For those of us with a parent or spouse with dementia, the healthcare community’s lack of understanding of Alzheimer’s Disease and related dementias is nothing new. The inability of healthcare professionals to communicate effectively with dementia patients and their families is also typical. But in light of a stunning experience that my in-laws recently had at a neurology practice, I’m challenging neurologists to step up and set the example for others.
My mother and father-in-law (aka caregiver and patient) recently stepped out of their comfort zone to see a neurologist about the alarming memory problems that my father-in-law has been struggling with for the past few years. My mother-in-law was understandably nervous – not knowing how her husband would react to being evaluated for dementia. As she found out, she had more to fear from the neurologist!
First sign of trouble…
They made an appointment at a neurology practice recommended to them by their family doctor. Due to scheduling issues, they were assigned to a doc who was brand new to the practice. Her sloppy, unprofessional appearance was an immediate red-flag and perception went downhill quickly when she sat down at a computer and typed for the remainder of the visit – never making eye contact. To make matters worse, the electronic health record into which she was typing had incorrect medical history data. Instead of correcting this misinformation, she argued about its authenticity with both patient and caregiver. Note to docs: patients generally know with reasonable accuracy if they have had surgery or not!
“What does it mean when you put all of your eggs in one basket?”
There are standard tests performed by neurologists and other medical professionals to evaluate people who have symptoms of dementia. The question, above, is NOT on any of those tests, but it was asked of my father-in-law by a neurologist – the same person who proclaimed “I don’t really think he needs to be on medication”. Let’s discuss these multiple blunders — one at a time!
First, if you are going to administer any kind of memory test – explain what you are doing and why. This neurologist never did and my in-laws were left to wonder what was going on and why she was asking them strange questions. Second, use a STANDARD memory test. If you don’t know where to find one, they are conveniently located on the Alzheimer’s Association website. And finally, don’t speak about the patient in the third person when they are sitting right in front of you! Caregivers are especially sensitive to this when their loved one is seated next to them.
The only thing worse than medical tests is the process for obtaining the results. “If you have not heard anything, it means that it’s all right.” Or worse: “We would have told you if it was anything urgent”. This is not communication, this is a sound bite. But my in-laws had to endure the sound bites and the cryptic messages on their answering machine, and (when they were finally able to speak to her directly) the confusing description of the test results provided by a neurologist who they felt was “talking down” to them. She named several results from the test that they did not understand and then mentioned “brain shrinkage”. No explanation was provided. Just another sound bite.
A conversation about medication (or lack thereof)…
“Do you want me to put him on medication? If you want him on medication, we can put him on medication” – neurologist. Some context: this question was asked by a doc who never had a discussion about dementia drugs (pros, cons, what they do, what they don’t do) with the patient and caregiver. Even scarier: the patient had been on Aricept for a brief time, only to experience side effects that forced him to stop using the drug on the advice of the prescriber. This never came up in conversation, neither did a diagnosis! And my mother-in-law was (obviously) not comfortable answering this question because she did not feel she had enough information to do so. Therefore, the follow-on comment by the neurologist, “If you decide later that you want him on medication, just call me and I will order it”, was even less inspiring.
Dementia is complicated and so are the drugs approved to treat it. Using Alzheimer’s Disease as a specific example, there are several medications available now that treat the disease, but there is no cure and these medications only slow the progression of the disease (and have side effects in many patients). I can’t imagine a more important discussion to have with a patient and their family BEFORE they begin making decisions about whether medication is the right choice for them.
Neurologists: It is time to step up your game! I challenge you to work with the Alzheimer’s Association and the patient advocacy community to improve how you, your colleagues, and the entire healthcare community interact with dementia patients and their families. For those of you already on the forefront of innovation in this area, I challenge you to step forward and teach others. My family and millions of others faced with this devastating disease deserve better.