oxygen and dying. Strokes do not always lead to vascular dementia, but they increase the likelihood.
Dementia in under-65yrs of age is called young onset dementia. The condition often has a significant effect on a person’s family as they are often still income earners and have responsibility for children. It is important families seek specialist advice and support.
Every person with dementia is an individual. Everyone presents in a different way and everyone needs different sorts of interventions, but generally what people need is somebody that is a specialist who is able to work with them and their family to help them to live positively with dementia.
Dementia UK is the only UK charity to offer specialist one-to-one support and expert advice for people living with dementia. Our Admiral Nurses work hand in hand with families, helping them cope with the fear, uncertainty and difficult everyday reality of dementia.

Dementia in fiction
There is a growing body of fiction that has dementia as its focus.  Many portray the devastation the disease may impose through behaviours of the person with dementia perhaps giving a very negative perception of what it might be like. Alongside this, we are also seeing a growing body of first person accounts of what it’s really like to have dementia and these often give us a sense of the retention of positivity despite a diagnosis of dementia. However, dementia does not just affect the person with diagnosis but the whole family and can create wide ‘ripples’.
Families are very individual; my own is likely to be totally different in its membership, culture and how it interacts with the world than the next person’s. Of interest to me as a professional are the dynamics of any given family and especially, when a member is diagnosed with dementia, how that family is affected and adapts (or not) to this.  
Downham, in her novel ‘Unbecoming’, has given us an account of a family’s adaptation to the diagnosis of Alzheimer’s disease in the grandmother, Mary. The narrative is largely from the perspective of Katie, a teenage girl, who is struggling with her own identity and sexuality. Katie develops a strong, and intuitive, caring bond with Mary who has come into her life only recently following a crisis. Mary’s long time partner died and this leads to Mary being admitted to hospital.  This is not too far from the truth as often when a carer of a person with dementia is ill or dies the ‘default’ position is to admit the person with dementia to hospital or institutional care. In Mary’s case it results in her moving to live with her estranged daughter, Caroline.  We see the past history of the family unfold and gain an understanding of the title of the book; Mary’s behaviour as a young woman being seen as ‘unbecoming’ and feckless and the reason for her giving her daughter away to be cared for by her sister and also the effect of dementia in unravelling the person – unbecoming.
This novel wonderfully captures the notion of relationships within families and helps us to see each as an individual yet also as part of a bigger whole.  Much of the early research on caring in dementia focused on its negative and burdensome nature, however, more recently attention has been paid to the positive aspects of caring. Downham’s story is life affirming and heart warming and shows us that families can be united and reunited following a diagnosis of dementia. In the end the family ‘become’ and it is dementia that brings that about.
Dr Karen Harrison Dening, Director of Admiral Nursing, Dementia UK

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