[-jimi-]

I'm reading some American sites and many recommend not to tell someone who has dementia that they have it! The concept is foreign to me. It's scary that people would go behind your back like that.

Reason why I wonder is I have a long time Internet friend from USA. The last 7 years or so have been a steady decline. He doesn't do much for himself anymore, his family or care worker do everything. They don't really let him go on his own when they shop or eat out. They take his money and pay his bills. They keep track of his appointments.

Thing is he thinks he has no diagnosis concerning his loss of cognitive abilities, memory loss and confusion. I used to think he was right and I was surprised no doctor, because he visits one regularly, ever brought up these things with him. Might it be that they already have him diagnosed and keeping it a secret? Is that common in USA?

He has forgotten almost everything from the past 10 years. He doesn't remember friends he chats with daily, anymore. I've noticed if I say something wrong by accident it doesn't matter, an hour later he has forgotten everything I said. He can't recall what he has done the same day, let alone the day before. He used to be good at fixing things but now he can't fix the easiest things.

His speech is sort of stereotypical now, it's like he tries to hide that he doesn't understand any of the conversation by just basically repeating the last someone said. If he makes an effort he can talk more for real but it only lasts so long. Also he acts like a child and throws tantrums (He is 55+).

Since he lives with family I can't wonder how they fail to see this. Are they in denial too or do they know what is going on? Surely loved ones must notice if you don't remember what was said 5 minutes ago and fail to complete simple tasks? IDK.

If they know something is going on I feel it's very unfair not to tell me. I'm one of his last Internet friends, most couldn't take that he changed, and also we spoke daily for 15 years so I consider myself a close friend.

Maybe this is more about relationships but I don't know where this post belongs.

Any input would be nice. Does anyone have experience of someone having dementia and not being told?

[Wren_]

I'm not sure regarding US practices and dementia patients ... that sounds like a really difficult situation to be in with your friend though, and one of the hard parts of online friendships. Do you know the family at all?

[Raindropvampire]

A lot of times they are told but do not retain that they have been told. I realize it is a bit different but my grandpa has Alzheimer's. In the beginning we tried telling him what was wrong. When he'd have a bad episode we'd try to "ground" him and keep him present by telling him what was happening and why. All it did was agitate him and then we'd have to stop him from hurting himself.

When he's lucid he knows something is wrong with his mind and he and I have talked about it. He'll remember for about an hour then it's just gone again until the next lucid moment.

When I volunteered at the nursing home I saw many patients with dementia. Most would get aggressive and combative when told what they were suffering from. Some would get suicidal and break down. Then 30 minutes later they didn't remember and the loop repeated endlessly.

I haven't volunteered at the nursing home in 20 years. It could be that modern thinking is: Why repeatedly upset someone with information they won't retain anyway?

I'm very sorry about your friend. It's a horrible thing watching the decline and not being able to help. I don't know about you but by nature I'm a fixer and I HATE any disease like this.

[hvert]

Have you been able to ask the family directly about this? My experience with diagnosed dementia patients is pretty limited, but I am not sure that it's common to withhold that info from a person. The two diagnosed people who come to mind both thought that the problem was with the doctors, not themselves.

Is it possible your friend has never been diagnosed? The test involves being asked a lot of questions that can seem pretty silly, so it's sort of memorable.

I do think that when you live with someone, it can sort of creep up on you. You just think that they are getting more forgetful because they are getting older. My neighbor would not have been diagnosed at all if he had not had a medical emergency because he forgot he had taken his medication already. It was obvious that something was wrong, but it was subtle.

I hope you find out what is going on with your friend and that he is getting the help he needs.

[-jimi-]

Good question. I've actually asked him in the past if he had any neurological examinations like memory tests and cognitive tests and I'm quite sure he has never had any. A few years ago though they did an MRI on him to exclude stroke, and it came out he did not have a stroke. Part from that, his GP manages his whole treatment part from some involvement from a cardiologist.

I don't at all trust the GP. It's a gut feeling that build up over the years. I've many times asked my friend to get a second opinion but he feels safe with this doc. I have the feeling the doc just prescribes and never brings up difficult things. My friend is not on any meds for Alzheimer's, I keep track.

Unfortunately I don't at all stay in touch with his family. I wish I could have a chat with them but it seems none of them wants that. I think the family totally underestimates what I mean to my friend and what he means to me.

I don't think he has been told a new diagnosis, because every time he got a new one he has been able to tell me.

Right now I'm so confused, don't know what to think.

[hvert]

That is really too bad, especially if you are in a position where you are too distant to talk to these people in person.

