Can a person with dementia "hide" it?

5 answers | Last updated: May 10, 2017
It's your fault asked...

How can a person diagnosed with dementia hide it from family they do not live with? Do the family members they live with ever stop being the villains to the rest of the family?

Expert Answers

A social worker and geriatric consultant who specializes in dementia care, Joyce Simard is based in Land O' Lakes, Florida, and in Prague. She is a well-known speaker and has written two books, one focusing on end-of-life care and the other, entitled The Magic Tape Recorder, explaining aging, memory loss, and how children can be helpers to their elders.

I would suggest that you ask her physician if a family conference could be scheduled.  If some of the family can not attend the conference could be a teleconference ling.  Then, everyone would hear the same message and they would have the opportunity to ask questions of her physicians.  It is important for the family to support each other during this stressful time.   

Community Answers

It's your fault answered...

Sorry, I posted the above question and just wanted to add our story in hopes of getting honest insight in case I am losing perspective.

My mom has seemed not quite herself to me for some time but because my siblings all said they didn't see any change I just asummed maybe it was because she lived with me, my daughter and grandchildren . I thought maybe all that time together three women and children we were just getting on each others nerves. My mom's cooking some days is very good and other days you can't eat it; the rice will be all mushy and still have water in it where she turned it off like that or she boiled the meat and called herself making grave. I had mentioned to her I felt she was forgetting a little more and asked her to talk to the doctor about it but she said she didn't see a problem. I told her that I know we all forget sometimes but when you can ask the same exact question four or five times in just a few hours time with no recollection that you had previously asked and gotten the answer something is not right about that. I told her if she even realized , "Oh yeah you told me that" then maybe I might reconsider but to have no recollection at all I feel is not normal. I had made a couple of appointments for her while I was off but she would cancel them. I took her to one of her doctors appointments, with her not wanting any one in the room with her I waited a couple of minutes after they took her to a room and then told the nurse I need to step back there a minute I needed to tell my mom something. The doctor came in just a minute or two after I got into the room and asked how she was and she said "Well, I think I am doing alright but apparently my daughter thinks I have a problem remembering". At the point the doctor looked at me and said that she has dementia. He said it in a matter of fact way looking at my mom that the led me to believe that not only did he already know this but so did she because she didn't seemed upset or surprised by the news. I guess she either didn't want me to know or she forgot; she was more upset he was going to start sending Home Health to monitor her medicines and sugar (she's diabetic). They even asked if they could change her pharmisist because she kept harrassing the one she had non-stop. My sister has started noticing the changes but my brothers insist they don't see any change but of course they live in another state and when they come see her it is just for a couple of hours and she seems fine, the same thing at church she seems like this sweet little old lady with no problems at all. However, the minute we get in the truck to leave church or my brothers leave she starts in on either me, my daughters or the grandchildren and she just keeps on and on. She is selfish, self-centered, and rude. I try to keep my patience with her but my daughters aren't quite as tolerable their feelings get hurt then they get upset say something back and leave. To tell you the truth she acts like she hates us and my brothers think it us, that we are not treating her right. God, knows I love my mother and it hurts to have to talk to her like she is a child at times. She is my mother too and neither me nor my children would ever do anything to deliberately hurt her. My brother came to get her to spend a week at his house then she'll go to the other one's for a week, the only thing is they both work long hours so will they really get to spend enough time with her to notice. One of my brothers called to say her spent the weekend with her and she seemed fine but when he went to work on Monday and she called and I was telling her how good the carpet looked in her room, she couldn't even remember the color of carpet and she was the one that picked it out for my son-in-law to put in her room while she was gone. Even when I told her it was green she asked what shade of green so I told her and she said oh well it should look okay in there then. No recollection that she was the one who picked it out at all. How can she hide this from them? How can they not notice that she is not the same as before? Instead, I have to hear how it's my fault. My fault the doctor says she has dementia, my fault he insisted has has home health, my fault someone can't bring her to town everytime she decides she forgot something and needs to go back (could be several times in one day), my fault, my fault, my fault. Do they really believe I would neglect or mistreat my mother? Who do they think has to clean up behind her if she can't control her bowels and she thinks she got it all up but didn't? Who do they think has to go behind her turning off the stove top fires, water and moving knives so the babies don't get them? Who do they think has to listen at her rantings and ravings, and yes no matter what they think she does? It is me, my girls and grandchildren trying to take care of her. I am not trying to complain about taking care of her I really don't mind I Love her and am not trying to get rid of her. Do we ever stop being the villans and if so when?

Victorymoon answered...

My mother, who no doctor has diagnosed with Dementia, has Dementia. How I know is because I am the only one who spends hours alone with her. Also, if someone else in the family does not want to be concerned, they will not ever see it. No matter what I do for her, there is always more, and rarely is it right to her. Some of this has improved because I point out to her a thank you is a common thing when someone makes an effort towards us. Otherwise, I can do something, and before I sit down, or take a breath, she asks for more. No, I dont think being the one who helps, will ever allow for us to be "okay" in anyone else's eyes. If "they" had to do it, it might be different. Yet, they won't, and their guilt keeps them keeping US at arm's length on purpose.

Azguardian answered...

I've been dealing with my mothers dementia for five years now. In 2007 she stopped driving and stopped leaving her home but she was very active on the telephone. To hear her speak on the phone she sounded just fine - though she offered little details on herself other than she had been sick and her throat hurt. She acted interested and prompted callers at the right times. It was only when I was in her home during her phone conversations that I realized she was faking - she knew something was wrong and she was quite good at hiding it. Because the beginning of the disease generally has sporadic boughts of memory loss throughout the day coupled with bouts of normalcy - the individuals tend to know something is happening but it creates fear which can evolve into violance. My mom went through all phases. As odd as it may sound, I applaud her ability to recognize a problem existed and still find her ability to hide it somewhat comical. She has long since left behind those behaviors and currently lives in her own mind BUT again, while I miss my mother and the role she once played in my own problem resolution I take great comfort in knowing that where ever her mind is taking her she is happy there. She knows me only as a friendly face but her eyes are always bright, a smile on her face and the fear then anger that once consumed her is no longer evident. For that I am grateful.

Stargazie6 answered...

I take care of my husband who had early onset dementia and then had a mild stroke that exacerbated the situation. I have been dealing with these memory, personality, and lack of impulse control for about 25 years from one degree to another. I always feel like the villain in the piece, and complaining does no good because either no one really wants to hear it, does not understand the situation or wants to tell me what I need to do to further accomifate my husband ( who is already spoiled and selfish) so he won't be such a challenge. No, unfortunately, love them as much as we may, the truth is we are trapped and others only see us being strict, frazzeled, and impatient and our Mother's, husbands, and fathers as helpless victims.