Years before entering the nursing home Mr Q had been a janitor at a boarding school. With the progression of dementia, he came to perceive the nursing home – with its distinctly institutional décor – as his old place of work. And so, throughout the day he would act out his janitorial role, with its many tasks of checking windows and doors, and making sure that all was running smoothly. The neurologist Oliver Sacks, writing about the case, noted that ‘the Sisters [who ran the home]…though perceiving his confusion and delusion, respected and even reinforced [his] identity. They assisted him [by] giving him keys to certain closets and encouraging him to lock up at night before he retired.’ Did the sisters do the right thing? Perhaps they should have been more truthful by reminding Mr Q that in fact he was a declining patient with dementia. Sacks thought otherwise. Occupying his role helped Mr Q to make sense of his surroundings. In fulfilling this role, says Sacks, ‘[Mr Q] seemed to be organized and held together in a remarkable way…’
The case of Mr. Q raises a thorny problem for caregivers: should truthfulness give way when people with dementia form false beliefs about their circumstances? This moral dilemma is usually presented as a choice between acting on a principle of respect for persons – which requires truthfulness – versus acting out of a concern for their welfare – which might require going along with a false belief. In our recent article, however, we argue that the debate should be framed in a different way. It seems to us, that in going along with Mr Q, the Sisters were scaffolding and protecting his sense of identity, something that thereby respected his agency. This of course had the added effect of attending to Mr Q’s welfare. We argue that when we support a person’s agency in these ways their welfare needs are simultaneously addressed.
Mr Q, and others like him, have a ‘petrified self’, as one psychologist has labelled it. That is, their self-image is frozen in time from an earlier life period. They interpret their new situation based on their outdated understanding of who they are. Often they are able to make sense of themselves within the situation, and correspondingly their situation may furnish them with ways of enacting who they are.
Our view is based on a theory of agency put forward by the philosopher J. David Velleman. On this view effective action requires that you understand what you are doing both at a time, and over time. You are locking a window, or mopping a floor, or fixing a leaky pipe. Why are doing that? Can you make sense of your behaviour given who you are, in the current circumstances? This point – where action is tied to sense-making – is what underlies Velleman’s theory.
It can be intuitively grasped when we reflect on those occasions where we forget what we are doing. We walk through a doorway into another room, but suddenly we forget why we came in. What am I doing here? In these situations our agency comes to a halt. We can get back on track only if we once again figure out what it was we came in for, thereby filling out the part of our self-story that motivated our action in the first instance.
What happens in these situations, we argue, is a response to what we call the demand for sense-making. And when we fail to meet the demand, as occurs when we forget, just like losing our place while reading a book, we lose our spot in our own narrative agency. For someone with dementia, losing their place in the story occurs with ever-increasing frequency. After a while the hurdles to sense-making are spread closer and closer together. This can eventually lead to an assault on their agency as such.
But for those like Mr Q with a preserved former self, sense-making can be restored. Mr Q was able to respond to the drive to make sense, because the preserved capacity to enact his role fitted in an intelligible way with his institutional setting. The Sisters’ facilitation of this thus respected Mr Q’s agency in a most fundamental way; it was respect for who he was. We argue that such respectfulness can, and often should, trump the moral requirement for truthfulness.
The position we defend, then, has lessons for caregivers. The correct approach for carers – we call this the default standpoint – should be an understanding of who the person was, and is, so that respecting their agency emerges as the preeminent driving principle of care. When challenges arise, a question prior to any other is one that interrogates the history of the person, and who they are, in order to gain insight into what might be driving their responses within the circumstances. Carers may then become focused on the remaining qualities and abilities of the person. This approach has the effect of providing a global reorientation of the relationship of care, and does provide something systematic by which carers may decide when truth should give way, for the sake of agency.