Overcoming Barriers to an Early Diagnosis in Alzheimer’s, Dementia
It took seven years from the time she started showing symptoms for Sophia Rodriguez’s mother to receive a confirmed diagnosis of Alzheimer’s disease. After her death 14 years later, Rodriguez can’t help but wonder how things might have been different had her mother received an earlier diagnosis.
Early diagnosis has myriad benefits for those living with dementia and Alzheimer’s, including helping families and caregivers plan for the patient’s future and getting support systems in place as soon as possible to ensure a loved one maintains the highest quality of life.
“I think that having that earlier diagnosis would have relieved a lot of stress,” Rodriguez said. “What keeps me up at night is that had I known earlier, we would have gotten the ball rolling on things that she needed and I could have spent more time with her just enjoying her.”
And yet, a timely diagnosis isn’t the reality for many people living with dementia. In fact, research has shown that the average time from when symptoms appear to diagnosis is nearly three years — and that wait could be even longer for those in low-income and minority communities.
Lack of funding and Medicare reimbursement, inadequate education of physicians and laypeople, a shortage of geriatricians, and lack of communication among caregivers, patients, and their providers are all contributing to a delay in diagnosis and subsequent quality care that will have a lasting impact on the health and finance of the country, advocates say.
Add to that the complexity of the diagnostic process, which typically involves a number of tests from assessing the person’s medical and family history to brain imaging, before an Alzheimer’s diagnosis can be confirmed.
An estimated 6.2 million people ages 65 and older in the U.S. are living with Alzheimer’s disease, according to the Alzheimer’s Association, with a projected economic impact of $355 billion in 2021. And the caregiver contribution to the nation was valued at $256.7 billion.
No cure has yet been discovered to alleviate that financial burden, but early diagnosis could save as much as $7.9 trillion in total medical and long-term care costs for individuals in the U.S., according to a 2018 special report from the Alzheimer’s Association.
“Finding out if you have dementia or even the beginnings of that mild cognitive impairment as early as possible is really important,” said Morgan Daven, vice president of health systems at the Alzheimer’s Association, in a video interview with Alzheimer’s News Today. “Those reasons include being able to have an individualized care plan … improved management of other conditions … and information on clinical trials, many of which are designed for people who are in a very early stage of dementia.”
Searching for answers in the dark
For Rodriguez, whose mother died from Alzheimer’s at age 62 in 2019, even venturing to the doctor was a challenge, especially once symptoms such as mood swings and combative tendencies set in.
Rodriguez works as a neurology research genetic counselor at Columbia University Irving Medical Center but also is involved in Alzheimer’s advocacy, serving as a volunteer and board member for the Youngtimers organization. The goal of that group is to address the needs of patients with early onset familial Alzheimer’s disease, and their family members.
“These are things that people don’t really think about,” said Rodriguez, who lives in New Jersey, in a video interview with Alzheimer’s News Today.
It was during Rodriguez’s last year of high school when her mother started showing signs of dementia. But it wasn’t until she was in graduate school seven years later that a genetic test confirmed a diagnosis of early onset familial Alzheimer’s.
Rodriguez said she became “the chosen one” when it came to managing her mother’s care, and she felt in the dark most of the 14 years from the first symptoms to her mother’s death. If the questions about what was going on with her mother were answered sooner, things might have been different, she says.
Beyond allowing Rodriguez to be unburdened by her questions, an early diagnosis could have allowed her mother greater autonomy over her medical decisions before she lost her ability to think for herself. Patients can plan ahead, and thus have more input over their future, if they have an accurate diagnosis early on.
Additionally, an earlier diagnosis could have given the family extra time to discuss brain banking. The examination of healthy brain tissue compared with diseased tissue can help scientists develop treatments and understand Alzheimer’s progression.
One last benefit of getting an early diagnosis, Rodriguez said, was that it would have reduced the time and money spent in a diagnostic odyssey that took years to complete.
A financial and educational problem
The lengthy diagnostic process for Alzheimer’s has a lot to do with a shortage of doctors who understand the disease and a lack of an economic model to effectively run a dementia care center, said Jason Karlawish, MD, co-founder of the Penn Memory Center — part of the University of Pennsylvania Health System — and author of the book, “The Problem of Alzheimer’s: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It.”
According to the American Geriatrics Society, by 2030, nearly 30,000 geriatricians will be needed to treat 72 million people ages 65 and above. But in 2016, there were just over 7,000. Karlawish cited this fact in his statement to the U.S. Senate in 2019, when he was called to testify on the larger Alzheimer’s issue.
“America just needs to invest in training the workforce,” Karlawish said in a video interview with Alzheimer’s News Today.
Residency and fellowship training slots are funded by the federal government through Medicare, according to Karlawish. To address the shortage of clinicians with expertise in the diagnosis and treatment of patients with cognitive impairment, Karlawish said more funding should go to support training slots for geriatricians, geriatric psychiatrists, and neurologists focused on cognitive neurology.
“I think the workforce is there, but they need to be motivated; they need to see this as a path forward for a job, that it’s worth taking the time and effort to get trained,” Karlawish said.
He refers to it as the “carrot” method of incentivizing people to care for patients with Alzheimer’s. As it is right now, the lack of a sustainable economic model is causing doctors to pursue specialties in more lucrative medical fields.
In addition to the long diagnosis times, the nature of dementia care is more nuanced, and thus more difficult to turn a profit, compared with other areas like orthopedic services.
“Joint replacements are incredibly industrialized surgeries that lend themselves to easy scheduling, rapid throughput through the operating room, and short lengths of stay,” Karlawish said.
