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• Housecall
• Alzheimer's caregiving
• Living with cancer

• November 16, 2009 8:12 p.m.

  I didn't realize I had already posted a comment!! I'd just like to add something pertaining to the comments from people who claim it is hurtful to tell someone he or she has dementia. I would still always say the person MUST be told; however, if telling does seem to cause undue pain or stress, well, don't bring it up again!!! Most people are more resilient than we realize and can handle the truth.

  - Carol

• October 6, 2009 9:08 p.m.

  I talked about it with my husband from day one He knows he has a problem and I told him I would do anything in my pouwer to help.I let him do more or les what ever he wants I asked him to be more active, and he is He walks drie four times a week about 4-miles he gose to the gym two times a week and we bowl two times a week.he dos clean up jobs around the house ( somtimes thrie days in the row the same thing) but so wat? I kiss hug ans love him as much as posible,sure I get frustraited some times but I tell my self it could be wors,and yes I know it will get wors, but for now we take what we have and make the best of it. O yes we also jointa AH resurge groep It worked for us Paula

  - Paula

• October 6, 2009 7:06 p.m.

  The telling of the ALZ diagnosis to my spouse and myself, regarding her case, was a horrid mistake. So foolish and harmful, and hurtful and pointless was it, that I cannot picture the setting wherein it would be, or could be, beneficial and helpful. I could not help but think then, five years ago, what I believe with a certainty now: The Medical Profession Has Not a Clue as to the Right and Wrong of how to act with the ALZ patient. Shame, shame, shame on them. Sorry. but shame on them. We are into this very Strange World all alone, with virtually no intelligent help from the medical professionals. Telling the Stricken One the probable diagnosis is, from my experience, an insane, senseless, and cruel exercise. Don't Do It. And. Stop Doing It. I am aware that the weight of the garden variety arguments runs counter my objections. Such, however, does not by that alone win the debate. george

  - george

• July 10, 2009 9:48 p.m.

  My mother has just been diagnosed with Alzheimer's dementia. With regard to driving, should we stop her or wait until she is stopped (by some mishap)?

  - shakurah

• May 18, 2009 2:04 a.m.

  I would appreciate your advice... My husband's dad and one aunt and uncle were all diagnosed with AD (his aunt with early onset AD). His dad is in the final stages, and his aunt and uncle have died. I am concerned because my husband's personality seems to be changing in the same ways that his father's did long before the onset of the "usual" symptoms of AD. Has anyone else noticed signs like these: becoming more extroverted and uninhibited (having to talk to everyone he sees at church, feeling like he should still volunteer for the high school football concession stand even though our youngest graduated 3 years ago), using poorer judgment in social situations (talking in church, not realizing that others might overhear his remarks about them, talking too much, taking way too long to get to the point), having trouble reading a map (used to be second nature for him; he's a civil engineer), can't remember how to use a debit card (he asks me)? Could these be early AD symptoms even though they're not the top 10 warning signs? I hate to worry him if they are nothing to worry about.

  - marilyn

• May 15, 2009 9:31 p.m.

  I think that most people who do not tell a loved one about the diagnosis of dementia do this because THEY cannot deal with the diagnosis. A person diagnosed with dementia ABSOLUTELY has the right to know - not only so he or she can get legal affairs in order (in our case my mother's legal affairs had already been dealt with prior to my dad's death), but so he or she understands what is happening - as much as possible. My POA sister said we absolutely could not tell Mother about her diagnosis. Sister threatened legal action if I said anything so out of fear (she's a very good lawyer), I said "memory disease" rather than Alzheimer's. If I had to do it over, I WOULD have been totally honest. Even so, when my mother worried she was "off her head," it really helped her to know she had a DISEASE and wasn't simply going crazy.

  - Carol Hillman

• May 12, 2009 8:39 p.m.

  Today was very disturbing to our family. My mother (78) had a small lunch bag packed with her nightgown, remote control and a book, which she explained her mother (deceased) was calling to come get her to go on an outing. I asked her about it and she went on to explain she went to some kind of flag ceremony and then had lunch with people that were in need of assistance. She takes medicine for her under active thyroid, however she gave my father a hard time about taking her medicine. I'm not sure she took it and dad is at his wits end with her (worrying). I made an appointment to see her doctor and read articles about it, so now we have to see if it is actually a problem with this awful disease, or not. My mother came from a family of eight children and all but two have had the disease, three are deceased and the other two are afflicted with it. The articles I have read online have been extremely helpful.

