If we haven't been touched by Alzheimer's directly, we know someone who has. In fact, more than 7 million Americans aged 65 and older have developed the disease. Compounding this already sobering stat is the fact that average wait times for diagnosis and treatment of dementia range from 12 months to almost four years, according to the journal Alzheimer's & Dementia.
That's nothing less than tragic when you consider the importance of early interventions. Yet there is very real hope in the form of simple steps you or your loved one can take to shrink that wait time and embark on a treatment plan. We asked top neurologists and a patient advocate to share everything you need to know about why early detection of dementia is so vital and how to secure that all-important diagnosis -- as well as next steps that are key to long-term care.
Why is there such a long wait for a dementia diagnosis?
The biggest factor accounting for the lag time in dementia diagnoses is the sheer, overwhelming number of people with cognitive and memory issues. "By the time we're 85 or older, 40 percent of us have some form of dementia, whether it's Alzheimer's or a related condition," reveals Harvard-trained neurologist Andrew E. Budson, MD. Professor of Neurology, Boston University and co-author of Seven Steps to Managing Your Aging Memory.
Another roadblock preventing us from getting a timely diagnosis is the shortage of specialists, particularly neurologists. "I'm part of a nationally funded, NIH-supported institution, yet all my colleagues report substantial wait times for an appointment -- it's a real phenomenon," confirms neurologist Jeffrey Kaye, MD, Layton professor of neurology and biomedical engineering and the director of the Layton Aging and Alzheimer's Disease Center at Oregon Health & Science University (OHSU).
He explains that the dearth of doctors applies across the board, from rheumatologists to dermatologists, but that the aging population makes the lack of specialists in memory care an especially acute problem.
Dementia treatments are relatively new
One surprising reason we don't have enough neurologists is that until recently, there were very few treatments for dementia, making it almost futile to train doctors in the field. "Alzheimer's and related dementias deserve a lot of time in medical schools and residency, but for years, they just weren't pursued because we didn't have the drugs," explains Dr. Budson.
Indeed, he notes that while medications existed as far back as the 1990s, there has been a long fallow period since then, with no useful FDA-approved therapies between 2003 and 2023. Fortunately, the recent advent of a new class of drugs targeting amyloid plaques -- toxic proteins that develop in the brains of Alzheimer's patients -- marks a major step forward, making early diagnosis of dementia ever more critical.
Amyloid-targeting therapies, like Donanemab (brand-name Kisunla), are intravenous infusions that remove plaques from the brain, says Dr. Budson. He's quick to add that though these medications represent a long-awaited breakthrough, they can't reverse cognitive decline. "They don't turn the clock back -- they slow it down. And the earlier patients start, the better they do."
Why early diagnosis of dementia is so important
These newer classes of drugs used to treat memory problems work best when they're administered early. But first, a quick explainer of this neurodegenerative disease. There are two types of abnormal proteins in the brains of people with dementia: amyloid and tau. "The plaques get bigger and bigger, damaging neighboring brain cells," Dr. Budson explains. "Then tau, which is very sticky, forms long chains that get tangled up inside the cells."
The reason anti-amyloid treatments have to be administered early while symptoms of dementia are still mild is because once tau tangles start to form, they spread throughout the brain, jumping from neuron to neuron. "If you wait too long to begin treatment, it's sort of like the horse is already out of the barn."
How effective are these treatments?
For patients with moderate-stage Alzheimer's, medications are only able to slow cognitive decline by about 10 percent or less, Dr. Budson continues. "That's why we don't use these drugs in people who are in the moderate stage. But for those in the early stage of the disease, the slowing of that clock is more like 25 to 35 percent. And one study of people with mild cognitive impairment -- and only a small amount of tau tangles in their brain based on a special type of tau PET scan -- showed almost 60 percent slowing of that clock."
Bottom line: Early diagnosis is key to ensuring better quality of life for as long as possible. Even delaying cognitive decline by just a few months can make a big difference. "That is valuable time to give the family to prepare next steps," says Dr Budson, "like deciding if they want to look into caregiving facilities or explore whether they would like to have people come and stay with their loved one."
How to secure a dementia diagnosis and treatment faster
Now that you know why early intervention is so important, keep reading for a few strategies to help you or your loved one see a dementia specialist sooner.
Start with your primary care doctor
Not only will a primary care physician be able to give you a referral to a neurologist, but they are also typically more attuned to the needs of the older population, notes Dr. Kaye.
