In my case, I share with others when necessary. When it comes to her helpers or people who come to the house or doctors of course I share it. When it comes to family members, I share as they come visit because I have to explain her behavior and not really knowing or understanding who they are. I have shared it with some of my closer friends because I have had to explain why my life style has changed. They have to understand why I can't go out anymore, why I quit my job, and why I am so reluctant to even go out when the helpers are here because I'm afraid I'll be needed. It's hard and complex. I have to admit though, when my grandma was first diagnosed, we didn't share it with anyone. We were in denial refusing to believe it was true and until it got to the point of where she couldn't be by herself anymore, we didn't tell anyone she had dementia.

I had to face this decision 13 years ago and my husband is now in his late stage. He was diagnosed in 2002 but was still in his early stages but yet he lost his self esteem immediately. Being one who always faced my problems head on , I had a serious discussion with him about how to face this problem. It is certainly only going to get worse so I decided we had to accelerate all our plans of not only enjoying ourselves as much as we can but also make plans for an early retirement as he was only 61 then. I also had to build up his self esteem and assured him that human nature is such that we will only be sympathetic and understanding if others know of your medical condition. I still had great faith in mankind. First thing was I met up with his boss whom I felt would see a deterioration in his work anyway so best to fess up. He appreciated the honesty and because of that was very supportive and promised him his job till he was comfortable to stop working. His doctor finally felt that in 2006 he should stop driving. I didn't have the heart to take away anyone's keys as that is symbolic if one's freedom. What I did was I took him for a long vacation of two months and in two months of not driving, by the time we came back he himself forgot how to handle the car well and started making excuses for me to drive. I have learned in over ten years of caregiving and understanding this disease of Alzheimer's , the key is not to argue with them and also not to coddle them. Let them do everything as much as possible until you see that they are struggling terribly. Once they stop doing whatever functions, they will no longer be able to remember to do it anymore. Reassure them that hey can do it and it's awesome that they are trying. You must build their confidence since they have a low self esteem and very scared of being alone. I remember the first time my husband was hanging onto me so tightly was one day we took him to a carnival and it was crowded. It was only in 2006 , the second time was when we were in China in a crowded street in 2008. Whenever he was frustrated not being able to remember, I used to reassure him that it happens to me too, then he feels better that he is not alone in his condition. I personally feel that the patient should not be told of his diagnosis as he will not be the one to make any sound decision of care anyway but most of us knows that ALZHEIMERS will rob our lives and everything else and the patient will only be in denial anyway but he will lose his confidence to go on. My husband no longer can say much but every morning he will still say, I am good for nothing I can't do it anymore. Which makes me very sad. The caregiver should also be prepared to lose her social life as family and friends will scatter no matter how much they say they care. It is a very hard disease for others to face and no one wants to be part if it. Only the caregiver who has unconditional love will be there for them.

Thank you, David, for your thoughtful comments on this subject. I plan to share your column with my caregiver support group.

I think that you should address these concerns with her doctor since she is so young. My Mom is 88 but at 63, you still have a long way to go and my concern for you is that it will wear you down so that you will soon feel older than your Mom's age. I can only tell you that last year felt like 5 yrs for me. And because the stress level was more than what I was use to, I really felt tired by the end of the year both mentally and physically. And let's face it, if we don't take care of ourselves, then who will take care of them. So, I would seek some professional help on how to deal with someone who may have many many more years of this level of confusion so that you can possibly get some tools under your belt to better understand and deal with this terrible disease that we are dealing with. God Bless you both and best of luck!

I have a very similar situation to bevgue610. My mother refuses to accept her diagnosis of early-onset Alzheimer's, and anyone who brings it up is immediately an enemy in her eyes. The doctors (and soon the DMV, since I'll be contacting them) tell her that she is not allowed to drive, but she simply doesn't believe them: "If that's how the doctor is going to be, I never want to see her again." She throws temper tantrums and screams and curses at me for having "stolen" the keys to the car that she "bought with her own money." The hardest part is, I really don't want to put her in assisted living yet because she is only 63 and I feel that taking away all of her independence (there is so much she can still do) would only accelerate her decline. She is not ready to die yet! Nor does she want to be surrounded by 90-yr-olds at the end of their lives. Most of her friends still work and drive, run households, etc. She can't do any of that, but she thinks she can. She won't admit that her 33-year-old daughter is running her household and cooking all the meals, paying all the bills, etc. She just lost her husband, my dad, a few months ago (also only 64), and he was the one who used to do everything for her without her realizing it. I don't know what to do, because I can't live here with her forever. She could help if he gave her specific tasks, but could never take initiative. I have tried hiring caregivers, but she gets mad at me saying she doesn't want a "babysitter." Also, a caregiver can't pay the bills, call the plumber, etc. Help! Any suggestions?