  - Jo

• May 5, 2009 7:40 p.m.

  Thanks to everyone for their comments. I am off to my parents to help them get organized to move closer to us "kids" Luckily they are financially very secure but my Dad who is 82 healthy and sharp as whip is struggling with my Mom's (77) memory loss. I am worried about what it will be like as I have not seen them since Thanksgiving. They have had a 53 year love affair so this is very very tough. Dad realizes he needs to be closer to us and give up his vacation retirement home they have enjoyed for 15 years. All the comments are so helpful thank-you every one, especially Claire who seems just like my Dad. My Mom is going to the Dr and is about to lose her license. She knows something is wrong but is not sure what - she is not officially diagnosed but she has all the signs. She thinks the Dr. is against her - she knows all of us by name but forgets that my sister moved across the country to my city last year and things like that. My parents have a cruise planned and I am worried that my Dad will go to the bathroom in the airport or something and my Mom will wander off and forget where he is. I will talking to him about all this when I am there and I know he is looking forward to the support. I was thinking they should both get medic alert bracelets that way Mom won't feel singled out and she would have identification at all times. What do other people do about this issue? thanks

  - Tracey

• February 2, 2009 5:17 p.m.

  My grandmother was initially diagnosed with mild cognitive dementia and then two years later with Alzheimers. It has been a very difficult process. She (and several other family members) knew something was very wrong early on. She saw a neurologist and went through diagnostic testing. The early diagnosis gave her time to get her personal, legal, and medical affairs in order. Many family members are still in denial about her condition, which has made things very difficult for her. It's been difficult placing her in a memory care facility when other family members tell her that she's just fine and they don't understand why she can't be at home. It would be cruel to withhold information about a person's medical condition unless they were advanced enough that it would be impossible for them to understand. My grandmother went from being a strong, independent woman nearly larger than life; to being a clingy, fearful, frail little old lady in a matter of two years. Alzheimers is a very ugly disease that takes a person away from themselves and their family small bit by small bit. Each and every day (sometimes every hour) is a new experience with new triumphs and challenges. My grandmother routinely surpises me. She doesn't know her own age or birthday, but about a month ago she told me she couldn't believe that I was 41. Guess what, I am 41! I was shocked. Alzheimers is a roller coaster of symptoms and emotions, seek all of the information and support that you can get!

  - Sherry

• January 30, 2009 2:52 p.m.

  My husband has Fahr's syndrome (degenerative genetic disease that causes calcification of basal ganglia & cerebral cortex), and much like AZ inolves dementia and related symtoms. We waited one year in horrible panic while a neurologist would not diagnose because it is rare...even though CT & MRI suggested Fahr's. What a relief when we got the word from a specialist who took on the case. Can't tell the medical profession enough about finding out and telling us, rather than letting it slide...it was horrible to sit there in ignorance and helplessness...like a victim. Knowledge helps one face and cope, communicate and empathize. I know this for both myself, the caregiver who felt impotent to help us understand; and my husband, who felt confused and misunderstood, and under a death sentence without knowing the crime. PLEASE TELL.

  - Diane C

• January 20, 2009 4:30 p.m.

  I lost my husband of 56 years to AD this past July. Our MD told both of us that he had AD. My husband was so relieved that there was a name for something that was causing him so much distress. He was a retired Colonel but somewhat medically unsophisticated. I don't think he realized what he was being told. This was 6 years before his death. Whenever we would be with friends or children he would always say "Tell them what I have." He couldn't remember the word but he found comfort that he had a disease and he wasn't just losing his mind. This is just my experience and I feel that each person is different. We all just pray that we do the right thing for our loved one.

  - Jackie Kellly

• January 15, 2009 10:07 a.m.

