Should a person suffering from Alzheimer's be told he/she has the disease?

Babydoll62,
Yes, I agree, people should be told.
Back in the day, my father's doctor told me he could tell my father did not want to know he had rapid oat cell Ca of the lung, so the doctor was not going to tell him. After removing one lung, my Dad lived one year
Do you think he knew by then?
Another person, married to my mom, died with the same cancer within 3 months because he refused blood transfusions.

The time spent helping my Dad that last year was important to me. He was living with his wife, and there was no actual caregiving going on, but he would call me to take him to tree surgery jobs he would supervise, important to him.
That is where I came to understand the subtle difference between dying of Ca, vs.
Living with Ca. It is a matter of the heart when one has a terminal illness diagnosed.

People are waiting to meet you and encourage you here.

My opinion is yes they should be told. My mom was told but she is in denial and in her own world and everybody else has a problem except her. She also has paranoid schitzoaffective disorder. And dementia. She also keeps thinking she is being released from the nursing home any day now. T is makes her happy. I don't want to tell her she's not being released and take that happiness away plus make her angry. I don't know if that's right either. She's been in and out for years but this time supposed to be permenant I guess that's why she thinks it's temporary Delusions and hallucinations give her false information

Yes, absolutely! They have every right to know what's going on with them and anything else that involves them

Off Topic-I take low dose nonprescription Lithium to protect my Brain. I'm almost 57, and having a few "Senior Moments." Researchers found that those with Bipolar Disease (which isn't ME) who were on the antipsychotics had a 33% risk of Alzheimer's (compared to 16% in healthy people.) But-THIS will blow your mind...the ones on Lithium (and they typically take 1200mg/day) had a FIVE percent risk. Now, I will allow that there could be an entirely different mechanism for Dementia in those people. But, low dose Lithium has been tried for those with Mild Cognitive Impairment, and the results are encouraging. Curry dissolved in coconut oil and medical marijuana are worthwhile, too.

You may ask yourself "Why is Lithium-cheap, and the original treatment for Bipolar Disease, not being used more often?" Well, there are medico-legal CYA problems for us physicians. If the Lithium level gets too high, it IS Lethal. This can occur from Suicidal overdoses, or diminished kidney function.  But, in the end, the antipsychotics are much worse. They cause movement disorders, and even Parkinson's Disease, they simply are less dangerous in 
 an overdose situation. 

This is not a direct answer, rather my experience. Thought I'd share. My husband has dementia, not Alzheimer's. I know several Alzheimer's patients at the respite care center I take him to who know they have Alzheimer's. I'm amazed at how different each patient is. Some discuss it matter-of-factly, others tell you as soon as they meet you, others cry in private. Everyone is so very different. Some patients with dimentia/Alzheimer's have anosognosia. This means that the part of the brain that allows the patient to recognize that they are ill or have something wrong is damaged. My husband thinks he's just fine and has for the entire seven years of his increasing dementia. He's 60 and walks with a walker and extremely slowly (like a man in their 90's). Someone told him he walks slowly and he asked, "I don't walk slow, do I?" I know of another man in the middle stages of Alzheimer's with what I think is anosognosia, as he thinks he's fine as well. His wife and I agree that it's good for the patient, but it makes it hard to discuss the future or do any future planning, like asking about funeral plans. It makes it that much harder for the caregiver. I try to play along, but sometimes I can't take it and have to leave the "conversation". Some days I can't take too much of him being the expert on every subject and he's so very confused and doesn't get anything correct and doesn't have any idea what he's talking about! Best wishes with what you decide to do.

I think it depends on the person. I'll give what happened to me and my mother as an example. I knew my mother was having memory problems when she moved to my home 4 years ago. But she would not take any tests, said her doctor back home said she was fine. She has always taken extreme pride in her intelligence so to admit that her brain might be dying was not something she could accept.

Occasionally she would recognize that she had memory issues, and would be sad because how could someone that is as intelligent as she was possibly have brain problems? I tried to tell her that she still had her high IQ, she just had some parts of her brain that were not physically well, and that there was no correlation between intelligence and dementia. That appeased her for a while.

