Christine Bryden’s insight, empathy and fierce intellect has never been more potently combined as she contemplates life in a ‘dementia prison’ (otherwise known as a dementia unit, within a residential aged care facility) as a consequence of her terminal illness.
With all good intentions, dementia-care advocates can dilute their message by keeping things nice. Not so Ms Bryden, who has had the illness since 1995, when she was 46. Her speech is challenging – this is a disease ‘that will kill us over time’, a secure dementia unit is ‘long term palliative care. There is no need to ‘jolly’ up a person who sits sleepily in a chair in an apathetic state. This, she explains, ‘could be me, preparing for my death’, and, as a person who has come to the end of life, ‘my spiritual, emotional and physical needs must be supported’.
As a researcher looking at how best to create software for people with dementia, Bryden’s speech presented by the Australian Aged Care Quality Agency deepens my understanding. Peacefulness, calm and quiet contemplation must be part of a user’s experience.