When do you tell a patient they have dementia or Alzheimer's?

DO NOT TELL SOMEONE THEY HAVE DEMENTIA - it is not a kind thing to do - usually the family realizes when it is at least moderate - my friend's mother went for an assestment & family was told strickly not to say ANYTHING - that was when they realized that they were 'finishing phrases', finishing ideas, and helping her over things she could say .... bottom line was she had hooked her family into helping her so much that they didn't even know until this test was done because she kept say 'XXX will tell you'

If your parent has some degree of smarts then they will be able to hide the problem much, much longer - basically the higher the smarts on mom/dad then the longer it will take to be noticed because they can 'pull it together' for short periods of time - if your mom/dad is highly intelligent you may need to video some of their actions to show their dr so that you are truly believed

I hope this helps some of you in dealing with your parents [who become the parents from hell because of dementia] - try to bring out photos of better times to help remember those times & both for them & you

This forum has lead me to remember things of mom when she was her 'old self' & for that I'm truly greatful - it has also helped me keep a perspective on these things - I hope whoever reads this also gets these same rememberances

As to telling the person what they have, I think it depends on how far along they are. I suspected something was wrong and due to his vision getting worse I was able to use it as an excuse to drive them to his appointment. We (my mom and I) knew there was something wrong and we suspected what it might be (her mother had alzheimers). It was not shared with us until he was a ways into dementia and then the doctor never came out and told us what it was. I found out exactly what it was when I asked his doctor to complete FMLA forms for where I work. He evidently had been diagnosed about 3 years prior to that. He is now about 5 years into it. He keeps saying to us that he has never been told what is wrong with him.

I feel that we (mom, dad and myself) might have been able to prepare for things better before he got so bad; if we had been told at the beginning. At least we may have gotten him to visit the facilities and to make some plans, now he just gets mad when we even mention it and tells us that he is not sick. Later the same day he will remark that he wishes the doctor would tell him what is wrong. As others, we now avoid the D word around him unless you want to get in an argument.

This site has helped me quite a bit! I do not feel so alone. I visit often to see what questions are asked and how other people are dealing.

That depends on the individuals involved. We never used the D word with my mother. Denial had been a primary coping mechanism for her throughout her life. She was certainly entitled to use it now.

My husband knew when I knew. As an engineer he thought in terms of cause and effect, action and reaction. Knowing why his brain was so muddled was a relief to him. It allowed him to make decisions such as donating his brain for research (which was very important and meaningful to him.) He participated in a Lewy Body Dementia study and took the various tests every year, to track his progress.

When he was having a particularly bad day I could hug him and say, "That ol' Lewy is sure tripping you up today! Why don't you just sit here and watch the Grand Canyon video. I'll bring you a snack. Tomorrow will be better and we'll go to park then."

We could both be mad/sad about Lewy. I could reassure him that none of this was his fault.

It was very, very helpful to his care and to our relationship that he knew and understood he had a disease that interfered with his normal functioning. But I know that this isn't always the best approach for everyone.

This may sound odd, but as the main caretaker of my grandfather, I haven't told him. Nor has any of his children told him. We dont discuss it.

The only time I'm come close to saying anything is about 3 times when he was acting extermely irrational, and I said "granddad your mind is getting fuzzy", and he gets this hurt/surprised look on his face, then suddenly backs down.The first time I said he started to cry. I only use those words in extreme circumstances.

Another thing to consider is if the person wants to participate in a clinical TRIAL. Biogen US corp. has a new drug in the works that is in clinical trials. It sounds promising. It's something to consider.

I would expect the doctor to inform the patient and discuss any care plan and medication they would recommend. My uncle recently told me he was going to classes at the Alzheimer's society because he has MCI and "can't remember sh*t" so he was learning coping strategies, no denial there! I think early on almost everyone has the ability to handle the news that their brain is malfunctioning, it may even be a relief to finally have a name for what they are experiencing. It is better if they are be able to take an active roll in planning for their future.

If I want to make my mother extra mad, I can mention the D word. She does not accept that she has dementia, even though it is written on her medical forms. It is like she doesn't see the word. We don't discuss the D word here. As my mother gets worse, we don't even talk about problems with memory. She gets angry and tells me that she remembers more than I know. I wish she did accept something was wrong, but she doesn't. We work around it.

There is one point in discussing dementia with someone who has it. Jeannegibbs mentioned about how she would discuss problems with her husband. If someone was like her husband, it would be a good thing to discuss it. But if someone is like my mother, it is better not to even mention it.

I think that GardenArtist makes a good point about what value it has to let the person know they have dementia, however, I suppose that as the patient they have a right to know, if they can process it. Plus, if the diagnosis is early enough, they can make arrangements in advance.

My parents recently ran into a family friend who told them that she had early dementia and that she would eventually not recognize them, so she was saying her goodbyes now, before she progressed. It was so sad.

Besides the points made in preceeding posts, I would ask what the point is of telling someone he/she has dementia? I don't mean that sarcastically, but rather, what would be expected would be the value?

There comes a time in life when being frank is not the best course of action, especially if it will just upset the person to be told he/she has dementia.

is it normal with dementia that they always have excuses of why they don't want to go somewhere or do the plans that were made already?

I think it depends on how advanced the dementia is. Does the patient still have some executive reasoning? Will they understand and retain the discussion? Or will it just cause anger, confusion and be forgotten in short order? My Dad thinks he is just fine. We don't try to convince him otherwise as it would get us no where.

The patients doctor can do a simple mini test to check cognitive ability. There are more extensive tests that can be administered by specialists to determine what type of dementia is present, vascular etc.

That's a very personal decision and imo, involves many factors. In general, I think that approaching the person's health in a more comprehensive way may be easier for the loved one to accept. Like, why don't we see your Primary and get some things checked out, like her stiff knee, blood tests, flu shot, balance problems and see if there's something we can get to help with memory. I wouldn't point the memory out as the only problem, but just something to put on the list with the other regular matters.

Then, before the appointment, I'd send the Primary a list of what you have observed and let them address at the next visit. The Primary may do office exam and may refer you to a Neurologist. The Neurologist will do office exam and order more tests. My cousin thought the Neurologist was to help with balance and memory and was fine with it. The Neurologist may make comments in the office as to whether something is going on or wait for more tests. My cousin's Neurologist said in the office that she had significant impairment, but he was not sure if it was Alzheimers or what was causing it. More tests were needed.

The Neurologist may order a Neuropsychological evaluation and an MRI. These will give the Neurologist more information for his diagnosis.

I suppose that if a person is in the early stages, say with cognitive decline, they need to know so they can make arrangements and put their affairs in order, with Durable POA, Healthcare POA, LIving Will, etc. They need to make their wishes known and plans for long term care. If they are advanced in dementia, they may not accept or understand that they have dementia and no amount of explaining will get through to them.

Eventually, the patient will forget that they have dementia and that they were ever told they have it, so, I would just concern myself with protecting them, comforting them and ensuring that they have their affairs in order. Each family handles it the way they feel is best.

A geriatric psychiatrist or psychologist can do dementia eval to see where things lie in terms of dementia. Alzheimers is a different thing and requires different testing, though it will still involve a psych eval.

I was very honest with my mother and made sure she understood what was happening to her mind, while she was still able to process and understand it. But then, Mom was always one to want to know what was going on with her body. Some people may not take that so well - depends on the person.