Improving Methods for Addressing Patients With Cognitive Decline
By Matt Phillion
A new survey by Sage Growth Partners finds that while healthcare organizations recognize the health and social impact of Alzheimer’s disease and related dementias (ADRD), there is a disconnect between the interest health plans have in solutions and the level of investment in new, evidence-based solutions.
Among the key findings, the survey finds that 83% of respondents believe they should be offering formal programs to help care for members with cognitive decline. Health plan leaders are enthusiastic about innovative interventions and support, including reducing social isolation, improving balance and physical health, and nonpharmaceutical treatments.
That said, leaders also feel that existing solutions are inadequate, yet they are not implementing new modalities that show promise, with most only delivering routine primary care (42%), memory loss programs (36%), companionship benefits (34%), telehealth (24%), and daily home visits (21%). These were found to be the most cost-effective options available.
“As a whole, the disconnect really struck us as interesting,” says Cynthia Benjamin, CEO and co-founder of Together Senior Health, an online health platform for older adults experiencing cognitive decline. “People see that there is an unmet need, and they often have a personal connection to Alzheimer’s and dementia, but plans don’t really have a clear grasp of how expensive it is for them and what their options are to help these folks.”
Nearly everyone has someone in their life with cognitive decline, Benjamin notes, and the industry understands that there is a need for better options—but it’s not investing in the space in terms of innovation and engagement.
“The care management isn’t on the same level as, say, diabetes,” she says. “Which is not to say that caring for those other diagnoses isn’t important, but Alzheimer’s and dementia are not front and center despite their prevalence and cost.”
Waiting for a cure
Why is there a lack of investment in innovation for these conditions? Part of the challenge, Benjamin says, is that the solutions are not as obvious.
“For other diagnoses, we can say here’s a pill, you can live with this,” says Benjamin. “And [ADRD is] also difficult to diagnose. People often aren’t screened for this, and doctors don’t necessarily want to make a diagnosis if they don’t have something to offer to treat it.”
Many healthcare professionals may not be aware of solutions available to help manage these patients so they can stay healthy and independent, she says. Those solutions that do get a lot of attention tend to be on the pharmaceutical side.
“There’s been a lot of hope around pharmaceutical interventions and a lot of investment,” says Benjamin. “Billions of dollars have been spent looking for that magic pill, versus nonpharmaceutical interventions.”
Together Senior Health focuses on an integrative program around those nonpharmaceutical interventions: “movement, mindfulness, socialness, music, things we know have value independently for these folks,” says Benjamin. “We put them together in a program with a curriculum that leverages how people can continue to learn, develop muscle memory, engage in social connections.”
And it’s working: Thus far in their clinical trials, the organization has seen reductions in falls as well as caregiver stress.
“We’re seeing happier people—and this group tends to be socially isolated,” says Benjamin. “It can be a downward spiral. You start to experience memory loss and then you can start to withdraw, and that’s a proven risk factor for dementia.”
Social isolation and withdrawal may also factor into the lagging level of investment in these patients. Those living with ADRD tend to be older patients, who can be quieter and less vocal about their care, Benjamin explains. Their condition may feel like a “family matter” and there tends not to be much public discussion about it, so people often feel even more alone as they and their loved ones manage decline.
Helping the helpers
Improving care for patients with cognitive decline goes beyond helping the patients themselves. “For eons, the way we’ve managed sick or older adults is that there’s a lot of family caregivers: ‘OK, Mom will move in with me, or I’ll live close to Dad; we’ll figure this out,’ ” says Benjamin. “There’s value in helping the helpers.”
Programs that work with the caregivers as well as the patients can help in terms of learning strategies and methods for providing care and coping with challenges.
“We’re seeing a clinically significant, statistically significant reduction in caregiver stress,” says Benjamin. “It’s about spending time with the patient that isn’t just about taking care of the patient—just being with their partner or parent in a way that isn’t about managing them.”
People become caregivers in the first place because they value their loved ones, she says. And that can be a struggle, as patients may resist getting diagnosed because they fear becoming a burden on their family or being perceived as a problem to be managed instead of a person who can manage their own care.
“We’ve seen it even in physician offices and care management programs: The person with memory loss is sitting right there, and the person being addressed is the caregiver. At some point of the spectrum, they do lose their ability to participate in their own care, but that doesn’t happen right away,” says Benjamin. “They’re still people and they deserve to have respect and involvement in their own care, and we find that they’re often underestimated.”
Together Senior Health is working to bring that conversation to the forefront alongside the pharmaceutical interventions. “We should be investing in those options, but in the meantime we have people who have memory loss and for whom some of the management of modifiable risk factors, like poor diet, low activity, low cognitive activity, are things they can’t always do on their own,” says Benjamin.
One of the challenges—and something the recent study surfaces—is demonstrating that these methods are working. “They’re grasping at anything which might offer a bit of hope, and to share out real evidence and science that these things matter, that these programs can help” is hugely important, says Benjamin.
As the organization is entering its third clinical trial, they are looking at human-centered design around how to help providers identify and manage these patients and prevent further decline, while acknowledging the providers are already inundated with information. “It’s an education effort,” says Benjamin. “Most providers are not trained to screen for dementia, and there’s a lot of angst in feeling that you can’t do something for them.”
There’s a financial benefit for healthcare organizations to explore new treatment options. “These are expensive patients,” says Benjamin. “They’re three times more expensive than the average patient. They fall more, they have more ED visits. Not only is there a human need to help these patients, but if you manage them better, you can save a bundle of money. It’s a win-win.”
Improving care for patients with cognitive decline starts with better care and quality of life, but there are always financial considerations in healthcare that are powerful and sometimes hidden. “If you look at diabetes patients, they are expensive and pretty easy to identify, but Alzheimer’s patients are buried in other areas,” Benjamin says.
In areas hospitals and healthcare organizations know are an issue, like falls, the attention is on the incident. But with this patient group far more likely to experience a fall, better treating the root cause of those falls can help the bottom line as well.
“These are patients who are five to eight times more likely to have a fall, and none of the fall prevention options work for them,” says Benjamin. “Our first clinical study found we have a 30% to 40% reduction in falls. They take up a big percentage of this cost bucket, and it’s totally unmanaged.”
Reaching the next level of care
Benjamin says she would like to see brain health as a big focus of care in the future, not just for older patients but middle-aged ones as well. “I’d love to have the general zeitgeist focus more on general brain health,” she says. “The question is, how do we get a national conversation started?”
There are ways to get ahead on brain health, from diet and physical activity to having hearing and sight checked regularly. “There are things that impact brain health that you can be doing on your own. There’s a continuum,” she says. “And even with a diagnosis, you’re still capable of participating in your own care and should be respected as such. It doesn’t mean you can’t experience joy and fun. Our programs are meant to be fun, and they have a 70% to 80% attendance rate for months at a time.”
Moving beyond the inherent reluctance to talk about memory loss is necessary to make these strides. “It’s super common, and people are reluctant to talk about it, so they don’t know how broad the impact is,” says Benjamin. “We need to make it easier to have these conversations, and easier to recognize [that] it’s not the end of the world, and that there are things you can do about it and ways to still live a very high quality of life for a long time.”
Matt Phillion is a freelance writer covering healthcare, cybersecurity, and more. He can be reached at matthew.phillion@gmail.com.