Alzheimer's Foundation of America

Foundation of America

The Emotional Rollercoaster of Dementia

Remember when you were a kid and you’d “lose your stomach” on the rollercoaster rides? Well, being a family member of a loved one with dementia is a bit like that. I certainly had emotional highs and lows throughout the months and years of my parents’ dementia and Alzheimer’s, through fear, sadness, grief, frustration, and confusion, along with some moments of joy.

Keep in mind, you aren’t the only one experiencing the emotional rollercoaster ride. As your loved one declines in cognitive health, they may become angry and frustrated with themselves and you.

My dad would get upset with me because I didn’t understand what he was going through. If you get upset, too, then your relationship can be damaged, which can lead to guilt and regret. The better their journey, the better yours is.

You’ll experience a wide range of emotions throughout this journey. It’s best to accept them and learn how to move your attention away from the painful ones and toward creating happiness in your loved one’s life.


Try to be in good spirits.

Remember, they can sense your emotions and state of mind. You need to stay positive and happy when you are with them. No matter your emotional state internally, physical expression is very important; so be liberal with your hugs, smiles, hand holding, and kisses. If you’re visiting and not sure what to do, bring coffee and treats and find a nice place to sit and just enjoy the scenery. It will be one of the moments of joy that you’ll remember in the years to come. It will also bring you peace of mind and perspective.

Be forward-thinking about trying to avoid frustrating experiences.

Be careful not to humiliate your loved one. Your relationship will benefit from those efforts. I’ve heard so many family members ask their loved one, “Don’t you remember?” Avoid saying that.

Let. It. Go.

We tend to correct our loved ones, to stubbornly fight to “bring them back” by trying to reason with them and “help them” remember memories. Those with dementia don’t need a dose of reality. They need kindness, compassion, respect, and for us to meet them where they are. Do you want to be happy or right?

Don’t take things personally.

It’s common for a person with dementia to get angry and paranoid and perhaps accuse you of stealing from them. Understand that this fear comes from disorientation and the lack of ability to remember recent events. Just start searching for the item and reassure them so they can have peace of mind that they are safe. Another driver of anger (yours or theirs) is loss of control of the situation. My father saw his life companion slowly disappear. He expressed his
loss and frustration by raising his voice at everyone. All the while, he was also angry with himself, as he was starting to
show signs of dementia, too.

Take care of yourself.

Your loved one needs you, and your being worn down or sick will not help them. Remember that they can sense your emotions. Know that this journey is likely to last several years (my journey with Mom lasted 14). That can be very wearing and exhausting, so it’s best to learn and develop coping skills early on.

The most important emotion is love.

It’s amazing how good you’ll feel when you notice your loved one is happy, laughing, and enjoying the moment.

I think the most exhausting part of this journey is the sheer number of emotions happening all at once. Grief can show up as anger, sadness, or a multitude of other emotions. We all handle pain and loss differently, and we shouldn’t judge another for what is right or wrong for them in how they grieve. Just keep this in mind, when tempers flare or a family member doesn’t want to talk, it’s not about you. It’s how they’re processing the loss. Unable to change the outcome of an event or unable to understand the full scope of the situation and the possibilities this disease brings with it, everyone, loved ones and family members, experiences a lot of fear. Their world is changing as their past is erased; and we fear one day, we’ll be erased, too.

Loss, whether it comes one piece at a time or all at once, is never easy. Be kind to yourself. If you won’t do it for yourself, do it for your loved one.

Pam Ostrowski is author of It’s Not That Simple: Helping Families Navigate the Alzheimer’s Journey and Founder of Alzheimer’s Family Consulting.

This article originally appeared in Alzheimer’s TODAY, Volume 16, Number 2, published by AFA. View the entire issue here.