That said, these doctors are also in short supply. "The good news is they often work with nurse practitioners and they can help fill the gaps, certainly when there's a delay to see either a primary care physician or neurologist," adds patient advocate Tammy Porter, DNP, MLS, RN-BSN, CCM, CPHQ, Independent Healthcare Consultant and Consulting Associate, Duke University School of Nursing.
Once you're in the door with a healthcare professional, talk to them about taking the Montreal Cognitive Assessment (MoCA) to help check for memory loss, advises Dr. Budson. "It takes about 15 minutes, and I don't expect a busy physician to spend 15 minutes, but I'm hopeful that someone in their office can administer the test." They'll do things like ask the patient to remember certain words and repeat them later in the conversation, or complete tasks like drawing a clock.
Request a comprehensive screening
A healthcare professional will need to rule out other medical conditions that can present as dementia, from chronic infections to thyroid issues to other serious diseases. "My own mom has a brain tumor, and some of her symptoms can mimic Alzheimer's or Parkinson's, so the primary care physician has to be careful," shares Porter.
If, based on some of the initial tests, there's evidence of dementia, the doctor can even do a quick consultation themselves with a neurologist and explain what they're seeing in their patient, she continues. "The patient will still need further testing, but the doctor can go ahead and put them on medication -- one common drug is Aricept." This is an oral medication that increases levels of acetylcholine in the brain, a chemical messenger key to memory.
They'll also order a blood test for Alzheimer's to detect proteins consistent with the disease, adds Dr. Budson, as the first blood test for Alzheimer's has recently been FDA-approved. "This test and similar ones will soon be covered by insurance," he assures.
"If the blood test is positive, the patient will get referred to a neurologist or another specialist -- in some places, it might be a psychiatrist or a geriatrician -- to confirm the dementia diagnosis and get them started on treatment right away."
Consider a recent grad
If you're struggling to get an appointment with your primary care physician, it's sometimes easier to make an appointment with a doctor who's just recently hung out their shingle. That's because they're still building their practice and in need of patients, and you or your loved one will likely also receive excellent care.
"Someone who's coming right out of training tends to have the most current knowledge," says Dr. Budson. "And I do think with dementia, because so much is new, a lot of the younger doctors are particularly well-trained." Still, this isn't black-and-white, and he points out that there are also big benefits to having years of experience.
Another strategy is to expand your search by considering doctors "adjacent" to neurology who can diagnose dementia, like a geriatrician or geriatric psychiatrist.
Look into local clinical trials
Where Porter lives in Coachella Valley, California, it typically takes nine months to get an appointment after a referral. Though patients are put on a waitlist in case of a cancellation, this strategy rarely pans out.
A more effective way to get around the problem of scant specialists: "If you live in a metro area, or even in a rural region within one to two hours driving distance from a university or medical center, consider enrolling in a clinical research trial for early detection of Alzheimer's or dementia," she advises. "Where I live, for example, we have both the University of California, San Diego and Scripps Health."
And the great news is follow-ups can easily be done via telehealth. To get started, she advises checking ClinicalTrials.gov to discover which studies are available at the university or medical center nearest you, then reaching out to them to learn more about how to qualify -- the process is typically very easy, she promises.
And in case you might feel shy about reaching out, don't be! "For clinical researchers, having people volunteer is a gift because they're constantly looking for participants to qualify for these trials. And you'll be getting the best care because the researchers are conducting studies for future treatments, and they want it all to be very precise."
How to make the most out of a visit with a dementia specialist
If you're a caregiver looking after a loved one showing signs of dementia, there are a few easy ways to get ready for your first appointment with a specialist.
Track behavioral changes
Come loaded with as much information and relevant medical history as you can, encourages Porter. "If you suspect that a loved one is exhibiting the beginnings of Alzheimer's or some type of cognitive disorder, I always recommend taking notes at home."
She suggests jotting down any changes in how they walk, for example, as well as shifts in their speech patterns, mood and behavior. "Keep a log and note anything that might be affiliated with dementia, like if they get lost going to the local store or if they forget where they parked their car, and record how often these things are happening."
Prep with tech
An underrated tool for caregivers? Your iPad. "I have a client with Parkinson's, and we have quarterly remote telehealth visits with his doctor," Porter reveals. "I can record and display how he's walking on my device for the neurologist, who can then evaluate if he's doing better." The same type of monitoring can be done for memory, speech and behavior patterns in someone diagnosed with dementia.
In the end, the tools and technology needed to both diagnose and treat dementia and other cognitive health conditions are advancing every day. Though it's never going to be fast enough, we can take steps to secure top-notch care.