My mother was told by 3 doctors that she shouldn't drive but that doesn't matter when you can't remember. So, I finally took matters into my own hands and decided it was time to let the State know that she shouldn't be driving. I did and then they revoked her license, but that didn't matter either because she didn't remember that either. So, finally, I decided it was time to take the car away from her because taking the keys away wouldn't make much difference as she would call a locksmith to have new keys made -- we had already tried that. So, when I took the car away, she reported it stolen by me, her daughter. So, needless to say, I had to alert the police about what was going on. But the problem was that she didn't remember what was going on, so in her mind all she knew was that the car wasn't parked outside in the carport. A car that had been there for many years. This is when I began to understand the disease -- it's not like telling a child that they are not allowed to break the law, stay out past their curfew, etc., etc., You are dealing with someone that has no memory capacity-- much more challenging than dealing with a child. I then thought that once she had no car, that I wouldn't have to worry about her hurting herself or hurting someone else. But then that wasn't right either because she continued to call the police to report her car stolen and she continued to visit the neighbor's to complain about her car being stolen. There was no stopping her long term memory from working, but the short-term memory was gone. She really was in danger just living by herself -- something that I had not recognized until the car incident. She is now in Assisted Living -- much better place for her. She is safe and well taken care of. And as bad as it felt, because I really wanted her to stay in her house where she wanted to die in but that just wasn't the responsible decision to make for her. I wish there were easier options but like someone asked me early on in the process, "Would you leave a child home alone?" "Absolutely not!" I answered.

that is so sad, when they kind of know. :-(

It's a fine line in the beginning when the disability isn't blatently obvious.
I agree with Lassie, the issue of safety has to be first in this situation. If there's a remote possibility that your loved one can put themselves, or anyone else, in danger, the appropriate people would need to know. This can include a large number of people (family (at least those who have physical contact with him/her), all medical personnel, neighbors, DMV, then anyone coming in contact with them where there could be a misunderstanding. Usually, at this point, the affected person would need to be accompanied by a "caregiver".
I have shared my mom's diagnosis with 3 of my closest friends, who also have mothers with dementia. We support each other.
My mother fought/denied the diagnosis as long as she could. (She was tested by a geriatric neurologist.) I tried to go along with her denial until her confusion started getting in the way, (family not understanding her statements, banking mistakes, etc.). She was clearly unable to function as she used to and I gradually took on more and more responsibility (she was OK with that, but she didn't want to talk about it.)
I don't think you are betraying their trust to let necessary people know their condition. Unfortunately, it will soon become apparent to others as the disease progresses.
My mother is now in Stage 5 Alzheimer's dementia and verbalizes that she has dementia (most of the time). What a change from Stage 2-3, where she was fighting/hiding it! She'll say, "Damn this dementia and old age." She knows she can't think clearly. How utterly frustrating that must be!
Unfortunately, I had to put her in a dementia facility. She has adjusted to living there, (after 3 months) but has started saying that it's her time to die and that she's ready. She just celebrated her 93rd birthday.
This whole disease is very sad for everyone involved. 😢

Safety first. There must be safety first. Now, keeping dementia 'hush-hush', like back in the olden days when no one would mention the word "cancer", is just putting off the inevitable. It will come out eventually through word of mouth, no way to prevent it. This doesn't mean it has to be broadcast to the world, but doctors, neighbors, and immediate family should face facts and be aware, to keep the patient and the rest of the world safe. Getting lost, driving, getting lost while driving - no way to cover this up, and it will be apparent to all after a time. Remember, dementia is not uncommon, many many peoples' lives will be impacted by this horrible affliction.

I agree with you this is a multi faceted discussion. And caregivers are so caught up in the situation of providing care and knowing the latest news regarding medication and physical opportunities (i.e., driving), they are caught up in a circle of responses and decisions. I have found too much information is more disabling for the caregiver, which will soon give way to just passing over any new information due to the heavy load of just getting through the day.

