What it feels like to live with dementia

Christine Bryden in her book Dancing with Dementia describes what it feels like for those with dementia:

There is such a terrible stigma attached to this disease that no one wants to talk about it or admit to a diagnosis, even seek one. So we struggle to remain ‘normal’ and pretend we are feeling fine. But we are not – it feels very different now to how we once felt. We know what it felt like to be normal, and that is not what it feels like now.  And as the disease progresses, it becomes more difficult to describe how we
feel, to get our thoughts in order and actually get the words out so you can understand us.

Laura, the pioneer of DASNI, captured our feelings so poignantly in an email she wrote in early 2001, as part of a study into early onset dementia:

Most of the time I live in the space I can see and the time called ‘now’… It is almost a ‘virtual world’… I move.. .and a new space opens to view.. .like a new room in a computer game. There is a type of cheese, I forget its name, that when thinly sliced is very lacey… my life feels like that – so full of spaces that it barely holds together…or like a tree in a gusty wind…branches touch and connections are made but fleet- ingly.. .made and unmade, little sense of cohesiveness…even my rooted-ness to my place in space feels tenuous…as if I might be torn loose, uprooted, blown away.