Dr. Larry Skendzel
Our society wants us to look at people with dementia as incomplete.
I often hear stories of all the losses. The “self” seems fragmented and no longer functional. Persons with dementia are viewed as defective, helpless and confused. This emphasis on the defects of the afflicted person doesn’t tell the whole story.
My experience is that people with dementia are all different. They experience the disease differently. They react to the world around them with a unique sense of self that becomes more subtle. They still have perspectives from past experiences that have been “sedimented into habits,” as described by Dr. Wim Dekkers at Radboud University Nijmegen in the Netherlands.
We only see the behaviors, but the person can’t often explain where or why the behavior is there. Sometimes the family has a key knowledge to what helps open the door to these experiences, and when the stimulation brings positive behaviors we want to continue to access these “strengths.” We also want to stay away from the things that bring forth fear or more confusion. Imagine how a veteran who has been a prisoner of war might feel when being awakened for dressing if it stimulates past experiences of being forced to do things while in prison. A “strength-based” approach to care planning opens up new avenues for hope.
For a person with dementia, it is their bodily existence and those things about their body that they are still able to control that become an expression of their individuality every bit as much as communication through language and memory.
Often, as caregivers standing on the outside of our loved one’s experience, we are unsure about what is helpful and what is not. We approach the person carefully and respectfully. We make eye contact and as we communicate, we watch the body using all our senses for signs of tension versus relaxation or pleasure versus pain and fear. We find clues in the body, in the response to gentle touch. Our intuition can guide us. Listening to the strong pull of our gut leads to new creativity.
I remember walking into my grandmother’s room at the nursing home and finding my sister in bed with her, holding her close in a beautiful embrace. This was probably the first time since Grandpa’s death that anyone had thought about Grandma’s need for more intimate touch. “I got tired of trying to talk and not getting any response. It just felt right. I could feel Grandma relax against my body,” my sister explained.
Music, art and pet therapy stimulate parts of the brain that are pre-verbal and a person with dementia in very late stages might still be able to access a unique response to these types of stimuli. One old country song can take a person back into older, sedimented memories and unlock a feeling or an image that can remind us all of the full personhood and dignity sometimes hidden by the disease. We try to integrate our findings into the story of each person’s life as we develop a medical care plan that is individualized and that meets the goals that they would likely share if they were able to talk and remember. Never underestimate the power of a good Johnny Cash song to evoke memories within us.
Dr. Larry Skendzel is medical director at Lake Superior Hospice and at D.J. Jacobetti Home for Veterans, both in Marquette. He is one of three medical professionals who regularly blog at www.lakesuperiorcaregivers.com. This is an excerpt from one of his blogs.