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Are they ever aware of what is happening to them?

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The blessing of dementia is that you don't know you have it. Oh sure, early on you notice forgetfulness and get aggravated, but mid to late stages, you don't have short term memory and you retain very little.
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Many people will try and convince a person they have dementia. It's usually a waste of time and just upsets the person. In early onset dementia people can be made aware and even prepare in some ways but usually by the time dementia is diagnosed a person's ability to reason is diminished and to them things are just fine.
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My Aunt realizes. She even says damned dementia.. But she is still in early mid stages
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We have a family friend who knows she has it. She is telling people and giving her goodbyes. She's amazingly positive about it. She says, I know that I won't know you some day and I hate that, but please know that you have been a dear friend and I wish I could keep the memories. And I'll see you in the hereafter. I'm not sure I could be that accepting.
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Heck even family members wont accept that thier loved ones have dementia. My mom joked about my dads ALZ until it was way past obvious to everyone. And my FIL and hubs kept blaming MILs problems on her hearing. Hello, deaf people dont put cooked meat into thier purses (unwrapped), or blame thier family members for slipping drugs into thier food!
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My dad exhibits what we (as in his caregivers and my mom and his doctor) are calling "memory problems" or "memory issues". He has an appointment with a neurologist in a few weeks. MaryKathleen, I'd like to see more people chime in on your question so I can ask the doctor some questions when I take him to his appointment.

Currently my dad does not remember what his doctors and others tell him (whoever takes him has to write things down), can't think of words that he's trying to say when talking to someone and forgets where he puts things. He does remember that he had items at some point but just can't remember where he put them. He does not drive because he gets confused easily.

His reactions from all of this are: throwing fits at home and in public, severe frustration, severe aggravation and feelings of hopelessness. One thing he always says is "Oh God" in a very depressed and hopeless tone. I would like to know when this will go away.

I'm guessing he has realized that he has a problem but has not come to terms with it. I'd like to know more about this condition so that I will have some good questions for the neurologist, and so that I can help him.
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Also, MaryKathleen, I can ask the neurologist your question and see what they say and then communicate it back to your post.
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Jkling....I commend you for trying to be proactive w/the Dr re: your father's care. I would ask the Dr. about medication(s) for anxiety, depression, behavior since so many others on this forum have said these have been a godsend for them and their loved one.....night and day difference and, no, I'm not speaking of sedating your Dad into total lethargy.....just allowing him to relax, lessen anxiety, elevate mood, reduce bad behavior.
I would also urge you to search the Forum Topics on this site. I suspect you will find at least 1 article that will prrovide you a starting point for creating your list of Q's for the neurologist.
In answer to MaryKathleen's original Q, I can only share my experience w/my Mom (94, moderate dementia, now in ALF). Mom was dxd at 88 w/MCI (Mild Cognitive Impairment). She was still living on her own in condo, driving, very socially active....BUT...."memory issues" were becoming increasingly concerning: missed appointments, "lost/misplaced" keys, wallet, credit cards, purse, keys locked in auto, etc. Then bills weren't getting paid, credit cards turned off....Dr. appts....MCI dx. W/caregiver help, and my sibs and I taking over bill-paying ( POAs in place), Mom was able to stay in her condo until 91 YO. Still, during this time, she did exhibit a lot of anxiety (which greatly distressed me) when she couldn't find her purse, her wallet, her keys, etc. She even went thru a (thankfully) brief period of paranoia....calling the police to report things "stolen".....of course, whatever was "stolen" was found in her condo....laying under a sweater on a BR chair, etc.
My Mom always, to some degree, acknowledged her "memory problems" but usually in an off-hand joking way....never seeming to recognize the truly serious problems they caused her.
What was an even bigger concern to me was the rather rapid (over a few months) decline in cognitive function. This, my Mother has never recognized. She began to tell me more and more frequently, that things weren't working: the brand new hairdryer, the brand new iron, the home phone, the TV remote, etc. In every instance, according to her, they were broken and had to be repaired. She never made that "reasonable" deduction that "she" was the common denominator.....she was no longer able to do that.
Funny story tho.....one of the last times I visited Mom in her condo, we went out. I was driving her car (she had stopped driving, Thank God!, but we hadn't yet sold the car). I opened the center console compartment looking for the garage opener. Reached in and 1 by 1 started pulling all these "missing" and "broken" things out: the TV remote, the home phone, her Jingle cell phone....Each 1 I held up to Mom, saying, "Mom?? What the heck?". Mom just looked at me and then started laughing....saying...."Oh.....I've been looking for all of these!". Well.....Together, we had a short but good laughfest.....needless to say, once back in the condo, they all worked perfectly....
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There are two bloggers on this site, David Hilfiker and Rick Phelps, who are writing about there experiences with dementia. You can find them near the bottom on the Home Page, From the AgingCare.com Blog.
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I think in some sense they do know especially on the early on-set; there might be denial and emotional moments because they are aware of whats coming...no matter how tough things get, be strong especially for them and the main caregiver...like my dad's doctor said it's harder for the caregiver more than anything else. HOPING good days to all...
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My aunt knows she has
" memory problems". She was having a problem with confragulations for awhile. We discussed them. They were usually centered around people moving. Harmless for the most part but confusing to the people she mentioned to that her friend had moved or a young school age niece had moved. No one had moved. One day she off handedly mentioned that someone had moved and after skipping a beat said "or I may have just made that up ". She really thought it was true but yet she had discussed it with me so often that she intellectually knew she might be wrong. Then there is the issue where she gets blamed for doing things she really did not do but others think she did and she just can't remember. How confusing to her and sad to see her sometimes say, perhaps she did do whatever. She just doesn't remember it. She doesn't get angry. She just takes it in stride. She's always been eccentric, sometimes stubborn and even obstinate but lots of fun. Now in an odd way she is more reasonable than before. I think she " knows" she's not herself and doesn't want to be a problem.
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My husband is 75 and has vascular dementia. He was diagnosed in 2011 so it has been a long time and he is way down the road. When our kids were little they blamed everything they did wrong on "Little Joe". So when he does really weird things, we blam it on the "Little Joe" part of his brain. This helps him to feel it is not him, but Little Joe. I think it helps. Just today I told him to tell his Little Joe brain to tell his Little Joe legs to move. Did it really help? Who knows. He moves when he feels he can.
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My husband is beginning to exhibit more agitation and anxiety with his life. He is in a home and well taken care of but refuses to get out of bed. His cognitive ability is declining but he still has the ability to communicate fairly normally. He is very belligerent with the nurses and has become irritated with me. His diagnosis is FTD. My question is......where in the stage of dementia does this type of behavior begin to manifest and worsen?
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My mother doesn't admit to anything. If she knows she has dementia, it's not something she wants others to know. So we tiptoe around the issue. Actually it is the side effects of the dementia -- the unsteady gait and falling potential -- that cause more problems than the brain deficit for her. I think the brain problems are hardest on me. It can feel like the conversations that are actually twisted are supposed to make good sense. She remembers things that never happened and rewrites things that do. Yesterday is the same as last year. There are obsessions on things that she feels explain problems she is having. She wants them fixed right now. It's like living in a land where things don't make good sense and trying to stand firm not to be thrown this way and that.