  My mother-in-law is showing signs of Alzheimer's or dementia. She cannot remember recent events, often tells the same stories over and over about something that happened fifty years ago as if it were last week, tells complete strangers inappropriate things, misplaces things, is argumentative, has extreme mood swings. My husband and I fear that she is incapable of caring for herself as she either won't take her meds unless we give them to her or she wants to take all of them at once. She sits in the dark with no lights or TV on and often refuses company. We are worried and she claims that nothing is wrong and we mistreat her. Is there anything we can do? She doesn't think anything is wrong- we are the "crazy ones" and she won't talk to her doctor about it.

  - Mary

• December 13, 2008 7:28 p.m.

  In the beginning, when I first suspected that my Mother had a problem, I tried to discussed it with her, and had no success. Finally, I took her for all the tests and ultimately, she was diagnosed with Alzheimer's. It was only then, and on the specialist's direction, that we told her she had the disease. It devastated her...and I agree with Barb and Sophia, in the respect that this disease (initially) affects the short term memory. After repeated (and inexperienced) attempts at helping her "understand" her condition, I now,(being more knowledgable) never mention the word alzheimer's to my Mum anymore, as she has no idea or recollection that she was diagnosed with the disease in the first place. Whether it's the memory, or the the denial, it's not fair nor humane to make Mum constantly accept or remember that she has this affliction, over and over again. Reminding them is forcing them to "re-live" the diagnosis. Mum knows she has memory issues, and I acknowledge her concerns by suggesting solutions such as writing lists, reminders and post-it notes. Keeping her active and involved in daily ways to maintain the memory she has, is much more productive than a daily reminder that she has an incurable disease. :)

  - Alison

• November 24, 2008 8:13 p.m.

  I have not told my husband that he suffers from Alzheimer's disease exactly.... but he knows he does not remember a lot of things. He is 81 and he has the symptoms like incontinence as well as he has great difficuly walking even with a cane . He is also hard of hearing. He does not drive anymore... I have to repeat a lot but he is very mild and very loving as well as appreciative for what I do for him.. He is on medications for it like Aricept and Ebixa and it seems to prolong the effects but still he is not the same man he was before...he has no interest in anything and likes to sleep in a lot. he does not go for walks anymore because he can hardly walk without getting tired and dizzy...so he is gaining weight. Would anybody have suggestions for me to make him do things to keep his brain busy? He reads the newspaper but never finishes a book. he keeps reading it over and he was an avid reader. This is very hard on me. Thank you for any suggestions..to make it easier for me.

  - Claire

• October 30, 2008 2:26 p.m.

  I have have Alzheimer"s. At first I denied it to my self and to my dear dear wife. I had a secondond opinion. Yes I have it, but I prefer to say that I "have a mind boggling problem", and that is that. ALSO, with this knowledge, I gave my car key's to my wife. At first she qestioned me about this. Now she UNDERSTAND'S my thought's. I am even off the auto insurance. I told my friends,of this problem I have, now I don't see surprise look's if I should make a blurb. Lou

  - Lou

• October 30, 2008 12:46 a.m.

  I would suggest to physicians and caretakers that prior to accepting dementia as a final diagnosis, that a neurologist be consulted to deteine if the patient has hydrocephalus. This is a condition which has three major symptoms: dmentia like symptoms; difficulty walking and manintaining balance; problems with unrination incontinence. Shunt surgery in many cases solves the problem and the patient returns to a pre-diagnosis state of clarity, focus, and good ambulation. Shunt surgery has saved many people from an inappropriate confinement to a nursing home with the incorrect diagnosis of dementia. Caregivers need to be advocates for the people under their care. Doctors need to be vigalent to be sure hydrocephalus is considered as a first diagnosis and then ruled out of consideration by further testing. But if the conditions of hydrocephalus are found, then the doctor should take appropriate action. No one knows how many people are incorrectly diagnosed with dementia who really suffer from hydrocephalus. More information on this condition needs to be made available to the general public. Thank you.

  - Michael

• October 29, 2008 2:21 p.m.

  A person with Alzheimers has problems with short term memory. If you tell them they have Alzheimers they will forget it. If you really want them to know they have the disease, then you have to continually tell them. I think that is cruel, since they will have to relieve the pain each time you tell them.

