Blog #19

“How do we know when it is time to do something different with Mom’s care?” 

“How do I know when it is time to move them to memory care?” 

“I feel like I need more information to make better decisions for Dad’s care.” 

“What stage of dementia is my husband in?”

“How do I know what kind of dementia my wife has?” 

These are common questions and concerns that I have interacted with just within the last month! They are good and legitimate questions, and all built out of advocacy and wanting what is best for a loved one. 

Unfortunately, I have also recently heard of two doctors having told family caregivers to care less about neuropsychological testing and suggested it was a “waste of time.” 

I beg to differ. 

What is a neuropsychological test? According to Cleveland Clinic, “A neuropsychological evaluation is a test to measure how well a person's brain is working. The abilities tested include reading, language usage, attention, learning, processing speed, reasoning, remembering, problem-solving, mood and personality and more.” In short, it can answer most, if not all, of the questions that are at the start of this blog. 

Neuropsychological testing can tell a lot about how a person’s brain is functioning and, if given more than once over a length of time, can detect change and/or decline in any specific area. Tests assess these functions:

• General intellect.

• Reading/reading comprehension.

• Language usage and understanding of what others say.

• Attention/concentration.

• Processing speed.

• Learning and memory.

• Reasoning.

• Executive functions, which are higher-level skills you use to organize and plan, manage your time, problem solve, multi-task, make judgments and maintain self-control.

• Visuospatial skills.

• Motor speed and dexterity.

• Mood and personality.

Based on these tests, a lot can be determined about what parts of the brain may have significant cell death or damage. They can also start to tease out symptoms and how they correlate to the most likely form of disease that causes dementia (i.e. a diagnosis). It is important to know that until just recently it has been impossible to tell exactly what disease led to dementia while an individual is alive. For years we have boasted, “Only after an autopsy is completed can we ever really know for certain what kind of brain disease occurred, and even then, there is room for error as science is continually learning new things about dementia and its related diseases.” In this arena, we must allow for an evolution of know-how and a bit of grace as knowledge is growing and solidifying through dementia research. What we thought we knew to be true a year ago may now be updated. 

After an assessment is completed, a report is provided to summarize where the concerns are and what is recommended for the patient’s level of care and safety. The neuropsychologist is available to discuss the results and what may be best for future plans when it comes to housing, treatment, and safety. 

With this test and the insight from the neuropsychologist, in connection with a neurologist, predictions can be made about what disease you are interacting with and what is causing the dementia, along with what stage of dementia the person may be in (early, middle, or late). In addition, some of these assessments can navigate ancillary diagnoses such as depression, anxiety, paranoia, oppositional defiant disorder, etc. 

We know that having a diagnosis can give us great relief. If we know what we are working with, we can start with an action plan. While there is no cure for dementia, there is medical help for other various mental health diagnoses. This relief and treatment can make a person with dementia much more comfortable within their own body and it can make your life a bit more tolerable as you care for them. For example, if anxiety is diagnosed during a neuropsychological assessment, treatment can be sought, the person with the diagnosis finds a bit of rest for their soul, and you get to enjoy a lower energy in the room. This feels hopeful that some things can be treated and improved in the thick of dementia care. 

Sure, it is true that it may be challenging to get your loved one to participate in this test. And it is true that the testing can be difficult emotionally and mentally for the one being assessed. This may be the reason that the previously mentioned doctors poo-pooed the idea. Overall, the information and take-away is well worth the few hours of discomfort. It may be helpful to know that some neuropsychologists are willing to do the assessments in a home or assisted living community. That may make things a bit easier as well. 

It is also important to work with a consultant, social worker, or directly with the neuropsychologist on creative and clever ways to get this assessment done. They may offer you some creative tips and tricks on how to get your loved one to comply or reduce the challenges. 

If the one being assessed absolutely refuses to participate in some or all of this testing, that information too is helpful to a neurologist. Often times refusal to participate is due to a person knowing that they may fail or not succeed as they may have in the past. They know they will be found out to have new declines in functioning. This is a protective behavior and is something that needs to be approached very sensitively and carefully as the defiance, beneath possible anger, is likely shame and embarrassment. 

The final benefit to having a neuropsychological test completed is that it is an objective assessment which cuts through all the subjective wonderments of family members and loved ones. Especially if/when there are disagreements between family members, this is unbiased information that levels the playing field. For example, if the summary states that the person needs 24/7 care and is not safe to live alone in the home, then the possible disagreement on this issue is now resolved. In addition, it makes the medical professionals the “bad guys” to blame rather than the family members. It is important to stay the good guys as family members as often as possible, and this is one opportunity to blame some possible bad news on someone else for a change! 

https://my.clevelandclinic.org/health/diagnostics/4893-neuropsychological-testing-and-assessment