The Trouble With Expectations

You’ve probably seen recent media reports on the proposed changes to the guidelines for diagnosing Alzheimer’s, along with an article claiming that “a spinal fluid test can be 100 percent accurate in identifying patients with significant memory loss who are on their way to developing Alzheimer’s disease.”   Today’s headlines include a story about a blood test for predicting whether you’ll develop Alzheimer’s.

Although most professionals are careful to say the proposed guidelines and tests aren’t ready for widespread use, public expectations seem very high.   On a flight last month, I sat next to a man in his 20s whose stepfather is showing signs of memory loss.  My seatmate wasn’t terribly concerned about his stepfather, he said, because he had seen the recent reports of progress in Alzheimer’s research and believed that a cure is around the corner. 

Expecting Improved Diagnosis and Treatment

        Mary Kay Baum

Two of my friends diagnosed with young onset dementia also have high expectations.  They sent me their thoughts supporting the proposed guidelines for diagnosis, particularly the guidelines for a diagnosis of “preclinical Alzheimer’s.”  Their strong support is based on the long and difficult process each went through to get diagnosis and treatment, and the relative success of treatments in stabilizing their conditions.   It’s also based on their assumption that they would have been diagnosed with some form of Alzheimer’s if the proposed guidelines were used when they first sought answers about their symptoms.

“Consider me,” wrote Mary Kay Baum, who has a strong family history of dementia.   “I am a 63 year-old woman who was a lawyer and pastor with two graduate degrees, thirty years of public service, and ten years of cognitive challenges. The old Alzheimer’s disease criteria ignored me. It did not have a vocabulary for my issues. Doctors did not know what to do with me! The criteria from 25 years ago did not advise practitioners to help me prevent the dementia we had seen in my mother and my aunt while in their mid-fifties. Most research excluded me…. Many in my situation fear we won’t be treated until we are really demented.”

Mary Kay stresses that her neurologist’s careful attention to addressing her symptoms such as sleep disturbances, depression, tremors and falls greatly contributed to her current stability.  She believes a diagnosis of “preclinical Alzheimer’s” would have encouraged her doctors to address her health issues earlier.  And she feels the new guidelines would allow people like her –- relatively young, with mild cognitive problems – to participate in research.

            Jay Smith with his wife Marilyn

Jay Smith echoed her thoughts.  “As a patient who stumbled upon my diagnosis five years ago,” he wrote, “after a fruitless year and a half of trying to find out what was causing my symptoms (fatigue, dizziness, lack of balance, mind fog) -- my finally getting a diagnosis of ‘early Alzheimer's disease’ allowed me to change everything, to take my life back, with a whole new set of priorities.  My life has been better for it, and I'm still going at it, enjoying it more than ever.   I feel strongly that anyone who is troubled by the symptoms of Alzheimer's, and wants to find out what is causing those symptoms, should be able to do so.”

Mary Kay and Jay clearly expect the new guidelines and tests will lead to better diagnosis and treatment.  For someone in their situations, this may be true. 

But when it comes to memory loss, each person’s situation is different.   It seems there are a variety of symptoms, and perhaps a variety of pathologies, involved with cognitive problems.  “If you’ve seen one person with Alzheimer’s, you’ve seen one person with Alzheimer’s,” I hear over and over. 

Thinking back to my family’s experience, I’m not sure that any of these proposed diagnostic tools would have helped my father.  Each test or brain scan seemed to cause him stress.  And whether or not he would have been diagnosed with some form of Alzheimer’s under any of the proposed guidelines, there wasn’t much we could do to slow his cognitive decline.  He already had the many interests, supportive community and family, low blood pressure, normal blood sugar and low cholesterol many experts say protect against dementia.   Aricept, Namenda, cholesterol-reducing medicines, aspirin, gingko, B vitamins and other treatments did nothing to help him. 

Expecting Memory Loss and Death

Susan Krauss
Whitbourne, Ph.D

While my expectations about diagnosis and treatment for my father were too optimistic, expectations that are too pessimistic can be just as harmful.  In her Psychology Today blog, Fulfillment at Any Age, Dr. Susan Krauss Whitbourne discusses the negative expectations the proposed diagnostic guidelines and the idea of diagnosis via spinal tap can create. 

“If the recommendations are followed, “ she writes, “a scenario can emerge in which individuals with mild memory symptoms are subjected to expensive and harsh biomedical testing, with methods that are themselves not proven to provide reliable or valid diagnoses.  In fact, they could be given this testing even if they have no symptoms if it is concluded that they are genetically at risk. Then there will be nothing the patient can do but wait five, seven, or ten years for the ‘inevitable’ to occur—the development of increasingly severe symptoms and death from the complications of the disease.  But these biomarker tests have questionable accuracy, so the outcome is not inevitable.  Some people will never get symptoms of the disease, despite living in fear with the diagnosis for years.”

