By: Scott & Emily Sutherland
Early onset Alzheimer’s disease creates a great deal of emotion in both the individual with the disease and the care partner. When individuals begin to show signs of memory loss, the people closest to them are likely the ones to notice these changes first. For instance, a loved one may repeatedly ask the same question without realizing it has been asked and answered multiple times. Whether these signs and other symptoms are new or they’ve become the norm, it’s a reality unlike anything you’ve ever experienced. Fear, anger, and sadness are just some of the emotions everyone around this disease easily feels. But the power of observation helps us to be less reactive and moves us to a place of learning, care, and greater empathy.
“The two most important research skills are observing and listening. We don’t always see as much as we think we do, and we need to practice looking for information. Unless we are observing closely, we might not notice non-verbal behavior or other cues that tell us the meaning behind what is going on.” (Source: Youth-led Participatory Action Research)
Here are two ways the power of observation can help in navigating early onset Alzheimer’s disease:
1. Gathering Information
Observation opens our eyes and ears to pay attention to what’s happening and how the disease is progressing within the individual, in the home, and in their workplace. This reflection is also helpful for the care partner to observe how they, their family members, and friends interact with the person who has the disease. An effective way to harness all of this information is to write it down in a journal. Journaling can be helpful in many ways, allowing us to sort through all of the emotions that accompany the disease and communicate effectively and purposefully with family, friends, and the medical community as the disease progresses.
2. Care
The greatest priority is to uphold the dignity of the individual with the disease which means we must continue to see them as a person and not the disease. This takes great care and compassion. And yes, it’s natural to become reactive to what we’re seeing happen in our loved one, but the power of observation allows us to practice greater empathy for the journey. By gathering information and processing what is happening around the disease we are better able to care more effectively for ourselves, the individual with the disease, and the family.
Here is an exercise to practice the power of observation. (Source: www.mindtools.com)
- Test your observation by describing a photograph, or listing everything in the room you’re in right now without looking.
- Record and consider your observations. Go beyond the things you see. Note the smells and sounds you experience too.
Finally, you are not alone. If you have any questions about early onset Alzheimer’s disease and what you are observing, please contact us by clicking here. We are here to help.