QUESTION: Do dementia patients have fears different from the rest of the community?
(Included with the question submitted to BKB):
Response from the Frontotemporal Dementia (FTD) Support Forum
FTD Response: Honest, that is a huge subject. Many people with FTD have very little awareness of their diagnosis or their prognosis. There are some who have complete awareness and understanding and there are some who are in total denial. So the spectrum of "awareness" is complete, end to end.
FTD Response: But what is the spectrum of fear? The very few people I know who are diagnosed with FTD and have complete awareness do not seem particularly fearful. Within the limitations imposed by their symptoms, they plan and live much like everybody else.
FDT Response: My wife is one with very little awareness. She understands her word-finding and communications and executive functions like getting dressed are poor and declining. But it seems she does not think or talk about her prognosis. She does not seem fearful of death and I think she is much more brave than I could be. Even her obsessions do not seem particularly fear-driven.
FTD Response: I know only a couple of people in total denial. They have been told, but it is as if the message was not received at all, or was fundamentally misunderstood. I have wondered if these are cases of their subconscious saying "I don't want to know, because I could not cope." Does that mean they have no fear, or they have extreme fear, or neither? So far, I have not seen signs of extreme fear, so must assume it is not present or is suppressed.

Barbara: What do you think?

That is an interesting question. We have learned so much about the physical body but what goes on inside each individual mind is more difficult to determine. Add to the challenge the individual mind is functioning in an abnormal way and we can't get definitive answers. What I just wrote is a wordy way of saying I don't think we know where fear fits into dementia, any kind of dementia.

My personal thought is that each person is different in their disease process as well as their personality. Because of these variables, each person will experience and/or express fear in accordance with how their dementia manifests itself. I also believe for some fear just isn't there.

The definition of FTD from the FTD Support website states "Frontotemporal dementia (FTD) is a group of related conditions resulting from the progressive degeneration of the temporal and frontal lobes of the brain. These areas of the brain play a significant role in decision-making, behavioral control, emotion and language.” Fear is an emotion so it would seem our response to fear would be affected. Isn't fear an emotional reaction to a perceived outcome? “I am afraid because I think something beyond my control is going to happen and it is going to be negative". For some people with dementia that ability to project into the future isn't there.

In respect to denial; some of us go through our entire lives denying that which makes us uncomfortable and we do not have a diagnosis of dementia. We run away from our challenges in everyday living and we run away from our challenge of dying. If that is our pattern then we would be in denial of our approaching dementia.

There are so many degrees or levels and kinds of dementia that it is hard to make any blanket statements but I would think once dementia is fully established within a person (no matter the name we use for the dementia) the ability to realistically project into the future diminishes hence fear of death diminishes.

I have to qualify all of my reasoning here. I really don't know. I just have ideas and thoughts.