Empowering people with Alzheimer's disease and their caregivers -- there is still much work to be done

My wife was diagnosed with early onset Alzheimer’s Disease (AD) at the age of 63. My wife was repeatedly asking me the same questions over and over, getting lost while driving, experiencing aphasia and agnosia, unable to follow cooking recipes, etc. When the AD diagnosis was issued, it was a tremendous shock to my wife, who was in complete denial. For me, however, the diagnosis was a sad confirmation of what I had long been expecting. 

When we left the doctor’s office after that AD diagnosis, we were given no written materials indicating what to expect in the near or long term. There was no information about websites we could consult or books we could read to learn more about AD. There was no mention or discussion of support groups. We had to research all of that on our own. I have since learned from members of my real and online support groups that our experience is all too common … doctors do not readily provide helpful information to AD patients or caregivers, nor do they make patients and caregivers aware of support groups.

Such a lack of communication from doctors is inexcusable. Doctors should provide written handouts for patients and caregivers upon diagnosis … or at a follow-up visit shortly thereafter … so patients and caregivers can be more aware of this disease and have informed conversations with their doctors. I can understand if doctor wants to wait a few weeks after issuing an AD diagnosis before providing such a handout. Caregivers and patients may know very little about AD when they hear this diagnosis, and they may react with surprise, denial, fear, helplessness, sadness, anger, and a variety of other emotions. Even if aware of declining memory, cognitive, or executive functioning skills, the last thing patients and caregivers want to hear is a diagnosis of Alzheimer’s. A period of several weeks before further discussion about the disease, to allow patients and caregivers time to fully process that diagnosis, may be warranted. But patients and caregivers need to be fully informed about what lies ahead for them, if not immediately than very soon after the diagnosis. Providing such AD information and resources can empower patients and caregivers.  

The handout should review symptoms, stages of the disease, medication and treatments, and refer patients and caregivers to helpful support groups, internet sites, and books for additional information. It is in the first few weeks and months after initial diagnosis when patients and caregivers have the most questions, fears and anxieties that can be somewhat resolved with access to more information. This is also the time period when AD patients and caregivers have the most need to locate support groups to help them deal with what is currently happening, as well as to prepare themselves for the future. If there are no local support groups, then doctors should speak with leaders of their local or state branches of the Alzheimer’s Association and/or the Alzheimer’s Foundation to ask them to start such groups. Doctors need to recognize that support groups can be a major component of the treatment protocol after an AD diagnosis. Meeting regularly in support groups with others in similar circumstances can be very empowering and comforting to both patient and caregiver. Even though each AD patient and caregiver may be in somewhat different boats, all are paddling in the same lake and can learn so much from others in similar situations.

The bottom line is that doctors must do a better job of communicating with their AD patients and caregivers. The goal should be to avoid an often heard remark in support groups: “l wish someone had told me about that when my spouse was still in the earliest stages so I could have prepared myself better.” Should AD patients and caregivers not wish to avail themselves of these information resources, choosing to rely solely upon their doctors for information, fine … that is their choice. But information is empowering … and for many patients and caregivers, having ready access to more information between doctor visits is extremely helpful and reassuring.

 

Originally titled, "Empowering Alzheimer's Patients and Caregivers." Published in Dementia, April, 2013, Vol. 12, No. 2, pp. 155-156. Access at: http://dem.sagepub.com/content/12/2/155.full.pdf+html

 

Traveling a difficult road with Alzheimer's

My wife, Clare, was diagnosed with coronary artery disease in 1993 at the age of 47 and since that time has been on a daily cocktail of heavy duty heart meds that, most of the time, have enabled her to maintain a decent quality of life.  Clare’s father died at 57, her mother at 72, and her brother at 65 … all due to heart disease … so we did not take Clare’s diagnosis lightly.  When Clare had a particularly “bad heart year” in 2000, we decided not to press our luck and retired earlier than planned so we could travel before Clare’s health deteriorated further.  

