As a dementia specialist and advocate for folks living with dementia and their families, I’d like to propose we take a different perspective.

Every person who receives health care from a licensed provider will receive a diagnosis.  And with that diagnosis comes a code, a combination of letters and numbers, to simply classify the diagnosis so that the person’s medical visit can be billed to insurance companies, and so their medical issues can be tracked.

A person with dementia will receive a diagnosis of one of two varieties: “Dementia Without Behavioral Disturbance” (F03.90 in the ICD-10), or “Dementia With Behavioral Disturbance” (F03.91).  While these diagnoses may be further defined to outline the particular disease causing the symptoms of dementia, there will always be included the “with or without behavioral disturbance” classification.

The code for “Dementia with Behavioral Disturbance” outlines “violent, combative, or aggressive” as the behaviors that may accompany this dementia diagnosis.

But I’d like to suggest that we’ve got this diagnosis code/classification and, thus, our understanding of dementia, off target.

As Judy Cornish, founder of the DAWN Method outlines in her blog post, her observation, and mine also, is that dementia “behaviors” are less the effects of the losses of dementia (loss of memory, memory skills, attention, and rational thought), and more about an environment that lacks understanding of what these losses mean in reference to a person’s ability to manage their life, and what emotional needs are created when dementia is a reality. 

And could it be that because we lack understanding of the parts of personhood that a person with dementia keeps (intuitive thought, experiential self, mindlessness), we miss chances to help the person use those parts of themselves to their advantage?

Because a person with dementia is losing the ability to manage their environment, it then becomes the responsibility, and the privilege of the people in their environment to manage the environment in a dementia-aware, dementia-friendly way; to understand what our companion with dementia is losing and what parts of themselves they keep.

It’s the observation of myself and other dementia specialists that when we manage the environment in this way, our folks living with dementia have far fewer of the “behavioral disturbances”.  And because we understand dementia, we see that the “behavioral disturbances” are often very reasonable responses to an unfriendly, unaware environment.

But more importantly, when we manage the environment in a dementia-mindful way, our folks with dementia are more comfortable, more secure, with their emotional needs more satisfied and with fewer reasons to be uneasy.   

So instead of “Dementia With Behavioral Disturbance”, shall we instead classify the diagnosis as “Dementia With Unmet Emotional Needs”, or “Dementia With An Unfriendly Environment”?  

When we understand the underlying emotional needs that the person living with dementia is not able to meet on their own (due to cognitive losses), we can meet them.  And create, then, a dementia-friendly environment where our companions with dementia have the chance to know comfort and security…with far fewer reasons to show “aggressive, violent, or combative” behavior.

Dementia aware, dementia friendly.  Let’s all work together to become more of that.

Thanks for reading,

Jill