Sir, – Many people if asked how they’d feel about living a life wholly dependent on others, needing to be spoon-fed, being immobilised or requiring help with bodily functions, will declare the prospect unacceptable. Stating they’d sooner die is not unusual. If you then point out that they were in exactly such a state before – for the first several years of life, in fact – they feel tricked. Most will admit they went through it and are glad they did so. While there is no deceit in this line of questioning, it’s worth considering why it feels like there is.
The version of “you” that existed prior to your gaining autonomy, reasoning, continuous memories and a sense of self, seems altogether removed from the remembered one. What indignities you then experienced cannot affect you much nor do they even feel part of your identity. This is of some relevance if one tries to contemplate a future with dementia. The version of you that will be that individual or patient is not the person you are in your prime or in your years of independence.
Outlining the issues that a blood test for dementia raises, Muiris Houston applies the logic of medical screening programmes to the matter (“Blood test for dementia represents an ethical issue”, Health, April 9th). This is in a sense logical enough. If a screening programme is to be improve outcomes, it simply has to be the case that earlier identification of the disease helps. Forewarning ought to improve life expectancy, minimise the treatment burden and preserve quality of life. There is literally no point screening for diseases simply to tell people they have them and offer nothing in the way of therapy. And yet dementia is arguably different.
There are a plethora of mid- to late-life decisions that might be profoundly influenced by being told of future dementia. Many might choose not to have children beyond a given age for fear of burdening them with care, or even to have any at all for fear of passing on the condition. Others might wish to have bigger families to distribute the same burden. Plans to continue working or to retire, live closer to towns, develop or expand businesses or pursue endeavours that may defer the condition – learning languages or musical skills – might be considered more urgent or essential. Participation in contact sports, or indeed taking part in high-risk behaviour could be influenced in either direction quite logically by such a preemptive diagnosis. Some might feel in a “carpe diem” way inclined to maximise current enjoyment, while conversely others might try every approach to delaying the condition.
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The fundamental difference though between screening for various cancers and for dementia is that the latter will, like your infancy did, place you in a scenario where you cannot make important decisions using the logic and values you now hold. Whatever about the other things we screen for, whether they are prevented, or missed by screening and then develop, you can at any point consider your options and make a choice. A preemptive diagnosis of dementia gives you the chance to make decisions in advance for a completely other manifestation of yourself, one that you probably have no desire to be but that might be oddly content in ways that are to an intact mind, literally, unthinkable. – Yours, etc,
BRIAN O’BRIEN,
Kinsale,
Co Cork.