A Different Perspective on Alzheimer's

Alzheimer’s is polarizing in many different ways. It is experienced differently by the person diagnosed, the family, and the friends. Either you accept the diagnosis, or you don’t. How you deal with it is just as polarizing as your initial reaction to the news.

When I was diagnosed with younger-onset Alzheimer’s, I was relieved because I knew that I wasn’t "crazy" and that there was actually a reason for my symptoms. I was always the type of person who wanted all the information so I could form a plan of action. My family looked at it differently: my husband preferred not to know, and my son looked for ways to help.

Coping with Alzheimer’s looks different for everyone

Even though there is a lot of work to be done in the field of Alzheimer’s regarding a cure, you must have hope. I was diagnosed with Stage 2 breast cancer several years ago. When I was given the news of that diagnosis, I didn’t deny I had it; I just wanted to know how to fight it.

I wasn’t afraid, but most of my friends and family were upset by my breast cancer diagnosis and worried about my treatment. I was very calm about it and knew that there was a good treatment plan in place to fight it. After about nine months of chemo, radiation, and surgery, I was cancer-free.

Now, dealing with "chemobrain" and Alzheimer’s at the same time was not easy, but I got through it. I would never have avoided seeking treatment. Even though there is not yet a cure for Alzheimer’s disease, there is help—so why would you not want to know if you had it, or why deny its existence?

Seeing Alzheimer’s as a disease, not a condition

I bring this example up because Alzheimer’s is a disease like cancer, high blood pressure, or diabetes. However, people often don’t see Alzheimer’s as a medical disease—they see it as a "condition," one that has an unpleasant stigma attached to it. Since my diagnosis, this has been one of the hardest things for me to fight: the social prejudice regarding what people think of me because I have this disease.

Their preconceived ideas of what someone looks like with Alzheimer’s don’t quite match up with what they see in me, so they are confused. Since I am not in the later stages, I still have many good days, and the symptoms are hard to see. But when they do see that side of me, they are uncertain how to act and distance themselves. This is quite a different experience from when I was dealing with cancer.

The reality of "looking fine"

People say to me all the time, "You look fine, you must be fine," and are quick to dismiss my diagnosis. This dismissal is a form of Alzheimer's stigma that makes it harder for us to get the support we need. All of us living with this condition need you to see us as patients who require understanding to help our loved ones and ourselves.

I’m not the only one living with this disease; my family lives through more of it than I do, and they need support as much as I do. I often say I have the easy part of this disease, and my family has the hard part. They have to deal with me, and it isn’t always easy.

Breaking the Alzheimer’s stigma

This dreaded disease takes away a lot of things: your independence, your memories, your joys, as well as your livelihood. My true friends and family share my struggles. They laugh at me and with me. They help me, they support me, and they love me. It is not easy—but so many things in life are.

If you are reading this, you are dealing with this yourself as an individual diagnosed or as a friend or family member seeking information. Do what you can to help yourself or your family member while you still can. Don’t regret that you didn’t do more. By speaking openly, we can finally begin to dismantle the Alzheimer's stigma together.