20 Things I Would Want If I Got Dementia

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I wrote this a few years ago, but just added four more “things” to my list.

If I get dementia, I’d like my family to hang this wish list up on the wall where I live. I want them to remember these things. The original list was also published in my book, When Someone You Know is Living in a Dementia Care Community.

  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 favorite 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.

41 thoughts on “20 Things I Would Want If I Got Dementia”

    1. This is a wonderful list. Before my father past he had onset dementia. It was not unusual for him to ask me the same things in the space of minutes sometimes. I would simply answer the question or comment like it was the first time he asked it. That is something that I made sure whoever came to visit him was asked to do. I miss him and ALL his repeated questions.

    2. My mom was in memory care the last 2 years of her life and we couldn’t always visit her due to the Covid lockdowns. The last time I visited her, I asked her if I could pray with her…we hugged and I prayed. Now my Mom couldn’t remember all our names or how we were related but she remembered the most important person…as we hugged she repeated over and over, “Jesus, Jesus, Jesus”.
      My mom died about a month later while I was on an airplane. The administrator (Kathy, who my mom thought was me b/c we looked a lot alike) went in and acted like she was me as she said, “it’s me mom, Cindy. I’m here and it’s ok if you need to go home”. When I arrived in Huntsville, the admin called me to say she had passed peacefully. Thank Jesus for great care givers too.

      1. That is the ultimate kindness in the shape of a caregiver. Gave your mom peace when she needed it most. What a blessing.

  1. Those are the things that I’d like and will help me to look after my husband who has Ahlthiemers .thank you

      1. Awesome addition to the list!
        I’ve cared for several dementia patients, starting with my mother. I didn’t think I could do it…. But God gave me grace to care for her and several others later until they passed. I learned that never taking things they said or did personal was the mindset I had to keep. Always treating her and the others I cared for with the respect I would want if it were me.. A person with dementia is not a child…. They are not crazy…. You cannot control the disease…. You CAN love and respect the person.! And when they are gone you can sleep at night knowing you helped them thru the most difficult time of their life…..

    1. I am the 11th child of my parents so I did not know a lot of things about my mother. When she started having dementia I started asking her things like how she met my dad how her life was before she had kids I learned a whole lot about her. She talked like it was just last week. When it was my turn to watch her we had the best time!
      I’m printing this poster so my children will know what to do if I get this thank you!

  2. I learned with my Dad that sometimes he would have remarkable clarity and I would doubt him. Minor things most of the time. But I think if it were me it would be frustrating to always be doubted.

    1. Linda, that’s what I’m trying to remember. I try to remember that he has moments of clarity and check things out later if need be.

  3. Great thoughts. My Mom had Alzheimer’s. It was so hard to watch my Mom forget everything that had been important in her life. If you have a parent with dementia, be kind. They are struggling to remember important people and events in their life. Love them and have patience.

    1. Susan Montgomery

      Thank you for this. I wish I had this when my mom first started having dementia. She has passed on, and I think I did ok, but this would have helped tremendously. Anyone who has someone in their family with dementia needs to read this.

  4. It’s a great benefit to the person with Alzheimer’s to also be mindful of the needs of the caregiver. The self sacrifice of the caregiver(s) should never be taken for granted, but always respected and honored. One could offer to sit. and give attention to the “patient” to give the caregiver a short break. One could offer to take the person for a short walk around the yard or garden. One could take meals or snack baskets occasionally. Visitors and family members should watch for ways they can please the person with Alzheimer’s or give rest or assistance to the caregiver.

    1. What I really like to know is this printable because sometime I need reminded of the situation that I’m in I am very patient and kind with my husband because he has been a good man sometime I get frustrated when he asked me the same thing over and over I have to remind myself that he looked the same but he’s not always there

  5. Everyone of these things are exactly was going on with my mom for the 6 years. My mom had the beginnings of dementia when I moved her from Michigan 6 months after my step dad had died. She had a home here and I had the most wonderful person to live with her to help take care of.

