'What Are We like Here?': Eliciting Experiences of People with Dementia

For the past five-and-a-half years, I have been working in nursing homes throughout Britain listening to what people with dementia say. Where permission is granted, I write it down or tape the conversation and transcribe it later. All of these texts begin as prose; some end up as poems. At this stage, they exclude my words, which in any case largely take the form of affirmations and various kinds of encouragement. I do some editing. Where there appears to me to be a main theme, I exclude what, I judge to be secondary material. It is unnecessary to inject a sense of poetry into these texts: Many people with dementia, I have found, display an unforced propensity for metaphor and simile. It is as if the condition had unlocked their imaginative powers while at the same time inhibiting the capacity for logical thought. People with dementia appear to have an urgent need to express feelings that are occasioned by the onset of the condition and that otherwise might remain destructively confined within the psyche. I shall provide a number of examples, with discussion, and conclude with a few observations on procedure. Here is a woman giving answers to her own questions: What are we like here? Well, we're too wideawake to be told what to do. What do I think of it here? Well, is better than working in the wash-house! What do people walk like that for? Well, its the way they tighten us off. How does my eye come out? Well, it's as if its going to walk through that door. Not so long ago such a piece would have been dismissed as nonsense, the proof, if proof were needed, that the speaker was mad. Yet the piece has a tight structure (supplied in this case by the speaker, not by me), and all four verses make a coherent if unconventional whole. In the first, she claims that residents on the unit know what is going on and will not be bossed around. In the second she makes a witty judgment of the establishment, comparing it with a place of traditional hard labor. The third is perhaps the most problematical, but she seems to be articulating cause and effect in relation to the care provided. In the last verse she supplies a vivid metaphor for pain. In the next poem a man is searching for his wife: I spend all my time wandering and looking for her. I'll spend all afternoon up and down the High Street and up at the Club. If it was a man you could say "Sod off! " Doesn't phone or nothing. You'd think she was an armored car People singing all the time. Damn nuisance-they're always looking back, and that's absolute murder I haven't eaten and I'm hungry. I'll go round the come; crouch down, and be a grandchild! He comes across as distressed and somewhat volatile. It is unclear whether his wife is on the unit, or comes to visit him, or is no longer alive. He clearly misses her deeply and is searching for her everywhere. His anger, especially prominent in the second verse, could be the result of frustration. His image of her as an armored car is both fanny and alarming. In the third verse he also expresses his intolerance of music, or perhaps it is just the kind of music that is played on the unit. It reminds him of the past, and his concern is with the present. He is also hungry, and in the extraordinary image "crouch down, and be a grandchild," he dramatically expresses the lengths he would go to to obtain a good meal. Or maybe he wants someone to pay attention to him and perceives that people find a child more appealing than an adult. The next piece is also occasioned by the phenomenon of "wandering. " The piece is more reflective, but here the speaker identifies the activity as purposeful but cannot detect what purpose it serves. She finds herself being drawn into it almost against her will: Take yourself back to the first nine you saw them doing it. …