Second thoughts about dementia 2: MEANINGS OF PERSISTENCE

I wrote this piece for a blog called dementia day to day

Ivan lived on his own [1]. He was unsteady on his feet, and scarcely able to care for himself despite a large amount of outside help. His isolation made him vulnerable but whenever we met him at home he seemed complacently, if not blissfully, unconcerned about the situation. On the other hand his mother, who was constantly appearing on his doorstep, was deeply alarmed, and so were we. Our anxieties came to a head when people in the town reported seeing Ivan staggering home from the convenience store with more packs of lager than anyone could safely carry, let alone a man with the swaying gait of Huntington’s disease. Ivan wasn’t eating enough, could scarcely feed himself, and shouldn’t logically have been subsisting on alcohol. Then there was an extraordinary change. Whether this was due to his mother’s persuasive efforts we never knew, but Ivan switched quite abruptly. Instead of lager, he started hoarding similar quantities of Coca Cola. The last time I visited him he was reclining on his couch, looking a little neglected and yet somehow content. The living room and the kitchen were lined with enough 2-litre bottles of Cola to last a lifetime.   

Many of the people we met tormented their families (and us) in similar ways. One man, David, would disappear for hours on end, determinedly walking through the streets, often well into the night. A woman called Maeve heard that fish oil could stave off the effects of Huntington’s on the brain. When we visited her we found cans of sardines stacked in every corner, and every drawer was full of them. 

Opinions differ about the best psychiatric description for people like Ivan, David and Maeve. Medical authorities are currently saying that Huntington’s produces OCD – obsession-compulsion disorder. An obsession is an idea that you can’t shake off and that makes you feel compelled to act in a certain way. But how can we distinguish obsession as a brain disorder from the urge to have a drink on a hot day? If you feel the desire to walk the streets all night, or to stockpile sardines, has something gone wrong with  your brain? A possible answer to this question is that an obsession is pathological when it is unwanted.   Perhaps, as biologically-minded neurologists and psychiatrists imagine, a brain lesion is sending an uninvited push-notification into consciousness, carrying a message such as ‘sardines’. This is roughly what happens when certain kinds of epilepsy generate strange sensations and thoughts. Dreaming, delirium and psychosis might be thought of in a similar way. Patients with various diagnoses have demonstrated that damage to the frontal lobes of the brain can produce feelings of compulsion [2]. Among the adolescents diagnosed with OCD that I have worked with, many did seem to want to be rid of their compulsions as though they might have sprung up in their brains, unbidden. Some people with Huntington’s appear to have an OCD-like awareness that their compulsions are bad for them. I remember a woman – call her Ella - who began to alienate her children because she brushed their hair at least daily in an obsessional hunt for nits. She knew that this was hurting her family.  

However, obsession-like thoughts and compulsion-like behaviours are not always unwanted, and nor need they always be seen as meaningless biological events. When they arise from a background of anxiety their meaning can sometimes be traced. As I observed in adolescents diagnosed with OCD, ritualistic behaviour is a strategy – although often a self-defeating one - to exert control in a dangerous world. The same might be true in Huntington’s. It is  possible that Ella fixed on hygiene as a desperate expression of care for her children, so that at some level perhaps her routines were not imposed, or not entirely imposed,  on her. As for Ivan, Maeve and David, I could just about conceive of their having chosen to do what they were doing. None of them appeared to be anxious, and while their habits were troublesome to others, they themselves were unconcerned. The transportation, storage and consumption of lager, and then of Coca Cola, had become part of Ivan’s raison d’être, just as canned sardines were part of Maeve’s. There was more than a grain of logic in Maeve’s determination to eat more fish, and quite possibly the actions of Ivan or of Dave made some sort of sense, at least to themselves.

Rituals and obsessions are part of the materials for a life with Huntington’s. They are affordances, channels through which actions and purposes must flow,  just as choreic movements are affordances for communication. In medical language they are disorders of behaviour, but they are cut from the same neurological cloth as admirable qualities such as determination and perseverance. Calling them behaviours has a distancing, depersonalising effect. A worried parent or an exasperated teacher or a frustrated clinician might puzzle over your ‘behaviour’,  but  would you ever  use that word about  yourself? Clinical language is not a good way to describe the feelings and purposes of someone lumbering home with a crate of coke or a stack of sardines.

References and further reading

[1] Ivan and the other characters I mention here are not identifiable individuals, but nothing in their stories is invented.

[2] See Ward, CD. Transient feelings of compulsion. Journal of Neurology, Neurosurgery and Psychiatry, 1988; 51: 266‑268