I finally got her to sign all the necessary paperwork and add me to bank accounts, etc, not because she felt she could not handle them (but she was having troubles at that point), but because her older sister was in a nursing home back home with no one to be able to be her advocate because she had not assigned those duties to anyone, and her husband basically abandoned her when they had to put her in memory care. So I told mom that she didn't want to end up like her sister, and it was important to get that paperwork done so that I could legally speak for her if necessary. It still took me a lot of talking to get her to agree to it.

Then she had a fall while I was at work that required 7 stitches in her head. I took her to a neurologist under the pretext that we needed to make sure she was okay after the head injury. When the doctor told her she had mild cognitive impairment, mom got mad, and would not go back in six months because she didn't like the diagnosis.

Now mom is in a memory care assisted living facility, and to this day will not admit that she has a problem and I don't tell her. I learned my lesson. When she is in the hospital I take the staff in the hall and explain that she has dementia, and that she will need constant supervision. I do this so that mom won't be upset, I said something in front of her last time she was in the hospital and she asked me why would I embarrass her like that, and was very upset.

Good luck.

I agree with those that said it depends whether or not they have ( or still have) the ability to understand what this means. I, also, would take into account what their reaction would be if they knew. My mom died of Alz. and we never told her that she had it. It would have crushed her and we couldn't see any benefit in telling her.... Blessings to you and your family...it's such a hard road to travel. Lindaz.

My Moma and I found out in August 2002 that she had Alzheimer's and I thought ok, we can handle this. The month she passed which was Dec. of 2009, she had 5 siblings to pass away from complications of Alzheimer's in 12 to 18 months before her. The family just didn't know what to expect next. It was so very hard on everybody. Now my oldest Aunt has Alzheimer's and she just turned 95. She and Moma were very close. They played Scrabble all the time. To answer the question: YES!!! Anyone that has Alzheimer's, Dementia, Cancer, any kind of disease that might have anything to do with ending your life, you have a right to know. You need to have time to get things in order if you haven't done so already. You'll also find out those that really love you and those that don't. You will find out so many things in the beginning before you start forgetting. I found out this past April that I have mild Dementia and already a few of the people that I have told are pulling away from me. I don't understand why!!! I'm no different! I haven't changed except I do have problems remembering words and I don't drive anymore because I get lost easily. And what hurts so bad---all the way to my core---is one of those people is my beautiful daughter. I have to admit that we were pulling apart before we found out about my dementia, but I think it's because it started when she quit going to Church and started changing. I'm not going to be around cussing for anyone. God is #1 in my life and always will be. So yes, we should know that we have Alzheimer's or Dementia disease so that we can prepare ourselves. God Bless each and every one of you.

Yes, the person who has been diagnosed with Alzheimer's should be told. The person should be told in a way that he or she can understand--and it might take a social worker, care coordinator or advanced practitioner nurse to do it. This is especially important if the person is well enough to put his or her own affairs in order (will, living will, power of attorney) and discuss what he or she wants done. The person might want to visit memory care facilities, continuing care retirement facilities and independent living/assisted living with memory care facilities and decide which one(s) he or she would like to live in and make financial arrangements. A person might want to create his or her own care plan. A person might want to complete 'bucket list' items (trips, visits to family, etc) while he or she is able. A person might want to sign a DNR order. A person might want to distribute family heirlooms to relatives. A person might want to make his or her own funeral arrangements (for example, selecting music to be played, select readings and help the pastor plan the sermon). In my church, when you join, you are asked to list your favorite hymns and your favorite verses. My minister told me that he asks these questions innocently. He said that most people don't realize that he's asking questions relevant for planning a funeral. He's known for his weddings and funerals.

In the past, caregivers have answered the question, "Should I tell...?" with a resounding No. People who were dying were not told that they were dying. Children with serious illnesses and disabilities were not told about their health problems. Caregivers made decisions and didn't involve those that they were caring for in the decision. This proved to be a huge mistake. People were subjected to treatments that they might not have wanted. When it came to the medical treatment of the very young and the frail old, they were treated more like pets and not like people. 

I know what can happen when people don't share important information with the seriously ill. My father was dying, but hadn't entered hospice yet. My mother and brother snuck off to the funeral home and the cemetery to make funeral arrangements for my father while he was asleep. I was tasked with keeping an eye on him. He woke up and asked me directly if they were making his funeral arrangements. I told him the truth. I told him that I was sure that, when the time came, that there would be a nice, simple service, officiated by his pastor friend, with family and friends. I told him that they had selected a very pretty cemetery near where he had worked for his final resting place. I got into trouble with my mother and brother, because I had truthfully answered my father's questions. They wanted me to lie--something I would not do.

