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  • With Mayo Clinic health education outreach coordinator

    Angela Lunde

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  • Alzheimer's blog

  • June 12, 2012

    Jargon causes confusion in Alzheimer's diagnosis

    By Angela Lunde

26 comments posted

Alzheimer's Caregiving

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A recent reader wrote that her spouse had been diagnosed with "brain atrophy." She asked about information on brain atrophy in distinction from Alzheimer's. What's notable is that brain atrophy isn't a diagnosis; it just means shrinkage of the brain. It's not a disease, but rather the result of brain disease. It can occur for many reasons — the most common cause is Alzheimer's.

This all seems rather confusing. I asked my colleague, Glenn Smith, Ph.D., Mayo Clinic neuropsychologist, to help sort it out. Here's his reply:

"I wonder if the reader was given the term brain atrophy because in our health care system so much jargon is used and therefore understandably, misunderstood. I think that one explanation for the confusion is because families and health providers alike are afraid of the A word — Alzheimer's.

The good news is that we've come a long way from the days when everyone thought senility was typical of aging. We know and understand that thinking and memory problems aren't a part of normal aging. But now we have a plethora of related terms, yet each distinctively different in their meaning, terms such as mild cognitive impairment, brain atrophy, amnesia, cognitive decline, dementia, and Alzheimer's. What's confusing is that some terms describe an etiology, others a syndrome or a symptom.

In some cases, doctors may use the more vague terms to avoid breaking bad news. Alternatively, he or she could say "we can't really know until autopsy." The truth is however, that after an adequate evaluation, a doctor can offer a diagnosis that is accurate 90 percent of the time.

In addition to the confusing and widely varied terms doctors may use, patients and families will sometimes avoid hearing hard messages. Instead, they may grab on to certain words or stop short of asking for clarification or asking hard questions. This is both normal and understandable and often a first line of coping when receiving difficult news.  Yet, clearly understanding a diagnosis is essential to coping and managing in the long term.

In order to receive a timely, accurate, and understandable diagnosis it helps to better understand some key terms. Let's start with three terms, etiology, syndrome, and symptom.

Etiology is another word for cause. Syndrome is merely a collection of symptoms.

As an example, let's consider pneumonia. Pneumonia is a syndrome — a set of specific symptoms. The symptoms comprising the syndrome can include fever, cough, chest pain, and fatigue. Pneumonia is not an etiology, or cause. A common etiology of pneumonia is infection with the pneumococcal virus, for example. But aspiration of food can also cause pneumonia. The physiologic consequence is fluid in the lungs.

Similarly, dementia is merely a syndrome, a collection of symptoms, and not an etiology. Dementia symptoms include decline in thinking and/or memory ability, sometimes referred to as cognitive impairment. Dementia symptoms also include a change in one's ability to function independently.

Mild cognitive impairment is also a syndrome. It shares the cognitive impairments of dementia, but not the loss of independent function. All of the etiologies that can cause dementia also cause mild cognitive impairment including Alzheimer's, Lewy Body disease and stroke. The common physiologic consequences of these diseases are brain cell death resulting in brain atrophy.

When a family and patient are meeting with a healthcare provider to receive an understandable diagnosis for the symptom of memory loss, it's within their rights to ask if the diagnosis they are given describes an etiology, a syndrome, or a symptom. In other words, if the diagnosis given is merely brain atrophy, mild cognitive impairment or dementia, it's reasonable to ask what the likely cause (etiology) is. But that takes being brave enough to possibly hear the "A" word.

The reader's inquiry underscores however, both the complexity and the challenges families still face in obtaining a timely, accurate, and understandable diagnosis. Recently, the federal government released a National Plan to Address Alzheimer's disease. This large step forward enumerates the following 5 key strategies in our efforts to address the profound impact of Alzheimer's disease:

  • Prevent and effectively treat Alzheimer's disease by 2025.
  • Optimize care quality and efficiency.
  • Expand supports for people with Alzheimer's disease and their families.
  • Enhance public awareness and engagement.
  • Track progress and drive improvement.

An action under the second key strategy (optimize care quality and efficiency) is to ensure timely and accurate diagnosis. Clearly, it's not just this blog reader who left the doctor's office with unanswered questions and uncertainly. This is happening far too often. Health care providers, as well as persons with memory changes and their families need to be educated and empowered to seek and receive an early and clear diagnosis."

Although there isn't a cure for Alzheimer's or the related dementias such as Lewy Body disease, there is empowerment in clearly naming the disease. Once this takes place, persons with the disease and their families can fully understand and better accept the changes that have been occurring.