It seems really odd that he wouldn't have been diagnosed already, but that scenario seems more likely given what you've said (as opposed to him being diagnosed and not informed). I'm not an expert, but I don't think you can get that kind of diagnosis without the memory or cognitive tests. It doesn't sound like he would hide this from you, given how up front he is about his health, so it really is a difficult situation.

I can see it happening that no one has really noticed enough to get a diagnosis - or that they are scared of one.

What do you think about contacting the doctor? Does his family refuse to speak with you or just not welcome it? Does he mind if you talk to his family?

[hvert]

While I was talking with my grandparents today, dementia came up. I asked them if they thought it was true that the family living with a person often doesn't recognize something is wrong. They gave me several examples where that had happened to friends of theirs. My grandmother actually brought it to the attention of the family in one case.

It's all anecdote, but maybe it is helpful.

[SnakeCharmer]

One of my dearest friends, who was 29 years older than I, developed brain atrophy dementia, caused by multiple mini-strokes. I took her to the doctor and was with her when the doctor gave her the results of the MRI and the diagnosis. She was devastated.

She forgot it within a day and kept confabulating new reasons for her symptoms. Whenever anyone reminded her of the diagnosis, she was devastated all over again and spent a day in complete misery and weeping. It was cruel to keep telling her and the doctor finally asked her family to stop and urged them to accept the confabulation and do their best to keep her safe.

She spent the last five years of her life in assisted living and didn't recognize me at all for the last 4 years. She thought I was a caregiver and frequently commented that I should dress more appropriately for the job. I always thanked her and she'd smile. That was our conversation for four years.

The advice the doctor gives might depend on how advanced the cognitive decline is. In the early stages, the person can make arrangements with their attorney and others for their care. They can also monitor blood pressure and blood sugar and take care of themselves in other ways that will extend their high functioning days. Once they're very far advanced, things change. They're not storing new memories. Like my friend, they forget they've been diagnosed. Telling them again over and over ... it's not to anyone's benefit.

Jimi, I'm sorry about your friend. It's kind of you to maintain contact and accept him as he is and to continue caring.

[-jimi-]

Thanks all. I have actually thought of contacting the doc without asking my friend. I'm not sure it's a good idea... his doc seems quite weird.

[AncientMelody]

Originally Posted by -jimi-

Thanks all. I have actually thought of contacting the doc without asking my friend. I'm not sure it's a good idea... his doc seems quite weird.

It would be illegal for his doctor to share information to you unless he has you listed as someone he is wiling to share his medical records with.

[-jimi-]

It would not be illegal if he just listened to me and my concerns though.

[RubyRains]

You could try but a doctor is not supposed to be talking or listening to you about one of their patients. Sorry. If your friend is living with family that is good. They will look out for him. I used to know someone with a dementia problem and if you tried to tell them anything about their health, they would say you were lying. The person was in total denial. Also, when the doctor tried to tell them anything it did not register. They would forget it the next day. There all different kinds of dementia and I don't believe there is much one can do for many people.

It's nice that you keep in touch and I'll bet that is the best you can do for your friend.

[-jimi-]

I'm not so sure his family takes care of him in a good way, they are really old and what happens when they die?

I really can't know what is wrong with him and I hate that. I mean I can't just be sure this is dementia. I'm basically sure he has not been told it is. If the family has been told, IDK it just seems so weird not telling the patient.

I also have a pretty bad experience with family and brain disease. I used to have a friend with a type of brain disease and I could see something was wrong, she couldn't type right and she told me her eyes were jumping all over the place and she didn't have much balance at all. She was basically clinging to walls while walking. I knew all that over the Internet. When she finally got diagnosed much later the family said they hadn't seen anything unusual with her despite that she could barely walk anymore. Sometimes it's the families that are in denial.

[SnakeCharmer]

Jimi, in the USA, doctors can listen. They can't talk about patients without permission from the patient and they can't even say, "Yes, that's my patient." But they can listen. I know, because I've called doctors when I was concerned and they listened.

I started out by saying something like, "I know confidentiality rules don't allow you to tell me anything, but Mr. X has told me you're his doctor and I have some information that might be important." Then I sum it up as quickly as possible because doctors here aren't much for chatting, even if they know you. They listened, sometimes they asked "hypothetical" questions, and usually they acted.

If you can find out who the doctor is, it might be more effective to write a letter expressing your concerns. You will never get a response, but you will know you took action. Patients are sometimes good at getting themselves together for the 15 minutes of an average doctor's appointment. They pull themselves together to look good for the doctor and many pull it off.