Being a caregiver for those with dementias I avoid using the terms "Alzheimer's or dementia" & instead refer to it as a fuzzy memory or memory issues when talking with my clients.

In my case, my husband has Lewy Body Dementia. He is 76. He has worried for years that he may develop the disease since his Mom and aunts had the disease at the time of their death. As it turns out, this is not the same dementia he knew about and worried about. I have not told him, all proper "papers" have been in order because I don't think he'll handle it well (whatever that is). I pray that as the time passes he'll move further WITHOUT pain!!!

Why tell them. There is nothing that can be done. And the doctor probably already has told them, if they are able to understand. You'll probably just get them agitated, and if that far probably are unable to legally sign any paper. Let it go.

We told my mother she had Alzheimer's. At the beginning she got a book and did a lot of research. Now that she is in later stages, when she gets frustrated and says that she is losing her mind we remind her that she has Alzheimer's. She is fairly accepting of that. She does have some aversion to the word dementia though. She always gets upset when she hears that. I think she thinks it means demented and has a negative connotation. We never use dementia only Alzheimer's.

My father is 94 and is normally mentally sharp, sweet and funny. We have always joked that CRS (can't remember squat) runs in the family. Because his doctor prescribed Aricept and Namenda, Dad realized he had age-related Alzheimer's and Dementia. These meds and Zoloft, which helped when he began to get grumpy at night, made an enormous difference. When he lost his hearing, he became very irritable, so we both read up on how best to cope and dealt with it humorously (notes, hand gestures and tap dancing wildly). Now my father jokes, "The great thing about Alzheimer's is that you meet new people everyday." When a light is left on or something is amiss, we blame it on the dog, who is also 94 in dog years. We do have our low moments, but they pass. Love, compassion, humor and a great doctor are the best solution.

My Dad was an intelligent, take-charge person. When he started having trouble, he suspected that he might be starting down the path of dementia. He and my mother already had moved to an independent-living cottage in a CCRC. They went to their trusted PCP and asked her to check both of them regarding their mental status. She continued to monitor them; only my Dad was declining mentally. He called it "memory loss." Mom and Dad continued participating in social activities as long as my Dad was able. They went to concerts and plays with another couple; my Mom worried that my Dad would get lost when they went to the restrooms during intermissions. They went to church and out to breakfast afterward. Eventually, my Dad was unable to get himself dressed for church, and my Mom would end up going by herself. He started having trouble handling personal finances (taxes, investments). He engaged an accountant to do their taxes. My brother found an investment advisor. I helped them move their assets under management with that firm, and we arranged for a monthly amount to be moved to their checking account to cover their expenses. My sister suggested that Mom and Dad join an Alzheimer's support group. My Dad would have none of it. He insisted he had only "memory loss." My Dad began having outbursts of temper which scared my Mom. I know Dad must have been very scared about what was happening to him. He started going out for walks, even in the dark, and this worried her. When my Mom went out on an errand, to the hairdresser, or to the pool for exercise, my Dad did not like being left alone. He started forgetting where she had gone and when she would return. Their social life came to an end. Eventually, my sister contacted Senior Helpers so that a caregiver could come in whenever my Mom went somewhere. The first time was in May 2012, when I took her overnight to a bridal shower for my daughter-in-law. In July of that year, I took my Mom to the wedding (2 nights away); Dad was not well enough to attend the wedding of his first grandchild. Dad did not like having caregivers coming into his home. We called them "housekeepers." Soon, Senior Helpers sent a male caregiver, and Dad accepted him. They had good conversations on some level. Dad's intelligence and verbal ability were still there. Mom was bearing a heavy load, caring for Dad entirely alone. They were both 85 years old. She was worried that Dad might physically attack her during one of his outbursts. She was small, weak, and had very poor balance. Dad could have knocked her over with a gentle push. She was trapped at home except for quick errands, her own doctor visits, and going to church. My sister and I decided that it was time to talk to Mom about moving Dad to the Memory Care unit at the CCRC. She could visit him daily for as long as she liked. We took her to lunch, and she acquiesced. The move was scheduled for May 2013, and we planned it with the CCRC's social worker. We didn't tell Dad ahead of time. My brother and sister took him out to lunch. Movers took some furniture to his new room. I met them in the hallway. My brother took a big swallow and said, "This is your room now, Dad," and Dad's eyes got as big as saucers. The four of us walked in. We sat down and listened to Dad. "Why is our bed here?" he asked. We explained that he needed more care, so he would be staying here now. "Where's ________?" he asked. We calmly said Mom was at the cottage. "I want to go home," he said. We reminded him that this whole community is his home, and here in Memory Care are nurses who know what he needs and will take good care of him. After a long while, I went out and got two nurses. They came in and asked him to lie on the bed so they could check him. He complied willingly. We three "kids" said goodbye and told him we'd see him soon. Dad died of dementia three months later, in August 2013. Mom lived in her cottage until May 2016; she died in Skilled Nursing in August 2016.