A clear diagnosis offers the patient and family precious time to arm themselves with knowledge, seek supportive services and programs, prepare thoughtfully for the future, and take advantage of existing strengths. Early diagnosis allows for the possibility that cognitive changes can be delayed, and symptoms such as depression can be identified and treated.

For many, the secret to navigating this journey lies in knowing — and this may be the first step towards living life fully (again).

To see the National Plan to Address Alzheimer's Document go to http://aspe.hhs.gov/daltcp/napa/NatlPlan.pdf.

26 comments posted

blog index

  • October 29, 2012 9:43 a.m.

    to Mary: your husband is not in work. He has not anny male work, he lost his work. And so the daily life is a little bit empty. He have to find anything he will like to do. But it is not all, he have to see things, he like. Take the things in the hands. And discribes the things, and speaks, and writes this. So in his brain the brain cells are better connected. And the concentration is better. And the he is hopefull and this is to think and remeber better. The biochemicals are better in working. I wrote a book. Rediscover Recovery. I am a caregiver for long time.

    - Susanngab

  • October 21, 2012 1:06 p.m.

    My husband is only 64 and started having minor memory problems almost 2 years ago. I immediately took him to the doctors because he has history of the disease in the family. The doctors put him on aricept 10 mg once a day and I myself have put him on vitamin D3 and B12 and am glad for right now because he is holding his own not much change yet thank goodness. I know life will not be easy down the road but today we are happy so I live for today not tommorrow. Also any one out there should really think about getting a irrevocable trust if they have any life insurance or more than one home because as long as you have 5 years if he would ever have to go to a home everything is protected from medicaid too many people put this off but was the first thing I did.

    - Mary

  • October 5, 2012 4:32 a.m.

    to bruce, yes you are right.Because the problem is in the social life There is to much and fast helpfull word from the other. So the individual doing from the humen with Alzheimer desease, Dementia is not in useing. And the individual information in their brain cannot work.All the medicals are not only helpfull. The information are less for the brain.And all the biochemicals in the brain become become also less. So the brain cells go down.When the human with Alzheimer desease, Dementia is doing himself, all the individuell information are connecting all the brain cells. With the own words,and thoughts the conections with transmitters is the key for the brain cells. And so the biochemicals will be better build and work. It is the key for better output. This are non- pharmacological systems. We must changes the social lifestyle. I wrote a book Rediscovery Recovery, Practical Reference Training.

    - Susanngab

  • August 6, 2012 9:27 a.m.

    My 96-year-old mother's death certificate read "advanced dementia" as cause of death yet she was lucid and "herself" until the final week. Her primary-care physician, the health-care workers where she lived, and her immediate family did not understand the label of "advanced dementia", but the hospice physician/supervisor who signed the certificate was unmovable in his determination "based on her chart". Is this the new cause of death in the elderly?

    - Terry

  • July 1, 2012 4:12 p.m.

    (cont-apologies for posting in sections-final)The Memory Training Centers of America has requested that NGS resume coverage for patients suffering from Alzheimer's disease (as well as other chronic, neurodegenerative diseases) allowing such patients to receive one of the only interventions that at this time is known to be helpful. May 23, 2012, NGS rejected this request. NGS will not allow cognitive rehab to be applied to memory loss and other cognitive impairments resulting from neurological diseases such as early Alzheimer's. These patients will only be allowed ineffective medication. We are appealing that decision. One has to wonder what could possibly be the motivation of Medicare to stop a medically necessary treatment that can relieve or delay the major symptoms of this devastating disease, in the face of the research, and in the absence of a "magic bullet," and with NAPA's stated goal of finding that bullet by the year 2025. What are we to tell our patients TODAY, who we know we can help, but from whom Medicare is now withholding treatment? Bruce Brotter, PhD, Clinical Director, Memory Training Centers of America, bbrotter.mtca@gmail.com

    - bruce

  • July 1, 2012 4:10 p.m.

