You Asked, We Answered
Participant Appreciation Event questions and answers
Review questions and answers discussed at the study's annual Participant Appreciation Events.
Why does the study exclude people older than 90?
We do not exclude people 90 and older, but we do not recruit new participants in that age group. When participants who are younger than 90 enroll in the study and then age into the 90-plus range, we continue to follow them. We don't want to burden new participants who are 90 or older, but otherwise we have no specific reason to exclude them. We appreciate their participation.
How do you work with participants who are unable to continue participation due to cognitive decline?
We encourage people to continue to participate, and we try to accommodate them. We are interested in participants at all levels of cognitive function. We try to assist those who choose to discontinue participation and can see them clinically to offer support.
Could your markers to indicate Alzheimer's disease be incomplete?
Absolutely, and that is why we continue to expand our evaluation protocol. We have a great deal to learn about this complex disease.
If I have a genetic, protein or other marker for dementia, will I be informed?
The institutional review board does not allow us to give genetic information back to participants unless it would be critical information for their clinical care. We are still learning about proteins and genetic features of dementia.
Many participants have years of electronic data from using continuous positive airway pressure (CPAP) machines and wearable fitness trackers. This data is often required for Medicare and health insurance. Would any of it be useful for the Mayo Clinic Study of Aging?
That is a very kind offer, and if we can use those data in a productive fashion, we may inquire with you. We are planning to expand our data acquisition to include wearables and other forms of remote data acquisition because they may be informative.
My father dropped out of the study. However, he now has serious dementia. Could he rejoin the study to pick up where he left off?
We are interested in following all participants in the study, and if he wishes to return we could see him. Ultimately, we ask all participants for permission to perform an autopsy after death, so we are willing to follow all participants indefinitely.
If participants want to know their current health statuses, will the study team give them information?
When participants inquire about their cognitive status or possible new diagnoses, we can share that information — preferably with the input of the person's primary physician.
How many participants are members of minority populations? I didn't see many people from minority groups at the luncheons I have gone to.
Good observation. We invite anyone to join the study, but many demographics are underrepresented in Olmsted County, particularly in the older age ranges. To rectify this, we are developing a collaboration with colleagues at the University of Mississippi to begin the Mississippi Mayo Clinic Study of Aging, as well as collaborating with colleagues at Mayo Clinic's campus in Jacksonville, Florida.
If there are findings in participants' brain scans, will they be presented to the participants' primary care providers?
Yes. If we see anything of clinical significance in a brain scan, we inform participants' primary care provider.
Who specifically can I talk to about donating my brain?
Thank you so much for making this offer. You can call the Mayo Clinic Study of Aging office at 507-284-1324 to get details about our brain donation program.
I've read that diet is crucial for preventing or slowing Alzheimer's disease. Why aren't we ever asked about nutrition?
Research into the relationship between nutrition and cognitive function is somewhat limited, in part because it is very hard to study. However, some evidence suggests — but does not prove — that following the Mediterranean diet might help reduce the risk of Alzheimer's disease and dementia or slow cognitive decline.
This may be due to the effect eating certain foods has on improving cardiovascular health, which could in turn reduce dementia risk; what's good for the heart is good for the brain! In addition, the Mediterranean diet might increase specific nutrients that can protect the brain through anti-inflammatory and antioxidant properties.
The World Health Organization does recommend a Mediterranean diet — which includes lots of vegetables, legumes, fruits, nuts, cereals and olive oil and limited saturated lipids and meat — as one part of an overall strategy to reduce the risk of cognitive decline or dementia.
Do "brain game" computer programs or apps help slow down memory loss?
The most consistent finding from well-designed studies suggests that practicing computerized brain games or programs can increase performance at a particular skill — in other words, you get better at that specific game.
The evidence is much weaker in showing that the improved skill translates into overall day-to-day improvement of cognitive functioning or a reduction in the rate of memory loss. Similarly, there is no good evidence that regular participation in brain games will reduce the risk of dementia.
Mayo Clinic expert questions and answers
Review questions from Mayo Clinic Study of Aging participants and answers from study experts.
Source: Michelle M. Mielke, Ph.D.
Yes, our findings on topics including risk factors, blood and cerebrospinal fluid biomarkers, and neuroimaging generally extrapolate to clinical populations and other studies that are not population based.
However, studies of purely clinical populations do not fully extrapolate to our population-based study, especially when trying to develop risk scores for the development and progression of Alzheimer's disease and dementia. That is why it is important to develop risk scores and establish the role of biomarkers for community use in a population-based study such as the Mayo Clinic Study of Aging.
How does data gathered here compare with data gathered in other major research institutions?
Source: David S. Knopman, M.D.
