What is the trend amongst physicans? Do they recommend telling the patient that they have Alzheimers or not, just trat them and just tell the family? I've seen both recommendations. Any comments as to explaining either side?

Well I am not certain what the trend is but what I did was I wrote a letter to her dr. I gave it to the nurse when I signed Grams in for her appointment. In the letter I asked specific questions regarding her care and openly asked if she had been offically diagnosed ( I was just taking over her care at this point and wasn't sure). I mentioned that I would leave it up to him on how he wanted to handle it. If he wanted to talk with me privately, that was fine. If he felt it best to talk openly I would follow his lead. He walked in with the letter and went right down my list. It was the 1st time she was told openly she had AD.

Perhaps you can call the office or write your own letter. Myself, I think honesty is best. I would want to know if it were me. But I also realize that not everyone reacts and thinks like I do. Would it be best to tell your LO? I think it depends on you, your LO and your dr.

This in no way is meant to sound cruel or insensitive. Still, the client will eventually know something is terribly amiss even if such important information is kept from her or him. There can be no question of the life-altering ramifications of divulging the truth. However, regardless of the client's reaction, the truth must be revealed. Anything less is deception whether it be purposeful in light of the client's potential reaction or otherwise. Sensitivity to such a horrendous revelation must be exercised, but to mask such a thing is nearly as cruel as the disease itself, IMHO.

I asked point blamk & was told I had AD,that was 10 yrs ago.I was retested last yr in Dec.& now have a dx of Vascular Dementia,which will most likely go into AD at a later time.In the meantime I was able to execute POA & update my will.But i'm one of the lucky ones,I was a CNA for over 30 yrs & knew about dementia & what problems it can cause.Many do'nt know or understand or don't want to.Those I feel sorry for........

I don't know about trends, either, but I think it's playing God to decide the patient shouldn't know. There are too many things that need to be done, planning for medical care, legal and financial assistance, and so forth. And I don't think that's up to the family, unless the patient wants the family's help.

As for Chris Butterworth's comment about sensitivity must be exercised ... may I second the motion? In spades?

My husband's symptoms were not, in the opinion of his primary care physician (a wonderful, caring man), entirely consistent with Alzheimer's, and he tried hard to find another cause. The doctor who administered a battery of psychological tests also felt some of the symptoms were unusual for AD. So we were sent to a neurologist. After reading the file, and conducting a mini-mental, she said "Well, I don't see what the question is. It's as plain as the nose on your face he has dementia."

In case you're wondering, this isn't exactly sensitive ... And to make matters worse: I tried, as diplomatically as possible, to ask how she could be so sure after such a brief examination, when the other doctors were not convinced after much more extensive testing. She got extremely huffy with me for having the gall to question her competence. I think she should have encouraged us to seek a second opinion, especially for something as difficult to diagnose as AD, not be offended by my resisting being told my beloved husband was facing such an awful fate.

To JAB: this sounds exactly like what happened with my husband. Only we were seeing the neurologist when I first brought up the subject of his difficulty dressing, and doing what I consider fine motor skills. She immediatley gave him a brief test--spell world backwards, draw a clock, write a sentance, etc. She said at the end of the test that we are definitely dealing with dementia. I asked about depression, and she prescribed an antidepressant to try for a month (he had already been on zoloft for another health issue), and we went back to see her for follow up in a month. She again gave him the same brief test, and again said it's dementia, and gave me the "36 Hour Day" book to read, and prescribed Exelon patch. I felt very uncomfortable discussing all the issues I've observed over the last couple of years--like not taking a bath or shaving, unless I insist, going into a rage whenever I disagree or question something he says. I wrote a 2 page letter and gave it to his family Dr., and after he read that, he came into the room, and I let him know that it was okay to discuss it in front of my husband. However, my husband has not once in 2 weeks mentioned this diagnosis at all to me, and I don't know how to bring it up to him.

I am going to respectfully disagree here. I never told my husband he had AD, I said he had a memory problem and the doctor was helping him with that--all true enough. What difference does it make what you call it, and I didn't think he'd realize what the word meant anyway. If he asked, I could never, never tell him that it meant his brain cells were dying and he would revert to infancy. Honesty is the best policy with shoplifting, but for the most part, lying to an AD patient is a kindness. As for medical and financial matters, that should be taken care of anyway, whether someone has AD or not. When someone is unable to dress, bathe, make change, etc, it is no time to be making such important decisions. I never condemn anyone for what they say or do to get thru AD, we each do what we think is best, but I just don't see the point in hurting and frightening someone in such a cruel way--and AD is unbearably cruel.

