Alireza Atri, MD, PhD: Mary, I’m going to ask you the last couple of questions. What do you think are the major unmet needs in primary care for detecting in a timely way and managing Alzheimer disease? And how can health care providers in the front lines work best with specialists to really manage this care to patients and families who are very deserving?
Mary A. Norman, MD: I think the first thing is education. Education on the part of the community—so family members and patients are aware that there are things we can do if we diagnose—and for the medical profession. There are still a lot of myths, and there is misinformation that cognitive loss is a normal part of aging and that there’s nothing we can do about it. What we’ve talked about in this program is that there’s a tremendous amount that we can do. Perhaps we don’t have the cure, but there are many things we can do to provide improved cognitive performance, improved care for the caregiver, extension of quality of life, length of life, joy. And so I think there’s a lot of education. I would say that’s No. 1.
And for the providers, we need to educate ourselves on cognitive health—what’s normal, what’s not—and when to refer. Each of us will have our own area of expertise. As soon as we feel uncomfortable— “I’m not certain. I don’t have diagnostic certainty that this is Alzheimer disease. This has some atypical findings, and I’m not exactly sure what it is”—having that team of providers, and neuropsychologists, neurologists, neurology subspecialists, dementia specialists that we can turn to in each of our areas is important.
Alireza Atri, MD, PhD: Great. This has been incredibly informative. Before we completely end the discussion, I’d like to get some final thoughts from each of our panelists—maybe a clinical pearl about what you would do or think about. I’ll start with Marc.
Marc E. Agronin, MD: We’ve seen a complexity of this disease, but everything starts with the patient. We need to put in the time to build a relationship with them to focus on their strengths, because we’re forming a partnership with them [that] extends over years. The more we give that time and respect, the better the patient and caregiver will do.
Alireza Atri, MD, PhD: And you, Mary? A clinical pearl for us?
Marc E. Agronin, MD: I would reinforce the concept of a team. I think when we think of dementia, it seems overwhelming at times. But it’s important to establish your strong team, where each of us plays a part, and we’re all doing that patient-centered care.
Alireza Atri, MD, PhD: Thank you. Brad?
Bradford C. Dickerson, MD: One of my colleagues likes to say that there’s, unfortunately, not a cure for Alzheimer disease, frontotemporal dementia, or related diseases right now, but there is a cure for the isolation and loneliness that accompanies all of them for each patient and their family members. I think the importance of the partnership with the medical provider and the team is important. We always have to say, “We’re going to be with you for this journey,” as Mary well articulates. “We want to be proactive about how we approach this journey, and help you think about issues that may occur.” We hope they won’t, but we should plan ahead and not just react to them when they inevitably do occur for some people. And then I think the empowerment of participation in research, even if it doesn’t help the person who participates, is often very meaningful for patients and families. Connecting people with the trials and the research studies that fit with their interests and goals is fundamentally important. There are more and more of those. As Marc says, they’re accessible to people.
And finally, helping people engage with the community that they’re a part of. In this case, the Alzheimer’s Association, but there are grassroots associations for all these diseases. And connect and also advocate. We’ve seen tremendous increases in the federal funding for Alzheimer disease and related disorders over the last 5 years, and that’s the direct result of the advocacy of our patients and their families, and the communities that we’re talking about here. We always try to touch on those points: why it’s important to make a diagnosis, and some of the things that can be done to help empower the members of our community who are suffering with these diseases.
Alireza Atri, MD, PhD: Lynn?
Lynn Shaughnessy, PsyD, ABPP/CN: I think really engendering hope is so important in both the patient and the caregiver, and giving them the tools they need to really manage this disease process over time, together. And kind of being that partner for them is really important.
Alireza Atri, MD, PhD: That’s right. The message of hope and partnership and community is really important. So thank you, all, for your contributions to the discussion. On behalf of our panel, we thank you for joining us. We hope you found this Peer Exchange discussion to be useful and informative. Be well.
Transcript edited for clarity.