Second thoughts about dementia 2: HE WHO HESITATES IS LOST

I’ve written recently about some of the communication challenges of Huntington’s disease. Here is another. My encounters with a Huntington’s patient frequently went like this:

Doctor: 'How are you?’

Patient: [no response]

Doctor: 'Did you come on the bus?’

Patient: 'Not bad’

Doctor: 'Is your swallowing ok?’

Patient: 'No, my daughter brought me’

In such conversations I did not imagine that language had been in some way dammed up, as it sometimes seems to be following a stroke. One can sense the frustration of a stroke survivor who knows what she wants to say but can’t say it. In Huntington’s, by contrast, it is other people who get impatient, while the affected individual often seems unconcerned. Huntingtonian slowness is not of language, or of speech formation, but of thought. In medical terminology slowness of thinking is bradyphrenia, which adds a touch of Greek dignity to the problem (brady- , slow and phren- , mind) and at the same time acknowledges that this is a distinct impairment rather than a sign of general cognitive failure. It is entirely possible to be slow but sharp.

Timing is crucial to human connection. The slightest lapse between lip movements and speech, for example, makes a video difficult to watch. Our motor skills each have their characteristic time signatures, as every tennis player knows. The image above shows that handwriting becomes strangely distorted when you try to produce it bit by bit, slowly. The same constraints apply to gestures and also to speech acts. If you plan to dig someone playfully in the ribs, for example, you must act rapidly or not at all. The spontaneity of human dialogue is soon lost if it is slowed down, as sometimes happens across a mobile phone network, or during a broadcast relay. The conversational thread gets more and more tangled with each pause, and jokes fall flat because a punchline will not be funny if it is held back for even a moment. Everyone feels frustrated when responses seem hesitant, and there is a strong urge to disconnect. The instinct to disengage is often provoked, in my experience, by the silences and mistimed responses of someone with Huntington’s. We long to give up, and we excuse ourselves with the idea that it must be impossible to talk meaningfully with a person who 'has’ dementia.

If we are aware of the effects of conversational slowing we are more likely to attend to the other person’s pace. Two people must always adapt to each other in dialogue, of course, but there are situations where we need to take a brain as well as a person into account. An inspired American nurse called Jim Pollard [i], who has been a close observer of Huntington’s for many years, gives some useful tips in his booklet, 'Hurry Up and Wait’ [ii]. At times, the brain masks the person. Your half-speed signature seems deceptively child-like, as does the slowed-down speech- production of cerebral palsy and multiple sclerosis.

The most fundamental requirement in a relationship is curiosity, which is all too easily extinguished by a label such as Huntington’s. During the 1920s epidemic of encephalitis lethargica, patients stood or sat for hours in statuesque silence (see my paper 'On Doing Nothing’ [iii]) and bradyphrenia was said to be one reason for this. At the time, the flamboyant neurologist and psychoanalyst Smith Ely Jelliffe quoted the pre-socratic philosopher Protagoras, who wrote that 'it is only when we do not act at all that we are able to live our own private life apart, and to differ utterly from all others’ [iv]. However difficult it might have been to penetrate the inscrutable silence of a person with a Huntington’s, I was always intrigued by a sense that something was there for me to understand.

References

[i] See https://vimeo.com/270056128

[ii] Hurry Up and Wait: http://www.lulu.com/gb/en/shop/james-pollard/hurry-up-and-wait/paperback/product-3610588.html

[iii] Ward CD. On doing nothing: descriptions of sleep, fatigue, and motivation in encephalitis lethargica. Movement Disorders, 2011; 26: 599-604.

[iv] Dialogues of Protagoras. See F. C. W. Schiller, Studies in Humanism, Macmillan 1907 p 319

Why would you want anyone to read what you’ve written?

I like writing, as perhaps you do, and sometimes I stop caring about whether anyone’s ever going to read my stuff. But if you put your heart and soul into baking a cake then you hope someone’s going to eat it. Same with a book. Please do eat one of mine, or at least some of it, and tell me what you think.

Second thoughts about dementia 1: THE BODY SPEAKS

The Body Speaks

Chris Ward - February 7, 2020

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One of my challenges as a specialist physician was Huntington’s disease. To give you a picture, imagine 'Diane' [i] slumped in a wheelchair, stirred into speaking by something her husband has said about their 7 year old son, Will. Diane’s strong feelings are obvious but what she wants to say is not, because her speech is unclear and her body’s jerking movements make the wheelchair shudder. Huntington’s is a genetic condition and there is a one-in-two chance that Will will eventually develop problems like his mum’s. She could expect disorders of cognition and mood as well as involuntary movements, the best known of which is the irregular jerking called chorea [ii].