    (cont)So we know from the NIH review and others that cognitive training is an effective treatment for cognitive decline and early stage AD. We also know from the NIH review that the benefits of pharmaceutical approaches showed no such effect. And we now know that adding cognitive training to pharmaceutical intervention "enhances" the effect of medication alone. Still, NAPA does not speak of the practice or funding of cognitive intervention. And there is more bad news coming. Despite the NIH report, and despite recommendations by organizational advocates for the Alzheimer's patient (AA, AFA, & others) regarding the need for early detection and effective interventions, one of Medicare's largest Carriers — NGS — has removed cognitive rehabilitation as treatment for memory loss, when cognitive impairment results from neurological disease. This ruling most directly impacts upon the early Alzheimer's (pre-clinical) patient. In 2007, NGS reviewed the available research, and changed their policy to allow Alzheimer's patients to receive cognitive rehabilitation, including memory training. However, in 2009/2010, when NGS was reorganized, that decision was reversed - at the very time that NIH informed us that cognitive training was the factor most highly associated with a decreased risk of cognitive decline. Is it possible that NGS was unaware of the latest research? Is it possible that this pivotal finding was known but ignored? The Memory Training Centers of America has

    - bruce

  • July 1, 2012 4:08 p.m.

    (cont)funding for further study. Even in the face of the NIH report and countless others (not listed in NAPA bibliography), the protective and restorative effects of cognitive training are not discussed. Is it possible, as Dr. Whitehouse suggests, that the funding from pharmaceutical companies and the search for the "magic bullet" has resulted in neglect of what is already known and available in our "arsenal" to help patients struggling with the early effects of Alzheimer's disease? We think it is, and that a true disservice is being done to patients and families who are in desperate need of help NOW. We certainly believe that biomedical research should continue, and it is of course our fervent hope that ongoing research will lead to new and improved treatments for patients with chronic neurologic diseases such as Alzheimer's, including the possibility of a "magic bullet — cure". However, we must also make every effort to keep the public well-informed regarding effective non-pharmaceutical intervention. We know that in clinical practice, biomedical and psychological or rehabilitative interventions are not mutually exclusive. In fact, in the field of cognitive rehab, a March, 2012 review by Cotelli, et al., makes the case for combining biomedical and cognitive rehab interventions in relation to Alzheimer's patients: "The studies described above have shown that non-pharmacological intervention can enhance the effect of ChEI treatment."

    - bruce

  • July 1, 2012 4:03 p.m.

    (cont)the 'magic bullet' approach does not reflect "existing clinical evidence or emerging neuroscientific thinking, nor does it address the lifelong needs and demands of our citizens." Dr. Whitehouse challenges us, instead, to "imagine the implications of being able to maximize cognitive performance and delay cognitive decline, and in so doing, that we build on what we already know." Much of what we know today results from the comprehensive 2010 NIH 'State of the Science Review,' which provides evidence for the benefits of nonpharmacological interventions. A most significant finding was that cognitive training appears to be protective against cognitive decline, whereas pharmaceutical/'magic pill' interventions had no such effect. Dr. Whitehouse continues: "It simply makes no sense to put all our eggs in the biomedical basket…. Sure, more research is better than less, and we hope that the new funded trials will result in useful drugs. But neither policy-makers nor citizens should wait until then to foster and make lifestyle decisions than can maximize cognitive performance across the lifespan." We could not agree more with the concerns raised by Dr. Whitehouse. The NIH report tells us there is so much that can be helpful to healthy older adults as well as individuals suffering from MCI and early stage AD. And yet, NAPA (latest version 5/15/12) does not once mention cognitive therapy or training as an effective intervention, or even mention fundin

    - bruce

  • July 1, 2012 4:01 p.m.

    Yes, proper dx is most important, and dictates treatment options. There are non-phamaceutical interventions available for patients experiencing pre-clinical and early stage symptoms. Please read on: Medicare Stops Cognitive Therapy for Patients with Alzheimer's Disease Non-pharmaceutical interventions for Alzheimer's patients & others with memory loss or cognitive impairment are under attack. Info provided, advocacy needed. FOREST HILLS, N.Y., June 5, 2012 /PRNewswire-iReach/ -- SHARPBRAINS has published an article that is essential reading for all providers, patients and family members who are concerned with the availability of effective interventions to treat Alzheimer's disease. MEMORY TRAINING CENTERS OF AMERICA agrees with the concerns raised in this article, and warns that more 'bad news' is coming. In his article, "From Anti-Alzheimer's 'Magic Bullets' to True Brain Health," Dr. Peter Whitehouse writes that if one followed the headlines surrounding the National Alzheimer's Plan (NAPA), "you'd probably conclude that the likely solution to maintain lifelong brain health is simple: simply wait until 2025 for a 'magic bullet' to be discovered, to cure (or end or prevent) Alzheimer's disease and aging associated cognitive decline. These kinds of beliefs, often reinforced by doctors and advertising, may explain the billions spent today by pharma companies on discovering new compounds...." (SharpBrains, May 31, 2012) Dr. Whitehouse continues that the

    - bruce

  • June 26, 2012 11:40 a.m.

