GLHC Marketing Manager
June is Alzheimer’s and Brain Health Awareness Month.
While I am among a minority of people in the U.S. without a direct family connection to Alzheimer’s disease, it has become personal to me.
Alzheimer’s disease is the most common form of dementia. Dementia is an umbrella term used to describe all forms of neurological illness associated with memory loss and a decline in cognitive function. The different types of dementia are determined by the particular cell damage they cause in the brain. Dementia is irreversible and progressive. It slowly destroys memory and thinking skills, and eventually disrupts the body’s ability to function. It is the sixth leading cause of death in the United States. A dementia diagnosis is devastating news for those afflicted and their loved ones.
Beyond the obvious physical and mental toll that Alzheimer’s and other dementias take, those afflicted must also cope with the stigma that comes with it. For many in society, and too often particularly in the clinical community, an individual with a dementia diagnosis stops being seen as who they are as a person. Instead they are defined by the sum of their symptoms and responsiveness to treatment. They become a problem to solve, rather than a person to value. This is not unique to those with dementia. Certainly, those with other chronic or incurable conditions experience it as well.
In the process of transforming the U.S. healthcare system, a great premium has been placed on shifting from “volume to value” in care delivery. A central tenant of that change is assuring that care is “patient-centered”. While the intent of this refocused emphasis is right minded and well meaning, it can cause someone’s status as a patient to supersede their person-hood.
To reset our compass, the term “patient-centered” care should be replaced with “person-centered”. Person-centeredness recognizes the individual receiving healthcare (the patient) as a “whole person”. A person with a life, family, community, and purpose beyond their disease. It considers the person’s needs, values, and preferences, and emphasizes the role of the individual in a collaborative partnership with their clinicians, caregivers, and loved ones.
A Personal Connection
John and Madeline are the parents of my oldest friend. As a kid, I was a regular fixture in their home, after school and for countless sleepovers on the weekends. After my parents divorced, John & Madeline stepped into the void created by their separation. They provided support, shelter, and much needed stability.
As a kid, I thought the song “Big John” by Jimmy Dean was about John. To my twelve year old self he was a giant of a man, both in stature and presence. He carried himself with a soft-spoken confidence and humble wisdom. John was a skilled carpenter, and I remember thinking that he could fix just about anything.
My friend and I could be dangerously creative, and we were always thinking up adventurous new ways to test fate. Inevitably, John would hear the racket we were making in their barn and come out to see what we were up to. But he rarely tried to talk us out of whatever we had planned. Once he was sure that it was unlikely we were going to kill ourselves, he would roll up his sleeves and join us in the effort. The impression that John made on me at a young age was profound.
About a year ago, I received a text from my friend, telling me that his Dad, “Big John”, had been diagnosed with Lewy Body Dementia. Lewy bodies are protein deposits that develop in the brain’s nerve cells, impairing memory, cognition, and motor function. Lewy Body is the third most common form of dementia.
In considering “person-centered” care in the context of Alzheimer’s and Brain Health Awareness Month, my time spent with John and Madeline after his diagnosis comes to mind. While I am not a clinician, I do have experience working with those suffering from dementia, and I possess a better than average understanding of the disease. Yet at no time did I ever think of John in terms of his illness. Rather, I was that twelve-year-old kid again, in the presence of his soft-spoken confidence and humble wisdom. In relation to all that he had given to me and to the world around him, his dementia was barely a footnote. This was not a conscious choice, it was automatic and came naturally – THAT is PERSON-centeredness. How differently might we think about illness if we were to view every patient in the context of their WHOLE life? I think it’s an approach that is worthy of consideration.
At Great Lakes Health Connect, we are privileged to work alongside colleagues from Making Choices Michigan (MCM). MCM is a community-driven collaborative that takes a person-centered approach to helping people discuss, decide, and determine their preferences for future healthcare. The process, called advance care planning, results in the creation of an Advance Directive. This document then becomes available electronically to healthcare providers across the state through the GLHC community health record, known as VIPR.
In addition, MCM collaborates with the Alzheimer’s Association in Michigan to provide education, resources, and support for those afflicted, as well as their caregivers and loved in ones dealing with a dementia diagnosis.
Learn more about how you can create and upload an Advance Directive at no cost by visiting the Making Choices Michigan website: www.makingchoicesmichigan.org. For access to resources and support through the Alzheimer’s Association, reach them at www.ALZ.org.