Alzheimer Disease: Disclosing A Diagnosis
DECEMBER 11, 2019
Alireza Atri, MD, PhD: The other thing that the Alzheimer’s Association guidelines for best practices is going to address is care through a multidisciplinary group, and that includes the primary care setting, specialty, and subspecialty. But something that’s common to all of us is, how do we discuss and disclose the diagnosis? How do you set that up, and what do you do? What’s your process?
Mary A. Norman, MD: I think this is probably the most important appointment that you have with the patient and, hopefully, care partner, which I think is essential when you’re disclosing the diagnosis. The hardest thing in primary care practice is you have to allow time. These are typically visits that are at one end or the other of my day—before lunch or at the end of day—so I can really spend the time that the family and patient need.
I think disclosing the diagnosis, as we’ve discussed, saying, “What do I think you have?” Is it normal aging? Is it mild cognitive impairment? What does mild cognitive impairment mean? What is dementia? You’ve gone through this process, but I think [there is] iterative training for the patient and the caregiver to say, “What is dementia? What does that mean?” The prognosis. “Based on my stage of dementia, what can I expect?” “What do you see in me that makes you say I have dementia?” That’s a lot. “What are you seeing? That my memory is OK? But I started looking at porn on the video.” You know, “What is it that you’re seeing?” There are a lot of misconceptions, so I think this is a time of active dialogue between the patient and the caregiver in truly understanding the diagnosis.
And in the etiology. I think often we, in primary care, may not get through the 3 steps. We may pause and not really say, “I think you have Alzheimer disease.” And then the hope and the next step: “You have this. But as I said in the beginning, I’m part of your team. Here is what I think the next steps could include. How do we partner together to walk this path?” And that includes involvement of other subspecialties for support, community resources, the Alzheimer’s Association, and other incredible resources for both the patient and the caregiver.
I know we’ll speak a little more specifically about the caregiver, but what I typically say at this point in the evaluation is, “The very most important treatment I have is your wife, your daughter, your care partner, who’s going to hold your hand and be with you throughout this process.”
Alireza Atri, MD, PhD: That’s really important. Maybe we can talk about it now—about the caregiver and care partner, and assessing how they’re doing. That’s part of the process. How do you approach that from the beginning, and how do you assess it? And then how do you disclose that?
Mary A. Norman, MD: Part of our evaluation is actually doing caregiver screening. We do use formalized caregiver burden screens. As I approach the diagnostic work-up, I say there’s usually homework for both the patient and the caregiver. Many of those screens can be completed and brought back to an appointment. And again, it helps me quickly zero in on the critical needs. Respite. Time for themselves. I really spend a lot of time talking about the data that suggest that caregivers often die before a patient with dementia. And that’s very surprising, usually, to patients and family caregivers. Oftentimes there’s a reluctance to bring in just a little care that can make a world of difference.
We really started doing formalized care planning when Medicare came out with special codes that allowed us to have that time and bill for that time. Two years into that process, the biggest impact that we’ve had on the treatment of my patients is caring for the caregiver. It’s very heartwarming. I had 2 couples come in last week. We had spent a lot of time with education and caregiver-support groups that we have on our campus, and day programs for the patient with Alzheimer disease. And with that same interaction in the clinic office, which would have been a frustration where the patient might have said something inappropriate or flirted or done something that initially would have embarrassed the caregiver, now we’re all able to redirect and laugh and smile. To be able to bring joy back in life by this teamwork and team approach—really, there is always healing.
Alireza Atri, MD, PhD: So the multifactorial approach is the appropriate, timely diagnosis. It sounds like always monitoring, educating the patient and the care partner, and developing shared goals. And then you mentioned pharmacologic. It sounds like taking away the bad medicines and things like that. In this next segment we’ll talk a little about pharmacology, but it sounds as though it’s always driven through the patient and the care partner, so they have to understand that.
Transcript edited for clarity.