multicolored faces with their eyes closed, many of them sad

Community Views: What Are the Most Difficult Symptoms of Alzheimer’s?

There is nothing easy about Alzheimer’s disease, both for the person with the diagnosis and for caregivers. As with any diagnosis, people with Alzheimer’s do have good days and good moments, but the disease is still very challenging.

To learn more about what you find challenging about the diagnosis, we reached out to members of our AlzheimersDisease.net Facebook community and asked: “Complete this sentence. The most debilitating Alzheimer's symptom is: __________.”

More than 130 community members shared, and here is what was said.

No longer recognizing family

It is incredibly challenging to watch someone with Alzheimer’s not recognize family members, and harder still when they do not recognize you. Many in the community shared that the hardest part of this diagnosis is caring for someone who does not always know who you are. This can be one of the most difficult parts of the disease to accept. However, just because someone does not immediately recognize you does not mean they do not love you, nor does it erase your shared years of love and connection.

“The loved one not recognizing family members.”

“Watching someone lose their ability to remember family and friends.”

“Losing his memory of me just being there, and he asks if I am gonna see him today.”

“When the Alzheimer’s patient no longer recognizes his or her immediate family.”

“Forgetting your grown children’s names. That was the hardest to see with my mom – that she could not remember who I was.”

Memory loss

Not only do people with Alzheimer’s often forget who friends and family are, it is also common to lose the ability to recall past memories. However, that does not mean those memories are totally gone. Many people have shared that taping up family photos or going through cherished photo albums together can sometimes help someone in the earlier stages of Alzheimer’s bring those memories to the surface.

“The years of family memories that can barely be recalled.”

“Forgetting everything about your life and family.”

Confusion or the "blank stare"

With Alzheimer’s, it is common for someone to look lost or confused as they try to figure something out. Many shared that this expression is hard to witness – which only shows just how much compassion and empathy you have for your loved one.

“The frustration on their face when they are trying so hard to remember who you are or things they just got done doing.”

“The blank stare from a once vibrant, very social, funny, and loving man.”

“Empty stare in her eyes!”

Depending on others

Many in the community shared that feeling helpless is one of the toughest aspects of Alzheimer’s, both for the person with the diagnosis and caregivers. For the person with the diagnosis, it is incredibly difficult to go from being a capable adult in charge of managing every aspect of life to feeling confused and not being able to handle life as they once had. Several members shared that they are learning to ask for help and to depend on people for support. This can sometimes feel uncomfortable, but is a big part of learning to live with Alzheimer’s.

“Not being able to ask for help or to talk to someone.”

“Not being able to do simple things and, instead, needing to depend on others when you never did before.”

“The helplessness.”

Thank you to everyone who shared their experiences with Alzheimer’s disease. We appreciate you for making this a safe space full of connection, compassion, and understanding.

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