The guide to
Diagnosing cognitive impairment
Why dementia risk is higher for people of color
Conversations to have with your doctor
How the diagnostic process works
narration
Cognitive impairment could be treatable
Symptoms of cognitive decline can be subtle, and they don’t always point to Alzheimer's disease. Getting an accurate diagnosis early on is critical. Some cognitive impairment is caused by , and catching a condition early could mean it is possible to clear up the symptoms.
treatable health conditions
Getting an accurate diagnosis matters.
If cognitive impairment is a symptom of an underlying neurodegenerative disease like Alzheimer's, an accurate diagnosis, means you’re better prepared to:
narration
Read more
Why is a dementia diagnosis so hard to get right?
Many neurodegenerative diseases have overlapping symptoms and doctors need to rule out other, reversible conditions before diagnosing dementia. Self-advocacy and persistence on the part of patients can help ensure an accurate diagnosis.
“Physicians often don’t like to pursue the diagnosis of Alzheimer’s and they will pick other things that might be coexisting, like depression or anxiety. But that doesn’t mean they don’t have Alzheimer’s.”
According to a
survey
75%
Dr. Sharon Cohen, Toronto Memory Program
“There is a reluctance on the part of some physicians to diagnose and name the disease. We just don’t have an adequate healthcare workforce to serve the needs of the many people who are experiencing cognitive changes.”
of Lewy body dementia patients were initially misdiagnosed.
Dr. Jason Karlawish, Penn Memory Center
narration
Read more
Brain health barriers for people of color
While research shows that approximately 40 percent of dementia cases could be prevented or delayed through modifiable risk factors, not all communities are on an equal playing field for managing these risks.
Jason Resendez, Head of the LatinosAgainstAlzheimer’s Coalition
Jason Resendez is working to make Alzheimer's research more diverse and address health disparities in communities of color.
Myra Garcia, Alzheimer’s advocate
As an Alzheimer’s advocate, Myra Garcia is lending her voice to improve education and care in the Latino community.
narration
Disparities in diagnosis
An accurate brain health diagnosis isn’t just about the science. It’s also about access and equity. Research shows:
- Black and Latino patients are often diagnosed at later stages.
- Standard tests may not work equally well across cultures.
- Depending on a person’s location, they might be as much as 28 percent less likely to get a timely diagnosis.
- Medicare data shows that Black Americans are 2x as likely as white Americans to be underdiagnosed with dementia.
Misdiagnosis happens more often than people realize — and communities of color may face more barriers than others in getting access to a neurologist and obtaining an accurate diagnosis.
narration
Disparities in clinical research
Many diagnostic tools, includng new Alzheimer's blood tests, have not been extensively tested for efficacy in populations of color.
“The fact these risk models have not been tested in a lot of populations makes me wary, because Alzheimer’s is a global disease.” –Dr. Thomas K. Karikari, University of Pittsburgh
"When you use a limited study population — as, unfortunately, scientists have traditionally done in Alzheimer’s research — and then try to apply the results to everyone, including people of diverse backgrounds, you could exacerbate health inequities.” –Dr. Suzanne Schindler, University of Washington
narration
Real-life stories of misdiagnosis
For many, getting an accurate diagnosis takes months or years. Read about patients and families who pushed for answers:
Terrie Montgomery
Myra Garcia
A long road to diagnosis
Misdiagnosed with ADD
narration
What to discuss with your doctor
If you think you might be experiencing cognitive changes or memory loss, here are some things you can ask to start this discussion with your doctor:
Questions to ask your doctor
Don’t let doctors dismiss your concerns.
“If your doctor isn't listening, find a new one.” — Dr. Marwan Sabbagh
Read more
narration
How dementia is diagnosed
Doctors use multiple tools to get a full picture of cognitive decline and make an accurate diagnosis.
Imaging
Biomarker testing
Cognitive assessments
Functional & behavioral evaluation
Medical history & physical exam
narration
New diagnostic tools
A new wave of technology is changing how Alzheimer’s is diagnosed:
add related links or images that link to BP articles for the latter two
Blood tests for Alzheimer’s
AI and digital biomarkers
Voice analysis
narration
What happens after a diagnosis
After receiving a diagnosis, many people are unsure how to proceed. Here’s what to do next:
- Research more about living with dementia and what it means for the future
- Seek a specialist (neurologist, geriatrician, or neuropsychologist)
- Explore treatment options and lifestyle interventions
- Involve family and create a care plan
- Organize legal and financial documents early
- Consider participating in research
add related links or images that link to BP articles for the latter two
narration
Participating in a clinical trial
add related links or images that link to BP articles for the latter two
Clinical trials are research studies that test new ways to prevent, diagnose, or treat disease. In dementia research, clinical trials are how scientists learn what works — and what doesn’t. Phyllis Jones and Patty Kelly share what it was like to participate in the U.S. POINTER Study, a lifestyle intervention trial.
narration
Power in community: Building better diagnostic practices together
"I saw how much she [Turney’s grandmother] deteriorated over time, and also the effects on the family, just having to go through that process. [I realized], I want to be a face that other Black and brown people can trust. I want to be a face that they can come to and say, ‘You’re the one doing the research. So I trust you.’ Because the research needs to be done in our community, so we can know how to help each other.”
