For those of us with healthy brains, it is fun to anticipate having time with those we love. It is exciting to plan and organize and prepare for an upcoming vacation. Sometimes the excitement of anticipation ends up being every bit as thrilling as the actual event itself.
We watch the world narrow for our loved ones with dementia, and so we think we are giving them a gift when we give them something to look forward to, something to anticipate.
But for people living with dementia, anticipation becomes a crippling, disabling problem.
Let me see if I can explain.
Dementia causes memory skills to diminish. So, a person’s ability to hang on to important information becomes increasingly limited. They will try with every bit of their remaining ability to mentally hang on to the facts around what is upcoming but are unable to do so. They will end up distressed.
Add the reality of diminishing rational thinking skills, which means they are losing the ability to compare and contrast the passage of time. They look at the clock and see that it is 9 a.m. but are not able to understand that they have nine hours to enjoy the day before the anticipated event. So, they remain distressed and waiting in anticipation, all day, for what is coming up.
Here is what this looks like in everyday life for folks living with dementia: someone tells them at 9:00 a.m. that they get to go to dinner with their loved one at 6:00 p.m. that evening. They see facial expressions and hear a tone of voice in the person telling them the plan that the upcoming event is important. So, they will do their very best to hang on to that information, with very limited cognitive skills to do so.
They will get stuck in a state of distress and will not go anywhere that day because, from the moment they hear about that upcoming event (even though it is nine hours in the future), they will wait knowing something important is coming up. The mention of the upcoming dinner with their loved ones has crippled the ability for them to enjoy the day.
The issue here is not dementia. The issue is that we are not understanding, accommodating, and supporting the changes in a person with dementia’s cognitive abilities. We are well-intended in our wish to give them something to look forward to, but we set them up for persistent distress because they will spend their day trying to remember what is happening in the future, not understanding the passage of time, and making sure they remain at home so that their loved one can pick them up there….in nine hours.
So, what can we do about it? I encourage families and caregivers of people living with mid or advanced dementia to not tell their loved one about upcoming events. Even an event that is five minutes in the future can cause five miserable minutes of distress and set a negative mood in place. A negative mood is uncomfortable for the person living with dementia, and their companions.
Our companions with dementia increasingly live in the “three seconds of now,” and when we live there with them, we begin supporting their changing skills, and bringing comfort versus distress.
We mean well when we give our loved ones with dementia something to look forward to. But it is crippling to them, their comfort and well-being due to the changes in their cognitive skills.
If you would like more information about how we handle the issue of “upcoming events” in a dementia-supportive way, feel free to reach out.
Living in the moment with my companions with dementia, because this very moment is what they have,
Jill
©Jill Couch
