Feature
3 April 2023
In 2019, the Singapore Management University and the Alzheimer’s Disease Association (now known as Dementia Singapore) published the results of Singapore’s first national survey on dementia. The study revealed that stigma was a significant issue for persons with dementia and their caregivers. In fact, the headline of the press release was “3 in 4 persons with dementia feel ashamed and rejected” (italics added).
This finding is paralleled by my own experiences ministering to families with persons with dementia, where shame often emerges as a problematic issue. When such shame is intense, a common response is to keep the person with dementia at home. Thus, for Christians, a diagnosis of dementia can often be the end of a person’s churchgoing life.
What then might be the cause of such shame? After all, dementia is not something that one has much control over, and the presence of dementia is not evidence of any moral failure (compared with the shame associated with, say, alcoholism).
Shame has received much focus recently in biblical and theological studies. Borrowing from earlier developments in cultural anthropology, some theologians have distinguished between shame and guilt cultures. However, such a dichotomy, while helpful to the extent that it helps one understand cultural variation across different societies, is overly simplistic. One aspect of such over-simplification is treating “shame culture” as a monolithic category. Rather, shame should be recognised as a variegated phenomenon, shaped by diverse cultural influences.
Specifically, in the Singaporean context, I have found a Confucian view of shame helpful for understanding the stigma associated with dementia. That such a view would often be implicitly held by Singaporeans (even among Christians) is not surprising given Singapore’s majority Chinese population. In his peer-reviewed article entitled “A Confucian Theory of Shame”, the scholar of religion Nathaniel Barrett helpfully defines the Confucian view of shame as that which “arise[s] from the failure to realize any value through adequate harmonization” (和, hé).
This emphasis on harmony allows one to immediately grasp the communal dimension of shame, since harmony is a socially-defined concept. Society has normative patterns of operation, and harmony arises when one’s behaviour complements such patterns. Thus, a behaviour can be seen as harmonious or inharmonious depending on the circumstances. Consider, for example, how walking around in a bikini would be perceived inside a swimming complex compared to at the bus stop just outside the same complex.
Since Confucian shame arises from the failure to realise harmony, realising shame can be a social good. Shame functions as a social corrective, leading one to seek behaviour that promotes harmony. In fact, not knowing when or how to feel shame (不知羞耻) would be a major social detriment. Thus, the Confucian sage Mencius famously observed in The Mengzi 7A6: “A person must not be without shame. Shamelessness is the shame of being without shame.” 「人不可以无耻。无耻之耻，无耻矣。」
Since shame is associated with the failure to realise harmony, it is not difficult to understand why dementia is considered shameful. After all, the loss of memory or executive functioning can often disrupt social expectations, and thus, harmony. For example, consider the shame that one feels when one has forgotten the name of someone they ought to know. Now consider how much more shame a person with dementia might feel when they have forgotten the name of their own child! In fact, the shame for them might be exacerbated in the earlier stages of dementia when they are still cognisant that they ought to possess such information.
Moreover, such shame is not only confined to the person with dementia but to their caregivers and loved ones as well. When a friend greets a person with dementia but the person simply responds with a blank stare, the social awkwardness that is created puts their nearby loved ones in a difficult position.
In addition, the shame that arises from a failure to realise harmony is not just confined to individual social episodes. It can also be associated with larger narratives of life, that is, how one expects life to unfold. Consider a brilliant professor who, in her younger days, wowed her students and colleagues with her intellect. A typical social narrative for such an individual as she ages would be for her to become a sage-like figure to others. Imagine what happens when dementia results in her becoming a shadow of her previous self. The expected story of her life has been disrupted. How discomforted her former students would feel around her!
Recognising the roots of such shame associated with dementia allows Christians a means to address it: by seeking to shape social norms through the gospel, especially in a church setting, so that harmony is redefined in ways inclusive of persons with dementia. Such a strategy is frequently applied in the New Testament, likely due to the important role that shame and honour also played in the Greco-Roman society of the early church. A prime example would be Paul’s discussion in 1 Corinthians of the crucifixion of Christ. Paul argues that that the crucifixion—a deeply shameful act—actually reveals “the power of God and the wisdom of God” (1 Cor 1:24). Paul sees shame and honour as being inverted by the cross.
In particular, to help their congregations include persons with dementia, church leaders serving in cultures that have been influenced by Confucianism could emphasise a familial ecclesiology, that is, the church as a family of God (cf. Eph 3:14-15). Since family is paramount in cultures influenced by Confucianism, such an ecclesiology would resonate with the culture, reminding congregations of their duty to engage with persons with dementia. After all, how can harmony be achieved in one’s family when a family member has been excluded? From such a perspective, it is not persons with dementia who are shameful. Instead, what is shameful is excluding them from the family when God considers them His precious children!
I am convinced that such transformation of perspective can be achieved when the gospel of Jesus Christ is wisely contextualised and faithfully proclaimed. Let me end with a story illustrating this. There is a church I had the pleasure of ministering to. After some time of preaching and teaching there, some young adults in the church approached me and asked: “How can we better care for our elderly members with dementia?”
I was surprised by their question. After all, it is not every day that young adults want to address the issue of dementia. I asked them why, and they said, “Those with dementia in our church are the fathers and mothers of our church. They raised us up, giving us a lifetime of faithfulness. We want to honour their lives. We want them to know that, even if they do not remember us, we will remember them.”
In an era where churches often run into conflict because of the generation gap, the love shown by these young people for the older members of God’s family stands as a remarkable witness to the transformative power of the gospel. What a shame it would be if we do not use this gospel to shape our churches into inclusive communities!
Mr Leow Wen Pin is the President of the Koinonia Inclusion Network, a parachurch organisation that helps churches include and disciple persons with disability. He is the editor of Enabling Hearts: A Primer for Disability-Inclusive Churches.