Things I Would Want If I Got Dementia

Original article by Rachel Wonderlin, a dementia care worker. She reflected on her experiences as a care worker and wrote a list of rules she hopes to live by if she ever gets dementia.



A heartfelt wish list from a dementia care worker

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 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

  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, don’t argue with me about what is true for me versus what is true for you.

  3. If I get dementia, and I am not sure who you are, do not take it personally. My timeline is confusing to me.

  4. If I get dementia, and can no longer use utensils, do not start feeding me. Instead, switch me to a finger-food diet, and see if I can still feed myself.

  5. If I get dementia, and I am sad or anxious, hold my hand and listen. Do not tell me that my feelings are unfounded.

  6. If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.

  7. 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.

  8. If I get dementia, ask me to tell you a story from my past.

  9. If I get dementia, and I become agitated, take the time to figure out what is bothering me.

  10. If I get dementia, treat me the way that you would want to be treated.

  11. 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.

  12. If I get dementia, don’t talk about me as if I’m not in the room.

  13. 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.

  14. If I get dementia, and I live in a dementia care community, please visit me often.

  15. 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.

  16. If I get dementia, make sure I always have my favourite music playing within earshot.

  17. If I get dementia, and I like to pick up items and carry them around, help me return those items to their original places.

  18. If I get dementia, don’t exclude me from parties and family gatherings.

  19. If I get dementia, know that I still like receiving hugs or handshakes.

  20. If I get dementia, remember that I am still the person you know and love.