If I Get Dementia: A Heartfelt Wish List for My Caregivers
This wish list is written from the perspective of someone living with dementia. It’s a compassionate guide about how to love and support them through the journey—with patience, grace, and heart.
My sister has Early Onset Alzheimer’s Disease, a form of dementia, so I am confident that this wish list is an excellent collection of valuable ideas. I adapted it from several lists, as well as my personal experiences.
If I get dementia, it would be my Wish List.
Print it. Save it. Hang it on the wall if it helps. Because the truth is—this wish list is not just about caregiving. It’s about connection and compassion.
Before Anything Else…Remember This One Wish
When you enter my room, greet me warmly. Say, “Hi Mom—it’s Susan.”
Please don’t ask, “Do you know who I am?” That question causes me anxiety. Just let me feel safe in your presence.
As a caregiver, you can also suggest this wish to family and friends who want to spend time with their loved one.
In fact, please know that these twenty wishes can, and should, be used by all who spend time with someone who has dementia. It’s a fragile disease that requires sensitivity and compassion from all.
My Wish List for Caregivers…If I Get Dementia
Have you ever wondered what your aging parent or loved one with dementia might want to tell you—if they could find the words?
Caring for someone with dementia is filled with unknowns. Every day can feel like a mix of love, loss, and learning.
But sometimes, what we need most is a gentle reminder of what truly matters to the person we’re caring for.
I hope this Wish List helps you understand what really matters to the person you’re caring for with dementia.
1. Embrace My Reality
If I believe my spouse is still alive, or that we’re going to my parents’ house for dinner, please let me stay in that reality. I’m not trying to confuse you. I’m simply holding on to what feels comforting.
2. Don’t Argue with Me
My truth may be different from yours. That’s okay. Please don’t correct or challenge me—I need your calm more than your facts.
3. If I Don’t Recognize You, Don’t Take It Personally
It’s not about love. It’s about timelines. I may be stuck in another chapter of my life, but I still feel your presence.
4. Let Me Feed Myself (Even If It’s Messy)
If I can’t use a fork or spoon anymore, try switching me to finger foods. It keeps a bit of my independence intact.
5. Sit with Me in My Sadness
If I’m anxious or tearful, hold my hand. Listen to me. Don’t dismiss my feelings or tell me to cheer up. I just need to feel heard.
6. Speak to Me Like an Adult
Even if I seem confused, I am still the person you’ve always known. Please don’t baby me—I’ve lived a full life.
7. Help Me Do What I Love
Whether it’s reading, walking, or chatting with a friend—I still want to enjoy my favorite things. Please help me find ways to participate.
8. Invite Me to Share a Story
Ask me about my past. Even if I’ve told you the story ten times before, it still brings me joy to tell it again.
9. If I’m Upset, Look for the Cause
Agitation is often my only way to communicate. Something might be bothering me—pain, hunger, fear. Try to uncover the reason.
10. Treat Me with the Same Kindness You’d Want
You may be tired or overwhelmed—but try to offer the compassion you’d hope for if the roles were reversed.
11. Keep My Favorite Snacks Handy
Sometimes I don’t have the words to say I’m hungry. And hunger can make me angry or restless. Snacks can make a big difference.
12. Always Talk To Me, Not About Me
Even if I can’t respond, I can still hear you. Please don’t talk around me as if I’m invisible.
13. You Don’t Have to Do This Alone
If caring for me becomes too much, that’s not your fault. It’s okay to get help or find a safe, loving place for me to live.
14. Visit Me When You Can
If I’m living in a care community, your visits still mean the world—even if I can’t say it out loud.
15. Be Patient with My Confusion
If I mix up names or events, just breathe. I’m not trying to frustrate you—I’m just doing my best to keep up.
16. Fill My World with Music
Play my favorite songs often. Music reaches me in ways words no longer can.
17. Help Me Stay Engaged
If I like to carry things around, gently help me return them when I’m done. It’s part of how I interact with the world.
18. Please Include Me
Don’t leave me out of celebrations or family gatherings. I may not follow everything, but I still feel the love in the room.
19. Know that I Still Crave Connection
Hold my hand. Offer me a hug. Human touch still comforts me. Sit with me. I need to feel our connection even if it doesn’t seem like I care.
20. Remember I’m Still Me
Even if dementia changes how I express myself—I am still the person you know and love. Please remember that above all else.
Alzheimer’s and Dementia Resources for Caregivers
The very best book I’ve read about Alzheimer’s and dementia is The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease and Other Dementias (A Johns Hopkins Press Health Book) by Nancy L. Mace and Peter V. Rabins.
It’s easy to read and thoughtfully organized, so you can quickly identify what’s going on with your loved one and find practical tips to help.
After borrowing it from the library, I bought my own copy. I wanted to be able to highlight important and relevant information. It has been amazingly helpful!
Additionally, the Alzheimer’s Society website is very helpful. It’s easy for the lay person to navigate and understand.
And finally, check in with your local Department of Aging. They have many resources for assistance specific to your area.
A Final Thought for Caregivers
You are doing one of the most difficult and beautiful things a person can do—loving someone through dementia.
This list isn’t a checklist of perfection. It’s a love letter from the person you care for.
Like I mentioned earlier… Print it. Post it. Share it. And most importantly, give yourself grace along the way.
You’re not alone. We’re in this together.
Other Articles You Might Find Helpful:
- 40+ Engaging Activities for Seniors with Dementia
- 7 Things NOT to Say to Someone with Dementia
- 63 Top Alzheimer’s & Dementia Quotes for Caregivers
Love to All! ~ Susan