The Mayo Clinic Study of Aging is really unique. We are conducting the only study in the world that meets high standards as an epidemiologically valid study that is also able to do large volumes of magnetic resonance imaging (MRI) and positron emission tomography (PET) scans.
No other epidemiological study in the U.S. or Canada does anything with brain scanning in healthy older adults. Johns Hopkins, Harvard and University of California, San Francisco, which are the other places in the U.S. that do PET imaging, do it on a much smaller scale in only select individuals. So for many reasons, the Mayo Clinic Study of Aging is unique.
What is a clinical diagnosis versus a biological diagnosis?
Source: Bradley F. Boeve, M.D.
A biological diagnosis reveals the actual underlying disorder causing a person's symptoms; examples include Alzheimer's disease, Lewy body disease and other diseases.
But because it is difficult to make a diagnosis with 100% certainty in the vast majority of individuals, clinicians use the patient's history and examination along with a battery of tests — blood tests, neuropsychological assessment, brain scans, and the like — to determine the clinical diagnosis. Examples of clinical diagnoses include mild cognitive impairment, Alzheimer's dementia, dementia with Lewy bodies and frontotemporal dementia. The clinical diagnoses can then provide strategies for management and prognosis.
Based on the clinical diagnosis, and sometimes special tests, clinicians can often suggest the biological diagnosis with a certainty of approximately 70% to 90%, but this is not a perfect science. In other words, in patients who have typical features and findings to give a clinical diagnosis of Alzheimer's dementia, most — but not all — will have an underlying biological diagnosis of Alzheimer's disease causing their symptoms.
As more potent therapies are tested, we want to be sure that we are treating the right biological disorder. This is why research is so important. Investigators want to develop the ability to determine the biological diagnosis as definitively as possible — particularly as therapies are developed and tested to positively affect key proteins that cause diseases. In Alzheimer's disease, the key proteins are beta-amyloid and tau.
What kind of cosmetic or visual effects will be present on family members who donate their brains for research?
Source: Kris A. Johnson, R.N.
Obtaining the brain tissue needed during autopsy should leave no disfigurement. The incision is in the back of the head and would require close inspection to be seen.
Can you clarify how imaging tests such as MRI and PET are different or similar?
Source: Clifford R. Jack, Jr., M.D.
Here is a brief explanation: Magnetic resonance imagery (MRI) reveals things about the anatomy of the brain, such as the presence of small or large strokes or whether certain areas of the brain are shrunken due to the effects of a degenerative disease.
Positron emission tomography (PET) scans show deposits of abnormal proteins in the brain, where they are located and how dense they are. The two primary proteins deposits we are able to identify are amyloid plaques and tau tangles. Separate PET scans are needed for each of these, and that is why we ask volunteers to do two PET scans in the same day — one for identifying plaques and one for identifying tangles.
What are the benefits of the Mediterranean diet? What about plant-based diets or others? Is there research showing the benefits of those as well?
Source: Mayo Clinic Patient Education: Mediterranean Diet (PDF)
The Mediterranean diet is more than a "diet." It is a heart-healthy eating plan. For most people, what is good for your heart is good for your brain — and the rest of your body, too.
The Mediterranean diet is shown to reduce the risk of cancer, heart disease, neurological diseases and diabetes. In addition, it may improve the well-being of those with depression. Studies have also shown a reduction in:
- Childhood asthma
- Erectile dysfunction and female sexual dysfunction
- Macular degeneration in people 60 years of age and older
- Metabolic syndrome
What gender differences are being seen in the data collected as a part of the Mayo Clinic Study of Aging?
Source: Michelle M. Mielke, Ph.D.
Examining sex and gender differences in the development and progression of Alzheimer's disease is a hot topic in the field and an area of active investigation in the Mayo Clinic Study of Aging.
Findings to date. In the Mayo Clinic Study of Aging, similar to several other population-based studies, men are more likely to have cognitive impairment than are women. However, among people with cognitive impairment, women tend to progress faster to a diagnosis of dementia. We are currently trying to understand why this is.
In terms of brain changes, we do not see any differences in women versus men for brain levels of amyloid and tau, the two hallmark pathological characteristics of Alzheimer's disease. However, we are seeing some differences when examining vascular-related brain changes.
The brain is composed of gray matter, which is made up of the brain cells, and white matter, which is made up of the axons that help the brain cells communicate. We tend to see more white matter changes with age in women but more small bleeds around blood vessels in men. We do not currently know what this means for risk of dementia and what is causing these differences between men and women.
With regard to risk factors for memory changes, we also see some differences between women and men. Although both women and men with less than 12 years of education, memory concerns, stroke and atrial fibrillation have the same risk of developing memory impairment, specific risk factors are more pronounced for women. These include being a current smoker, having hypertension and having high cholesterol. Among men, obesity, never having married and being widowed are risk factors.
