Ask an expert about dementia and early diagnosis

Dr. Suzanne Schindler is a neurologist who specializes in dementia. She sees patients at Washington University's Memory Diagnostic Center and researches ways to identify Alzheimer's disease before symptoms begin. She will be available to answer questions during a Live Chat at noon, Thursday, May 10, about early symptoms of dementia, the diagnosis process, challenges and why an early diagnosis is important even if there is no cure.

    Lonni Schicker settles into her bed at Mercy Hospital in Des Peres after having chest pains on Thursday, Feb. 1, 2018. She was to undergo a round of stress tests the next day. Dan Schicker, her son, came after work. (Christian Gooden / St. Louis Post-Dispatch)

    If an older person has just a general diagnosis of dementia by a primary care doctor, should they seek a more specific diagnosis of dementia type by a specialist?
    If someone is diagnosed with dementia by a primary care doctor, should they seek a more specific diagnosis?  
    This is a good question and I don't think there is one right answer in all cases.  Many primary care providers are able to diagnose and manage dementia.  However, it might be helpful to discuss with your primary care provider whether they think a consultation with a neurologist (including a dementia specialist) would be helpful.  Cases were a referral can be particularly helpful include if the primary care provider simply doesn't have time to thoroughly evaluate the patient (many evaluations can take an hour), if the dementia seems atypical (early onset, unusual symptoms), if the patient has a complex medical history, or if the patient would like to have a more detailed assessment.  
    My mother was diagnosed with dementia in 2007 and died in 2014. She never did take the prescriptions as written -- she had been a "self prescriber" all her life, so I shouldn't have been surprised (but was) when she announced, "If I feel sharp, I don't take the Namenda" or "Sometimes I take half a pill." Our journey with the disease turned out to be fascinating and brought us to the closest relationship of our lives. What should the families of current people with dementia do to ensure their family member is taking the prescriptions as prescribed? I still don't know what I could have done differently in my mother's case -- she was always independent and remained so in the early stages of dementia. Now I figure she was in Stage 3 when she was first diagnosed. Thanks.
    What should family members do to ensure that patients are taking their medications as prescribed?
    This depends on the patient's living situation.  Ideally, a family member will check to make sure that medications are set-up correctly (e.g. in a special box with each day of the week) and should observe their family member taking the medication at each dose, e.g. at breakfast.  However, patients may or may not be willing to allow someone to help them in the way.  It can be (very) difficult to ensure that patients are taking their medications as directed.  You kinda do the best you can...
    I am curious if you have considered studies about a correlation between aluminum (from cookware, foil, drinking cans, etc) and dementia. (Obviously aluminum is naturally present in the environment and our bodies, but I am speaking more of man-made materials that we use.) What is your opinion on this? For those of us with a family history of the disease, would you recommend that we try to avoid extra aluminum exposure? Thanks for taking the time for this chat! :)
    Is aluminum associated with Alzheimer disease?
    Some studies have shown that patients with Alzheimer disease have elevated aluminum in their brain.  However, this is almost certainly an effect of their disease and not a cause of their disease.  Many chemicals are abnormal in the brains of patients with Alzheimer disease and we have some ideas about why (too much to discuss here).  Importantly, other studies have been quite clear in showing that aluminum does not CAUSE Alzheimer disease.  There is no reason to be concerned about aluminum pans/aluminum foil causing Alzheimer disease.      
    Some of the people who have joined the Living with dementia Facebook group have mentioned fronto-temporal dementia. Can you talk more about what that is and how it differs from Alzheimer's and vascular dementia?
    How is frontotemporal dementia different from vascular dementia?
    Dementia means that someone has experienced a decline in their memory and thinking that is significant enough that it impact their function in everyday life to some degree.  There is a wide spectrum, from very mildly demented (can do most activities independently, but not as well as before) to severely demented (completely dependent on others for activities of daily life).
    There are MANY causes of dementia.  In individuals 65 and older, Alzheimer disease ans is a specific brain disease with changes that we can easily see on the microscopic level (amyloid plaques and neurofibrillary tangles).  The earliest symptoms include short-term memory problems.  Frontotemporal dementia is caused by a different brain disease, involving different microscopic changes in the brain.  Frontotemporal dementia can cause different types of symptoms, including severe difficulty with speech to major changes in personality.  Vascular dementia is caused by strokes and can also have many different types of symptoms depending on the brain regions affected by the strokes.  
  • how do you know if you have early stages of dementia or just getting older?
  • What changes do you see with aging?