And travel we did!  We flew across the Arctic Circle to walk on glaciers.  We strolled across the Great Wall of China and through Red Square in Moscow.  We explored Machu Picchu in Peru and meandered among the giant tortoises in the Galapagos.  The list went on and on.  But on one of our marvelous trips, I noticed something terribly wrong with Clare … and it wasn’t her heart.

Discussions with fellow travelers are usually about family and trips previously taken or planned for the future.  During discussions on one of these trips, I noticed Clare forgetting personal information … and I don’t mean common memory lapses often referred to as “senior moments.”  For example, she’d talk about our two grandchildren … forgetting that we had four grandchildren.  Or she’d talk about how much we enjoyed a previous trip to Paris … but we had never been to Paris.  Or she’d say how much she wanted to take a trip to Russia … a trip we had already taken.  And it wasn’t just memory.  Clare always had an excellent sense of direction, but she was now getting us lost in cities when we were on our own.  She was misplacing objects, losing objects, and just seemed confused at times.

After that trip, I went online to check out several responsible websites and was starting to became convinced that Clare was showing some possible early signs of Alzheimer’s Disease (AD), despite her young age.  I expressed my concerns to Clare and we made appointments to see both our regular doctor and a neurologist.  I started keeping logs of Clare’s worrisome behavioral symptoms to show to doctors, but symptoms I was observing at home were never present during doctor visits!  Brain scans and blood work appeared normal, and Clare was acing brief cognitive screening tests.  For the next 3 years, Clare he was treated for stress, anxiety, or depression … not Alzheimer’s.  It was now 2006 and Clare had not yet turned 60. 

It was only after Clare’s test scores dropped significantly that she was given more comprehensive testing, which eventually led to the diagnosis of “early” or “young” onset AD, a month after Clare turned 63.  My first step was to seek out a support group for Clare to join, so I contacted The Alzheimer’s Association.  The Suffolk branch sponsored more than 30 caregiver groups … but not one was for people with AD.  I then contacted the Alzheimer’s Foundation of America, which led me to LIAF, the Long Island Alzheimer’s Foundation in Port Washington.  They had a support group that met weekly for those diagnosed with early to moderate stage AD, and after a brief evaluation Clare was accepted into their program.  They also had a support group for spouse caregivers meeting simultaneously in a nearby room.  At Clare’s first meeting, I brought a copy of Newsday with me, fully expecting to read it in the LIAF lobby while Clare was in her meeting.  However, Clare insisted that I give the spouse caregiver group “a try.”  Feeling my shoulders were broad enough to handle anything that might come my way, I said no.  But Clare was insistent. “Please try it just this one time, just for me.”  How could I say no?

It’s now more than three years later and I don’t know how I could have survived without my weekly support group.  My LIAF support group helped teach me ways to deal with my daily stress, along with providing many practical tips and strategies that I could never have learned anywhere else.  We support each other emotionally in a non-judgmental atmosphere.  My participation in an online support group solely for spouse caregivers at www.thealzheimerspouse.com also helps alleviate stress and provide information.  Our spouses may not all share identical symptoms, but we all “get it” and understand what life is like for each other as an AD spouse.

What is my life like as an AD spouse caregiver?  It’s a life of daily stress.  It’s also a constant learning curve, trying to remain patient when Clare asks me the same question over and over, or where to find this or that, or for help finding something she has misplaced.  It’s trying to remain patient when she can’t follow a simple one-step direction, or when she starts telling me something but stops in mid-sentence, having forgotten what she wanted to say.  It’s trying to enjoy watching Clare’s favorite TV shows with her over and over again each afternoon and evening.  When the daily 24/7 stress became too overwhelming a few months ago, I placed Clare in day care programs to give myself 14 hours of respite time each week.

AD is much more than memory loss and inability to see things right in front of you.  Many with AD undergo severe personality changes resulting in angry ranting and socially inappropriate behavior.  Fortunately, Clare has retained her sweet personality and disposition so, for example, we can still eat out in restaurants.  Of course, before we reach our car in the parking lot she will have forgotten what she ate.  But, “in the moment” she will have enjoyed herself and have had a good time.

