You Still Don’t Get It!

A gentleman was recently moved from one room in his care residence to another. Seems benign enough; however, it’s not what happened but rather how that is cause for alarm. The primary carer, his wife, had made careful plans with the staff team to come in the day of the move and occupy her husband while the furniture and necessary sundries were taken from the old room to the new, thus easing the transition and mitigating any confusion bound to take place. When she arrived as previously arranged, the move had already taken place and her husband had been relocated as if he was just another piece of the furniture. He sat dazed in his new room not understanding what had happened, feeling more confused than ever, knowing he was not in his usual place. His humanity ignored, his wife was left to pick up the pieces and try to smooth things over.

I am continually surprised by the number of professionals working with persons with dementia who have a profound lack of understanding of the disease. Those of whom I speak range from frontline care aids all the way to doctors of gerontology, and includes nurses and social workers as well. It’s not enough to study the hard sciences of anatomy, physiology, and psychology of dementia. To provide quality care, you need to understand the emotion and individuality behind this disease. There is a person there, not just a collection of signs and symptoms. It also requires the acknowledgement that dementia affects an entire family, not just the person with the diagnosis, and this includes the primary caregiver!

Once there is a diagnosis of dementia, too often those around the individual can start to act as if that person is no longer there; no longer a person, no longer capable of understanding or, more importantly, of feeling. This is completely inaccurate, and will only lead to poor quality of life and a miserable experience for all. Dementia doesn’t steal your humanity, your heart, and especially not your ability to feel. It takes your memories, your executive function. For far too long we have defined ourselves by our brain, by our intellect, and have forgotten that the essence of a person is their heart! Contrary to popular belief we do not require executive function to experience joy, laughter, love, fear, sadness, hurt, frustration, anxiety, or any multitude of human emotion.

Because a person cannot remember does not mean they cannot feel. Therefore, those whose memory has dissipated are not to be demeaned, treated with indifference, and especially not treated with cruelty. They are still there! They are not part of the décor. They have lived lives and contributed greatly to society. They deserve respect, and to be treated with dignity. It would behove all professionals who work with persons with dementia or Alzheimer’s to understand that just because an individual may not remember who you are, they will definitely remember how you make them feel!

In a professional setting there are schedules to keep, tasks to be accomplished, and many people to serve; but occasionally you may be required to adjust those in order to provide appropriate sensitive quality care, not only to those with the dementia, but for their caregivers and family members as well.

 

 Marjorie Moulton, Executive Director
We Rage We Weep Alzheimer Foundation
and Dementia Care Consultant drmmoulton@werageweweep.com
https://www.dementiaconsulting.ca