Read more
Indira Turney, Carribean neuroscientist
Sharing your story can help others push for better care and earlier diagnosis. Check out our series Journey to Diagnosis
narration
beingpatient.com
Explore more resources on
You’ve just taken a step toward better understanding dementia diagnosis.
narration
Want to keep learning?
Visit
beingpatient.com
for the latest news and information on brain health and Alzheimer's disease
narration
High-tech tools may detect early symptoms that traditional tests miss. Online self-administered cognitive tests are becoming more popular.
“[My doctor said] ‘You might be at the change of life. You might be working too much. So then he said, ‘Let’s just watch it.’ Six months later, and tests, and that was it. I had it [Alzheimer’s].”
READ MORE
The FDA recently approved the first blood test to detect Alzheimer’s, opening the door to Medicaid coverage. Blood tests detect amyloid or tau protein and are becoming more widely available. But cost and insurance coverage vary. New practice guidelines from the Alzheimer’s Association only recommend using blood tests in individuals who already have been diagnosed with cognitive impairment.
“I thought it was Alzheimer’s disease, but I went to doctors many, many times, and they all said, “You are fine.” There was one doctor who did a whole bunch of testing, and at the end of the day, she says, “What you have is ADD.” When I was told [it was] ADD, I will tell you I burst into tears of joy because it was not Alzheimer’s, and so I was on those drugs for a number of years. It seemed like it was working fine, but ultimately it really wasn’t. I found a neuropsychiatrist, and that was the beginning of my new me.”
READ MORE
“ [When I talked to my] GP and several GPs, I knew something was not right, and they either didn’t understand the disease or they didn’t want to accept it because I can speak, I can drive, et cetera. I wouldn’t be surprised if that happens to many other Latino people who [are] just seen [at] face value, and they don’t understand, necessarily, what is going on in the brain.”
READ MORE
- I’ve been experiencing forgetfulness and getting lost in familiar places, do you think that is normal aging or something more serious?
- I’m worried I might be having cognitive changes. What kind of testing do you offer?
- Can I get a referral for cognitive testing with a neurologist?
- Are there any blood or imaging tests available to me here?
- Can we screen for other possible causes of my symptoms — like depression, sleep disorders, anxiety or vitamin deficiencies?
- If I do have Alzheimer’s or MCI, what’s the next step?
Technology startups like Sonde Health are developing tools that detect cognitive changes through voice biomarkers and speech patterns.
“Under-resourced communities are at a disadvantage in managing these risk factors, however, due to deep inequities in education, access to exercise opportunities and nutritious food…We see a lot of interesting brain health messages that talk about Soul Cycle, and yoga and pilates. These are all great for an audience where that’s a part of their daily life, but that’s not going to be the case when you’re living in a low-resource community where it’s too hard to take a Soul Cycle class. So you need to think about what the culturally appropriate messages are for these communities. It’s also a matter of creating more culturally relevant options for people to act on their brain health and take action.”
READ MORE
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Transcript
The guide to
Diagnosing cognitive impairment
Why dementia risk is higher for people of color
Conversations to have with your doctor
How the diagnostic process works
narration
Cognitive impairment could be treatable
Symptoms of cognitive decline can be subtle, and they don’t always point to Alzheimer's disease. Getting an accurate diagnosis early on is critical. Some cognitive impairment is caused by , and catching a condition early could mean it is possible to clear up the symptoms.
treatable health conditions
Getting an accurate diagnosis matters.
If cognitive impairment is a symptom of an underlying neurodegenerative disease like Alzheimer's, an accurate diagnosis, means you’re better prepared to:
narration
Read more
Why is a dementia diagnosis so hard to get right?
Many neurodegenerative diseases have overlapping symptoms and doctors need to rule out other, reversible conditions before diagnosing dementia. Self-advocacy and persistence on the part of patients can help ensure an accurate diagnosis.
“Physicians often don’t like to pursue the diagnosis of Alzheimer’s and they will pick other things that might be coexisting, like depression or anxiety. But that doesn’t mean they don’t have Alzheimer’s.”
According to a
survey
75%
Dr. Sharon Cohen, Toronto Memory Program
“There is a reluctance on the part of some physicians to diagnose and name the disease. We just don’t have an adequate healthcare workforce to serve the needs of the many people who are experiencing cognitive changes.”
of Lewy body dementia patients were initially misdiagnosed.
Dr. Jason Karlawish, Penn Memory Center
narration
Read more
Brain health barriers for people of color
While research shows that approximately 40 percent of dementia cases could be prevented or delayed through modifiable risk factors, not all communities are on an equal playing field for managing these risks.
Jason Resendez, Head of the LatinosAgainstAlzheimer’s Coalition
Jason Resendez is working to make Alzheimer's research more diverse and address health disparities in communities of color.
