Dementia

Last week, May 18 – 24, 2026 was Dementia Awareness Week (now more commonly referred to as Dementia Action Week).  Led annually by the Alzheimer’s Society, this public health campaign focuses on raising awareness, lowering the stigma surrounding dementia, and promoting early diagnosis and support.

Like many things in life, dementia is one of those conditions that most people don’t think much about until they, or one of their loved ones, begin dealing with the issue.

This was my experience until during the middle of COVID, at the age of 93, my mother failed her cognitive test during her annual physical exam.  Mom was widowed at age 43 and never remarried.  Over the next 50 years she raised three children on her own, got them through college and successfully launched into their chosen fields of endeavor.  She went from being a full-time homemaker to entering the financial services industry where she had a distinguished career from which she retired at age 70.  

Over the next 20 years mom was active at her church, did some travelling, enjoyed many of our community’s cultural events and relished spending time with her great grandchildren…until she didn’t.

At first the changes were subtle.  A little forgetfulness which often manifested itself in being unorganized.  Then we noticed a lack of energy and interest in activities that, in the past, had given her much pleasure.  Then came her unwillingness or being uncomfortable driving the 30 minutes to our home for a visit.

Her condition was driven home to me during COVID, when I would visit her several times a week to bring her groceries.  During my visit, I would lay out her pills for the week, only to find on my next visit that she had not taken her medication and, based on the number of soup cans in her trash, that was all she had been eating.

On Easter weekend of 2021, we brought mom to our home for her overnight holiday visit…and never took her home.  Even though we’d discussed for years what her plan would be when she was no longer able to live by herself, in the end, she was unable to make that decision for herself.

What followed over the ensuing four years was a very rich time of having mom in our lives daily.  That said, it was not without its challenges.  Particularly with respect to communication, when the repetitive questions would begin.  Not being able to remember the answer, mom would ask the same question over, and over and over.

I was reminded of this season in our life when I came across the following Facebook post on advice for families dealing with a loved one who has dementia.  I hope this is an encouragement for you today.

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.

1a. Every time you enter the room announce yourself. “Hi mom - it’s ………...”  NEVER ask- Do you know who I am??? That causes anxiety. 

1. If I get dementia, I want my friends and family to embrace my reality. 

2. 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.

3. If I get dementia, don’t argue with me about what is true for me versus what is true for you.

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

5. 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.

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

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

8. 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. 

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

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

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

12. 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.

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

14. 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.

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

16. 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.

17. If I get dementia, make sure I always have my favorite music playing within earshot.

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

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

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

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

Someone once said if you take care of someone with dementia you lose a little bit of them every day. When they get the diagnosis, when they go through different stages, when they need treatment and when they pass away.  This is called "the longest goodbye ". As the brain slowly dies, they change physically and eventually forget who their loved ones are.