    Typically we see that normal healthy individuals without brain disease develop increasing problems with age with word-finding (what was that guy's name?), slower thinking and multi-tasking.  Short-term memory problems (repeating questions over and over, misplacing items much more often than in the past, forgetting appointments much more often than in the past) are not considered normal and may represent a dementia.
  • What is the current status of treatment options for those diagnosed with beginning stages of dementia?
  • Dementia can be caused by many different problems.  Some are treatable and some are not.  For example, sleep apnea is a very common cause of mild dementia and is treatable.  Some medications can cause dementia, which will go away if the medications are stopped.  Other causes of dementia are less treatable.  For example, we do not currently have good treatments for Alzheimer disease.  We often prescribe Aricept/donepezil, Namenda and a few other drugs, but they don't have a big effect on disease.  We are currently doing drug trials for Alzheimer disease and will hopefully have better drugs in the future (e.g. in 5-10 years).
  • How do you know if depression/anxiety is causing dementia symptoms or if depression/anxiety is a result of experiencing dementia? How can you keep it from becoming a vicious circle?
  • Depression and anxiety are extremely common and often respond to medications, talk therapy and/or exercise.  Depression and anxiety can worsen memory and thinking problems.  It can be difficult to tell if they are the major cause of memory and thinking problems (usually not) or one of multiple causes contributing.  The way we typically sort this out is to attempt to treat the depression and anxiety and see if memory and thinking improves.  
    One note: Some medications for depression and anxiety can make memory and thinking worse, so it's important to discuss possible memory and thinking side effects of drugs with your doctor.  
  • My father was diagnosed with EO in November of 2016. He took part of a study (recently taken out due to an increase in amyloid buildup causing significantly worsened cognition). In any case, he had genetic testing done and they determined he had a double mutation of the APOE E4 gene. I am curious if you recommend that I (and 6 siblings!) get genetic testing done even if I am not showing significant symptoms? (I will note that I was recently diagnosed with Hypothyroidism at age never showed up in previous bloodwork).
  • APOE e4 is the major genetic risk factor for Alzheimer disease with an onset after age 65.  Whether normal individuals should get tested for this genetic variant has been discussed a lot, including by the ethics field.  The current consensus is NOT to test for APOE e4, mostly because many individuals who don't have APOE e4 still get the disease and many individuals with APOE e4 don't get the disease.  So, if you make decisions based on your gene status you may be making the wrong decision.  Another factor is that currently we don't have good medications for Alzheimer disease, so there is nothing that we could do to lower your risk if you were APOE e4 positive (beside healthy living, which you should be doing anyway).
  • For those who aren't familiar, here is more information on the APOE gene
  • My wife was diagnosed with moderate memory loss by her PCP and I asked for a referral to WU memory care. Schedule is for 9/10/2018. In the mean time I've ask for a referral to a Mercy neurologist. Can you recommend a better way to handle for a solid diagnoses?
  • I appreciate that it's difficult to wait this long for an appointment.  However, it would be reasonable to see a general neurologist, who can order the typical work-up (and rule-out anything that can be dealt with in the short-term) and still see a memory specialist in September.  Most memory problems are very slow moving and there typically aren't treatments that can quickly fix things, so a longer waiting period may not change things in the long run.  But I understand that it's frustrating and not optimal.
  • Are there "exercises" that people can do to prevent the onset or worsening of dementia?
  • "Exercises" to prevent or delay dementia:
    There are more and more research studies showing that physical activity is helpful.  It not only help your body, but also your brain.  I think some kind of DAILY (yes, every day) exercise routine is important.  The higher the intensity the better (within your physical limits, of course).  We also know that being active cognitively and socially are important.  There is not clear data showing that one kind of cognitive activity is best--e.g. we can't say that Sudoku is better than crossword puzzles is better than reading.  However, it's good to find something you enjoy that is stimulating and challenging.  It's good to try new things too!  Socialization is often very stimulating, especially if you can meet new people.  
  • A grandfather had Parkinson's, and his symptoms included mental issues (forgetfulness, etc.) that sound much like dementia. Do the two diseases typically appear together, or are mental symptoms part of Parkinson's? Is there a genetic component to Parkinson's / dementia / Alzheimer's?
  • Parkinson's is a brain disease and is one of the many causes of dementia.  It causes microscopic changes in the brain that are different from what we see in Alzheimer's disease.  The estimates vary, but perhaps ~1/3 of individuals with Parkinson's disease develop dementia.  It is also fairly common for people to unfortunately get both Alzheimer's disease and Parkinson's disease at the same time (we know this based on autopsy findings), although this can be difficult to diagnose at times.  
