We seem to become more and more fixated on scientific data and quanti able statistics. The debate around dementia is more and more about incidence and prevalence, the “stages” that people go through, the different types of dementia and the “behavioural” consequences. The language of suffering, loss, decline and fighting the monster disease is beyond frightening. It leaves Caregivers overwhelmed – just like the media coverage of mass shootings and political governmental corruption in South Africa, we feel completely exhausted just listening to the news.
The narrative around dementia, well the very word DEMENTIA itself, is alienating us from the PERSON who is living with this new reality. Their lived experience is changing, and we are constantly pulling and tugging them back into how WE think THEY should be. Somehow we nd it extremely dif cult to embrace this new reality. Tricks and therapies and decals, alarms and eventually exclusive villages are built to contain and control “these people”. We have become so sophisticated in the way that we exclude people that it has become the new norm, in fact, we all aspire to build these fake villages where “they can roam free”. (Remember when free-range chickens became a thing…?)
We must be careful of what we accept as “the norm” or “the gold standard”. Somehow we are so easily brainwashed, especially by popular and social media, to accept new “norms”. If everyone does it, it must be ok. Hell yes, if EUROPE does we must do it too. And before we know it we have become too used to an idea, we no longer question it, and slowly but surely we no longer ask questions. We just all do it…
The medicalization of ageing is the new norm. The gold standard is the institution. We can dress it up all we want, it will always be an institution. Again, yes let’s change those that we have and try to turn them into human habitats. But please let us not think that it is right to “put” people in these institutions. Ten years ago we all happily went to the zoo…today few of us would consider it. (Yes, it is a harsh comparison. Yes, that is how I feel about some institutions.)
I look at the number of volunteers at the Domestic Animal Rescue Group (DARG) in Hout Bay. People come from all over the world to help care for caged animals, stray dogs and cats. The media coverage, the self-fulfilment of being an international volunteer for animals… To nd volunteers caring for really old, vulnerable, lonely people has become a tricky business. It is just not a “sexy” thing to do. What does it say about our humanity? We scream at the so-called “savages” who overturn our dirt bins looking for food and fine people who sleep on the streets. Where are we going with our humanity?
It is time. We should not, can not accept the so-called “norms” presented to us by the masses. We need to THINK, we need to FEEL, and we need to get closer and closer to the vulnerable in our society, not move them further and further away from us to sterile exclusive settings on the outskirts of society. We need to touch, smell and embrace the old, the vulnerable and those living with different abilities until their presence amongst us is the new norm. We need to challenge the data with authentic relationships. We need to get closer to inquire about THEIR reality, feelings, thoughts, needs, wishes, and heartaches. Then, and only then will we find the answers to the challenge of an inclusive society.
The more we research at universities, the more we pontificate at conferences, the more we write data-rich journal articles (and yes I do all of these), and the more we run the risk of moving further and further away from the perceived “problem” that we are so desperately trying to “solve”.
We need to come closer, sit down, shut up, listen, take time, and be present to those who can no longer do things at our pace. Then, and only then, will we see the error of our ways and allow the True Experts to become our Teachers, teaching us about our own (lack of) humanity.