I could share other AD symptoms, but it’s not pretty.  There are concerns about falling and wandering.  There are personal hygiene issues.  In later stages, Alzheimer’s leads to incontinence along with loss of all other cognitive and motor functions.  The “average” person with AD dies within 8 years of diagnosis, although the range can be as short as one or as long as 20 years. I have already been to 8 funerals in 3 years to support members of my support group.

November is Alzheimer’s Awareness Month.  Alzheimer’s disease is now the 6^th leading cause of death in this country and the only one among the top ten killers for which there is no effective means of prevention, treatment, or cure.  It is also the fastest growing cause of death among the top ten killers, with an estimated 5.4 million people already suffering from Alzheimer’s, about 250,000 of them under the age of 65.  It is estimated that 1 in 8 people over 65 will eventually be diagnosed with AD; for those above the age of 85, the rate increases to 1 of every 2.  So, as baby boomers turn 65 at the rate of more than 10,000 each day, and as our population lives longer, the estimate is that more than 15 million people will be suffering from Alzheimer’s in 3 or 4 more decades. 

Despite concern about rising national debt and the need to reduce government spending, we need to increase funding for Alzheimer’s research into effective ways to prevent, treat and cure this disease … and to increase support to  organizations providing programs that are helping people with Alzheimer’s and their caregivers.  For 2012, costs to Medicare and Medicaid for caring for those with Alzheimer’s are expected to total $140 billion.  Costs are projected to increase to more than $1.1 trillion by 2050 if nothing changes.

 

Published in a much reduced version in Newsday's op ed "Expressway" column under two titles ... in print as "Our Hard Road with Alzheimer's," and online as "Traveling a difficult road with Alzheimer's," November 24, 2012, p. A21.  Access at:
http.//newsday.com/oped/expressway-traveling-a-difficult-road-with-Alzheimer-s-1.4255036

 

 

 

 

Listen More Carefully to Alzheimer's Caregivers

In 2009, my wife was diagnosed with Alzheimer’s Disease (AD), at the age of 63, but only after two years of misdiagnosis. Despite my observations of obvious AD symptoms clearly noted in logs I presented at each doctor’s visit, my logs were routinely ignored. Perhaps this was because my wife did not exhibiting similar symptoms in the doctor’s office … or perhaps because of repeatedly high scores on the MMSE.

I eventually discovered that it is not unusual for AD caregivers to report that their loved ones were initially misdiagnosed and treated for stress, anxiety, or depression. Maybe that is because these emotional issues can often manifest symptoms of confusion and memory loss similar to those associated with Alzheimer’s, and it is difficult for doctors to differentiate. Maybe it’s because doctors know that they cannot effectively treat AD, but they can often successfully treat symptoms caused by emotional issues. Regardless of the reason, many caregivers note that their doctors simply did not take time to listen carefully to symptoms they were reporting about their spouses. Caregivers also often note how their spouses continue to score highly on the MMSE. 

Fast forwarding to the present, the MMSE continues to show itself as an unreliable diagnostic test for my wife. As a participant in a longitudinal research study at an Alzheimer’s Disease Research Center, she undergoes annual neuropsychological testing each year. With few exceptions, all of her scores on various tests and subtests to assess executive function of the brain, memory, language, attention, and visual spatial abilities have declined significantly during these past three years. Nearly a dozen of her subtest scores are now at the 0-1%level. And yet, on the MMSE, my wife scored 26 in 2009 and 2010, and 25 in 2011. 

Most doctors are time-pressured and understandably want to screen for AD with a test that can be administered and scored quickly. However, quick screening tests such as the MMSE are simply not always effective. As noted by Dr. Peter V. Rabins, Director of the Division of Geriatric Psychiatry and Neuropsychiatry at Johns Hopkins School of Medicine, “The MMSE cannot be used to diagnose dementia.” Whereas the MMSE can be used to screen for cognition disorders, its limitations include “poor ability to detect minor changes in cognition – that is, mild dementia – and its lack of testing for certain cognitive functions such as executive function.”  ^1. 