    After years of sleep problems, my husband was diagnosed with Parkinson's Disease. During the past 12 years and 2 very bad falls, his mind has deteriorated steadily. At a Support Meeting I asked the speaker the difference between dementia and Alzheimer's. She said Parkinson's dementia patients remember their loved ones. I know that his dementia can lead to Alzheimer's...but for now remembering his loved ones sustains me. God bless us all.

    - Darlene

  • June 23, 2012 1:12 p.m.

    I am a nurse. My mother always feared Altzheimer's disease and through a cruel twist of fate her youngest daughter, my sister, developed early onset dementia in her early 50's. She is now in her 6th year after diagnosis. Of anyone I know in this world, she least deserved this crippling illness and the worst part of it is her awareness of it and the hardship it brings to everyone in her circle. Unlike cancer or other devastating illnesses, her friends have fallen away, even her ya-ya sisterhood ... they just can't cope with not knowing what to say or do. Fortunately this woman has a devoted and loving husband who wants to care for her in their home as long as he can. We her family were all very unbelieving and angry and frustrated with the initial "language" of the neurologists ... we always thought of her as delightfully scatterbrained. I'm so happy to find this blog to read about others and to talk about my sister and what she and our family are going through. Thanks to all of you out there for sharing. God Bless Us All Jackie in Colorado

    - Jacquelyn

  • June 20, 2012 5:04 p.m.

    My husband will not admit anything is wrong. I know something is very wrong. He could not remember the 3 words on the mini-mental. He had a MRI due to hearing loss that showed shrinkage of the brain. I wonder if the hearing and eye problems are related with the memory loss. Why can't the doctors not be afraid to tell what is wrong?

    - Marie

  • June 18, 2012 8:31 a.m.

    Ronald, Alzheimer's affects the body in soo many ways and in negative ways. There is no one thing. You can't pinpoint it or know when to look for it. I recommend that you talk with your doctor. There is

    - Lynn

  • June 17, 2012 9:42 a.m.

    Excellent information for me, a caregiver to someone who has recently been diagnosed with Alzheimers. I will also give him the article to read so he can better understand the jargon. Thank you!

    - Carole Ann

  • June 17, 2012 12:11 a.m.

    What is in a name? We can call it by name or not, it changes nothing. Diagnosis without treatment is meaningless. To coin a phrase: It is what it is.

    - Bonnie

  • June 15, 2012 2:03 p.m.

    When my husbands memory problems could no longer be overlooked we went to a local neurologist who had seen him before. He ran many tests then gave us a diagnosis of 'brain atrophy'. A few mounths later on a return appointment we asked point blank if he had Alzheimer's and just received a very noncommittal answer. This was very frustrating because we felt we werent going anywhere and wanted to know so we could take necessary steps. We next obtained a referral to a memory clinic, actually Mayo Clinic in Florida and after testing received a diagnosis of probable moderate Alzheimer's. We understand that ALZ can only be diagnosed at 100% on autoposy, but feel that the diagnosis given to us is accurate. It is much better knowing than living with the uncertainty of whar is going on. Before diagnosis we were reluctant to share with others because we really had nothing to share. Now we share his diagnosis and are able to educate others.

    - Linda

  • June 15, 2012 11:19 a.m.

    Question: When it is said a person died of Alzheimers, what exactly does that mean? What actually causes the death that is attributed to Alzheimers. What essential organ has stopped functioning? I am puzzled. My 89 yr old wife, Alzheimers for last 9 or 10 years, has modest blood pressure, is slender, physically apparently healthy. Might last to be 100 yrs of age! How might Alzheimers kill her? I would like to be en guard for symptoms, of what? (And I am concerned she will outlive me! PLEASE ANSWER!!

    - Ronald

  • June 15, 2012 10:04 a.m.

    Hi Merle... I am 60, and both my parents (86 and 90) live with us. My mother has Altzheimer's and my father has mild dementia. I too make sure they eat well and have snacks. They both have good appetites. Most of the time they are cold, so I keep extra sweaters on the back of their chairs in the kitchen, even in the summer. My Dad still loves to read and do crosswords, so I make sure he has his daily paper by his side at breakfast. My mother loves flowers, so I keep a bouquest on the table where she can see them. I keep their lives as simple and routine as possible. I am lucky that my brother who lives nearby takes them to their doctor appointments and handles their meds. We decided to try to keep my lovely parents out of a nursing home as long as possible. They were good to us as children, so we are trying to repay them in kind. It is not an easy job, but we do it out of love for them.

    - Demelza

  • June 15, 2012 12:50 a.m.