You say he's 55+. Closer to 55 than say 75 or 85? 55 and thereabouts is very young for dementia. Some drugs can mimic dementia, most notably some of the statins, drugs to control incontinence, anti-histamines and drugs for bi-polar, such as Depacote.

You might ask your friend if he's taking any medications for anything at all. A list might help you figure this out. I have a friend who lost her memory and smarts while taking Lipitor, a statin anti-cholesterol drug. When she stopped taking it, her memory and intelligence returned within 2 weeks. She had holes in her memory from when she was on the drug, but everything else came back. It's worth asking about.

I wish you the best.

[-jimi-]

Thanks. His doctor is quite med happy and has him on pain pills and sedatives. He is also on a statin. His decline roughly coincided with starting on the statin but also with his increase in other meds.

But even if it is the meds, I'm so puzzled the doc seems to think it is fine. I told my friend to ask for a vacation from the statin drug and for a second opinion from another doctor but he doesn't want that. He has very high opinions of docs and meds, is brought up to never question the doc. He is between 55 and 60.

[-jimi-]

Yea, and it's not just memory and reasoning skills and other skills that disappeared, he also changed moods. He used to be quite introspective but now he can't look inside at all. He can't think and then react either. He reacts instantly. He is either sort of cheery or very cranky. When he is cranky it's about ridiculous things like someone forgot to buy him a Mars bar, then he yells and throws things and acts like you'd expect from an upset 5 year old. He always thinks he has right to things. He used to be very mellow and humble and putting others first. Now it's all mememe. It's so unlike him.

[SnakeCharmer]

If this was happening to me, I'd want a friend to intervene. When my friend lost her ability to think and remember on statins, she told me she was fairly sure she had the beginnings of dementia and her doctor had her writing things down. I asked for a list of all her prescription and OTC meds and researched them all, discovered the connection with Lipitor, copied off the material and she took it into her doctor. The doctor was skeptical because it was largely anecdotal, but one of the first people to discuss it was a NASA astronaut. He lost his memory on statins. Her doctor agreed to try, but only to humor her and me. Her memory returned. He was astounded.

Here's an article: It's Not Dementia, It's Your Heart Medication: Cholesterol Drugs and Memory - Scientific American

My friend was cooperative. If your friend doesn't want to rock the boat, maybe you'll end up being the boat rocker. Maybe you'll lose your pal's friendship, but as it stands now you're already losing him.

Dementia does happen to people in your friend's age group, but it's not common. Dementia usually comes on slowly; however, some brain diseases can come on quickly and ... well, so quickly that people notice and become alarmed.

I've talked about two friends in this thread. One who suffered vascular dementia from many mini-strokes and who could not remember her diagnosis. An MRI showed her brain was atrophied. She was well into her late 80's when she began to change. Her symptoms came on slowly, over a period of several years. My other friend was 67 or 68 when she started taking statins and became highly confused. She's now in her 70s and in fine fettle. Her symptoms came on quickly, within a matter of several months.

If it was happening to me, I'd want a friend to rock the boat on my behalf. I wish you the best, Jimi. This is very difficult.

[-jimi-]

Thanks. I really needed this.

I'm aware dementia can start early because one type sort of runs in my family but it doesn't cause memory loss. Also one of my first jobs I helped taking caring of the youngest Alzheimer's patients I met, she was 31 and got it at 29!

Now if I can talk him into going off the statin as a trial. I feel I must have a really strong case here.... and yea I rather lose him as a friend if it means he can go back to a more normal life. It's heartbreaking to hear he doesn't remember what he did the same day and it's even worse he doesn't care about not remembering. I guess in a way he doesn't get bored anymore because everything is new to him every day. But if this gets worse he will forget how to be online.

[-jimi-]

Something new happened. He actually had a very classic case of transient global amnesia. I don't know if statin side effects are hyped or if this is real, but searching for this and statins gives me lot of matches, TGA and dementia not so much. He says he will talk to doc Monday about this. Doubt he will remember to do so though. Still I feel I have my answer. Not that I can do crap about it. So many years of his life lost to a med? Can that really happen and no one reacts???

[SnakeCharmer]

Jimi, you've done a good job of detective work. Yeah, people lose all sorts of time and vitality to bad reactions to meds. Everyone can see something is wrong, but people don't associate the symptoms with the meds, maybe because the symptoms don't start immediately, so they don't seem related.

He's lucky to have you in his corner! Fingers crossed that something positive will happen.

[-jimi-]

Thanks. I hope he gets off this med and sees what happens. I mean I might be totally wrong but maybe this is what it is... If I could have him "back" it would be AMAZING. Something I never expected. But now I'm already thinking something will change and he might opt to stay on the med. He has very deep trust in his doctor.