  6. I also have a list for when I get dementia. and move to long term care.
    I would like a soft pillow, not the plastic ones and a cozy comforter
    I want soft music playing, no static.
    This may seem odd but I always say I want all my teeth pulled out. Maybe not right away but I don’t want to be grinding little cavity filled nubs.
    And yes just go along with my reality, smile and let me know you care.

  7. This is so amazing and beautiful 😊 I lost my mother to complications with her frontal lobe dementia and if she was still here I’d take all the tips from here and use it when we’d go and visit her. I hope someone can help their loved one with these tips because it’s really beautiful 🥰

    1. That was a stupid comment to write when people are going through a very serious situation. Maybe if you have a loved one that has this disease you would understand that.

  8. I’m saving this!!!
    My mother had vascular dementia and I tried so hard not to contradict mom’s mistakes,I hope I made her last year’s enjoyable for her. Keeping some normality in her life.xxx

  9. Thank you for this It is very important to know how to treat someone with dementia or Alzheimer’s and to know how to keep your patience with them.
    Your insights are valuable.

    I know a woman whose husband spent 17 years in a care place for people with dementia, and can’t fathom how she survived all those years with visiting and trying to understand his needs.

  10. My Mom had dementia and being a military family I didn’t get to go home as often as I would have liked. My last visit with her was something I will treasure forever. She was from an Irish family and our phone calls for years before always started with ‘Top of the mornin to ya me darlin’ (always in an Irish accent) and she would answer ‘And the rest of the day to you’. Her grandma was the only one who always called her Katie so one day visiting when I had gotten there I said my phrase and she called me Grandma. So I called her Katie and asked what she had been doing. She told me about her horse Charlie and that she had cleaned out his pen and I’ve never regretted doing that and just listening to her talk. At the end of the conversation she got the biggest smile on her face and said hello Mary Ann and told me about her visit with her grandma.. That was my last visit with her. Thank you for letting me share.

    1. 🥰
      Thank you for sharing that story.
      It’s hard to understand & react appropriately all the time.
      My father is just now at 92 starting to shows signs & it’s hard to catch myself from reacting in shock or completely speechless.

    2. How amazing that you timed that one just right! I’m tickled for you and your mother! I worked with several people with dementia (nursing homes) and when those encounters happen, it’s like magic! Tears started rolling when I read this! You made my day!

  11. I love this. Another thing that we did for my grandmother was we made a photo board. It had pictures of the family members with names. We even included the animals. She loved it and would stare at it then smile and talk about one of us. It was on the wall right at the end of her bed. She’s dearly missed.

    1. When my mom was in a care facility, I used a dry erase marker and wrote our names on the glass of our pictures. It helped the care givers put faces to names & it helped Mom to see them written out.

  12. My dad had some type of dementia. His wife, my stepmother would argue with him and had absolutely no patience. Fortunately he lived in a private home that cared for him at the end of his life. I used to visit and just agree with everything he said. He believed that the people on tv were really with us and he worried that we might not have enough food for them. He and his wife are both deceased now.

  13. Mary, your story reminds of what I usually tell people when asking for assistance on how to treat or handle persons with dementia. I describe the different stages that they live through every day/hour etc as a bubble. When they are in a specific bubble, do not argue and try to get them out of that bubble. Rather have a nice discussion around the contents of the bubble as presented by them. If you live with them from bubble to bubble, you end up being much more relaxed while you are with them and they feel you accept them for the person he/she is. I am the Director of Pretoria Council for the Care for the Aged and I simply love the 20 points raised by Rachael. It is so practical and useful – tough at times to live by but surely rewarding to everyone involved.