Several journal articles in recent years have questioned the continued use of the MMSE for AD screening. One recent comprehensive review notes how the MMSE “may hide too much about what the person can or cannot do. The study’s author states firmly, “Above all, a diagnosis of dementia should not rely chiefly on a MMSE total score. The focus should be on the individual, their history, their strengths, and weaknesses.” In other words, the doctor should strongly consider a caregiver’s observations because only the caregiver can provide that history about strengths and weaknesses.  ^2.  

Researchers at Washington University School of Medicine in St. Louis administered a two minute questionnaire (AD8) to friends and family members of patients being screened for dementia. When comparing results of the AD8 to results of the MMSE, the AD8 was “superior to conventional testing in its ability to detect early signs of early dementia. It (the AD8) can’t tell us whether the dementia is caused by Alzheimer’s or other disorders, but it lets us know when there’s a need for more extensive evaluations to answer that question.”  ^3.

Dr. Ronald DeVere, a neurologist who directs an Alzheimer’s Disease and Memory Disorder Clinic in Austin, Texas, noted to me in an email that all doctors should follow one “rule of thumb” when trying to diagnose cognitive disorders: “If a person comes to a doctor with memory or other cognitive complaints that are verified by caregivers or close friends, a complete battery of neuropsychological testing should be conducted, especially if a person’s score is normal or mildly impaired on cognitive testing. However, observations by a caregiver or close friend should always take precedence over office testing such as the MMSE.” (Quoted with permission.)

So what is my advice to time-pressured doctors when a patient presents with no discernible symptoms during office visits … or when a patient scores very well on a brief screening test such as the MMSE … but when a caregiver tells you that your patient is experiencing serious cognitive or memory problems? My advice is very simple: Listen more carefully to the caregiver, and consider referring your patient for a complete neuropsychological evaluation.

1. Rabins, PV. What is the MMSE? Johns Hopkins Health Alert. December 27, 2010.

2. Nieuwenhuis-Mark, RE. The Death Knoll for the MMSE: Has It Outlived Its Purpose? Journal of International Psychiatry and Neurology. 2010; 23, 3: 151-157.

3. Galvin, JE, Fagan, AM, Holtzman, DM, et. al. Relationship of Dementia Screening Tests With Biomarkers of Alzheimer’s Disease. Brain. 2010; 133: 3290-3300.


Author’s note: I did have an article published on a similar theme. “Forget the mental status test – and learn to listen,” was published as a Letter to the Editor in the Journal of Family Practice. (Vol. 60, No. 5 May 2011, p. 250.) However this submission is substantially different.


Published as a Letter to the Editor in Journal of the American Geriatrics Society, October, 2012, Vol. 60, No. 10, p. 2000. Access at: http.//onlinelibrary.wiley.com/doi/10.1111/j.1532-5415.2012.04181.x/full 

 

 

 

 

 

 

 

Forget the mental test -- and learn to listen.

My wife, Clare, was diagnosed at age 63 with Alzheimer’s Disease (AD).  Unfortunately, her AD went misdiagnosed for several years despite my repeated attempts both in person and via written logs to convince our doctors ... a primary care physician, neurologist, and clinical psychologist ... that she was experiencing dementia.  Doctors administered the Mini-Mental State Examination, commonly referred to as the MMSE, several times along with other cognitive tests, but Clare initially scored very well on all of her tests.  A brain MRI showed no definitive signs of AD and she was diagnosed and treated first for stress, then anxiety, and then for depression.  However, Clare’s worrisome and now worsening behaviors were among those listed as early AD signs on several reputable websites.  Medications prescribed to treat her diagnosis weren’t working. 

Growing increasing frustrated when told to “stay the course” by the neurologist when I was observing continuing declines firsthand, I convinced Clare to get a second opinion ... this time with a geriatric psychiatrist affiliated with a major medical center who, by the way, requested copies of all of my logs prior to our first visit.  After a lengthy interview, a review of previous tests, discussion of my logs, and comprehensive new cognitive, physical, and neurological testing at this doctor’s AD center, Clare was finally diagnosed with early onset Alzheimer’s. 

