A DEMENTIA patient who kept saying that he was hungry was dismissed as confused.
Then his wife, who had been told she could not visit him in hospital at meal times, asked why there was a sign saying "nil by mouth" above his bed.
She discovered the notice had been left there from the previous patient and her husband had not eaten for days.
This is one of the heart-breaking stories collated by Professor June Andrews, director of the Dementia Services Development Centre at Stirling University.
But her publication, called Dementia: The One-Stop Guide, is not an attack on the failings of the health service. Instead it gives practical advice for those who find themselves looking after dementia sufferers.
It covers everything from delaying the symptoms, getting a diagnosis, to making a home dementia-friendly (make sure there's lots of decent light). The chapter, however, which is arguably most controversial is called "The dangers of a hospital admission and how to avoid them."
In it Professor Andrews says while hospitals are revered as the best place to make us better - the reverse is true for people who may be confused, easily disorientated and unable to express themselves clearly. In fact, she says during their hospital stay things may happen "that make them so unwell they never go home again."
She stresses the importance of relatives staying with the patient from the start. The noise and turmoil of an A&E department may make a dementia sufferer feel they have "died and gone to hell," she says. She suggests taking head phones so the patient can listen to music or other recordings.
Her book also warns hospitals often skip the cognitive (brain) test they are meant to carry out when admitting patients. She advises family members to tell staff about their disorder. "You may have to mention it a number of times, because the staff member you tell sometimes does not understand the importance of what you are saying and does not write it down or communicate it," she adds.
Once the person has got a bed, she urges people to "be a guerrilla visitor" defying waiting times rules to spend time by their side. There are tips for securing a single room, should the patient's behaviour potentially disturb other people on the ward, and tips for trying to prevent your relative being moved from bed to bed if space is runs out.
The book is peppered with true stories from patients and their carers - such as the 96-year-old mother who was so agitated because she had not received a painkiller for six days. A cycle where thirst or discomfort go without remedy, but result in behaviour changes which then trigger sedation is described.
One hospital visitor, who observed a ward full of men sleeping soundly a 6pm, is quoted as saying it did not look peaceful it looked "like a Haloperidol (sedative) party".
Asked if her words might frighten families, Professor Andrews said instead that it empowers them by giving ideas of what they can do to help.
She writes: "The main danger to look out for is your relative being given sedation to stop them expressing their pain. To be bewildered and in agony is a nightmare."
The book is being published by Profile books on Thursday priced £9.99.
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