I think the answer would have to depend on the person and the stage of their illness. I do not think that either my mother or father heard their own diagnosis directly. My dad asked his MD for help with a feeling of not being present mentally and found exelon helpfull initially. My mom did not like the idea that he had alz because alz is progressive. Whatever dementia dad had it was slowly progressive. And my mom denies that she has problems, and thats ok too.

AD is different for each patient, so vjh has a very good point. And like his mom, my husband does not accept the diagnosis, and seems unaware of his problems, and I think that's not only OK, it's probably a blessing.

One point for the doctors, though (and that's where this discussion started out), and that the families need to understand, is that the doctor may not know what sort of support system the patient has, or what his relationships with his family are like. I believe that current law holds that no one in the family, including the spouse, has a legal right to access a patient's medical files without the express consent of the patient. So that makes it extremely tough for a doctor to withhold information from a patient and tell someone else, even a spouse, without putting himself in jeopardy. This is particularly true for the patients who are diagnosed relatively early on, when it is not obvious to anyone except those extremely close to the patient that there even IS a problem. Patients in the early stages have every legal right to make their own decisions, even if it's just giving a durable power of attorney to someone they trust. I've been exploring options, and one thing that has been emphasized by the attorneys and fiduciaries with whom I've spoken, is that just because a patient may not be mentally sound enough to handle finances, for example, doesn't mean that he does not know his preferences or is unable to express them, and he has every legal right to do so.

Connie, I don't think you need to agonize about how to bring it up. I gather that the doctor has already told your husband about the diagnosis. Your husband probably hasn't mentioned it because he's forgotten, or perhaps because it explained things to him he didn't understand, and he's simply accepted it. We expect the patient to react the way we do ... for the most part, they don't. They are living in the middle of a confused brain, and so the confusion seems normal to them. Maybe it's a defensive mechanism, to simply deny it. I don't think it bothers them nearly as much as it bothers us. My mother died of AD. My father suffered agonies; my mother, like my husband, didn't seem particularly bothered by the diagnosis. Maybe, in addition to memory loss, the disease affects the ability to look ahead, and minimizes the capacity to understand what could happen to them. One thing I've read over and over again, is that AD patients tend to live much more in the "now".

My husband was there when I was told, the neurologist was that brutally frank right in front of him. He was bothered by my tears, but not, apparently, by what she said. That was more than two years ago. He's been enrolled in a longitudinal study at a major research center for nearly two years, and also a clinical trial for more than a year, so we visit the center often, and he's undergone a lot of testing. He's read up on AD on the web. We've talked about it a few times -- I don't see any reason to bring it up per se, if he doesn't -- and he knows from a factual standpoint what the disease is and what it can do. (I do discuss various legal actions I've been taking, setting up a living trust, things like that, but not what the disease itself is and can do unless there's a real need for it, or unless he starts asking questions.) He seems, if anything, curious about the AD. He's still not aware of his problems, and sometimes asks me if he really does forget things, and wants examples. (That's not easy to know how to handle!) He says he gives himself memory tests on the web, and always does OK. The last time we talked about his AD was last week. We'd been asked if we'd like to participate in a new clinical trial, and he, of course, needs to be involved in deciding whether he wants to accept the risks. He told me he doesn't believe he has AD, he thinks his memory problems are from an accident many years ago. And he thinks it won't get much worse before he dies of old age. So he doesn't seem to be the least bit afraid of the future, and I work hard to keep it that way, reassure him how much I love him and that I'll always be there for him.

I've been struggling to understand what is going on in my husband's mind, to know how to talk with him and what to do for him. "Speaking Our Minds", by Lisa Snyder (she's a social worker at the AD Research Center at the University of California San Diego, where I found the book), is a series of interviews with seven AD patients who do have some insight into what's going on, and how it makes them feel, and how they relate to the people around them. The book has given me quite a different perspective. It shows that even at the advanced stages of the disease, communication is possible, and extremely important for the patient to feel loved and secure. It's just a different kind of communication than we've been used to. It takes a lot of trial and effort to find the right way to communicate, and the right way to communicate changes as the disease progresses. The book makes me feel like there is something I can do to make things easier for my husband, mentally and emotionally, not just physically.