I have since discovered, sadly, that many caregivers across the country can tell a very similar story ... reporting observations of AD symptoms that were misdiagnosed by their doctors and initial misdiagnoses based largely upon the MMSE or some other brief cognitive testing instrument.

Most GPs, time pressured on the best of days, are likely to use AD screening tests that can be administered quickly ... and therein lies the problem.  Current popular screening tests for dementia are not particularly effective.  New quick screening tests coming on the market with claims that they can be used effectively to diagnose dementia will most likely be just as ineffective as the MMSE, a cognitive screening test used for more than thirty years.  However, as noted by Dr. Peter V. Rabins, Director of Geriatric Psychiatry and Neuropsychiatry at Johns Hopkins School of Medicine, whereas the MMSE can be sued to screen for cognition disorders, “The MMSE cannot be used to diagnose dementia.”  Dr. Rabins further notes that, “It’s (the MMSE) limitations include its poor ability to detect minor changes in cognition – that is mild dementia – and its lack of testing for certain cognitive functions such as executive function.”  (Johns Hopkins Health Alerts: Memory ... “What is the MMSE?”  December, 2010.)

Researchers at Washington University/St. Louis administered a two minute questionnaire (AD8) to friends or family members (termed “informants”) of patients being screened for dementia and discovered that “informants who have regular exposure to the individual provide the most accurate assessments.”  The study reported that, when comparing the AD8 results to those of the MMSE, the AD8 was found to be “superior to conventional testing in its ability to detect signs of early dementia.”  It can’t tell us whether the dementia is caused by Alzheimer’s or other disorders, but it lets us know when there is a need for more extensive evaluations to answer that question.”  (Galvin JE, Fagan AM, Holtzman DM, et. al, “Relationships of dementia screening tests with biomarkers of Alzheimer’s disease.”  Brain, 2010: 133:3290-3300.)

This study also concluded that the MMSE is not a reliable indicator of AD symptoms because such tests “only give a ‘brief’ snapshot’ of a person’s cognitive abilities at one time ... when they are being tested.”  Any caregiver knows that a person with AD can appear to be fine one moment, but definitely not fine the next moment ... just as my wife scored 29 out of a possible 30 on the MMSE in the doctor’s office on the same day that she forgot how to turn on her computer, and could not locate where we keep milk in our kitchen.

Dr. Ronald Devere, a neurologist who directs an Alzheimer’s Disease and Memory Disorders Center in Austin, Texas noted that there is one major ‘rule of thumb’ that all doctors would follow when trying to diagnose cognitive disorders:  “If a person comes to a doctor with a memory or other cognitive complaints that are verified by caregivers or close friends, a complete battery or neuropsychological testing should be conducted, especially if that person’s score is in normal or mildly cognitively impaired on cognitive testing.  A caregiver or close friend’s observations should always take precedence over office testing of memory and cognitive abilities such as the MMSE.”  (Quoted with permission from email correspondence with Dr. Devere.) 

So, please, doctors ... if caregivers share worrisome symptoms of possible dementia with you, listen to them carefully.  They just may do a better job of presenting you with patients’ symptoms of dementia than any cognitive screening test will reveal.

Originally titled, "Doctors ... Please Listen to Alzheimer's Caregivers."  Published in The Journal of Family Practice,  May, 2011, Vol. 60, No. 05, p. 250.  Access at:

http://www.jfponline.com/index.php?id=21643&cHash=071010&tx_ttnews(tt_news)=175994

 

Alzheimer's and Baby Boomers

My wife has Alzheimer’s Disease (AD).  Only 63 when diagnosed last year, my wife is technically classified as having EOAD ... Early Onset Alzheimer’s Disease ... a tag given to those who are diagnosed before the age of 65.  According to the Alzheimer’s Association, 5.3 million people in this country currently have AD and 200,000 are younger the age of 65.  What is really scary is that with 10,000 baby boomers turning 65 each day starting next year, and with no cure currently in sight, some health experts have estimated that we may have as many as 16 million people suffering from AD by 2050.  The medical profession, and helping organizations such as the Alzheimer’s Association, must change some current practices to deal more effectively with the growing number of ‘‘boomer patients’’ they are soon going to see.

