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Alzheimer’s and Memory Loss Expert Q & A

Posted by on Sunday, February 9th, 2014

We receive a lot of questions via email and Facebook. Here are some answers to the most common topics submitted. We hope to answer more in our next Newsletter (sign up in the box to the right), or on our Facebook page.

Topics below:  Should everybody be doing things to prevent Alzheimers? / What are the stages of AD? / What are my chances to get AD? / Is there a test for AD?  What is the lifespan for a person with AD?

Please note that these answers do not constitute medical advice. Please seek the help of a qualified medical professional in your area and do not make any changes without first discussing with and seeking approval from the treating physician.

Wishing you the best in the fight against AD! We are all in this together!

QUESTION

If AD starts 20 years before signs of memory loss, and if there are ‘prevention’ treatments, shouldn’t every human being be taking the prevention treatments? (submitted by one of our Newsletter subscribers)

ANSWER

Great question. When in comes to AD, evidence shows that the disease starts in the brain >20 years before the first symptom of memory loss.  The difficult aspect about this question is that not everybody will develop AD, so it is currently impossible to know for sure who could best be served by risk reduction strategies. In summary, there are several “stages” of AD.  Stage 0 means that AD has not yet started in the brain and there is no clear way to know for sure is that person will (or will not) develop it. Stage 1 (described in more detail below) means that AD has started in the brain, but there are no symptoms yet. When it comes to the topic of prevention, which includes evidence-based ways to possibly delay AD onset or reduce risk, it is currently unclear whether or not these should be started during Stage 0 or Stage 1, nor which interventions may “work” better in different patient types.  This is an area of ongoing research and investigation.  But, to answer the question more directly, many physicians would advocate for making brain-healthy changes as early as possible to help protect the brain (as well as the body).  For people who are interested in being evaluated by a physician to discuss this further, learn more about the AD Prevention Clinic in NYC. Out-of-town visits are welcome, and video conferencing appointments are also available for people that live in NY and Florida. 

Also, it is important to cover some basic terminology used in your question. The term “treatment” is a term that is used for a medication (for example, an antibiotic is used to treat a sinus infection, or one of the four FDA-approved drugs is prescribed by a doctor for Alzheimer’s disease). When it comes to AD prevention, the more accurate terms to use include “management options”, “strategies” etc, since it is less clear when these interventions should be best started and which ones may “work” better in different people.

 

QUESTION

Hi Docs – Can you tell me about the stages of Alzheimer’s? Ive read different things on different websites and im not sure where my Dad fits in? I heard there are new stages that doctors use but I dont understand these.

ANSWER

There are a variety of different types of Alzheimer’s “stages” that have been described. Sometimes, the exact definition of the stages differs from person to person, or website to website, or even from doctor to doctor.

From a medical perspective, the most recent criteria by the National Institutes of Aging describe Alzheimer’s disease as a spectrum of disease, starting many years before the first symptom of memory loss. Only recently did the medical community start to recognize that Alzheimer’s actually “starts” in the brain up to 20-30 years before it is diagnosed. The first “stage” using this criteria is called “pre-clinical Alzheimer’s” which means there are no symptoms yet, but the disease has started in the brain. The next “stage” is called “Mild cognitive impairment due to Alzheimer’s” and this means that memory loss has started yet it is relatively mild and not affected the “activities of daily living” (which means the person is still able to care for themselves, work, prepare meals, shop etc). The next “stage” is called “Alzheimer’s dementia” which means a person has memory loss and other cognitive symptoms that impact ones ability to completely care for themselves (e.g., activities of daily living are affected).  Many doctors are now realizing that during the “pre-clinical” or pre-symptomatic stage of Alzheimer’s is the ideal time to suggest to people to make Brain-Healthy choices that can reduce Alzheimer’s risk and even delay its onset.

In the past, the medical community looked at Alzheimer’s as mild, moderate and severe, but sometimes the exact definition of mild vs. moderate vs. severe were inconsistent between healthcare professionals. Some would base the “stage” on a memory test score (like the Mini Mental Status Exam) and others would base this on how a person was doing in their everyday life.  The newest diagnostic criteria are called the “DSM-5″ criteria, which were just released in May 2013. These use the terms “mild” and “major” neurocognitive disorder, instead of the word dementia. These refer to “mild” meaning just having symptoms of memory loss, and “major” as having additional cognitive complaints.

All in all, the various staging definitions can be quite confusing, so we hope this helps to clarify!

 

QUESTION:

I have 3 family members with dementia, two with “Alzheimer’s” and my grandmom was diagnosed with “senile dementia” but not Alzheimer’s.  What are my chances to get this terrible disease? I am so scared and dont know what to do. Thank you for taking the time to answer me :)

ANSWER:

One of the most common questions that we get asked about Alzheimer’s disease (AD) is “If I have a family history, am I more likely to develop Alzheimer’s?” Before we answer this, let us clarify a few things. In general, Alzheimer’s is a very common condition regardless of whether a person has a family member with the disease. In fact, everyone’s risk of developing AD increases over time because the number-one risk factor is advancing age. That is why we all should start making changes in our lives to reduce this risk!  Most especially, seeing a physician for an evaluation, as well as lifestyle and dietary changes.

