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.