The Alzheimer’s Association currently provides many day care activity programs for those with moderate to severe stages of AD, and that is a good thing.  However, there is virtually no support available to those with EOAD or for those in the earliest stages of AD.  As but one example, here on Long Island, NY, where the Alzheimer’s Association estimates that there are 55,000 people with AD, they currently offer 35 groups for spouses and/or caregivers and many day care program opportunities for those with AD.  However, they provide no support groups for people with AD.  Not one.  This is pretty much true for the entire country ... many activity groups but few support groups for those with AD.  One explanation given to me is that people with EOAD and early stage AD often do not want to talk about their feelings with others ... they find it too depressing. And that may well be true.  However, what about those in early stages or with EOAD who do want to talk with others in similar circumstances?  Shouldn’t there be at least a few support groups led by trained social workers available to them?

Fortunately, here on Long Island we also have LIAF, the Long Island Alzheimer’s Foundation, which does have groups for those in early to moderate stages of AD and a separate group for their spouses/caregivers.  My wife and I attend these weekly meetings and find them very helpful.  But not even LIAF has a group solely for those with EOAD or for spouses of those with EOAD.

As is true for each successive generation, we boomers are quite different from our parents in many ways.  Having grown up with computers and the internet, many of us are quite knowledgeable about AD through online sources of information, and some of us, at least, would like to meet with others in similar situations.  Unfortunately, presently throughout much of this country, there are no such opportunities. This must change. 

The medical profession must also change. As is true for many eventually diagnosed with AD, my wife began exhibiting AD symptoms for several years before the official diagnosis was made.  I told doctors about her worsening symptoms at each visit, but my comments were routinely ignored.  I noted how she kept asking me the same question over and over without any recollection of having just asked me that same question minutes earlier.  I mentioned her getting lost while driving in our community, her disorientation, her aphasia.  I said that my wife was forgetting how to do things she used to do routinely, and how she was regularly misplacing and losing objects at home and when we traveled.  However, her initial cognitive testing results were good, MRIs and blood work did not show any problems, and doctors suggested that the symptoms I described were probably due to stress, and then later to anxiety.  When cognitive testing results worsened later on, the diagnosis became severe cognitive impairment due to depression.  I continued to note that her symptoms were not related to stress or depression according to any website I had consulted, but my comments were routinely ignored.  After continued worsening of her symptoms, we eventually went for a second opinion at a hospital-affiliated Alzheimer’s Disease Research Center where the diagnosis was probable AD ... and definitely not stress, anxiety, or depression.

I’ll be the first to admit that some of the early signs of AD are identical to signs of stress and/or depression.  A doctor who diagnoses stress or depression as the cause of memory disorders can offer hope to patients.  Anti-depressant medications and stress-reduction techniques may often lead to improvement. However, a doctor who diagnoses probable AD gives patients a death sentence because AD is a terminal disease with no cure, and the average person diagnosed with AD lives for only 8 years.  I wonder whether some neurologists and cognitive psychologists think, why not treat the problem as if it were stress or depression since we may be able to help the patient improve; if I diagnose AD, then there is no hope for improvement.

Many AD spouses I have contacted across the country on websites devoted specifically to spouses of those with AD have, sadly, reported identical experiences with their doctors.  So many reported that their observations were also ignored that I must conclude that this may be common practice ... doctors basing their diagnosis and treatment recommendations solely on objective testing results after relatively brief visits with patients, largely disregarding anecdotal observations of spouses and caregivers.  This needs to change!  Empirical data from cognitive testing and medical procedures are very important but so are anecdotal and observational data from spouses and caregivers who observe noticeable changes in the patient’s daily life.  Empowered by information readily available on the internet, baby boomers may have valuable insights to offer doctors about their loved one’s symptoms that may not be apparent in brief office visits or demonstrated on objective tests of memory.