  14. When I first started working in the care environment, I worked 7 years in a EMI nursing home, I can honestly say that I loved it, but dementia is a very cruel disease, my dad & grandma developed it before passing, to see them change from the person they once were is
    heartbreaking 💔 I’m going to download the poster and put it on the ward & staff room… so well written & it would hopefully give some staff food for thought

    1. I have just been diagnosed with dementia and really have known that my bipolar depression all of a sudden had taken a turn for the worse. The beginning dementia is hard to accept but the Neurologists diagnosis helped me deal with the new problems. Your list is going to become very important for me. 😊

  15. We did everything on this list when our Mom developed dementia as we were caring for her. It made it so much easier for us to accept. She was a joy to take care of for 8 years. I would also add the importance of having a good sense of humor. We even took her to Discovery Cove to swim with the dolphins. She had the best time! We attended every family event that we could. Bravo for sharing this list!

  16. If at all possible can you print a copy with the additional four things. I will pay for it and postage. It means so much to me. Thank you for comforting the minds of caregivers as well. It gives them direction as to how to cope and act when they don’t know what to do.

  17. There is so much I don’t know so excuse me if I’m not all together correct in my opinion. I do know that some with dementia go to the dark side and tend to be angry and there are those who are as gentle as doves. I think possibly to expect a dementia person to be thankful to caregivers and family might be difficult for them. They are in their own bubble and unable to get out.. The family needs to get together and commend each other for the care that they give the person. I think that’s all the thanks that you are able to receive indirectly from the patient. If they could I know that they would.

  18. For someone who has cared for my 89 year MIL the past 4 years 24/7, I urge caregivers to write their story down for generations to come. Make their life into a book with pictures so when their memory fails, they can read it. They most likely will be only to remember the past and nothing by the end of the day.

    Once you take someone into your home with dementia your world as you know it is not the same. Be sure you can take the responsibility on, your family will help give you breaks and know that yes you will repeat your days with the same schedule each day.

    That it is just as hard for you as the person you are taking care of. To know that they can’t remember is heart breaking to watch and for them it is heartbreaking to know there memory is going. There will moments of tears of both sides. Allow them to express themselves.

    If they like to read, have them ready but know that in time they won’t be able too because they will forget where they started and ended. My MIL first year here she read 25 Karen Kingsbury books which were inspiring, By year 4 she is unable to keep that focus. Word searches, sticker books and reading magazines is all that she can focus on.

    Know that no one knows what it’s like to do what you do unless they experience it themselves. People, friends and will try to give advice but they don’t know unless they’ve done it 24/7 for years. There will be days you take it personally. Allow yourself to cry and talk through gently with the person you are caring for. They might not remember anything you talked about but it’s ok because you’ll know that you did.

    Encourage family to call and visit. I get my strength from the Lord each day. Know…you are not alone.

  19. my mom will soon be 91 and has been showing signs of dementia for the past 5 to 6 months. I live about an hours drive away so I go every other week and spend 3 days with her and my dad who will be 95 a week after she has her birthday. It has been a real eye opener watching her slowly lose her memory. She has always been so smart and remembered everything and kept us straight on family events and other things. This really hit home for me when I read it. My siblings don’t live near and don’t come home often so I’m the one that physically takes care of things and it’s so hard to watch this happen to such a strong person. They still live at home and she is still to function normally because these moments come and go but I know unless God calls her home first the time is coming that we will have to make other arrangements and hat is going to be so hard on Dad because he loves her so. They have been married 75 years and he is so devoted to her. Thank you so much for this list and for letting me ramble. I needed to say something because I have kept this bottled up for so long.

  20. The list is comforting to me – thank you. My MIL was French-Canadian and her dementia came on very quick. We worked through it for a year but then she became violent and required care I could not give. Although, when we visited her she would spend our visit time telling only what God going between French which I don’t speak then switch to English. Her talking and talking and me nodding and nodding. At those times we found in each other an appreciation that being her DIL for 40 years never happened. It was good for both of us.

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Rachael Wonderlin is an internationally-recognized dementia care expert and consultant. She has a Master’s in Gerontology and is the author of two published books with Johns Hopkins University Press. Rachael owns Dementia By Day, a dementia care consulting and education company.

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