Early Diagnosis, Testing, and Treatment of Dementia - Episode 6
Alireza Atri, MD, PhD: Coming back to the geriatric internal medicine practice clinic, Mary, what’s your approach to setting up the evaluation process? Would you get involved? How do you explain the process? How do you monitor it?
Mary A. Norman, MD: I think it’s very important to establish a strong team. I talk with my patients about that, saying, “Hey, I’m on your team. I’m going to walk this walk with you. We both have concerns.” And the first thing I ask is, “Can we involve a family member, a friend, a colleague, or someone who knows you well who can be another set of ears?” Four ears are always better than 2. We all have blind spots, so it’s very important, as we’re investigating this, that we have a good team surrounding us.
And then I talk about what we do to investigate cognitive behavioral concerns, and that there will be some further testing to help us determine whether this is normal aging or more of an Alzheimer or other type of dementia process. We’ll also do laboratory testing. We’ll do, potentially, brain imaging, in most cases. We’ll meet together at each juncture to go over the results, to answer questions, and to talk about caregiving concerns. I talk a lot about the importance of the caregiver who is most involved being present to help at every juncture with both processing the information that we’re sharing and also helping to develop a care plan jointly—the shared decision making and the approach. Certainly, it’s not a one-size-fits-all. We’ve got to look at each person individually.
Alireza Atri, MD, PhD: Great. You’re setting up the goals, and coming up with this triadic relationship between you, the patient, and a care partner. Let me pose this question to Marc. Marc, how do you, along the way, assess knowledge, capacity, and tweak your education and monitoring in this process with your patients’ families?
Marc E. Agronin, MD: This really becomes one of the most important concerns over time, because as you’re trying to manage someone, you need to know that they’re able to take their medications correctly, they’re able to be safe in a different environment, and that they're able to make decisions that make sense. And with any form of dementia, especially as it progresses over time, that ability changes. Sometimes it can be difficult to know at what point they’re becoming more vulnerable. So the baseline evaluation is key, and this is where some form of neuropsychological testing is going to make a difference. You’re going to be able to assess their decision-making abilities, or what we call capacity across several different domains.
There are 3 particular areas, whether it’s in a routine evaluation or whether you’re doing a more in-depth mental status examination, that we really try to look at with the issue of capacity. The first thing we want to know is, can someone really understand the topic at hand? Can they inventory what’s going on, what medications they have to take, who’s involved with their care? Really, do they know the landscape around them? And if someone doesn’t know that, or they’re losing touch with that, already they’re impaired and everything that follows is going to be difficult.
The second issue we look at is, can they reason about it? When you discuss whatever the issue is with them, whether it’s managing something at home, whether it’s driving, or maybe they’re still at work, are they able to engage in a discussion about what’s going on in those different settings? Do they have insight into what their condition is, and can they talk about it in a way that’s meaningful and makes sense? And then finally, can they take this information and this reasoning building and actually make decisions that are consistent over time? There might be individuals who certainly have strong opinions and they’re making decisions. They could be bad decisions, but we need to have a sense as to whether they are reasoned out appropriately. And this is where I think a lot of physicians struggle. If you don’t have the information on their overall cognitive status, it’s really hard to know how they’re making those decisions. You need an informant as well.
Mary alluded to something earlier that is critical, which is that a lot of people get exploited, and neglected, and abused, who are suffering from dementia, because there’s no one around them to realize what’s going on. And so, it might be the person who is calling them and asking for money, and they’re just kind of giving money away; or they’re having people come into their home and it’s not a safe situation; or they’re dependent on someone who’s not taking good care of them. The role of the clinician here is critical to be able to get to know them well enough, and to engage with them to know their informants and their caregivers to assess this.
I would add 1 other point. I think sometimes there’s a lot of confusion between decision-making capacity and competence. Capacity is always going to be relative to certain areas. Someone might be able to have the capacity to say, “I want to do X, Y, or Z,” and not have the capacity to make other, bigger decisions. They might need help. Competence is something that’s a legal term. Judges determine that. We work with people all the time who have variations of their capacity to make decisions, but they’re still technically and legally competent. Those are also important things to address, because sometimes, family members will come to us and they’re concerned about someone’s situation, and yet there might be legal barriers in the way of getting more involved. And so, we try to work with the person and the family to try to make certain that, at the end of the day, they’re safe and they’re getting good care.
Alireza Atri, MD, PhD: I think those are some really good points. And I think, Mary, you alluded to the fact that one of the things that we have to, as clinicians, safeguard is making sure that what we’re doing isn’t harming patients. Managing their medications. Do they have the capacity to manage their insulin now? Do they have the capacity to take their blood pressure and the medicines in the right way? I think that’s another big point. Really, the onus is on us, as we’re giving them things that can really harm them, that we don’t become a vehicle for that. That’s really important.
Mary A. Norman, MD: The other thing I find, too, in choosing that care partner that’s going to be in this process is it may not be the patient’s spouse.
Marc E. Agronin, MD: That’s true.
Mary A. Norman, MD: And oftentimes I see, as I begin to involve other people in the evaluation, that they perhaps have some impairment themselves. And so, I think that part of an early process of deciding who’s on your team and when we involve your daughter who is in California, who can conference in by a phone call if they can’t be there, is probably one of the biggest challenges in a primary care practice—taking the time to make sure you have the right people on your team.
Marc E. Agronin, MD: That’s critical, and making certain that you have social services at your fingertips. You might be meeting with the person, and the daughter is on the phone from California. You realize this person can’t take their medications. The daughter’s in California. Who’s going to help them? And who’s going to help them that evening? That’s a big challenge. But if you have individuals who you can call upon, services to call upon, that gives you that sometimes urgently needed safety net for someone.
Transcript edited for clarity.