    There is a significant genetic component to both Alzheimer's disease and Parkinson's disease, which is generally smaller for Parkinson's disease.  However, many people with Parkinson's disease had no family history, and many people with a family history never get it.  So there are lots of other factors that we don't fully understand that are obviously important.  
  • So there are stages to dementia?
  • Regarding stages of Alzheimer disease...
    Different groups have come out with different stages for Alzheimer disease.  In the academic/research community, we tend to use a staging system called the Clinical Dementia Rating.  This separates patients into five stages, that I've roughly described below:
    1. Normal (but slight, inconsistent memory lapses may occur)
    2. Very mild- patients can still do many things independently, but not as well as in the past
    3. Mild-patients may appear normal but increasingly need help with activities of daily life (finances, transportation, household maintenance)
    4. Moderate-patients need assistance with many activities and are typically not able to live independently
    5. Severe-patient are dependent for activities of daily life and typically require significant assistance with personal hygiene
  • Is it important to have dementia diagnosed early since there don't seem to be effective treatments yet, and if so, why?
  • Again, it's important to keep in mind that dementia has many causes, and some are extremely treatable.  For example, starting CPAP for sleep apnea or stopping a medication can have a profound effect in certain cases. 
    In the case of dementia caused by a brain disease like Alzheimer disease, we do not yet have truly effective treatments.  So, an early diagnosis won't allow me to start a medication that will fix things.  However, it is relatively common for individuals with Alzheimer disease to have other problems that dementia specialists can help with, like treating depression, and which may actually improve memory and thinking (even though we haven't fixed the underlying Alzheimer disease).  Also, many patients appreciate having a diagnosis, which allows them to plan.
    Still, I think that it will become more important to have a correct and early diagnosis when we have effective drugs for Alzheimer disease.
  • My brother developed dementia immediately after having a heart bypass operation. Medical staff then told me this was very common and he would come out of it. Now he is diagnosed with vascular degeneration. If it is common to develop dementia from a major heart operation, why is it not mentioned beforehand? On the vascular degeneration, I assume that is degenerative and may be quick or slow. My brother seems to be worse off each month that goes by. Any comments, recommendations? He now requires nursing home care.
  • It is relatively common for older individuals with severe illnesses to become quite confused in the hospital (we call it delirium).  In some cases, these individuals may have been on the very edge of developing a dementia and their medical issues may have essentially "pushed them over the edge."  This is an area of increasing research interest because we still don't really understand it, but we do see it fairly often.  
    Diseases of the blood vessels (vascular disease) often affect vessels all over the body, including the heart, kidneys and brain.  It is correct that patients with major vascular problems (e.g. that would require heart surgery) are more likely to have vascular problems in their brain.  Heart surgery can also cause, in some cases, strokes.  In some cases (certainly not all), the strokes are in parts of the brain that affect memory and thinking, and therefore cause dementia.
    I would certainly recommend that you talk with your brother's doctors more about your questions.  Sometimes the exact answer is not clear, but they may be able to give you some information.  
  • Does brain damage from a stroke always lead to vascular dementia? And how do you differentiate the effects of the brain damage from the effects of the dementia (such as short-term memory loss).
  • Strokes are caused by a lack of blood supply to part of the brain, most typically from a blood clot.  The symptoms that result from a stroke depend on which part of the brain the stroke affected.  If the stroke affects part of the brain that is involved in memory and thinking it can cause dementia.  If it affects an area of the brain that controls coordination of the right hand (for example), it will not cause dementia.
    If someone has memory and thinking problems that started at the time of their stroke and the stroke was in the part of the brain that involves memory and things, then we say they have vascular dementia.    
  • Thank you very much, Dr. Schindler!
  • I assume that EO means early onset.
  • You're welcome!  Best wishes to you all.
  • Michele Munz is continuing to work on the series about dementia, which you can read here
  • The newspaper has begun a Facebook Group for those living with dementia; members are sharing stories and photos about their loved ones who have Alzheimer's or dementia symptoms. 
  • We will publish more articles in the series in the coming weeks and months.
    Thanks to all who joined the chat, and again to Dr. Schindler for spending time answering our questions. 
  • Also, we're asking those experiencing dementia, or those caring for people living with dementia/Alzheimer's similar diseases to share their stories. We'll be featuring some of the stories as part of the series of articles Michele Munz is working on. 
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