Myra Garcia, Alzheimer’s advocate
As an Alzheimer’s advocate, Myra Garcia is lending her voice to improve education and care in the Latino community.
narration
Disparities in diagnosis
An accurate brain health diagnosis isn’t just about the science. It’s also about access and equity. Research shows:
Misdiagnosis happens more often than people realize — and communities of color may face more barriers than others in getting access to a neurologist and obtaining an accurate diagnosis.
narration
Disparities in clinical research
Many diagnostic tools, includng new Alzheimer's blood tests, have not been extensively tested for efficacy in populations of color.
“The fact these risk models have not been tested in a lot of populations makes me wary, because Alzheimer’s is a global disease.” –Dr. Thomas K. Karikari, University of Pittsburgh
"When you use a limited study population — as, unfortunately, scientists have traditionally done in Alzheimer’s research — and then try to apply the results to everyone, including people of diverse backgrounds, you could exacerbate health inequities.” –Dr. Suzanne Schindler, University of Washington
narration
Real-life stories of misdiagnosis
For many, getting an accurate diagnosis takes months or years. Read about patients and families who pushed for answers:
Terrie Montgomery
Myra Garcia
A long road to diagnosis
Misdiagnosed with ADD
narration
What to discuss with your doctor
If you think you might be experiencing cognitive changes or memory loss, here are some things you can ask to start this discussion with your doctor:
Questions to ask your doctor
Don’t let doctors dismiss your concerns.
“If your doctor isn't listening, find a new one.” — Dr. Marwan Sabbagh
Read more
narration
How dementia is diagnosed
Doctors use multiple tools to get a full picture of cognitive decline and make an accurate diagnosis.
Imaging
Biomarker testing
Cognitive assessments
Functional & behavioral evaluation
Medical history & physical exam
narration
New diagnostic tools
A new wave of technology is changing how Alzheimer’s is diagnosed:
add related links or images that link to BP articles for the latter two
Blood tests for Alzheimer’s
AI and digital biomarkers
Voice analysis
narration
What happens after a diagnosis
After receiving a diagnosis, many people are unsure how to proceed. Here’s what to do next:
add related links or images that link to BP articles for the latter two
narration
Participating in a clinical trial
add related links or images that link to BP articles for the latter two
Clinical trials are research studies that test new ways to prevent, diagnose, or treat disease. In dementia research, clinical trials are how scientists learn what works — and what doesn’t. Phyllis Jones and Patty Kelly share what it was like to participate in the U.S. POINTER Study, a lifestyle intervention trial.
narration
Power in community: Building better diagnostic practices together
"I saw how much she [Turney’s grandmother] deteriorated over time, and also the effects on the family, just having to go through that process. [I realized], I want to be a face that other Black and brown people can trust. I want to be a face that they can come to and say, ‘You’re the one doing the research. So I trust you.’ Because the research needs to be done in our community, so we can know how to help each other.”
Read more
Indira Turney, Carribean neuroscientist
Sharing your story can help others push for better care and earlier diagnosis. Check out our series Journey to Diagnosis
narration
beingpatient.com
Explore more resources on
You’ve just taken a step toward better understanding dementia diagnosis.
narration
Want to keep learning?
Visit
beingpatient.com
for the latest news and information on brain health and Alzheimer's disease
narration
High-tech tools may detect early symptoms that traditional tests miss. Online self-administered cognitive tests are becoming more popular.
“[My doctor said] ‘You might be at the change of life. You might be working too much. So then he said, ‘Let’s just watch it.’ Six months later, and tests, and that was it. I had it [Alzheimer’s].”
READ MORE
The FDA recently approved the first blood test to detect Alzheimer’s, opening the door to Medicaid coverage. Blood tests detect amyloid or tau protein and are becoming more widely available. But cost and insurance coverage vary. New practice guidelines from the Alzheimer’s Association only recommend using blood tests in individuals who already have been diagnosed with cognitive impairment.
“I thought it was Alzheimer’s disease, but I went to doctors many, many times, and they all said, “You are fine.” There was one doctor who did a whole bunch of testing, and at the end of the day, she says, “What you have is ADD.” When I was told [it was] ADD, I will tell you I burst into tears of joy because it was not Alzheimer’s, and so I was on those drugs for a number of years. It seemed like it was working fine, but ultimately it really wasn’t. I found a neuropsychiatrist, and that was the beginning of my new me.”
READ MORE
“ [When I talked to my] GP and several GPs, I knew something was not right, and they either didn’t understand the disease or they didn’t want to accept it because I can speak, I can drive, et cetera. I wouldn’t be surprised if that happens to many other Latino people who [are] just seen [at] face value, and they don’t understand, necessarily, what is going on in the brain.”
READ MORE
Technology startups like Sonde Health are developing tools that detect cognitive changes through voice biomarkers and speech patterns.
“Under-resourced communities are at a disadvantage in managing these risk factors, however, due to deep inequities in education, access to exercise opportunities and nutritious food…We see a lot of interesting brain health messages that talk about Soul Cycle, and yoga and pilates. These are all great for an audience where that’s a part of their daily life, but that’s not going to be the case when you’re living in a low-resource community where it’s too hard to take a Soul Cycle class. So you need to think about what the culturally appropriate messages are for these communities. It’s also a matter of creating more culturally relevant options for people to act on their brain health and take action.”
READ MORE