The typical pattern for how the medical system addresses dementia these days includes a visit to the doctor, and then a referral to a neuropsychologist for a neuropsychological assessment. This neuropsychological assessment typically involves about three hours of cognitive testing for the person with suspected cognitive change. A report follows, which outlines the specific areas of cognition assessed and which areas are showing strengths and deficits.
I have found this process to be helpful in only one situation. Mostly found this process to be unhelpful in the work my team and I do in the homes and lives of people living with dementia. It is also not helpful for the well-being of the folks living with cognitive change.
Let me explain:
Accepting a dementia diagnosis for families is a big pill to swallow. My observation is that families feel tremendous uncertainty and fear, sadness, and grief when they hear that their loved one is on the dementia road. I’ve heard families describe that diagnosis moment as a punch to the gut.
I regularly observe that there are family members that do not accept the diagnosis. In this situation, it can be helpful for a family member to be able to see a neuropsychological evaluation that clearly shows the cognitive decline. People with dementia get labeled as being “in denial” about the reality of cognitive change. But it is not denial, it is anosognosia. Instead, it is often those family members who cannot and will not accept the diagnosis.
However, my most frequent observation is that the process of neuropsychological testing is not helpful, and is usually harmful to the person living with dementia. Because of anosognosia, most people with dementia will not be able to accurately understand their deficits, and pointing out their deficits causes depression, fear, anxiety, and, often, anger.
I have had the privilege of doing dementia specialist work “in the trenches, so to speak” with people living with dementia and their families for several years now.
I have never asked for the results from a neuropsychological evaluation. I have never wondered what their results were. Because that kind of information is not helpful in the least when spending time with people with dementia. Instead, we are able to determine the functional level of a person’s cognitive skill and how it is impacting their ability to manage their lives. We are quickly able to relate this information to how much support they need and in what areas. And we do all of this in a person-centered, strength-based, caregiving-by-stealth approach. This means that our companion with dementia rarely experiences fear, anxiety, or anger in the process because our process often feels to them that we are just enjoying life together.
Neuropsychological evaluations, in my observation, have only one situation in which they provide valuable information, and that is when there is a family member in denial about their loved one’s dementia diagnosis. However, I have yet to find a time where that benefit outweighs the risk of negative impact on the well-being of the person living with dementia.
We can do better when we wish to gain information about how dementia is impacting a person’s ability to manage their life. We can use a far more skilled, kind, and informed approach that does not leave folks feeling even worse about their failures. An approach that gives families the information they need to plan and provide care that is the right care, in the right amount, provided at the right time, by the right team.
At Better People Care, we are giving families another way.
Honored,
Jill ©Jill Couch