One of my challenges as a specialist physician was Huntington’s disease. To give you a picture, imagine 'Diane' [i] slumped in a wheelchair, stirred into speaking by something her husband has said about their 7 year old son, Will. Diane’s strong feelings are obvious but what she wants to say is not, because her speech is unclear and her body’s jerking movements make the wheelchair shudder. Huntington’s is a genetic condition and there is a one-in-two chance that Will will eventually develop problems like his mum’s. He could expect disorders of cognition and mood as well as involuntary movements, the best known of which is the irregular jerking called chorea [ii].

I want to reflect here on the patients I worked with in the hope of capturing something of their experience. What I am after is experience, not experiences: not a 'then-I-did-this’ narrative, but the mental and bodily qualities, in other words the phenomenology, of Huntington’s. Medical language has little to do with experience, as I’ve argued in a recent book [iii]. What, then, can a doctor say about his or her patient’s consciousness? Not much, but not nothing. Our bodies constrain what and how we feel, and the particular constraints of Huntington’s disease are worth thinking about. The one I will consider first is disordered movement. In subsequent pieces I reflect on two others, slowness of thinking and obsessive traits, before coming finally to the larger question of what it might be like, subjectively, to have these difficulties.

My specialist nursing colleagues and I met people like Diane in their houses, and in nursing homes, and in our clinics. The 'patient’ would often be restlessly silent, as though preoccupied with something other than our conversation, so that we often found ourselves talking around, rather than directly to, the person. I wondered then, and I still wonder, what lay behind our patients’ apparent inscrutability and what made it difficult to establish some kind of presence within their mental worlds.

I think we can be sure that people with Huntington’s have the same desire to communicate as any of us. Above is a sample from a journal (I feel able to publish them here because the person is not identifiable, 30 years have elapsed, and there was nothing secret about them at the time). The lower is several months after the upper page. Over this period, the person’s efforts to communicate seem to be outstripping the capacity to write. The journal shows the effect of abnormal movements on handwriting, which might give us a picture of a faulty TV in which 'noise’ (jerkiness) interferes with a 'signal’ (thoughts).

This simple model has been rejected by theorists of human communication and says little about the conversational efforts of someone affected by Huntington’s, where noise frequently evolves into a signal. The ghost of some meaningful expression often flits across the person’s face, sometimes fading but at other times becomes unmistakeably expressive, and a movement of the head or of the arm may either subside or else turn into a recognisable gesture, all of which makes it difficult to separate the means of communication from the message. Facial grimaces, head-nodding, shoulder shrugs and movements of the spine can be part of anyone’s communicative repertoire. In Huntington’s, similar movements are hallmarks of brain dysfunction. Should we, for that reason, dismiss them as meaningless?

The body speaks to me, and also through me. A cough is a symptom but also an utterance. It tells everyone I have a cold, it suggests that I am someone to avoid (chorea has the same effect, socially), and it can also be a conversational gambit, transmitting private messages such as 'Stop talking about that!’. In communicating with each other we use pathologies such as coughing together with facial expressions, bodily postures and limb movements, and we also resort to whatever images or objects the environment happens to contain (the floor, say; or a spoon; or a part of the body). Together, these are among the affordances of communication. I learned to use the word affordance in this way from James Gibson, a psychologist who studied perception and action [iv]. We can only expect to understand someone with Huntington’s if we attend carefully to the person’s affordances. It is difficult to notice what someone is trying to say when the body’s involuntary movements and awkward postures are interpreted purely as signs of disease, or when a lack of verbal fluency is interpreted simply as dementia. Effective communication requires imagination, patience and, above all, curiosity about that person’s experiences, ideas and feelings.

Dementia, if we want to call it that, can expose affordances that were not available to the person before the onset of symptoms. Some of the modes of expression that people with Huntington’s resort to have a tragi-comic dimension. One angry man used a mower to write c*** on the lawn. He had his reasons.

Notes

[i] 'Diane' and other characters I mention here are not identifiable individuals, but nothing in their stories is invented.

[ii] For some of the physical challenges of Huntington’s, and more, see: https://www.youtube.com/watch?v=U4BSZ4FlGRg&feature=youtu.be.

[iii] See Between Sickness and Health. The Landscape pf Illness and Wellness. Routledge, 2020. .

[iv] Gibson, JJ. The Ecological Approach to Visual Perception. Houghton Mifflin, 1979.