We’re living longer and are healthier with it than ever before in history: medical science is moving so fast that even a few years can change the face of treatment to an unrecognisable degree, and what was once the worst news imaginable to patients and their loved ones may now simply be unpleasant and highly inconvenient. Think back to the HIV terror of the 1980s, and how it’s now usually just a chronic condition requiring daily medication, not having to affect lifestyle or life expectancy. Epilepsy, 30 years ago, was a devastating blow that seriously curtailed daily activities, and can now be kept under control with pills. Even early-stage cancer need not be a death sentence: survival rates for breast cancer in the western world are now above 90%.
But longer lives come at a price; at least, for now. And among the highest and most harrowing prices is Alzheimer’s, a neurodegenerative condition that needs little introduction and, although not exclusive to the upper-middle aged and elderly, the risk increases the longer we stay alive.
Spain’s 1.2 million Alzheimer’s patients mean five million residents affected
Seven in 10 dementia cases are caused by Alzheimer’s, which can strike at almost any age, even the 90s.
Exact numbers of sufferers in Spain are unclear; depending upon which set of statistics you read, there could be anything from 700,000 to 1.2 million residents or even more in the country right now with the condition. The Spanish Alzheimer’s Confederation (CEAFA), one of the main charities focused on the disease, cites the upper figure, but recalls that the true number affected is actually around five million: it is often argued that family and close friends, especially when they are the carers, suffer at least as much as the actual patient.
Heartbreaking: It’s not just forgetfulness
The distress of a treasured relative or friend not recognising you is difficult enough, but Alzheimer’s goes beyond mere forgetfulness; patients frequently go through depression, anxiety, terror, confusion and can become aggressive, tearful, suicidal and even physically violent. From the initial signs of repeating oneself, scrapping around for words for everyday objects, becoming disoriented outside of one’s habitual setting (or even within it), losing things or putting them in ‘strange’ places, the condition eventually wipes out decision-making ability, leading to agonisingly tough choices about what to have for dinner or to watch on TV; total confusion when faced with complex explanations, conversations having to be limited to a few words at a time to avoid befuddling the patient, inability to accurately judge risk, and even colour-blindness and difficulty in assessing distances, heights and widths as spatial skills diminish. In later-stage patients, some of the most heartbreaking symptoms for loved ones involve the extreme mistrust, aggression and violence towards them as the Alzheimer’s sufferer reverts to more primitive means of expression due to frustration, loss of emotional and social control, and struggling to get her point across.
Young Spanish programmer offers hope
Enter Spanish applications developer David Vidal Andrés who, at just 27, may have just saved the sanity and prevented the anguish suffered by the tens of millions indirectly affected by Alzheimer’s around the globe: he has created the world’s first-ever ‘Alzheimer’s translator’.
Backed by the care company Ciudum, the application ‘Purple’, described as a ‘kind translator for Alzheimer’s patients and carers’, acts as an ‘interpreter’ of sufferers’ insults and attacks and ‘rewords’ them into something family and friends can understand and empathise with.
Where Alzheimer’s delusions, hallucinations and paranoia lead to, for example, a mother demanding to know who her daughter is and what she is doing in her house, the ‘Purple’ device translates the mother’s feelings, explaining that she knows the daughter is someone important but that her illness prevents her recalling exactly who.
The programme acts in a similar way to Google Translate and can be used online or via the ‘OK, Google’ app, typing in what the patient says to you and reading what he or she really means.
What they’re really thinking
For example: “My mother accuses me of stealing her money,” what she really means, according to the translator, is “If my illness has stolen my memories from me, it’s normal to expect everything else I own to be stolen from me too, isn’t it?”
Spouses of sufferers often report distressing accusations of ‘having affairs’, even with no evidence whatsoever. Asking the translator, they’ll see that what this actually means is: “I value truth greatly, but I sometimes imagine things that haven’t happened. My only truth right now is that I love you.” And if the patient says she hates you, the translator reveals she’s really saying: “My illness conditions me and I say things I’d never say if I didn’t have it; but actually, I really love you.”
Many report parents or grandparents telling them they wish they’d ‘never had them’, but again, the translator explains that it’s the illness, not the person, speaking, that they don’t really think this, they thank them for being there and being patient, and they do still love them.
Even though the translator can’t reflect your relative’s exact pre-Alzheimer’s words, the comfort in seeing what they would normally be thinking can induce an immediate calming, consoling influence on carers, helping them stop, reflect and realise their loved one is still the same person, only that his or her brain isn’t coothe perating.
Among symptom lists for Alzheimer’s, ‘personality change’ is often cited. But this isn’t really the case: the sufferer’s personality doesn’t change, only his or her interpretation of or reaction to situations. And it’s always the illness interpreting or reacting, never the ‘real’ person.
They’re not platitudes. We really do understand
Cuidum helped David develop ‘Purple’ drawing on its experience as professional carers, so you can take comfort from the fact you’re not seeing on-screen platitudes, but genuine ‘mediation’ between you and your loved one provided by people who really know what’s going on in both your heads.
At present, ‘Purple’ can only ‘do’ Spanish and it is still being developed to add more words and phrases, but this blueprint (or ‘purpleprint’) could become multi-lingual in the near future.