    I have had Mom living close by in a centre where there are caregivers for Alzheimers and the various other diseases that come with age - I have watched Mom closely as some programs show that the caregivers can smack or hurt these old people that cannot defend themselves (reason). During the last 3 years the progress was firstly very fast and ended with Mom not speaking at all - now Mom talks to me a little and I always assure her I will be there every day at 4pm straight from work and that all will be done for her - this she understands and also I have found that the less you give in medication the better off these people actually are vitamins are probably the best after a certain stage and if you make them drink water frequently it also seems to help you can continue with drugs that are ment to stabilise the brain for as long as you see it helps but there comes a point where it seems as if these drugs are no longer really helping and maybe the patient will/would do better without them, I just keep her warm the internal thermostat sometimes seems not to work very cold hands a sign, well fed as this is another thing I notice that without feeding the person will get thin so you need to watch their diet and help them eat and water is very important a marked improvement as it seems the brain needs this. This may help someone out there and if it does I would be pleased, help with going to the bathroom and keeping a strict routeen have all helped with my Mom. Merle

    - Merle

  • June 14, 2012 3:37 p.m.

    My precious husband was concerned about not remembering but was told by more than one Doctor that that was his age, when I told my doctor about him he said to bring him in and yes he tested him with trying to remember 3 things, he remembered two and looked to me as he had done for years for the answer. Right now I am waiting for the VA for some help and have people at our church whose mate has it and we share with one another, our family is very supportive and gives us transportation when needed to go. I bath him, help him get dressed, wipe his bottom and love him dearly. It is breaking my heart to see my mate of 59 years go this way but the Lord Jesus is my help, strength and all that I need to cope with what I have to cope with. Thanks for the information it was just like our doctor had told us, he is not the man I married in one sense as we always did everything together. Now I do all the work inside and what I can outside and ask for help when it is needed. I am thankful for this site and the ability to share.

    - Dorothy

  • June 14, 2012 3:20 p.m.

    VERY CLEAR ARTICLE WITH ENOUGH EXPLANATIONS.

    - ENRIQUE

  • June 14, 2012 3:17 p.m.

    When my mother in law was diagnosed with Alzheimer's disease, it really freaked her out. So when we returned to her doctor the next time, he told her that her memory loss was probably from her not sleeping at night. After that she was fine. We are all different. We too just continually reassured her that we were here for her even when she needed help getting up during the night. She forgot where the bathroom was. She was always very appreciative of everything. We were blessed.

    - Martha

  • June 14, 2012 3:16 p.m.

    When my mother in law was diagnosed with Alzheimer's disease, it really freaked her out. So when we returned to her doctor the next time, he told her that her memory loss was probably from her not sleeping at night. After that she was fine. We are all different. We too just continually reassured her that we were here for her even when she needed help getting up during the night. She forgot where the bathroom was. She was always very appreciative of everything. We were blessed.

    - Martha

  • June 14, 2012 3:03 p.m.

    Jean, I worked several years in a nursing home on an Alzheimer's ward and now both of my parents have it. My mom recognized her own symptoms and convinced her doctor to give her a cognitive test. Even though she has been aware since the beginning that she has Alzheimer's, she still has moments of confusion and says the same things as your mom. It is common to go through a stage where they know something is wrong, but are not able to figure it out. It's just the nature of the beast. Telling her she has Alzheimer's when she was diagnosed probably wouldn't change the situation. It's great that you tell her that you are there to help. I guess I'm just trying to tell you that it's not your fault. Cate

    - Cate

  • June 14, 2012 1:31 p.m.

    Jean, at the first point of diagnosis for my beautiful mother, the doctor recommended that we NOT tell our mother her diagnosis was Alzheimer's. I could not for the life of me understand why not, even until this day; and that was October 6, 2005. My mom KNEW something was not right. She knows it today. When she gets agitated, or tries to talk to me she'll say, I don't know why i do this or that(sometimes not making any sense). But I know she is saying that she doesn't know why she forgets or do this and that. My comment to her is that it is alright and i am here to help you always. She says I know and thank you. My mom knew she had alzheimer's before it progressed to this point. Even though she knew it then, she doesn't know it now. All she knows is that she can't talk right, or doesn't understand or comprehend what i am saying to her sometimes. She still knows something is not right. She doesn't know it is Alzheimer's (now); she just knows something isn't right. So I'm just there to say I am ALWAYS right here with you to help you and to do what you want me to. She feels comforted by that and secure. Even if you did prepare your mom, the end result may still be the same. Just let her know you are there with her :-)

    - Lynn

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