 Dr. Whitbourne, a professor at the University of Massachusetts Amherst, is a psychologist who teaches and conducts research in gerontology.    Her interest in aging and dementia isn’t purely academic.   “I literally ‘grew up’ in a nursing home where my father was medical director,” she says, “and I decided early in my college career that I wanted to study the field. I also have had relatives with Alzheimer's disease and cerebrovascular disease, and so it is a personal passion for me as well.”

The push to develop tests for Alzheimer’s can be considered in a broader context.  “I think that there is a movement toward medicalization of many behavioral phenomena,” Dr. Whitbourne says.  “In part this is because the technology is developing whereby we can ‘peek’ into people's brains. The issue is whether we know how to interpret what we see when we take that look.”

What’s Wrong With Hope?

What’s wrong with a little hope?  Given the long string of failures of Alzheimer’s drugs in clinical trials and the controversy in the research community over the causes of Alzheimer’s, hopes for a near term breakthrough seem false. 

False hope can cause personal suffering.  Some people with memory loss and their families are not planning for future care, because they hope new treatments will eliminate the need for that care.   In my father’s case, we hoped that the headlines trumpeting scientific success meant there were treatments that could stop his decline.  Despite a lot of research, neither my father nor I could find anything that helped.  We felt frustrated and inadequate.
 
In the long run, false hope causes doctors and researchers to suffer too.  Patients and families are angry when their doctors can’t diagnose them with certainty, or prescribe highly effective treatments.   If hopes raised by optimistic reports turn out to be false, the anger evident in some of the comments on the New York Times article about the proposed guidelines is bound to increase.  Given our high expectations, slow but steady progress by scientists can go unappreciated, and already scarce research funding may dry up even further.

It’s hard to say whether exaggerated claims and breathless headlines are fueled by wishful thinking, the need to raise funds, sloppy reporting or all of the above.  I don’t think they’ll go away anytime soon.   So it’s up to patients and families to look at the data behind the headlines.   Be skeptical when you hear reports using the words like “cure” or “breakthrough.”    If you want more information on a study, look on PubMed or the Alzheimer Research Forum.   Ask others about their experiences.  Talk with your doctor about what proposed diagnostic procedures or treatments might mean for your particular situation.  But don’t plan your life around the headlines.

 

 

 

Comments

[DON MOYER]

Mona, great post.

Health care is driven by "diagnosis" but "diagnosis" has too much uncertainty to carry this burden, reality is too messy. "Diagnosis" hides the messiness. This needs a major study.

We can -- we do -- know how to deal with messy reality in many parts of our lives. Why not in health care also?

[Danny George]

Mona, like Don said above, this is just a fantastic, balanced piece. Another dimension of this that is worrisome is cost. Peter and I had the chance to meet w/ a rep from Athena, the company that makes the kits for the biomarker test Gina Kolata wrote about in the NY Times. $903 for the testing itself, not to mention the cost of nurses/doctors who administer the spinal tap (about $3,000 if you factor that in). Not sure we can afford a test like this as a society, esp when it risks so many false positives. Nevertheless, I appreciate that people need hope and clarity, and that the dominant medical model provides that. All we can do is empower folks with enough information to know that they have a choice in determining their clinical course

[Margaretmassey.wordpress.com]

I feel it's so important to look at health and disease as it manifests uniquely in each individual, which you support so well with this article.

Labels and diagnoses only get us so far, but careful observation and attention to detail is quite different, as lucky Mary Kay Baum found out with her astute neurologist.

Hopefully in the future there will be less categorizing in dementia treatment and more attention to a person's unique challenges, which can be treated in multifaceted ways if we keep our minds open.

[August J. Specht II]

Mona,

What a great piece of writing on such a complex topic. This is a subject I follow due to relatives on both sides of my family getting sheared off by Alzheimers. The most recent being a 59 year old cousin.

It seems every week there is another announcement of a breakthrough, I believe the latest is mega-dosing Vitamin B. I'm unfortunately not highly optimistic as every report seems to have us chasing our tails in another direction: Mediterranean diet, olive oil, crosswords, cholesterol medicine, exercise, blah blah blah. My Uncle Jim did all of that, a brilliant athlete, educator, botanist, multi-lingual, ate fish regularly and before my eyes became a little boy. None of it worked.

I guess a small pearl of hope can be found in the aging boomers who - like with every other major event of their generation - will clamor for what they want and need. Alzheimer's is and will be a frightening specter for all of us.

My local physicians have recommended I take a daily baby aspirin (81 mg) to prevent what some see as the true culprit: Mini-strokes. I'm also indulging in Omega 3.

Keep up the great work Mona. I'm very sorry to learn of your Dad and am grateful that you are helping spread awareness.

Best,

August

[Marty]

Yes, thank you for a balanced look at the field of Alzheimer's research. Given the desperation for a cure, the urge to jump to conclusions or to find a shortcut by signing up for iffy drug trials is a setup for high failure rates. But what can we do besides take huge risks at this point?

[richard taylor]

Hello, you are insightful, brilliant, a wonderful writer, and a shining light of truth for so many of us. Thank you, thank you, thank you.
Richard