Dementia – the late stages
Late stage dementia is not an easy stage for anyone, especially the families of someone with late stage dementia.
So having discussed the early and moderate stages, I will discuss the late stages.
By this time there is no question of whether they have dementia or not, it is quite clear that the person is very unwell.
In these late stages of dementia the person may not know that they don’t know. They may have been agitated before, but often become calmer. By this stage they will have a significant level of loss of functioning of their mind or brain.
The loss of functioning is broken down into the two same areas of loss of memory and loss of ability to plan (“the executive function”). Their memory will be very poor, they will have little or no memory in the short term and minimal, if any long term memory. They might retain some language skills, but in the end, they will forget those.
Their executive function will be minimal or non existent and only for simple tasks. They couldn’t plan anything, but if presented with a flannel may realise that they need to use it to wipe their face.
They are often working in quite an instinctive way at this stage. They may well be able to interpret body language better than speech, so a gentle touch works better than a sentence. I’ve found a quiet voice and kneeling helps, as it is perceived as passive body language and I am not interpreted as a threat.
I had someone describe this level of confusion like being woken from a deep sleep in the middle of the night. Someone with capacity would struggle for a few seconds whilst they gathered their thoughts to understand what is happening. But the person with dementia cannot gather their thoughts, so interventions can still be scary and confusing, they can grab out or push away. However they are often not so aggressive if they are left alone. It is simply that they don’t understand and cannot understand.
All their care will need to be provided for them, they will not be able to ask for much help, so everything or almost everything will need to be anticipated.
If people live long enough with dementia they will get to this stage and I hear things like “you’d put down a dog if they were like this”, but euthanasia remains illegal in this country, so people like this need to be cared for until they die of natural causes and would mostly likely not be resuscitated when and if an acute episode occurs.
By this time, they will need full time support. It is hard for families to see this, as there is little left of the person they were.