16 Things I Would Want If I Got Dementia

(This article appeared previously on AlzheimersReadingRoom.com.)

When you work in dementia care, people tend to ask you a lot of questions. Probably one of the most common questions that I hear is, “Are you afraid to get dementia when you’re older?”

Honestly, there are many things that scare me much more than dementia does. Don’t get me wrong: dementia is a terrible group of diseases. I've been fortunate, however, to see many of the beautiful moments that people with dementia can experience.

Just in case I do get dementia, I've written a list of 16 rules I’d like to live by.

I want my friends and family to embrace my reality. If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it.

I don’t want to be treated like a child. Talk to me like the adult that I am.

I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, read and visit with friends.

Ask me to tell you a story from my past.

And I become agitated, take the time to figure out what is bothering me.

Treat me the way that you would want to be treated.

Make sure that there are plenty of snacks for me in the house. Even now, if I don’t eat I get angry, and if I have dementia, I may have trouble explaining what I need.

Don’t talk about me as if I’m not in the room.

Don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose a great new place for me to live.

And I live in a dementia care community, please visit me often.

Don’t act frustrated if I mix up names, events or places. Take a deep breath. It’s not my fault.

Make sure I always have my favorite music playing within earshot.

And I like to pick up items and carry them around, help me return those items to their original places.

Don't exclude me from parties and family gatherings.

Know that I still like receiving hugs or handshakes.

Remember that I am still the person you know and love.