You may want to consider finding a new doctor, too. My husband's original primary care physician was competent, but very brusk and impatient, and not someone you could talk to. When I finally insisted that we had to talk to a doctor about my husband's problems, I suggested that we find a new doctor, because anything to do with mental problems is so hard to discuss. I had wanted someone who specializes in geriatrics, but they are few and far between, and many of them only work with patients in nursing homes. One of these recommended a doctor to whom he refers patients who are elderly but not yet confined to a nursing facility. The new primary care physician is a wonderful, patient, understanding man. I recently asked him if we needed to continue seeing the neurologist, since she very obviously does not like caring for AD patients (which is understandable, even if her behavior was deplorable.) And he said no -- now that the diagnosis is made, there is nothing a neurologist can do for an AD patient that a good internist can't do. This doctor is very willing to consider alternative medicines, talk with us about our concerns, he's gentle and kind and sensitive, and that's what YOU need whether your husband wants to participate in the discussions or not. Don't settle for less.

gosh--thanks so much to all of you who responded to my post. I'm just getting online for the first time today, and I'm overwhelmed at the kind messages I've received from some of you. The really hard part for me right now, is I'm doubting the diagnosis. Most of the time, my husband seems quite "normal". He has always loved TV, so it really isn't a new behavior for him to sit there all day watching Fox news and old movies. He can't button or unbutton his shirts and pants, but he can do lots of other things for himself. He is, and always has been a very pleasant person to be around. He has sort of "skipped merrily through life, whistling a happy tune"--the eternal optimist. The problems have been related to my personality trait of wanting--or needing to be "right", and I've spent a lot of time over the last few years trying to prove to him that indeed I am right, and he is "wrong". No one (and I'm relatively sure of this) has ever seen him behave the way he has with me. For years, whenever I disagreed, questioned or in any way challenged him, he would go into a rage. I'm talking, getting up from his chair, charging at me shaking his fists at me, telling me that I'm trying to make him look like a _____idiot. The more I tried to reason with him, the worse he got. It was simply impossible for him to sit and calmly discuss something with me. For the last month or so, I've tried very hard to refrain from even suggesting that something he says might not be exactly right. He's been a very successful person, and admits to having a big ego. When the neurologist said to us, "this is dementia", it was like a switch flipped for me, and I seem to have more of a feeling of compassion for him, and a lot of the anger is gone. I don't know how long this will last for me. There are a lot of issues with our relationship that I've accepted as having no resolution. Now it seems like many of those issues are less important. There are a lot of things that I need to sort out, and I know it's not going to be an easy road. I know that something is definitely wrong with him, I'm just not sure that a diagnosis should have been made so quickly and based on one minimal test. Boy-- that scares the heck out of me--makes me wonder if I could "pass the test". Anyway, I'm very glad that I found this forum, and I'm very grateful to all of you who are going through so much in your own lives. I'll be back.

Connie

I gently told my mother she was diagnosed with dementia after reading much material about it. One expert claims that the person may not even remember the conversation later on. Some people have even helped with the future planning after being informed of their diagnosis, ones who were able.

Everyone is, of course, entitled to do as they wish. I wouldn't want a neurologist or psychologist with the bedside manners of a puma to tell the client either. However, truth is a weapon of knowledge and although the 'revealing' may be devastating, personally I'd rather know than be either left out of the loop or told something else that was not truthful.
What I have encountered more than just forgetting is denial. In which case, the truth has been divulged and if not accepted then there is really not much else you can do but care for the person. BTW, this is by no way a condemnation of how others divulge the information. It's a choice. Perhaps it's my job and therefore an inescapable reality. Believe me, my delivery couldn't be more sensitive as i am acutely aware of the ramifications...all of them.

Well interesting opinions here. My Dh was diagnosed 5 weeks ago at the age of 53. Two weeks later his father passed from complications of Alzheimer's. Personally I don't think my husband knowing everything will benefit him. I don't think giving him no hope will keep him fighting. As far as Doctors they give you no hope, no direction etc. Unless you think handing you a pill is hope? I do not! Thank goodness he has not picked up on that. Yes he understands he has Alzheimer's but he doesn't know that the statistic's for a long life are not good. And I don't want him to! I want him to have hope, I think the power of positive thinking is a powerful thing. It would be so different if clarity was all there. But he's 1/2 here, why would clarifying the fact that you have uncureable Alzheimer's the right thing to do? It would only depress him further. I want him to stay up for as long as possible. As others have said it's just my opinion but interested in how others think giving someone no hope is a benefit? Rkg

MY MIL IS 81... AND SHE KNOWS SHE'S SICK AND LOSING HER MEMORY. WORST OF ALL, SHE FEELS "LOST" AND "ALONE", EVENTHOUGH WE'RE ALL HERE (SON, DAUGHTER, GRANDCHILD). SHE UNDERSTANDS THAT THERE'S SOMETHING WRONG WITH HER HEAD. SHE ASKED THE OTHER NIGHT WHAT DISEASE SHE HAD. I TOLD HER... ALZHEIMERS. SHE SEEMED TO UNDERSTAND. I DON'T THINK SHE RELATES IT TO BEING FATAL; BUT, SHE RELTATES TO THE FACT THAT IT'S ROBBING HER OF THE ABILITY TO REMEMBER AND REASON.