Improving Cognitive Assessments to Personalize Care

By Matt Phillion

A new brain health study has found that, when assessing patients with Alzheimer’s disease and related dementias, the most meaningful aspects of a person’s life are not being captured by traditional methods.

The study identifies that embracing a personalized, culturally informed approach to designing brain healthcare plans is where the industry needs to head.

The study’s researchers provide evidence on how care teams can use person-centered tools to identify and track personally meaningful treatment priorities for patients at risk of or living with mild cognitive impairment, Alzheimer’s disease, and other forms of dementia.

“Right now, it’s less that we’re using the wrong tools or getting something wrong, and more that we’re using a narrow list of tools,” says Dr. Ali Jannati, MD, PhD, director of cognitive science at Linus Health. “We’re not capturing the whole story, and we’re not enabling the patient to fully share their perspectives.”

Currently, traditional tests can take a long time to complete and may give some structure to the overall standardized picture of a patient’s cognitive function or status, but they’re not telling clinicians and caregivers if the patients can still manage the things they care about most, Jannati explains.

“This varies from patient to patient,” he says. “We’re overlooking how patients feel about their confidence in doing these things. They may feel okay now but may not have the confidence that they can keep doing them well over time.”

Current testing assumes a one-size-fits-all approach, but this approach does not reflect the individual needs and priorities of patients, Jannati explains.

“Patients have different priorities, lifestyles, cultures, and we’re not driving our decisions with those human dimensions in mind,” he says.

A focus on quality-of-life measures

It’s possible to improve by taking a harder look at what is asked in terms of quality-of-life measures, Jannati notes. And it doesn’t hurt to start generic: How does the patient function in terms of their social life, managing their finances, mobility, and social engagement?

“Our current assessments don’t go deep enough to be truly personalized,” Jannati says. “While the questions we ask can have meaning for people, they don’t necessarily capture the most personally meaningful aspects of their lives.”

One tool to combat this gap in understanding is the electronic person-specific outcome measures (ePSOM) that allows the patient to name the activities in their life they care about the most—whether that is reading, socializing, or walking recreationally.

“Patients tell us in their own language and a free-text response format what those activities are and measure how confident they feel about them,” says Jannati. “That provides us with a richer picture of what is changing over time with that patient rather than saying, well, executive function is down with this person.”

There are a thousand different measures of cognitive function, Jannati explains, but they don’t necessarily tell us how the patient is managing their household or how they reflect the individual patient’s daily life.

“We also underutilize motivational interviewing, engaging with their life or care partners, shared decision making. This can be powerful when paired with the right tools, and I don’t think they have been used frequently enough,” Jannati says. “Now we have digital tools that enable personalized evaluations and monitoring at scale, but it’s going to take a shift in mindset to deploy them widely.”

Giving the patient a voice

Asking more open-ended questions using the patient’s own language requires a bit more analysis than a standardized test, but combination of ePSOM with advanced technologies like natural language processing and large language models can extract themes from those responses and categorize them in far more personalized ways than generic responses, Jannati notes.

“We’re talking about hundreds of categories that allow clinicians and researchers to see which areas the patient is feeling more or less confident about, which areas of life matter to them most,” says Jannati. “It allows investigators and clinicians to track changes in meaningful functions that matter most to the patient and also consider what we can do about it.”

This also opens up the opportunity to then tailor the management and recommendations for these patients toward areas that matter most to them.

“This might be specific to culture, to a population, or at the individual level,” says Jannati.

The biggest barrier to change, Jannati notes, is inertia.

“Health systems are built around legacy tools, and these are tools that administrators or clinicians have spent the most time using or are most familiar with,” he says. “But as we engage with these professionals and they see the value of monitoring what matters most to the patient, that perspective can change.”

There is also a tendency to lean upon that which is most easily measurable and standardized; simple tests are easier to track, though they don’t capture subtle changes that matter to the patient.

“Also, access to these tools ties into an issue of equality,” says Jannati. “We know patients from underrepresented backgrounds are likely to be underdiagnosed or misdiagnosed, so digital tools like ePSOM can help overcome that barrier of inequality.”

These digital tools can be used remotely, completed at the patient’s leisure, and remove the stress of visiting a clinic or hospital, which can often get in the way of testing in the first place.

Making change must come from all parts of the healthcare journey, but clinicians are at the forefront when it comes to making a cultural shift in how this patient population is diagnosed.

“As we engage with more clinicians and as they incorporate our tools into their workflow, they can see the improved efficiency and level of standard of care,” says Jannati.

Clinician involvement can be a triggering action, but regulatory bodies and payers also need to become involved, he notes.

“Regulatory bodies like the FDA and the EMA [European Medicines Agency] have      emphasized the importance of patient-centered outcomes in clinical trials,” Jannati says. “But we need to move from policy talk to implementation to involve agencies, administrators, finance departments. We need to leverage  all points of contact through the health system, as well as families and health advocates.”

Patient advocates can really help drive change, Jannati notes.

“They can say: will this drug help my mother keep doing what she loves, or is it just changing a brain image but doesn’t necessarily make a meaningful change in her life?” Jannati says. “A drug may change the pathology of the brain, but does it translate into meaningful, tangible improvements in the patient’s daily life?”

Data collection to back up the recommendations will be a necessary component of this change, something Linus Health is already working on.

“Capturing the treatment effect can incentivize the adoption of these superior tools by the industry. Are they seeing changes in the patient’s verbal memory, social engagement, confidence, or at least seeing a slowing of decline in the priorities that matter the most to individual patients?” says Jannati.

Jannati sees a real need for the industry to move toward focusing on individual priorities and personalized medicine.

“We need personalized cognitive care that focuses not merely on symptoms but on enabling patients to engage in activities most meaningful to them,” he says.

This means action plans that don’t just contain general advice like exercising more, changing your diet, or trying to be more socially engaged.

“Those things are important,” Jannati says. “But they’re not going to resonate as much as the advice in an action plan that is focused on the individual’s personal preferences. When we know a patient is starting a new Alzheimer’s treatment, we’re not just looking at brain scans. We’re asking: are they still planning meals, attending social events, volunteering, etc., specifically in the activities that matter the most to them?”

When treating these types of conditions, it is especially important to humanize the care.

“Neurodegenerative diseases like Alzheimer’s impact the person’s identity. They attack the patient’s memories, their sense of being and purpose in life, the way heart disease or cancer does not,” says Jannati. “And what is important to the patient may change. They might not care about reading a lengthy book when they are 85 years old, but maintaining conversations, reading articles, and following movie plots may still be important to them. Information like that is not easily captured by the generic, standard tools most clinicians use.”

Matt Phillion is a freelance writer covering healthcare, cybersecurity, and more. He can be reached at matthew.phillion@gmail.com.