Ongoing research. Some of our ongoing research aims to understand how certain factors specific to women or to men increase the risk of dementia.
Among women, we are examining whether pregnancies with high blood pressure, the removal of ovaries before natural menopause or the use of hormone therapies affect the brain. Among men, we are examining whether prostate cancer or certain types of chemotherapy used for treatment affect the brain and increase the risk of dementia.
Is it worth finding out whether a patient who has some memory issues has Alzheimer's or dementia? Should such a patient request any certain or specific testing be done when making an appointment?
Source: Hugo Botha, M.B., Ch.B.
There is a lot to unpack in these excellent questions!
First, it's important to be clear with the terminology, which can be confusing. There are some terms we use in neurology that serve as markers of the severity of a patient's cognitive or behavioral problems.
For example, if a patient has no concerns and no problems in day-to-day life, that person is "cognitively unimpaired." If the patient feels that memory or thinking has changed, but it's not impacting daily life and cognitive testing results are good, we may give a diagnosis of "subjective cognitive impairment."
If things are a bit more severe, such that the patient notices memory or thinking challenges during the more difficult aspects of daily life — for example, at work — and we find evidence for cognitive changes on testing, we may give a diagnosis of "mild cognitive impairment."
Finally, if things are bad enough that the cognitive or behavioral impairment is limiting the patient's day-to-day functioning and we find more severe impairment on testing, we may diagnose the patient with "dementia."
However, these terms do not specify the cause of the problem. Someone may have dementia from several strokes, or mild cognitive impairment from a traumatic brain injury.
This brings us to the second important point: Memory loss can be the result of non-neurologic diseases — such as vitamin or hormone deficiencies — reversible neurological conditions — for example, seizures — or neurodegenerative diseases such as Alzheimer's disease. It's important to establish the cause, because in some cases there are specific treatments that can reverse or slow the cause of memory loss.
Even among the degenerative diseases, it's worthwhile to get the most specific diagnosis possible. Alzheimer's disease refers to a particular disease process in the brain, with specific changes on brain-imaging markers, spinal fluid tests and pathology — although the last one can only really be assessed at autopsy.
There are other degenerative diseases that can cause identical symptoms, so we have to rely on special tests to figure out if someone may in fact have Alzheimer's disease. But some of these non-Alzheimer's degenerative diseases may not respond to medicines we use in Alzheimer's disease, or they may have other medicines that can help with symptoms, and generally the disease course can be very different.
The final important point raised by the question pertains to testing. Yes, there are specific tests that can be helpful.
An internist or general neurologist can evaluate for common medical diseases that may impact cognition, such as sleep apnea or vitamin or hormone deficiencies. This includes a detailed physical and neurological examination.
We recommend that patients with memory or cognitive concerns undergo formal neuropsychological testing unless it's clear from testing in the office that they will struggle significantly on formal testing. This is the best way to discern normal aging versus a disease process.
If cognitive impairment is confirmed and no clear cause is found on routine testing, a brain MRI should be done. This may reveal shrinkage of the brain, old strokes or brain bleeds. Depending on what is found, a consultation with a behavioral neurologist may be recommended, along with further testing.
The road to an accurate diagnosis can be long and frustrating, but it doesn't have to be. Mayo Clinic has an excellent book on Alzheimer's disease and related dementias that can serve as a guide through the process and important educational resource, with a new edition released in late 2020.
What questions should I be asking at my appointment?
Source: Mohamed Elminawy, M.B., B.Ch.
Research participants are the most valuable part of the Mayo Clinic Study of Aging. They are often very inquisitive about what we do. Typically, during a research visit, the participants go through an exhaustive list of tests and questions from researchers. One of our goals is to address any of their concerns as well. To this end, we always welcome any questions directed to us.
We at the Mayo Clinic Study of Aging firmly believe that proactive engagement will have a positive impact on the patient's overall experience. Examples of what we love to be asked include:
- What are some of the latest discoveries in the field of aging and dementia?
- What are the best available services that I can use to maintain my brain health?
- How does my family history of dementia affect my risk of developing a similar condition?
- Is there anything I can do to improve my memory?
Staff members in the Alzheimer's Disease Research Center and the Mayo Clinic Study of Aging are well trained, with extensive expertise, and are ready to answer all of your questions. We're equipped with a lot of resources, and we have many programs that we'd like to see our participants using more.
Are tau and amyloid proteins always present in the brain, or do they develop over time?
Source: David T. Jones, M.D.
Tau and beta-amyloid proteins are necessary for the normal functioning of the brain and they are always present, but their exact role in normal brain function is an area of active scientific study.