  - Barb

• October 29, 2008 9:04 a.m.

  The point is to tell the patient at the beginning stage when first diagnosed, while they are still mentally competent. Hopefully a patient is diagnosed early enough to be able to understand what's happening to them. This gives them the chance to direct their future care, get legal things in order and participate while they can. As the disease progresses and if they become agitated, then there is no sense in continually telling them they have Alzheimer's. At that point it serves no purpose as they don't understand. It's important to deal with it at the beginning when they can make decisions for themselves. So think about what you would want for yourself. Would you want to be told? Let your family know your wishes.

  - Sophia

• October 28, 2008 6:51 p.m.

  We informed my mother of her Alzheimer's diagnosis when she was first diagnosed. The problem occured on several future doctors appointment when something would be mentioned about her Alzheimer's and it was like she was being told for the first time, because she had forgotten. She lived through that horror several times before we stopped using the term Alzheimer's

  - Gail

• October 27, 2008 11:25 p.m.

  Yes, I feel a person should be infomed that they have Alzheimers. They may go into denial at first but as they start to accept the disease they can plan for the future. The best thing a person with any terminal illness can do for their loved ones is to leave detailed instructions for their wishes in the end stage of the disease. When a person has a chance to write letters, say things that otherwise might go unsaid and to live a little fuller it somehow feels complete to their loved ones. I've been my Mother's caregiver for years now and because we didn't plan sooner I have to make many decisions based on what " I think" Mother would want and also their are so many legal issues to contend with. Long term care can sometimes mean giving up everything your parent has worked so hard for all their life. If you don't tell your loved one they have a terminal illness like Alzheimers then you loose out on a few years of "look back time" when it comes to considering a nursing facility. They take all your assets if their in the patients name or they have to be in someone else for a period of years.The sooner you can plan the better for everyone.You can focus on the quality of life instead of the quanity.

  - Mae

• October 17, 2008 4:46 p.m.

  I do not think the patient should be told. I belong to a support group for caregivers, and 2 of the 3 people who told their spouses, regretted it, since it caused much sadness and depression and weeping, for long periods of time. The 3rd caregivers' husband had some sadness in the beginning, but of course, that passed as his illness advanced. I do not know of any others of the 25 or so people in the support group who told their loved ones. My husband battled Alzheimer's for 14 years and I feel that he would have given up much sooner had he known and understood the reason for his problems.

  - Barbara

• October 14, 2008 9:41 p.m.

  My husband was in complete denial that anything was wrong. When the Dr. told him that the MRI and all tests showed he had Alzheimer's, and that he had to quit driving immediately, I thought he would fight it, but he took it calmly and even accepted the fact that he couldn't drive. It was a relief to me. Later he even told people that he had Alzheimer's Disease.

  - Carol Chambard

• October 14, 2008 5:46 p.m.

  When we thought that my Dad might have Alzheimers disease, we decided that we should tell him. That is tell him what we thought. He told us that he did not have this diseas, but he accepted to go for some tests. Well he was right. But now he pays more attention when we talk to him, when we ask him things. He does make lists and he does ask us to repeat when he is not sure what we are asking of him. He also accepts to have one of his childre ( he has a few, lucky him)when he goes to any doctore's appointment.

  - Carole

• October 13, 2008 4:52 p.m.

  My mother does not like to amit she is wrong to us children , if we try to bring up the subject she gets very rule and upset. the dr felt it was better not to tell her to help conrol her other health problems , she seems to think she is crazy and we feel the same . Some days are unbearable where as other days are the complete opposite. she 's 93 and can be so sweet at times . but i must say she has her days,

  - Becky

• October 12, 2008 12:28 p.m.

  my mom has livd with me for 4 years,she has dementia.the first year she was here she would ask me what was wrong with her and why she could not live in her own home.i used to explain dementia to her but,it only upset her,i do not use that word anymore and when she askes i simply tell her she is getting older and has some memory issues. that seems to satisfie her and in seconds she forgets what we were even talking about.i love her dearly,and yes this is such a cruel deasease for her and me.i take one day at a time with her. it can be very lonely and confusing.but i always have a smile on for her and lots of hugs.

  - shari