What do people in the earliest phase of dementia need most from their care partners?

If I am in the earliest phase of dementia, I generally will hide my deficits pretty well, even though I may be experiencing fear and anxiety as I realize that my brain is not functioning as well as it used to.  Because people with dementia lose skills in the reverse order that children gain them, this phase represents the loss of my Adult Learning.  This means that those skills that I got really good at when I became a full-fledged adult will be the first abilities that I lose.

I may have challenges with word-finding, vocabulary and math. I may have issues with driving (car accidents, tickets) and my checkbook may become increasingly confusing and difficult for me to manage.  I might mix up medications, so please keep an eye on that.  I can’t seem to plan an event any more, make a shopping list, or even cook a whole meal.  Multitasking is way too overwhelming for me. My speech may become vague as I struggle to remember the details of whatever you are asking me about. 

It is important (not just now but throughout the dementia experience) that you as my care partner remember and focus on the strengths that I still have.  There are many! In this early phase, I still have a sense of humor.  Please help me find opportunities to laugh.  Ask me questions you know I can still answer.  (Do not quiz me to remind me of what I am forgetting.)  

I still have the capacity for ideas and decisions, so be sure to give me some choices.  Relationships are still important to me.  Please reassure me that you care.  Hold my hand and speak to me with warmth and kindness.  I still have interests.  Help me explore them. I will have fun reminiscing with you about days gone by because my long-term memory is still really good. I can probably still use clocks, watches and calendars to some degree. Give me reminder notes if those still work for me. 

In this phase, I will most of all need compassion and understanding.  I am still a person, a person whose spirit is experiencing considerable anguish at the moment.  Please avoid arguing with me, and do whatever you can to make things easier for me.  But please try not to scold or embarrass me in the process.  If you see that I am frustrated, it’s okay to say, “It’s so frustrating, isn’t it!”

Please don’t take it personally if I get mad at you or seem to blame you at times. I do this because I am scared.  I have a sense that I am losing control.  If you can let my frustrations roll off your back and just acknowledge that I seem upset, if you can apologize to me even though you don’t know what you did to provoke my anger, I bet I will relax, and this might even encourage me to share my deeper feelings with you.  I so need your love, support and your patience at this time.  Thank you for asking me what I need!  

--- Marysue Moses, Ebenezer Dementia Care Program Coordinator

This blog was inspired by information and insight in the book A Deeper Perspective on Alzheimer’s and Other Dementias, by Megan Carnarius.