As part of my work as a researcher of dementia care and support, I found myself using the term “dementia journey” to describe, in short, a framework we are using to locate all the different treatment, care and support interventions in the different stages of dementia. This expression, “dementia journey” did not feel right and I am grateful that a fortuitous conversation on the train with Reinhard Guss, removed any doubt about its appropriateness. The more I think of it, the more I can see it is the wrong expression.
Language matters, the stigma that surrounds dementia is manifested all too frequently by the use of expression that de-personalise people who are living with dementia, or that imply that it is not possible to live well with dementia. The Dementia Friends campaign is making huge progress in changing perceptions. There is also an excellent guide by DEEP (the Dementia Engagement and Empowerment Power) on the use of language to describe dementia.
I am still looking for an alternative to describe, in a couple of words, that dementia is not a “fixed state”, it has its own life course, starting with the accumulation of risks earlier in life, the different degrees in which it affects people as it progresses, the implications for end of life care, and even the repercussion for bereaved family carers.
Any suggestions on an expression for this will be most welcome!