Dementia as a spectrum?
No matter whether the diagnosis is Alzheimer's, Vascular Dementia or any other condition that causes dementia, it is a truth that it also greatly affects those around them. I've lived that experience, of being uncertain of who is in there, uncertain of the best way to help and interact, while processing my own grief. I've come to think of dementia as a spectrum, and I find it's a helpful way to think of it. As each person with dementia progresses, their experience is unique. I imagine a kaleidoscope of compromised understanding, feelings, sensory input and memories that are confusing, but sometimes do fall together in beautiful ways. A widely held misconception is that their personhood is drained away, eventually to nothing, but this has not been my experience. The delicate nuances of memory sometimes drifting away, but at other times being very present seem anything but fixed. The essence of person, of self, still remains even as their memories are stripped away. They still want to be comfortable, they still want to be loved and held, and they don't want to be bored or feel meaningless or useless. They often find themselves very estranged from their loved ones because there is accepted wisdom that if they can't remember your name they can't appreciate your company, which is very, very wrong. To call them a sufferer, a patient or even someone living with dementia minimises their experience. We do understand them a little better now, they are not senile or demented, we understand that they are people living with an inconsistent, memory impaired, decline. And I believe that choosing to take the journey with them, meeting them on their own terms and engaging with them in any activity they can and want to participate in, can reward you with connections that you can both experience. I do know that taking the journey with my Dad in this way resulted in the strongest, happiest memories for me now that he is gone. As for the other memories, of the times we sat in awkward silence, of all the times he wanted to go home, before I understood how to connect with him, I hardly remember them at all.