Alzheimer’s Disease takes a terrible toll on those suffering from the disease and on their spouses/caregivers.  Doctors must listen more carefully to symptoms of patients reported by their spouses/caregivers so those with probable AD are diagnosed early and can begin taking medications that may help slow the inevitable degenerative progression.  Doctors as well as local/ national AD organizations should also be working together to provide patients with ready access to support groups as patients progress though the stages of this fatal disease ... and helping to better meet the needs of those who are diagnosed at a young age and/or are in the very early stages of the disease.

Published in American Journal of Alzheimer's Disease & Other Dementias, September, 2010, Vol. 25, No. 6, pp.477-478.  Access at:
http://aja.sagepu.com/content/26/2/93.full.pdf+html

Ten Things You Should Do When the Diagnosis is Alzheimer's

Alzheimer's Disease (AD) is, admittedly, sometimes tricky to diagnose.  Since a positive diagnosis can only be made post mortem upon examination of the ‘plaques and tangles‘ and deterioration/shrinkage of the brain, diagnoses of AD are often issued with the caveat, ‘probable’ AD.  However, for patients diagnosed with ‘probable’ AD and their caregiver spouses, such diagnoses are not probable ... they are very real. And those diagnoses are rising in record numbers as baby boomers age.  An estimated 5.3 million people in the U.S. already have AD, with those numbers expected to double in the next 20 years.  This year alone, global costs of dementia are expected to exceed 1% of world GDP for a staggering total of $601 billion dollars, with more than half of that number solely due to Alzheimer's, the most common form of dementia.

Primary care physicians, internists, neurologists, psychologists, and psychiatrists are all doctors who may make probable AD diagnoses for their patients.  I am the spouse/caregiver of an AD patient.  My wife wasn't diagnosed with AD until age 63,

but she had been demonstrating many AD symptoms by age 61. For two years, however, those symptoms had been incorrectly attributed to stress, anxiety, or depression.  It is obvious to spouse/caregivers in my weekly and online support groups that doctors can and should be doing a better job of diagnosing AD sooner ... and a much better job of providing their patients and spouses with a lot more information at the time of diagnosis.  Here's a "Top Ten" list of things that I and most caregivers I know wish doctors would do when issuing a diagnosis of AD.

1.  Do not use only objective data to try to make a correct diagnosis.

Members of my support group literally laugh out loud when someone brings up the MMSE (Mini-Mental State Examination), perhaps the most widely used measure to help diagnose Alzheimer's.  Doctors should understand that this test, and others like it, measure only selective elements of memory and cognition.  Some AD patients will do relatively well on these tests on any given day even when that patient's ability to function in the ‘real world‘ is continuing to decline.  Answers to questions such as what day of the week it is, what is today's date, etc. may simply be dependent upon whether or not the patient watched the TV news that morning or looked at that day's newspaper in the office.  Patients may be able to recall a series of random numbers in sequence on a particularly good day yet be unable to recall their own phone number or date of birth.  On a ‘good day’ a patient may be able to spell the word ‘world’ backwards yet be aphasic during conversations at home.  Objective test results will vary day to day and should be, at best, only one very limited measure used to reach a proper diagnosis.

2.  Rely more upon the observations of spouses or significant others.

If you live with someone 24/7, you know  when something is wrong with your wife or husband.  More often than not, it is a worried spouse or significant other who first brings AD concerns to the doctor's attention.  More often than not, it is the worried spouse insisting upon a thorough examination of their husband or wife due to fears of probable AD.  Doctors should not dismiss these concerns lightly.  Many spouses/significant others also keep logs or journals to document their concerns for doctors, but if the doctors do not see similar symptoms themselves during their brief office visits, these concerns are often ignored.  It is the rare AD patient whose spouse/significant other hasn't seen multiple signs of AD for a long period of time prior to any official medical diagnosis.  Doctors should ask more questions of spouses/significant others and listen to what they have to say.