She may feel like she is fine, though. I have become the competence she's lost, so she probably feels like things are pretty normal. She and I don't talk about dementia, since it would upset her. I only correct her if it is important or drives me particularly batty.
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From what I've seen and read, it appears that, mercifully, the dementia patient is at least partially unaware of their condition. And as time goes on, they are less and less aware.
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Chickiebell, that would be a good question to ask his neurologist, or whoever is managing his dementia. I would also ask if there are meds that can alleviate some of the agitation and distress.
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My MIL has no idea. We have told her many times, which is heart breaking for her for about a half hour then it's gone. She asks every single day. Why can't I drive? Why does the nurse have to come? If she pushes it, we tell her, but most of the time now we just stay vague and say "for your safety" or "because we love you". Sometimes I am jealous that she gets to forget. I think about it 24/7! Which I know is not healthy and something I am working on :)
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"She may feel she is fine...I am the competence she's lost"

I feel the same way about my mom. It's such a huge responsibility and often a thankless one due to their frustration. My mom is aware she is losing cognitive function, losing pronunciation of words and such, or losing them altogether. She doesn't say as much, but I see the fear in her eyes and how afraid she is about losing her grip. It's hard when they say that 'thingamajiggie' isn't working right and they want you to fix it but they can't find the words for the thing. It could be anything from a lamp to a TV remote to a soap dispenser.

So yes, to the OP. In my experience with my mom, they know that things are not quite right with their minds. It is heartbreaking.
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I'm not sure if my late mother knew she had mental issues as everything she said/thought was reality to her and I pretty much went along with it. In the last year of her life there was a man sleeping under her bed (6" of space under there), where was her cat - a nice day it probably went outside for a walk, where would my father sleep when he visited as the nurses wouldn't know who he was - he's been gone 16 years, wanted to ask the people who bought her house if they'd sell it back to her so she could live in it - bed ridden with no furniture and no nursing care, wondered how her parents were - if alive they'd be 125 and she never lifted a finger to help them because "it's too much trouble", even though she lived around the corner, didn't work and had a big fancy car. And on and on it went. There was no reasoning with her at all .
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My husband knew that he had Lewy Body Dementia from the very beginning. At his worst moments he scarcely knew he was, let alone what conditions he had, but in his lucid moments he understood exactly what he had. If w went into a new doctor's office together he'd say, "I have Lewy Body Dementia. She's my memory. She needs to stay with me."

My mother knows she has memory problems. I don't think anyone has ever used the word dementia in her presence.

Do people with dementia know they have it?

Yes. Definitely. And until the end, if they remain lucid enough.

No. The denial mechanism is a strong defense of their welfare.

Take your pick. I've seen them both.
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It seems about half the people who are becoming demented are not aware that they are having increasing mental problems, and about half know there's something wrong with their thinking. I learned this when I attended a recent great presentation by Teepa Snow about builiding a Alzheimer aware and Alzheimer friendly community. teepasnow/Teepa Snow is a dementia and Alzheimer's care expert who trains and helps agencies, facilities, and families

If they are aware, I think there are good strategies for working with and for them. If they are not aware, or in denial, don't try to rub their noses in it. That won't help and will likely make it worse for all.

My mother's awareness seemed to come and go. Sometimes she'd pull out a clippping about Alzheimer Disease she'd saved and ask me "Is this what I have?. I want to be dead if it is." Some periods she just lived her life... not worried (no more than she'd ever done, that is). And sometimes she'd put the blame for her problems on devices she'd used for decades - a broken phone, a non-working stereo system, ...
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