That being said, there are specific genes that can be passed on from parents to children that may increase the likelihood of developing Alzheimer’s disease. The good news is that only 6 percent of AD cases are caused by the types of genes that can lead to early-onset Alzheimer’s disease (we will not get into technical detail here, but these genetic mutations include presenilin-1, presenilin-2, and amyloid precursor protein gene mutation). These genes may contribute to the development of AD in patients younger than age sixty, although many younger-onset patients do not end up having these genes.

There is another set of genes that are associated with older-age onset of AD, or late-onset Alzheimer’s disease. The most well studied of these genes is called apolipoprotein epsilon-4 (or commonly referred to as APOE4 [or APOε-4]). Briefly, we get one copy of the APOE gene from our mother and another copy from our father. There are three types of these genes, APOE2, APOE3, and APOE4. If a person has one or more of the APOE4s, the risk of developing AD will increase. However, genetic testing for APOE is not currently recommended. Knowing whether a person has one or more copies of APOE4 does not necessarily help a physician predict if or when a patient will develop AD. Conversely, having one or more copies of APOE2 confers a reduced risk of developing AD.

We still have a long way to go before using genetic testing to help with the pre-symptomatic diagnosis of AD. For these reasons, most doctors do not recommend genetic testing on family members of Alzheimer’s patients. Instead, based on the latest scientific research, doctors are now starting to suggest several options to family members at risk.  As an example, Dr. Isaacson directs the Alzheimer’s Prevention Clinic  in the Weill Cornell Memory Disorders Program at WCMC/NYP in NYC. He evaluates patients and gives each patient a focused and individualized plan to either reduce their risk, or help them improve their symptoms, that is balanced in safety and grounded in scientific evidence (to watch Dr. Isaacson lecture at a recent international conference on the topic of Alzheimer’s prevention, click here).

Keep in mind that there are some changes in thinking skills that occur normally with age. This condition is called age-associated cognitive impairment. Symptoms may include intermittent memory loss, word-finding difficulties, and slowing of the speed of thinking. When cognitive changes are isolated to difficulties with memory, this condition is sometimes referred to as age-related memory loss.

We do not yet have all the answers about what would be considered the “normal” or expected cognitive changes that occur with age. Scientists also have much work to do to more accurately determine whether a person will develop AD instead of conditions like normal age-related memory loss. This is an area where active research is currently being conducted.

 

QUESTION:

Is there a test for Alzheimer’s disease? I am 43 and my mom is 68, she was diagnosed last year and I want to find out my chances.

ANSWER:

At the present time, there is no 100% accurate test to determine whether or not a person is going to develop Alzheimer’s. However, some of the most progressive Alzheimer’s specialists and researchers believe that the future of AD care is dependent upon our ability to diagnose it at its earliest stages.  The question becomes how do we identify these people?  There have been rigorous research efforts to identify these at risk patients, in order to intervene before AD declares itself clinically.  In addition, with the widespread availability of commercial genetic testing that commonly includes APOE status and with increased public awareness of AD, this question has been increasing in frequency in Dr. Isaacson’s clinic, which focuses on Alzheimer’s risk reduction and individualized preventative strategies based on a person current medical problems, family history, genetics, and dietary and lifestyle patterns.  Eventually a screening test may be possible, just as we screen patients for cervical cancer, colon cancer and diabetes to prevent future negative outcomes.  From a clinical perspective, interpretation of currently available biomarkers and genetic testing identifies asymptomatic patients with varying degrees of risk, and presents real-life diagnostic, therapeutic and ethical challenges. 

Currently available studies to help diagnose Alzheimer’s

Our tools available today include persons subjective complaints, memory/cognitive testing (called neuropsychological testing), brain imaging, and a variety of lab tests. While there are a few subspecialists who are solely focused on Alzheimer’s and AD research who have the expertise and background necessary to be able to both order and interpret these tests, AD diagnostic tests (called biomarkers) are not currently at the fiscal or practical stage to warrant widespread use (due to the lack of definitive results and their complexity in interpretation). However, on occasions where diagnostic uncertainty exists, such as a younger age of onset in an individual without clear risk factors or family history, some clinicians have relied on a combination of several currently available diagnostic studies that would tend to still fall in the “research only” category.  As such, it is important to note though that these tests are NOT typically recommended and only suggested in rare cases when ordered by Alzheimer’s specialists. There are many tests currently being studied and over the next several years, these new research finding should help advance the field considerably. 

 

QUESTION:

What is the average lifespan for someone with Alzheimer’s disease?

ANSWER:

This answer depends on a variety of factors, including the age that a person is first diagnosed with dementia due to Alzheimer’s (meaning Stage 3 of AD) as well as the other medical problems that a person has. Most healthcare professionals would say that the average number of years is >10 years, some would say average is 8-12 years, but again, there is a lot of variability here. If a person with Alzheimer’s is generally very healthy, they will tend to live longer. If a person has several medical problems like high blood pressure, diabetes, or cancer, the lifespan may be shorter. With advances in medical care, the overall lifespan should continue to increase as time goes on.