I have always been interested in the quality and specialness of human experience. The question: “What does that feel like?” is often in my mind. It is one that I frequently ask people in the course of my work as a therapist.
Long before I met anyone with dementia, I wondered what it would feel like to exist as a person experiencing a subjective world without that fact being recognised and responded to by others. Such a reality would surely be a terrible thing to endure.
When I first met began to meet people with dementia, I realized that I had encountered individuals who are in this very predicament. That was about 25 years ago and it was the beginning of my involvement in the dementia field.
Since then I have worked to understand more about how we can communicate with people living with dementia in order to better recognise and respond to their ongoing and precious, if perhaps altered, subjectivity. As well as being about trying to find out how best we can support people in this situation, it has also been about learning what experiences of living with dementia can reveal about the quality and specialness of human experience generally.
Over the last 30 years we have made some progress towards the appreciation of people living with dementia as having their own internal world, but there is still an assumption that living with the condition can only be an experience of suffering, loss and disintegration.
This is a big problem. It not only feeds fear of dementia and stigmatises those who live with it, it also prevents us from being able to enquire about the full range of the experience of dementia, and therefore the full range of being human.
On a practical level, this ‘suffering’ frame prevents us from asking vital questions about what might enable people with dementia to enjoy life, and to function as well as possible for as long as possible. These are questions we cannot not afford to ignore. We need to know how to support people with dementia to flourish, to continue to contribute and to show us all how to get better at being older.
My PhD work is seeking to understand the ‘optimal’ experiences of people with dementia: experiences of enjoyment, engagement, integration, mastery – even transcendence. What gives rise to these experiences? How are they expressed? What do they mean to the individual and those who support them? How might we help people to have more of them, and what difference could this make to us all?