That isn’t the case at many of the clinics that focus on dementia and Alzheimer’s. Karlawish’s own Penn Memory Center depends on public reimbursement and philanthropy from private donors to operate.
A gold star dementia clinic
A success story of a profitable, albeit not by much, care center for people with Alzheimer’s can be found in the rural area of western North Carolina, where nearly 25% of the population is 65 years or older, and thus at risk for cognitive impairment.
Memory Care was founded in 2000 in Asheville by Margaret Noel, MD, after she worked for 10 years as a geriatrician. Like Penn Memory Center, Memory Care relies on funding from public and private medical reimbursement and also donations from the surrounding community. According to the organization’s 2020 annual report, 58% of funding came from charitable support.
Noel, now director emerita and an ex-officio board member for Memory Care, said it will take more drastic changes in federal reimbursement for other struggling memory centers to keep their heads above water. The current procedural terminology (CPT) code for “assessment of and care planning for patients with cognitive impairment like dementia, including Alzheimer’s disease, at any stage of impairment” — CPT 99483 — pays out $282 to a center for these services per patient.Â
Increasing the reimbursement level, as the government did with hospice care, could be a way to make care centers sustainable, funnel more geriatricians into the field, and drive more accurate and timely diagnoses, Noel said.
“People who are in the last stages of life need a multidisciplinary, time-intensive model to die well,” Noel said in a video interview with Alzheimer’s News Today. “People with dementia need a multidisciplinary, time-intensive model to live well.”
Primary care doctors and neurologists, many of whom are not trained in geriatric medicine — or dementia, for that matter — are up against time restraints. In her center, Noel has made it a priority to facilitate quality care that allows physicians time to address a patient’s needs.
“If I needed to practice within the time constraints of the traditional model, I could not give good care to people living with dementia,” Noel said. “I really had to blow that apart, in order to create a program where both the families get what they need and patients get what they need.”
Pandemic’s impact on care and diagnosis
COVID-19 has, in a way, brought a silver lining to dementia care. The virtual model has closed the distance to brick-and-mortar clinics, especially those in rural areas.
Memory Care did a number of virtual outreach and education events during the pandemic for the western North Carolina region, including a community caregiver conference, an adult exercise program, Caregiver College, and a series of caregiver education seminars.
And a fifth of the hours available for appointments at Memory Care were done in a telehealth setting, according to its annual report.
The Alzheimer’s Association also is pursuing virtual learning for caregivers and doctors, though on a larger scale. It is using Project ECHO, a University of New Mexico initiative that provides expert knowledge to underserved communities in health, education, and civics through telementoring and knowledge sharing, to help disseminate more information on dementia care, and thus improve the diagnosis process.
In Project ECHO, a group of specialists in the dementia community — such as neurologists, geriatricians, doctorate-level social workers, and geriatric psychiatrists — educate primary care doctors and nurses about dementia through a case-based learning model via Zoom. The “learners,” as they are called by Daven, of the Alzheimer’s Association, see a real de-identified dementia case and are tasked with putting what they learned in the teaching sessions to the test.
“It’s really building their capability to find a mentor earlier, to make sure that a patient gets a diagnosis, is told their diagnosis, and how that then informs the care that they need to provide to that patient once they know that they do, in fact, have dementia,” Daven said.
Diagnosing the minority community
Telehealth and virtual continuing education sessions benefit everyone, advocates say, including the underserved and minority communities who are disproportionately affected by the disease. Black people are twice as likely to have Alzheimer’s as whites; for Latino people, the risk is 1.5 times higher. But these minority populations are less likely to receive a diagnosis.
Lisa Barnes, PhD, a cognitive neuropsychologist at the Rush Alzheimer’s Disease Center, in Chicago, whose work focuses on the epidemiology and racial differences in chronic diseases of aging, said more focus needs to be put on designing the cognitive tests used to diagnose patients with dementia.
“These tests are influenced by many factors that vary across race,” Barnes said.
This includes variables like level and quality of education and familiarity with test-taking.
“All those things can play a role in how you perform on tests, and those things are rarely adjusted for in the clinic or even in research studies,” she said. “We need more data. We need data that goes beyond cognitive test performance.”
More work also needs to be done to encourage people who are experiencing new or worsening symptoms to get them checked out.
Some people, particularly those with lower education levels, may not see a doctor until it’s too late for them to plan ahead financially or be in a position to make decisions for themselves.
“It will go unrecognized for so long because either these groups don’t recognize the symptoms or they think the symptoms they are displaying are just a normal part of aging,” Barnes said. “They may not present to medical care until very late in the disease when other clinical problems manifest.”
Part of the solution is raising awareness about the disease and addressing the negative stigmas about Alzheimer’s in these communities, Barnes said. And from the research and clinical trial side, Barnes suggests adding people from more diverse backgrounds so they can understand whether Alzheimer’s presents differently in these groups, or if it is largely the same across races.
Only 3% of clinical trials for Alzheimer’s include Black people, according to Stephanie Monroe, executive director of African Americans Against Alzheimer’s, in a Genentech LinkedIn webinar on World Alzheimer’s Day in September.
Finding solutions and changing economic models in order to get an Alzheimer’s diagnosis and quality care is just one part of a multistep approach to combat the costly disease. Next is getting a treatment that stops the disease before it progresses beyond control.
Biogen and Eisai’s Alzheimer’s treatment, Aduhelm (aducanumab), was approved by the U.S. Food and Drug Administration in June, and while the response to the therapy was mixed, with some questioning its efficacy, it’s the first targeted treatment for the disease to be approved in 20 years.
“It’s an encouraging time in terms of the progress that we’re making, learning about the disease, and working with the healthcare community to be able to act on that,” Daven said.
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