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Summary: WRAP Information Sessions 2008

The WAI recently held information sessions for participants in the Wisconsin Registry for Alzheimer's Prevention (WRAP) and others interested in Alzheimer's research. Many participants had questions during and after the sessions that we have answered below.

WRAP-Specific Questions:

If you see signs of mild cognitive impairment (MCI) or Alzheimer’s disease (AD) after we complete the neuropsychological tests at our second visit, will you contact us with that information? Yes. Because of the relatively young age of WRAP participants (mean age 57), we do not expect to find large numbers of persons with MCI or AD. Would you refer us to a memory assessment clinic? Yes.

Can we get our results (including neuropsychological testing, genetic testing, and routine lab testing) at the end of the study? This study is designed to continue through 2018, and depending on results, may continue beyond that date. If the study ceases in 2018, all participants will have access to their personal health information which includes the results of laboratory testing.

Will all WRAP participants do the phone interview that you described (referring to the CERAD memory test administered over the phone)? Yes, all persons in WRAP will be contacted.

Are you interested in recruiting our children (e.g., the grandchildren of persons with AD) into WRAP at some point in the future? Not at the present time.

When I went to a doctor’s appointment at UW Hospital, the blood tests I had for WRAP showed up in my record. I thought that no records would appear in my personal medical file. Is this not the case? Does my APOE result show up in my personal medical file? What about the other tests that are run? Will people who have access to these files be able to see that I am in an AD study? The APOE results are not in the medical record and are done at an outside laboratory. The routine lab tests, such as cholesterol levels, are included in the medical record. This is true for all lab tests performed at University Hospital, including persons enrolled in other research projects. The medical record does not indicate that a person is in WRAP.

If we would like to make a financial donation, does it go to any particular part of WRAP or WAI? All donations to the WAI that are designated for research are used to support WRAP.

Anesthesia Study Questions:

Is the anesthetic you’re concerned about as related to Post-Operative Cognitive Dysfunction (POCD) “general” anesthesia, “regional” anesthesia, or both? Is there a difference between the two in terms of their possible neurological effects? We are most concerned about the cognitive effects of general anesthetics. Regional anesthesia is less likely to affect cognition and is of less concern.

Are you including controls in this sub-study? Yes, controls are persons without a history of AD.

If we haven’t received info from you about this study yet, will we in the future? Yes, all persons will be contacted.

MRI Study Questions:

Why does having a mother with AD appear to put you at greater risk as compared to having a father with AD? This is unknown, but probably reflects what is called a sex-linked inheritance for genes involved in AD pathogenesis.

How do you correlate findings from the PiB compound study with neuropsychological results? PiB identifies beta amyloid which is found in the brains of persons with AD. Beta amyloid has also been found in blood. We will correlate the presence of beta amyloid in the brain with the results of the cognitive testing to determine the relationship, if any, between the two.

Can I participate in an MRI study if I take medication? Some medications affect brain function and thereafter influence MRI results. Please call 608-263-2582 to determine which drugs affect MRI results.

Do participants in the MRI studies return for retesting after their initial visit? Yes. Repeat MRIs are done near the time of repeat neuropsychological testing at time 2.

Statin Study Questions:

Which statin drugs are being examined in your studies? Simvastatin and atorvastatin.

Are statin drugs beneficial for people at risk of developing AD? This is a topic that is currently being studied by Cindy Carlsson, M.D., in WRAP. Theoretically, statin drugs should decrease the amount of cholesterol in the brain and reduce the deposition of beta amyloid which is found in high concentration in the brains of persons with AD.

UW/VA Madison Brain Bank Questions:

Are there any fees involved in having a brain autopsy done at the UW/VA Madison Brain Bank? If you are involved in the WRAP study, the only cost for a brain autopsy is for transportation to the UW. The approximate $1,000 autopsy cost is covered by the UW.

General Questions:

What is the difference between AD and dementia? Dementia is a general term that encompasses all causes of brain diseases resulting in cognitive and functional impairment. AD is the most common cause of dementia. Pick’s disease is a form of frontotemporal dementia that tends to occur in younger persons and is associated with behavior changes early in the disease onset.

Are there other AD studies besides WRAP going on at the UW? Yes. Please contact the Wisconsin Comprehensive Memory Research Program at (608) 263-2582 for further information.

Is the focus of most current AD research on delaying onset? The focus of much AD research is to slow the disease progression so that persons are less likely to develop symptoms in their lifetime.

Could you comment on the efficacy of over-the-counter supplements, e.g., turmeric, jellyfish extracts, THC, vitamin E, and vitamin C and their potential effect on brain health? Are there studies on these types of supplements and their relationship to AD? Unfortunately, there are no good studies of OTC supplements and AD. Vitamin E in pill form has not been shown to be protective.

What kinds of foods have been shown to be beneficial for brain health? Diets that are high in antioxidants (fruits, nuts and vegetables) and omega-3 fatty acids (fish)have been shown to reduce AD risk.

Are there any correlations between migraines and AD? None that we know of.

Are women more likely to develop AD? Women live longer than men and are therefore more likely to develop symptoms of AD. However, there is some evidence that estrogen may play a role in the higher prevalence of AD in women.

How is exercise a benefit for those of us at increased risk for AD? Yes, exercise, even if moderate, has been shown to reduce the risk of developing AD. The exact mechanism is unknown.

Why does a history of head injury put you at greater risk for AD? Does the severity and/or number of head injuries matter? Head injuries resulting in a loss of consciousness have been linked to an increased risk of AD. This is thought to result from an increase in deposition of beta amyloid in the brain after a head injury.

Are there any studies that examine the causes of AD and not just the progression of it? Could potential causes include any of the following: lifestyle factors, exposure to chemicals, occupation type, nutrition, environmental factors, etc.? All of the above may play a role in the development of AD and are being studied in WRAP.

Is consumption of red wine still recommended for brain health? How much is recommended? Moderate (1-3 glasses/day) red wine intake has been associated with reduced risk of AD. Grape juice may also be protective.

Are there any studies looking at meditation and AD? Meditation and stress reduction may be associated with a reduced risk of AD.

Are there any studies like WRAP in other states? Do you collaborate with any of them? The University of Washington in St. Louis has a smaller WRAP-like study, and we are collaborating with them whenever possible.

Where are the other major AD research centers? Where can I go online to learn about them and their research? A good website is clinicalresearch.nih.gov.

The Urgency of Our Mission

In 2008, it is estimated that there are as many as 5.2 million Americans currently living with Alzheimer's disease, and that number is expected to grow to as many as 16 million by 2050.

Every 71 seconds, an American develops Alzheimer's disease. By mid-century, an American will develop the disease every 33 seconds.

One in six women and one in 10 men who live to be at least age 55 will develop Alzheimer’s disease in their remaining lifetime.

Approximately 10 million of the 78 million U.S. baby boomers who were alive in 2007 can expect to develop Alzheimer’s disease.

African-Americans are more likely than Caucasians to have Alzheimer's disease.

The number of African-Americans entering the age of Alzheimer risk (age 65 or older) is expected to more than double to 6.9 million by 2030.

70 percent of people with Alzheimer's disease live at home, cared for by family and friends.

In 2007, 9.8 million family members, friends and neighbors provided unpaid care for a person with Alzheimer’s disease or another dementia.

The direct costs to Medicare and Medicaid for care of people with Alzheimer's disease and other dementias and the indirect costs to business for employees who are caring for people with Alzheimer's disease amount to more than $148 billion annually.

Source: Alzheimer's Association (2008). 2008 Alzheimer's Disease Facts and Figures.