One of the most important things for us to understand as dementia caregivers is the difference between the remembering self and the experiential self. For some reason, it’s easier for us to grasp having a remembering self and harder for us to imagine the experiential self – that part of us that continues on despite dementia.

However, when someone is experiencing dementia, although they are losing memories and the ability to remember, they are not losing awareness of the present or the ability to experience what takes place in the present.

The remembering self. I think of my remembering self as the part of me that has memory skills, such as the ability to use recall to search for and retrieve things that I’ve experienced in the past. It is also the part of me that feels nostalgia and familiarity and likes to reminisce with loved ones about the good times that we’ve enjoyed together. I have other memories that are not as fun to recall, but those are a part of my remembering self as well. My remembering self is the sum of my memory skills, all my experiences and memories from the past, and the good and bad feelings I have about them.  

For people with healthy brains, the remembering self is alive and well – as is the experiential self.

The experiential self. Our experiential selves are the part of us that exists in the present and takes in the diverse information our senses are providing. I may jump at a loud sound, feel a surge of pleasure when a song I love comes on the radio, realize I am feeling hunger pangs, feel a sneeze coming on – myriad stimuli may be occurring in the present and I will experience them.  

With a healthy brain, if I were to jump at a loud noise, I could use memory or rational thought to identify or interpret the reason for the noise. I could recall the sound of a whistling kettle or door slamming and not feel alarmed. With a healthy brain, I could also choose to tune out the present and the sensory data coming at me there and focus on a memory instead or on something I anticipate happening in the future.

For someone experiencing dementia and losing memory and rational thought, it’s not as easy to escape the present. Their remembering selves with their memories and memory skills are fading. Their rational thought skills are failing, making them increasingly unable to interpret the sensory data their experiential selves are delivering moment by moment.

But the data keeps coming in. That’s why it’s so important that we, as their caregivers, understand what the experiential self continues to do. The experiential elf continues on, in the present, experiencing.

Living with the experiential self alone. Although our loved ones and clients are not able to recall, interpret or express ideas regarding their experiences, they are still having experiences. Their experiences are causing them pain and relief, happiness and sadness, fear and anger, just like ours are causing us. They, however, are less able to choose to leave the present for a happier memory or hopeful future.

When someone is experiencing dementia, we need to be careful that we treat them respectfully and kindly at all times. They will become unable to describe how they feel, but they are not unable to feel.

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