Depends on person. My husbands first visit after MRI was told just getting older. More signs took him to neurologist said MCI. Next year MCI/ALZ. He once saw a paper I wrote he had Dementia & he said i do not. Later he asked why can't I remember things? I said your getting older & your wires in the head are just getting rusty. I'm younger than you so if you want to know something just ask me since mine haven't gotten rusty yet. Was satisfied & I made all arrangements to have all important papers reviewed as we were getting older. That was 9 yrs ago. He has no memory but does dot to dot & 100 pc puzzles when awake for hrs. Keep them occupied so no thinking what's wrong. Tell them you love them & they will always be safe. But...all are different. This works for us. I never leave him alone so he feels safe. If I go I have a caregiver w him.

Yes! Many important plans must be made before the disease advances and get all the persons wishes spelled out with an Elderlaw Attorney. Critical before their judgement could be called into question of it has not gotten to that point already. Need POA and DPOA, all of it. Hopefully, all family will be participants because this is where it can get ugly.

Be honest when the occasions arise. She will ask questions because she cannot remember. Simply tell her that it is okay. The reason you cannot remember is because you has Alzheimer/Dementia. Understand she will not retain the information and will be telling her this many times.

ERIN M 60.You're correct.
Mi siblings and mi self, expound insofar as the light to mild-dementia,and he understand this, and we remind him, at times, and as the dr., yes,the doctor did not also flat out cite it is full blown alzheimer's or even near that yet,thank GOD.Time will tell,but he know he has light to mild dementia,and is doing well so far with his medication,and getting out so much as he always has,a golfer for a long time and great at it!I take him out three to five x a week, and that helps so much,til he is back to his beloved driving local again."
But,i feel yes, you're to tell him or her and not keep it from such loved ones.I would want to know,and i would want to be reminded,if i happen to 1 day forget i have it.I would want to know. God bless us all.
adios.

My aunt's doctor saw her in the hospital when we thought her 'sudden' lack of memory was from a stroke. He told her the brain scans showed only narrowing veins, arteries, and were age appropriate [she was 90]. No sign of stroke. Thinking it was either TIAs or beginning Alzheimers, he didn't know yet. However, he told her she could no longer live alone or drive, because she will get these 'forgetful spells' again, and might forget where she was, or even that she was driving. That would cause an accident, maybe killing someone.

Aunt Rose was terrified of the word Alzheimers. The doc allowed us to not name it, but told her what to do. That included POA and other legal work soon after with an elder attorney. We gave her 3 options and wrote them down so she could reread if she forgot them. We told her we'd help her move, or she could have daily help, live with us [or visit with till Christmas and then decide.] That way it became her decision and she had time to let it sink in. Every situation is different, but I agree that the Dr needs to talk directly to the patient, and I was also there.

we told our father he had old timers because We didn't fully understand that he would die from dementia. That was the stated reason on his death certificate. When I googled death from dementia I saw that he was a textbook case in the last six months. I guess I didn't fully understand that Dementia COUld and WOULD kill him, that it has full capacity to do so. We never told him because we didn't know ourselves. We just thought he had profound memory loss. Perhaps that was our denial.

I would say yes; they have every right to know. Then see how it goes. Some people are open about their diagnosis and others are not. My mom never accepted her diagnosis - it made things so much harder. Others accept it and are involved in planning for the future and making important decisions which I believe is their right.

Absolutely! With compassion and reassurance of your support throughout this end-game disease, you should be there to explain many times, with examples and reminders of the past, present and future. This person has a brain, though dimming, and deserves to be informed to the best of his/her comprehensive abilities until the very end...not left in a cold, frightening, dark, void all alone.