Sharing a diagnosis of dementia is, in my opinion, a very personal and case-by-case answers are necessary. The relationship of the caregiver and their family member must be considered when making this decision. An example of differences in the situation could be a mother as the caregiver and a son or daughter with the dementia. Certainly, this example is very different from a husband and wife where one has the dementia and the other is the caregiver. And we must add to this mix, a concern if this is a first or second marriage. Are there children from both marriages within the scope of what this question must address.

And for me now of the most important is will the person who is confided in bring this diagnosis to the forefront when talking to the person with the disease more than once. Telling the person over and over of the diagnosis will only keep the one with dementia reliving this over and over. To what point is the reliving going to help the person or will it be a wound opened each time.

The situation of driving is for me a simple one. I live in a state that has met this crisis head-on. If there is a concern the caregiver, doctor, clergy or good friend place a call or go in person to the Highway Patrol. By stating the diagnosis a caregiver has given this circumstance to a person who will test accurately and will deliver the bad news. I do believe that caregivers should allow another professional be the decision make, for many challenges, as much as possible. Caregivers are stifled with the decisions, good or bad they take the brunt of the emotions. Most people will not drive without a driver's license when approached with the lack of insurance. While this maybe a necessary discussion each day, law enforcement has the broad shoulders to use to protect all concerned.

By the by, in regards to getting lost, I highly recommend a Jitterbug cell phone by Great Call IF they will remember to keep it with them. I use that with my senior mom along with her Philips Lifeline Necklace pendant with Fall Alert which has been a blessing several times. The phone has a GPS tracker. The Lifeline does NOT. BUT it is wash and wear so she doesn't have to take it off for showers. The Great Call has a necklace as well, but it has to have a protective cover put on and off for showers which wouldn't work well for her. If she was ever to start wandering, I would then get the Great Call necklace as well and just have to monitor showers to ensure she takes that one off/on. Hopefully they will come up with a waterproof version eventually. :)

Wise words all. I share this type of info with those who need to know it-family they will see, doctors and nurses, neighbors who then knew to notify me if they saw a loved one out alone which shouldn't be, and my own friends who can be a blessing and a support when needed. Generally shared privately so as not to upset my loved one but it has depended on the circumstances.

It's hard to give specific advice in these situations. I've found that selective sharing is necessary to maintain some sense of normalcy for the individual. We live in an independent living facility where the director feels that he is in charge of everyone. He constantly has had to be reminded that he isn't and to quit trying to find ways to force his issue...e.g., move the individual into an assisted care facility. Read, it's about the money, not the patient. I've had to engage a lawyer so that he will leave us alone and I make sure that I never leave my dad alone. Someone is always with him to ensure that other mean-spirited residents don't tell tales because he might wander the hallways and ring someone else's bell. He did that once in two years. So, long story short; be selective about who you tell and how you tell it. I've found it best to leave it with intimate friends and to hire the help I might need at the appropriate given time.

By far, the most serious danger posed in the earlier stages of the Alzheimer's disease is when the individual may decide they want to go for a walk, go searching for "home," or maybe just walk outside to get the paper. In a restaurant they may go to a rest-room. When they turn around, the place they expect to see is gone and they find themselves standing helplessly confused what they see is totally unfamiliar to them.

It is IMHO the host accompanying the person should understand the individual has Alzheimer's Disease, be aware of the danger, and treat the person with patience. Also, Confabulation is common. The person will say things to people containing information that is blatantly false, tell of actions that inaccurately describe history, background and present situations. The added danger is the answers are coherent, internally consistent, and appear relatively normal. Conversing with a LO who has Alzheimers is often like talking with your cat. Acknowledge, respond, be affectionate, develop boundless patience. Forget about rational responses. Show respect, your therapeutic fictional reponses are allowed. ~DLMifm

Too many people with AD have found themselves in exactly this situation after stepping out, only to wander the streets in hope of finding the ever-elusive home of their past. Others may be trying to escape imagined abusers or an unfamiliar person looking back at them from the mirror, but whatever the reason, leaving home also means leaving the safety and security that also resides there.

IMCO you can not keep the AD hidden.

Since I was quite active in church ministries, I did have to let people know about my husband's Alzheimer's disease. I just couldn't spend time away from home anymore and couldn't spend the thinking time. I've also told our neighbors, so they are aware if they see him out walking. Which so far, he hasn't gone out alone. My husband and I talk about it occasionally, but he starts to cry and asks that we not dwell on it. So, he does know, and knows it will get worse as time goes on.