Beyond Prevention: Rethinking Brain Health Across the Continuum
Alzheimer’s disease (AD) research is moving toward earlier detection, more precise diagnosis, and interventions designed to slow disease progression. As researchers get better at identifying risk and detecting disease earlier, it becomes increasingly important to consider the patient perspective: Do patients want to know their risk, and how should that information shape their care?
The patient perspective is at the heart of the fourth episode of “The Progress Profile: Alzheimer’s Research in Focus,” featuring Dr. Wiesje van der Flier, executive director at Alzheimer Nederland. In conversation with moderator John Harrison, van der Flier explores what earlier detection and prevention could mean for patients, families, and healthcare systems, and the reason that giving patients a stronger voice will be essential as the field moves forward.
Rethinking Prevention
Alzheimer’s disease prevention can no longer be viewed as a single intervention or a promise to eliminate risk, according to van der Flier. In the episode, she describes prevention as a continuum that includes lifestyle, disease-modifying treatment, care, and quality of life.
“When I hear prevention, I think about broad prevention,” she explains.
Primary prevention includes lifestyle interventions, while disease-modifying treatments are secondary prevention, and efforts to maintain well-being and delay nursing home placement are considered tertiary prevention.
That broader definition reflects how the field itself is changing. Advances in diagnosis make it possible to identify disease earlier, when the opportunity to intervene may be greater. But earlier detection also introduces difficult questions about what happens after a risk signal is identified.
Wanting information and being prepared to act on it are not necessarily the same thing, cautions van der Flier. Mild cognitive impairment can leave patients with an answer that is difficult to interpret: They may remain stable, or their condition may decline.
Biomarkers could provide additional information but don’t completely eliminate uncertainty. Instead, they may make it possible to have more informed conversations about what a result means, what remains unknown, and what options are available.
Making Risk More Meaningful
As early detection becomes more common, communicating risk will become an increasingly important part of care. Simply labeling someone as “high risk” or “low risk” may not provide enough information for patients to understand what a result actually means.
Van der Flier explores the idea that communicating that information effectively will require more than simply giving clinicians better tools. It will require helping healthcare professionals understand how to discuss uncertainty and helping patients identify what information they want and how much uncertainty they are comfortable with. Shared decision-making is a growing part of the conversation.
“Some people would like to choose themselves, and some people like the doctor to make the choice,” van der Flier says.
She points to research that examined doctor-patient conversations and found that clinicians often believed they were engaging in shared decision-making even when conversations were primarily focused on providing information rather than eliciting patient preferences. Patients and their partners also often left with unanswered questions even when given opportunities to ask them. It’s a gap that could become increasingly important as more diagnostic information becomes available.
Giving Patients a Voice
Earlier detection will only improve outcomes if healthcare systems are prepared to translate new information into meaningful care. In the episode, van der Flier highlights the need to develop infrastructure, collect better data, and ensure that patients are active participants in shaping how the field evolves.
She emphasizes the need for both high-quality and high-quantity data, including large groups of patients followed over long periods and real-world data that can help researchers understand how biomarkers and other measures behave across populations.
Digital cognitive assessments and blood-based biomarkers could eventually help bring some of this testing into primary care. Van der Flier tells Harrison that she envisions digital tests that patients could complete at home or in a waiting room, followed by blood testing and referral to a memory clinic when results indicate a need for further evaluation.
But technology alone will not determine what this future looks like; patients need a meaningful role in shaping it.
“I think patients have been far too silent in this whole discussion,” van der Flier says. “We do need to take their voices seriously, particularly when you’re in the early stages of the disease when patients make explicit their wishes.”
The progress is encouraging, but van der Flier stresses the need for continued collaboration and a willingness to listen to the people at the center of the disease.
For more insights into what earlier detection could mean for patients and families, how clinicians can communicate risk and uncertainty, and why shared decision-making and patient voices will be critical to the future of Alzheimer’s care, listen to episode four of “The Progress Profile: Alzheimer’s Research in Focus.”