You will hear people, including your doctor, say that people with dementia often experience hallucinations.
I’ve worked with many people with dementia and I’m still not clear that what most of them experience is actually an hallucination. A lot of the so-called hallucinations are clearly misinterpretation of dementia-talk and in many other cases the result of confusion in the person with dementia.
We also have a total lack of understanding about how it really is to be subject to the severe memory changes, cognitive losses and strong emotional processes of dementia. It is so much easier for doctors to say there is one simple word to describe all this — hallucination.
The problem with that simple word is that it is, often, inaccurate and it frightens caregivers unnecessarily, making them think their person must be crazy.
Don’t forget that people with dementia are subject to all the following: lack of short-term memory, often compensating by confabulation or making up stuff to fill the memory gap. As elders with sight and hearing deficits, we don’t know how often they are misunderstanding what they hear and see. If Grandma sees a shadow out of the window and says it’s a man going by, is that hallucination? I’d make that a “doubtful.”
As people not yet operating with broken short-term memory, plus the intensification of long-term memory typical of old age, we really have no way to know how this is experienced. If you are in long-term memory, living in a past moment with your mother, with the intensification that you don’t realize is going on, you may report the conversation you had with your mother. Your caregiver may then assume you’re hallucinating. Yet, strictly, you aren’t hallucinating. You’re misinterpreting more than hallucinating. Therefore, this is not appropriately classified as hallucinating either.
Elders, with dementia and without, experience visitations from dead relatives. No-one knows how to classify this without personal embarrassment. According to who you listen to, it’s hallucination, a spiritual experience, wishful thinking. Just understand that such visitations are known to everyone who works in the Hospice movement and that in fact in our society right now there can be no consensus. However, you can be clear in assuming this is not appropriately classified as hallucination.
Most of the elders I have know who allegedly had dementia AND hallucinations were people who turned out to have serious mental illness. With one big exception.
People who have what is called Lewy Body dementia often begin with interesting hallucinations involving color and unexpected appearances. For example, a friend of mine reports her grandmother used to see colored rabbits playing in her kitchen. They were purple and red and pink and she knew they were not real.
“I know they’re not really there, honey,” she said, “But oh, I so enjoy them!”
In one of my support groups. a wife reported that her husband had recently been seeing little green men out in the cactus beyond their property. He was aware that it was odd to see them and he was amused by his own experience. Very oddly, two months later, a different couple came to a meeting and again it was the husband who was seeing little green men out in the desert. I was intrigued to find out that both couples lived in the same part of town.