16 Things I Would Want If I Got Dementia

A heartfelt wish list from a dementia care worker

April 13, 2016

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  By Rachael Wonderlin
• By Rachael Wonderlin

April 13, 2016

Credit: Getty Images

Part of the Transforming Life as We Age Special Report

(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.

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Just in case I do get dementia, I’ve written a list of 16 rules I’d like to live by.
If I get dementia, I’d like my family to hang this wish list up on the wall where I live:

Rules for a Good Life

• If I get dementia, 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.
• If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.
• If I get dementia, I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, read and visit with friends.
• If I get dementia, ask me to tell you a story from my past.
• If I get dementia, and I become agitated, take the time to figure out what is bothering me.
• If I get dementia, treat me the way that you would want to be treated.
• If I get dementia, 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.
• If I get dementia, don’t talk about me as if I’m not in the room.
• If I get dementia, 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.
• If I get dementia, and I live in a dementia care community, please visit me often.
• If I get dementia, don’t act frustrated if I mix up names, events or places. Take a deep breath. It’s not my fault.
• If I get dementia, make sure I always have my favorite music playing within earshot.
• If I get dementia, and I like to pick up items and carry them around, help me return those items to their original places.
• If I get dementia, don’t exclude me from parties and family gatherings.
• If I get dementia, know that I still like receiving hugs or handshakes.
• If I get dementia, remember that I am still the person you know and love.