The fact that anything can happen to anyone at any time is important in research too

When an eminent professor in law in East London once advised me that no experience in life every really goes to waste, I’m not sure I believed him then. I’d just been through what I perceived as a dreadful time, a coma due to meningitis. And yet, eight years later from this, I agree with my late father: that coma was in a strange way possibly the best thing that ever happened to me.

It might be understating the situation, somewhat, to mention that the shootings in Tunisia also serve to underlie the frailty of life. I’ve known the nastiest of events to happen unpredictably to the apparently nicest of people.

Amazingly as long as three decades ago, “The Unbearable Lightness of Being” (Czech: Nesnesitelná lehkost bytí) was published as a 1984 novel by Milan Kundera. It concerned two women, two men, a dog and their lives in the Prague Spring period of Czechoslovak history in 1968.

The novel is said to be the counterpoint to Friedrich Nietzsche’s concept of eternal recurrence – this is the idea that the universe and its events have already occurred, and will recur ad infinitum. Kundera’s story offers the alternative: that each person has only one life to live and that which occurs in life occurs only once and never again – thus the “lightness” of being.

In one of her most recent blogposts, Kate Swaffer movingly talks about the changing of her musical knowledge, and how a turning point had been not being able to perceive the difference between Mahler and Mozart. This blogpost reinforced for me how fundamental a person’s unique identity is to his or her own reaction to dementia. In Kate’s case, Kate had a “deep knowledge” previously of the genres.

It’s reminiscent of how how medics should be mindful of reaction to physical disease: for example, the onset of rheumatoid arthritis in the little fingers of your dominant hand will have a different effect, possibly, to a virtuoso pianist than to a plumber.

Kate’s experience was very upsetting to Kate, as she reports. This, I can’t help feeling, is not helped by people in research, myself included, who often say that ‘musical perception is very often preserved in people living with dementia’. One is forced to think what the worth of the term ‘very often’ is, if it is you who notices a big change in musical perception?

I genuinely dislike the term ‘stages of dementia’. I’m not the only one – the Chair of the European Persons with Dementia, Helga Rohra, dislikes the term. And yet yesterday I found a factsheet on ‘the stages of dementia’ on one of the national societies for dementia.

The term ‘stages’ implies finality – that once you’ve completed stage 2, you go onto stage 3, and never to return again. I wonder if medics try to over-emphasise ‘once only’ events, and that changes are over interpreted as losses. For example, a change in cognition might be defined legally at some stage for a person living with dementia as a ‘loss of capacity’ if certain conditions are met.

Kate calls her own experience a loss:

“I am deeply saddened by the loss of my memory of music, and whilst I still enjoy listening, especially to classical and jazz, I no longer can recall who or what I’m listening to.”

This perceived idea of ‘loss’ I think is a fundamental threat to living better.

The medical profession, I am sure not intending to be nasty, operate in a world of loss or deficits, which they attempt to ameliorate with drugs. An alternative view, say the social model of disability, takes as its frame of reference “assets” or “strengths”, which always means identifying what a person can do.

Kate’s experience, also, serves as a stark warning that researchers can get it massively wrong.

The statement that “music is very often preserved in living with dementia” does not necessarily signify anything in a change of musical perception in a certain somebody living with dementia. Likewise, I’ve read reports of studies of social skills, such as sarcasm being ‘lost’ in certain types of dementia. I’ve personally known to be sarcasm to be very definitely ‘preserved’ in such individuals living with dementia.

Does this mean research is worthless? Not at all – it just means that not all the findings relate to all people at all times. Working out why certain people buck the trend is an useful exercise in itself, sometimes. It presents a practical difficulty: in that we are encouraged to see the ‘ME’ in dementia, and yet commissioners of health and social care services prefer to deal in ‘hard evidence’, of ‘cost neutrality’ and ‘improvements in wellbeing’ for the population as a whole.

Whether the events in dementia are truly ‘losses’ or ‘once only’ is indeed significant to how one reacts to them. The fact, however, that anything can happen to anyone at any time also has more than a single meaning: it means that we are all living on a cliff-edge when it comes to the frailty of life, or it means we should not be that hurt in ourselves if unexpected things happen, as they will.



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