Harvey’s reaction to his dementia is not what you might expect. “I’m so happy,” he says. “I wouldn’t reverse it for anything.”
Harvey has a relatively rare dementia called posterior cortical atrophy or PCA, a variant of Alzheimer’s disease. Inasmuch as he has difficulty remembering things and can’t do basic arithmetic, his condition conforms to the stereotype of dementia. But PCA particularly affects spatial awareness: it can lead to disorientation, visual illusions, and problems with making your movements coincide with your perception of space. Harvey has trouble with vests; another person with PCA recounts how, aiming to sit in an empty seat, he found himself instead in his vicar’s lap. But for Harvey, who is 78, these are just inconveniences in a wonderful life. He has never, he says, felt so full of love for his wife, Diana, who confirms that his expressions of affection are much more frequent now than before his PCA developed.
Harvey and Diana might be considered the lucky ones. Plenty of people with PCA, and their families and carers, have grimmer stories to tell. But there are many cases that challenge the widespread perception of dementia as a condition to be dreaded. The stereotype of an elderly loved one sitting blankly in a care home, unable to speak or recognise relatives, is not all there is to it. And changing this public perception of dementia is one of the prime objectives of a £1m, two-year project called Created Out of Mind .
Music for Life 360 uses machine learning to analyse interactions between musicians and people with dementia
Supported by the Wellcome Trust and housed in its Hub space at the top of the Wellcome Collection on Euston Road in London, Created Out of Mind is the brainchild of Sebastian Crutch, a neuropsychologist in the Dementia Research Centre of University College London. As well as challenging stereotypes about what it means to live with dementia, the project aims to develop better tools for assessing the value of using arts with people who have these conditions. All too often, such efforts are perceived as “giving them something to do”, or perhaps as utilitarian therapies for sustaining cognitive skills. But if the real personal enrichment of the arts often comes “in the moment”, why should it be any different for people with dementia? And such activities can reveal a creativity obscured by impairment of an individual’s resources for regular communication.
When Crutch asked me to join the research team, I gladly accepted the opportunity to learn more about a condition that will affect most of us in our lifetime – if not as a patient then as a carer or relative. My own experience of having to gently assure my grandmother that she was still living in the house she had occupied since before I was born, and not in some unfamiliar care home where all her knick-knacks had been arranged in a simulacrum of her house, is representative of experiences most of us have had, or will have.
Alzheimer’s disease is the most familiar form of dementia, but it accounts for only about one case in three, and itself has many variants with specific symptoms. There is a galaxy of other dementias, generally diagnosed from their cognitive symptoms and perhaps brain scanning. Other neurodegenerative conditions such as Parkinson’s disease can also progress to dementia. And not all forms of dementia happen in old age – some can appear in people still in their 30s.
Neither are they all about loss of memory. It may be precisely because we are used to the experience of forgetting things like names or where we left our keys that we read the appearance of dementia as forgetfulness. But sometimes the mental disruptions that look superficially like memory loss are actually operating in a more puzzling way. Asked if she can recognise photos of famous faces – Tony Blair, Bill Clinton, Terry Wogan – one person with PCA in a video Crutch shows me can name none of them. But it’s not so much that she doesn’t recognise the face; she struggles to see it as a face. “That’s the face there, isn’t it?” she asks hesitantly as she looks at Wogan.
It’s not a lack of recognition – the patient could say perfectly well who Blair or Wogan is. Her situation seems to be akin to that experience of seeing an image or an object, perhaps when we’re tired, and being momentarily unable to decode its content: is that a face, or the folds in an item of clothing? We can see clearly enough but can’t parse the shapes and shadows. “For a person with PCA, much of the world is of that ilk,” says Crutch.
What’s lost here are not facts, but ways to interpret the world. Some forms of dementia can affect how we label concepts, or our ability to retrieve those linguistic tags. Crutch shows me clinical videos of two people with primary progressive aphasia (PPA), which affects such aspects of semantic processing. One man speaks haltingly, slurring his words, sometimes getting the syllables wrong. The sentences are perfectly coherent but are produced with great difficulty. There’s no impediment to the way his mouth moves, but he’s struggling to connect words to the appropriate sounds. This man, says Crutch, carried a card he could show to explain why he was articulating in this way – otherwise people might think he was drunk.
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