In this post, Jeanette Kennett and Steve Matthews discuss their recent article in Journal of Applied Philosophy on respecting agency in dementia care.
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.