September is Dementia Awareness Month in Australia. I have devoted many years of my very long clinical career to the care of people afflicted with dementia.
In advanced dementia, we are confronted with the bare rudiments of human existence. In Western societies we have been seduced by the philosophy of individualism, and have made a religion of autonomy as the prime ethical principle, and the most important human right.
In late dementia, the capacity for autonomous decision-making in any context is long past. What then is the purpose of continuing to live? How do we define Quality of Life as distinct from quality of care?
Our obsession with individualism, and thinking of dementia is analogous to any other illness blinds us to the glaringly obvious. Dementia is an ailment that affects a relationship. When all else is lost, what remains is the most fundamental relationship with the life partner, a close relative, a dear friend. That is the most precious asset. Those afflicted by the pathology of dementia have no desire to seek fulfilment. What gives meaning to their life is the fact that someone continues to love and need them. Quality comes from contact with that person. It is a deeply ingrained need. I have seen hundreds if not thousands of situations where there seems to be no cognitive capacity to be aware of the life partner, but it happens.
I believe that the need to form lasting relationships is a biological imperative. In evolutionary terms, and animal species capable of forming lasting relationships had a huge advantage over species that could not. A lasting relationship meant that the young would not only be borne, but would be nurtured as they developed to adulthood. The ability to form groups capable of harmonious and mutually productive relationships enabled the species to prosper and to present a united, cooperative front to adversaries. With the development of the forebrain, human beings had the capacity to perform harmonious relationships at the individual and at the societal level. These capacities included such attributes as empathy and compassion. The development of language gave us a powerful instrument for learning, reasoning, problem-solving, learning from our mistakes, and taking consequences into account when making important decisions.
Ethics, morality, and religious teaching and dogma are essentially rules for living in harmony within our relationships, societies, and beyond.
I believe that forming a lasting relationship with a life partner is the most fundamental human need, and consequently should be a human right.
The debate on same-sex marriage should be seen from this perspective. I have seen same-sex couples literally “battling with dementia” afraid to reveal the true nature of their relationship and knowing that their relationship would never carry the same rights and benefits as a legally recognised marriage/civil union.
Humanity is very diverse, and however we label the boxes, there will always be people who will not fit. To judge them raises questions about our own humanity, and our capacity for empathy and compassion.
Dr Mykyta was appointed as a Member of the Order of Australia for services to Geriatric Medicine and medical education in 2012. He has practised medicine for over 50 years and still travels all over South Australia seeing patients. He has treated close to 10,000 patients with Dementia.