Absolutely! With compassion and reassurance of your support throughout this end-game disease, you should be there to explain many times, with examples and reminders of the past, present and future. This person has a brain, though dimming, and deserves to be informed to the best of his/her comprehensive abilities until the very end...not left in a cold, frightening, dark, void all alone.

In my case, her MD just was obstinate about telling her, telling me privately that he felt she knew. The advice whether to tell her or not tell her on the internet is quite evenly split. While we dithered about what to do, we always spoke to her in terms of cognition and the earlier diagnosis of mild cognitive impairment. We worked with the Social Worker, who felt she should be told, and her MD (who serves as both her PCP and her Hospice MD) should have done this. Ultimately, she ended up seeing the diagnosis in the hospice and home health care books, and didn't react strongly one way or another - it depends on the day whether she acknowledges it or not.

Mind you, in our case, she was simply "mild cognitive impairment" until her last hospitalization and anesthesiology event, which really triggered the Alzheimer's. We had just moved her into independent living three weeks earlier, and being told three weeks later that she had Alzheimer's was awful, because I would have made different decisions had I known. But given that her last hospitalization set off a rapid decline from just forgetful to having her license revoked, and moving onto hospice, it was kind of a mess and we had no real guidance as to what to say or do. If someone had said it was Alzheimer's earlier (and I assure you, her MD kept saying MCI until January 2017), all would have been handled much differently.

All of that to say that sometimes, it really does just depend on your situation, where your loved one is in the process, and the cognitive abilities of your loved one. Honesty is generally a good policy, but there are many other factors some need to weigh in before. That's the only think I learned in researching how to break it to my MIL - it's a very divided position!

Best wishes...

Sometimes they can say "Bullcrap!" and deny it. It depends on the person.

Any diagnosis should be shared with the person diagnosed.
They know "something is wrong". You know if your body is not just "right"
If they choose to talk about the diagnosis or not that is up to them. But at least they are given the tools to work with, to plan, to know what will happen.
I think everyone should have the knowledge as to what is coming and what can and can not be done.
The exception to this would be someone that already can not fully understand. There are more and more diagnosis with older people that were born with Downs that are being diagnosed with Alzheimer's, depending on the level of comprehension they should be told of the new diagnosis as well.
The other important thing is..once the person has been diagnosed with Dementia (of any type) it can make decisions either easier or more complicated if there are other health factors that come up.
Do you get a colonoscopy? My opinion..no why put a person with dementia through the test.
Do you treat other cancers?
It does get complicated later. But early on when told of the diagnosis you can talk about things like this that will make your decisions later more valid.

I believe in total honesty - not to the point of being hurtful - but helpful.

My DH is practically 96 (September) and I don't pretend that his memory is the way it was. There are questions I am supposed to ask him almost daily and we run through them the best we can. What day is it, what year is it, how old are you, what is our address. No way to do the phone number now that we changed to cell.

No, he hasn't a clue about the calendar but he knows who he is and where we live. He doesn't always know he's 95 but he does know he's old, lol.

Pretending that there is no decline could make things worse for the person who knows he/she is starting to forget things. Getting his gut straightened out (Candida Support and Probiotics) has actually helped his memory! 2 months ago he would forget where the bathroom is - he hasn't forgotten now in several weeks.

Anyway, I vote for yes you should tell them but gently. Remember, we are going to be in this boat one day; treat the person the way you would want and hope to be treated.

It never occurred to me not to tell my husband he had Alzheimer's because he knew he had been tested for dementia. I would want someone to tell me if I was diagnosed with the disease. I never told my mother she had it because her doctor told me, "She can't tell the difference between you and a chair."

I think it is more important that the family recognize and accept the diagnosis of Alzheimer's versus dementia. Dementia is described as an umbrella or a broad term for the different diseases, with Alzheimer's being at approximately 70%. But some doctors dislike using the word Alzheimer's and tend to use dementia. If diagnosed early enough medication can be used to slow it down. My dad wasn't diagnosed accurately for 3 years and only diagnosed as dementia which was frustrating.  Sometimes by time it is diagnosed the patient won't understand but they know in the beginning something is wrong.  Everyone can plan and deal with it appropriately if diagnosed appropriately. However, it is difficult to diagnose in early stage.