Yes, absolutely, it allows the person to make plans for their future, just as they would if they were diagnosed with any other life limiting condition. There was a local man who became a vocal spokesperson and fundraiser for the Alz Society and was able to participate in an annual walk for donations for years after his diagnosis. The exception would be if the diagnosis is not made until the disease is more advanced, because by then they really aren't in a position to understand.
Yes, I believe someone should be told if they have Alzheimer's. Primarily because it's their body and mind and they have a right to know. Not being told is the same as being lied to.
I tell my mom she has dementia not Alzheimer's because her dr.has told me directly that she doesn't know if my mom has Alzheimer's. I guess I'm splitting hairs, but she forgets anyway. I wish I knew if she had Alzheimer's versus dementia. I know Alzheimer's is one of up to 50 different types of dementia , but I would feel more knowledgeable , and better able to plan the future if I had a more definable diagnosis.
It depends. If someone has dementia and is in denial about it, is having reasoning and memory problems it serves no purpose to try and convince them anything is wrong.
With my dad the best I can do is gently remind him that he's getting a little forgetful. He will accept that but would go nuts if I tried to explain he has moderate dementia. For us, it's just not worth the battle.
The afflicted "know" something isn't right. Upon finding out about their dementia, they can accept it or reject it. If accepting the diagnosis, they can make plans with family and friends and plot their course. If rejecting the diagnosis, play along and keep them as happy as possible, while explaining to them that they should sign you on to bank accounts and power of attorney "just in case" IF something happened later. You can't force someone to accept a diagnosis they don't want.
Fisherman, are you asking specifically in relation to your wife? Because I see that she presented with the beginnings of dementia two years ago, so presumably you and she have talked about - or at least around - how she's managing over that time.
How does she generally respond to the subject when it comes up during medical appointments and so on?
I feel it is a personal issue! My Mom's mother and brother had Alzheimers and she was anxious and feared it worse than death after seeing what they went thru. We chose not to tell my mom but in my heart I know she was aware of it and struggled with it for 10 yrs and finally passed and is at peace. I think she knew me she couldn't communicate but smiled and at times said I was her sister(she had none) but I spoke to her about everything pertinent and what was going in in life. The brain is an interesting organ we don't know what these patients comprehend or not! So its up to you! In most instances they must know!! know the person and what they can handle! good luck its not easy!
's Mom and broter had it nd she feaed it worse than death
My mother also feared getting dementia but her fear was she would be 'comitted' in a memory care facility. Even at stage 5 Alzheimer's she'd say, "You're never putting me in one of 'those' places!" The reality was that, at 92, she HAD to go into a memory care facility due to the confusion for her own safety. I had to trick her to get her there. She was irate in the beginning but has grown to accept it. For many of us there is no other choice.
I think they remember what 'nursing homes' used to be like... dark, smelly places filled with 'crazy' old people. Maybe they visited their own grandparents there. They remained scared about institutions ever since. Unfortunately, they have not been updated on how they are now... bright, cheerful places with activities, games, classes, music, good food, lovely surroundings, etc.
I hope I can accept my own failing mental and physical health and not resist the inevitable. My dad realized what had to be done as he declined (he lived in a board and care) and went along with the program. It made his last years so much more enjoyable knowing he was being taken care of and took a great load off my mind too. It's too bad that we have to have this disease at all.
Sue, your story reminds me of one told to me by my cousin. She went to visit her aunt (from the other side of the family) in the nursing home and asked her how she liked living there. Auntie was full of praise for the place, and then confided "I'm so glad they didn't put me in __________", which was the name of the NH she lived in. LOL.
Yes, the person should be told. If still pretty cognitive, they have to be able to set up POAs, wills, NRA and get finances in order. I didn't like doing Moms bills when she was still living home but by doing them I found where all the stuff I'd eventually need was. Made things so much easier.
There is no set answer to this question. In my case I am the POA of a friend who wasn't diagnosed until he was 88. (2 years after he retired). He never questioned his memory loss or any of his other symptoms. They just became a part of his life. Thus I felt no need to tell him he has dementia. I wouldn't lie if he asked but why burst his bubble if he is happy.
Yes - they should be told and as others have stated, if they are still competent, the POAs, DNR, Living Will, and Will should be completed. Also, co signor added to bank accounts, bill paying assigned to a trusted family member. A short and long term care plan must be discussed with siblings or children. It takes a village as caregiving is 24/7 if done at home. Peace and Blessings.
I don't get how so many of you manage to get an actual formal diagnosis and keep your loved one unaware. Why is the doctor talking to you and not the patient? In the early stages the patient should be the person addressed, of course as I have already said in the later stages it is different. Are all these specialists wusses? The person with dementia may choose to disbelieve, but in my opinion that is another topic.
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.
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 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.
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.
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!
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
With my dad the best I can do is gently remind him that he's getting a little forgetful. He will accept that but would go nuts if I tried to explain he has moderate dementia. For us, it's just not worth the battle.
How does she generally respond to the subject when it comes up during medical appointments and so on?
's Mom and broter had it nd she feaed it worse than death
I think they remember what 'nursing homes' used to be like... dark, smelly places filled with 'crazy' old people. Maybe they visited their own grandparents there. They remained scared about institutions ever since. Unfortunately, they have not been updated on how they are now... bright, cheerful places with activities, games, classes, music, good food, lovely surroundings, etc.
I hope I can accept my own failing mental and physical health and not resist the inevitable. My dad realized what had to be done as he declined (he lived in a board and care) and went along with the program. It made his last years so much more enjoyable knowing he was being taken care of and took a great load off my mind too. It's too bad that we have to have this disease at all.
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.
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.
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...
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.
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.