Reframing dementia

Personhood is a dangerous concept for people with dementia, says Scottish theologian and dementia expert Professor John Swinton.

Speaking ahead of his visit to Australia for the International Dementia Conference in June, Professor Swinton from the School of Divinity, Religious Studies and Philosophy at the University of Aberdeen, said the language of personhood could be both useful and extremely detrimental in society.

While valuable in addressing the needs of the individual in person-centred care, he said the language of personhood could also narrow our definitions of a worthy life.

Professor Swinton said this came into sharp focus in the framing of people with dementia by some people in the euthanasia debate as ‘non-persons’, and therefore as natural candidates for euthanasia.

“To be a person can be quite risky because it can be a way of framing someone that brings about goodness, but it can also be a way of framing somebody that brings about great difficulties and even perhaps great evils,” he said.

“The language of personhood is being used in parts of society to take away the humanness of people with dementia, even to the extent that some would argue that having dementia is equal to death.”

Illustrating the power of language to dehumanise, he said it was common for people to describe those with dementia as “already gone” or not being the “person they used to be.”

He said health professionals and families needed to think of ways to challenge these assumptions by sharing stories of the experience of dementia – stories that are full of sadness but also of love, capacity and meaningful experience.

“We have to find ways to explain that dementia has nothing to do with losing personhood or humanness, it is a simply a different way of encountering the world.”

By telling their stories, carers and loved ones of people with dementia could contribute to a fuller understanding of what it means to be human, he said.

Professor Swinton said in the euthanasia debate, others were choosing to speak for, not with, people with dementia.

“The problem is once you have a diagnosis of dementia and once you begin to lose aspects of your story, people can tell any kind of story they want to. That’s really what’s happening in the euthanasia debate. People are telling their particular stories about individuals rather than allowing that person’s story to dominate the conversation,” he said.

“A good deal of the problems that people with dementia have is that they don’t so much forget things but that they are forgotten.”

Professor John Swinton will present at the HammondCare International Dementia Conference on 26 June.