Alzheimer’s: To Tell, or Not to Tell?

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Whether or not to tell a loved one of their diagnosis of Alzheimer's is one of many hard decisions that you will face during your journey.

With 15 years of professional experience with Alzheimer's and my personal journey with my grandmother, it is still one of the hardest questions I find to answer.

That being said, my recommendation is to allow your loved one to "lead in their dance."Another way of looking at this is to learn to let go of your reality and meet them where they are in the moment. (See the world through the eyes of a person with dementia: People With Alzheimer's Share Their Experiences.)

The first steps

Early on in the disease process, your loved one may be able to understand that something is wrong with them, and therefore may ask you questions about what that might be.At this point, only when asked, it typically is best to answer honestly about their condition.

This technique is called "reality orientation," and is something I would only recommend in this particular situation.

Your loved one's primary care physician or specialist will typically assist you with telling them the first time.

The beat goes on

As Alzheimer's progresses—which also means intensification of the dementia symptoms—you may notice that your loved one forgets about their diagnosis.

In this scenario, allowing your loved one to lead in the dance, most likely means not reminding them of their diagnosis.

At this stage, your loved one may still sometimes ask questions about what is going on with them. It is important to handle these instances with a soft touch and give as little information as possible to satisfy them. Over explaining can lead to confusion and agitation, which are two of the primary causes of Alzheimer's anger.

Finding your rhythm

Over time your loved one will enter what I call their "happy place." They slow down and eventually stop asking questions. Once your loved one enters the "happy place," it is no longer necessary to address their diagnosis.

To handle confusion, repetitive questions, uncertainty about any other issues that arise, it is better to use alternate techniques, such as redirecting to an activity or reminiscing about positive experiences in their past.

Deciding when to tell and when not to tell a loved one that they have Alzheimer's can be a difficult task.

Each person and each journey is different, so you will likely go through a period of trial and error; sometimes you may step on your loved one's toes, so to speak.

The key is to be able to adapt your approach on the fly. Watch their behaviors and tone once you answer their question.If you notice agitation, combativeness, aggressiveness, long bouts of tearfulness or fixation to ask you repetitively about their diagnosis, then it is time to use techniques other than reality orientation.

Remember, the only time I recommend the use of reality orientation is when your loved one asks you the direct question of, "What is wrong with me?"

In summary, it is my belief that your loved one should be told when they are first diagnosed with Alzheimer's disease.

As the disease progresses you will experience an "aha" moment that will tell you when it is time to switch to other techniques.

Sometimes saying little or nothing at all is the best way to approach each day from the diagnosis perspective. Once your loved one has been diagnosed with Alzheimer's, it is important to focus more on the journey laid out in front of you both, than it is to discuss the diagnosis with them.

Enjoy each day you have with your loved one as you learn to dance with them. Wishing you strength, courage and happiness with those in their days gone by.

Deanna Lueckenotte is the author of "Alzheimer's Days Gone By: For Those Caring for Their Loved Ones." She plans to continue publishing books related to Alzheimer's and caregivers. She would also like to continue her education by obtaining her doctorate in geriatrics.

Alzheimer’s Days Gone By

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7 Comments

I think I must have discovered that there was something wrong with Bill mush earlier than most people do. I have known for over 7 years now. He knew something was wrong and he mourned for what he would lose just as I did. He was so frustrated back then when he tried to do something he had always done and now he could not. That was when he got angry, but he totally understood the whole process and feared it too. Now 7 years have gone by and he is finally in the happy place. He just kind of goes along with everything now! His biggest problems is changing the channel when he watches TV all day long. That is all he wants to do. And even though I have put a big white arrow on the TV so he pushes that button, he can't remember and he comes and gets me no matter what I am doing, even if I am in the shower. TV is his entire world now!. At least he can enjoy that. I take him places as much as I can. He enjoys live theatre so we go to little community productions as often as they have a show. He also enjoys country music so we listen to that in the car and whenever we can we go to a live performance. I just try to keep him as happy as I can.
Very good article along with good advice. I find the comments that follow to be filled with sadness and beauty.
Thank you so much Summer1900! Love your butterfly avatar!