In the words of Henry David Thoreau “If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away”.
Most of us have probably heard this famous quote a time or two in our lives. It’s taught in Philosophy classes and the Humanities. It’s been celebrated, venerated, awarded and applauded and the kick-off quote in our “Thought of the Day” desk calendars. So, why is it so difficult for us to apply this to our understanding of Dementia?
There’s a prevalent misunderstanding that “dementia changes the person”. Dementia does not change the person. It may change a person’s perception of the world and alter some functions, but they are still the same person, living in our same world. They are here but perhaps perceiving the sights, sounds, and events of our mutual world differently. They are living their lives. They are not so different albeit the drum beat to which they step may be different from our own. In this day of educational initiatives which support inclusion for all, no matter our differences, why is this basic concept bypassed when it comes to understanding not just Dementia but the many Human Beings who are facing it’s challenges every day.
I often hear the comment “I’ve lost my (father, mother, brother, sister, friend) to Dementia when, in fact, the person declared “lost” is sitting, living and breathing in a chair 5 feet away. They are not lost…they’re waiting to be found, seen, validated as a human being. Our worlds may look very different, but it’s the same world. Through the process Persons Living With Dementia (PLWD) may sometimes seem “difficult”…they’re not trying to be difficult. They’re not trying to give us a hard time…they are having a hard time because we keep trying to change the rhythm of the drum beat they so clearly hear to match the cadence of our own. It only ends in a cacophony of sounds irritating to all parties. And, therein lies the divide. Our world vs. Their world.
It's the same world, but if we insist on putting up a wall or digging into a divide to mark the boundaries of “my world and your world”, then let’s find a way to join PLWD in their world and alleviate the frustration we ourselves cause by trying to pull them into a perception of a world that does not keep pace with the rhythm they hear. How would you as a Human Being without Dementia feel if someone were constantly correcting you, or making every effort to convince you that your perception of life and events were incorrect? I’d gamble a bet that you’d be frustrated, agitated, and eventually cut off communication with that person. So, why are we saddened and surprised when a PLWD becomes agitated or no longer has anything to say to us. Dementia hasn’t “shut them down”, we have. To live your life alongside of someone living with the challenges of Dementia without frustration and regret, please join them in their world. You don’t have to subscribe to their perceptions, but for the sake of their dignity and self-respect, please stop correcting the rhythm of their step. You may ask “why do I have to be the one to join them in their world and step to their rhythm” Good question. Answer: Because you still have a fully functioning brain, and they may not. If they were in a wheelchair with their leg in a cast would you ask why you have to be the one to assist them up a hill? Another gamble…I bet you would not ask that.
Please join them in their perceptions of life. It may take some practice, but when the situation arises, try to step with their rhythm rather than attempt to force them to step to ours. Ask yourself, “ whose problem is it?” Is it a problem for them that they think it’s 1972, 1984, 1953, or is it a problem for us? If it’s not a problem for them, and in fact providing a sense of comfort for them, let it go. Join them in their reality…ask questions about their life at that time. Longer term memory in PLWD can provide us with a treasure trove of information and memories we may not have left to cherish if we insist in relegating their musings to “Dementia”.
The greatest Artists, Poets, Writers, Philosophers of all time…were they just like you and me? Did they step to the rhythm prescribed by the mores and taboos of society at the time? Last bet, last gamble…I’m going to bet you say “probably not”. Yet we explored their thoughts and musings…accepted, or at least respected some “quirky takes” on Humanity and folded them into life with all of its differences.