09/10/2024
We are all interrelated and interdependent. No person exists merely as one person. I am the becoming of my mother and father. Our children are an expression of ourselves. In Afrikaans, the word “vergestalt” describes how language gives meaning and makes concrete our feelings and emotions. We express ourselves through language. But what if I start to find language difficult? Does that mean that my feelings disappear?
People living with cognitive impairment often find language difficult. This means that the way that they express themselves becomes difficult. It does not mean we stop feeling if we cannot say how we feel. On the contrary, it often makes our feelings stronger. So, inside us, things would start boiling and percolating; all these feelings, emotions, and thoughts that we can no longer express are now bottled up inside. While many people communicate in non-verbal ways and often do so very well, our understanding and interpretation of their non-verbal communication lacks insight and knowledge. We all come to each other with our filters and preconceptions. It is tough to be entirely open to the message someone is trying to express, mainly when it is described nonverbally.
The result is that people living with dementia will often stop trying to communicate. Not because they are living with dementia and lose their ability to speak, but because we cannot be present enough, take the time and listen intently enough to “hear” them. The problem lies with us, not with them. Slowly, their frustrations will get the upper hand, and they will withdraw inward more and more. They will consciously cut off from the world because it becomes too hard to navigate our inability to communicate with them.
The further dilemma is that the world also then gives up, thinking that the person with dementia no longer FEELS because they no longer express their needs, desires or thoughts. There can be nothing further from the truth. And then, we stop treating people living with dementia like human beings. We let them sit in a chair for an entire day without meaningful engagement. We talk over them. We administer tasks like bathing and dressing without as much as acknowledging them, let alone asking their permission. We crush their medication into their food when they refuse to swallow it. We dehumanise them to the point where they become living dead people. Bodies. Numbers.
It is tough to bring about any change in the way that people living with dementia are treated in many residential care homes. I see a new interest in this globally, with the USA focussing on a new “Care for Our Seniors” act being proposed as a step towards transformation. Sadly, the focus (in my opinion) is again off the mark. Unless we start with the rights of the people for whom we propose to care, no quality indicators, workforce development, or structural changes will make a difference. Yes, employees need to be paid more. However, a pay increase will not improve care. The fanciest building in the world will not create a life worth living. The best standards and oversight of such standards will not change the hearts and minds of those who care for the vulnerable.
It is only when we get to the point where we truly understand the ecobiopscychosocialspiritual complexity of our being-in-the-world that we start seeing change. From the inside out, not the other way around. Andries Baart’s https://www.andriesbaart.nl/presentie/ brings us to the essence of care. We need to shift our focus away from the concrete towards a more holistic approach, which is genuinely ethical https://ethicsofcare.org/becoming-a-care-ethical-institution/ These are tough questions we need to ask ourselves. They require that we become very still, look deep inside, and build a bridge of empathy towards a greater understanding of the vulnerability and precarity of life in general. Only then will we truly see the person behind the disease and begin to connect on a more spiritual level, honouring the Soul of the person living with dementia and those who work with them.
Somehow, I think my suggestions will mostly go unheeded. We want to write policies, create standards, and police people. I will not give up.
The vice chancellor of North-West University (NWU), Optentia Research Focus Area, in South Africa invited prof. Baart during his last visit (Feb.-March 2020) to deliver an academic lecture about the … Continue reading Becoming a care ethical institution →
