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16 Things I Would Want If I Got Dementia

A heartfelt wish list from a dementia care worker


Part of the Alzheimer’s & Dementia: Personal Stories, Research, Advice Special Report

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Dementia patient

Credit: Getty Images

(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.

1. 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.

2. If I get dementia...

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

3. 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.

4. If I get dementia...

Ask me to tell you a story from my past.

5. If I get dementia...

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

6. If I get dementia...

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

7. 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.

8. If I get dementia...

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

9. 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.

10. If I get dementia...

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

11. 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.

12. If I get dementia...

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

13. If I get dementia...

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

14. If I get dementia...

Don't exclude me from parties and family gatherings.

15. If I get dementia...

Know that I still like receiving hugs or handshakes.

16. If I get dementia...

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

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By Rachael Wonderlin

Rachael Wonderlin has a master’s in gerontology and works in long-term dementia care communities. Her book, When Someone You Know Is Living in a Dementia Care Community: Words to Say and Things to Do, will be on shelves November 1, 2016 from Johns Hopkins University Press. Rachael writes a blog about dementia care, www.dementia-by-day.com. She is available for caregiver live phone-call assistance.

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