3.  If not an expert in AD, refer your patient to a doctor who is an expert.

Often it is the family primary care physician or internist who is the first to suspect a change in their patient's condition or the first to be approached by the patient or spouse with concerns.  If in unfamiliar territory, the PCP or internist should refer patients to a neurologist or geriatric psychiatrist with experience diagnosing and treating AD patients.  In some geographical locations, a referral to a nearby Memory Disorder Clinic or Alzheimer's Disease Research Center would be worthwhile.  Too often, it seems, a PCP/internist may correctly diagnose the patient but then give incorrect or incomplete information due to lack of awareness.  Or, worse, a PCP/internist may suggest that a patient has MCI, Mild Cognitive Impairment, thereby relieving the concerns of the patient and/or caregiver who had worried about a probable AD diagnosis without then continuing to explain that, for many people, MCI is simply the first stage of Alzheimer's ... and, for many others, MCI will eventually lead to AD.

4.  Understand that no two patients with AD react exactly the same.

We have an expression in my support groups:  “If you know one person with Alzheimer's, then you know one person with Alzheimer‘s."  Each caregiver can provide a different description of exactly what is happening to their spouse.  Are there similarities?   Of course ... there are many.  But many does not equate to all.  And, just as important, patients with AD do not all decline in the same manner.  Some stabilize at certain stages for long periods of time before conditions worsen.  Some suffer slow incremental declines whereby symptoms continually worsen gradually over time.  Others follow what I refer to as a ‘cliff fall/plateau' pattern.  They seem to ‘fall off a cliff‘ every few months with a significant worsening of one or more symptoms, then reach a plateau where the decline stops for several months, and then seem to fall off another cliff.  And still others seem to manifest combinations of patterns of decline at different times.  Doctors should explain these different patterns to their recently diagnosed patients, and their spouses, so they may be better prepared for what may come their way.

5.  Explain that we currently do not know how to effectively treat AD.

Although some may disagree and suggest that being too honest with a diagnosis will send some caregivers and/or patients into increased denial and/or result in feelings of total despair, I firmly believe that patients and caregivers are entitled to know just what they are dealing with ... despite the lack of an optimistic future.  Be honest with patients about this disease.  Explain that AD is a degenerative, fatal disease for which there is no cure.  Explain that as a terminal disease, the patient will not get better over time and symptoms will continue to worsen regardless of any treatment they undertake. Also explain that all current research indicates that remaining mentally active, improving one's diet, engaging in daily physical exercise, and a whole host of other activities may improve the quality of life and even reduce chances of heart or vascular disease ... but none of these interventions will stop the worsening progression of AD.  Explain that for some patients, medication will not do anything to help, but for some they may slow down the rate of cognitive decline for 6 months, a year, maybe two years at best.  Explain, however, that after that period of time, even if they had been effective in slowing the progress of this disease to that point, they will no longer be effective and the patient will continue to suffer cognitive decline whether still taking those medications or not.  I have started referring to all medications designed for Ad patients as having the same label ... Hope.  Doctors continue to prescribe them, and patients continue to take them, long after they can possibly still be effective.  Why?  Because doctors and patients hope that, in their individual case, the medication will work despite what the research shows.  Even when the cost of that medication results in financial hardship, many patients will continue taking ineffective medication because they hope that is better than taking nothing.

6.  Inform your patients about clinical trials.

If your patient lives in an area where there are clinical trials underway testing the efficacy of potential new treatments for AD, inform your patients and their spouses of how they can learn more about those trials.  If you are knowledgeable about one or more trials, feel free to explain why you think a particular trial might be worth considering.  But at the very least, please inform your patients and their spouses about the existence of such clinical trials.

7.  When the AD diagnosis is made, tell your patients not to drive anymore.
In a handful of states, physicians are required to report the names of patients diagnosed with probable AD to the Department of Motor Vehicles.  The DMV is then responsible for re-assessing that person's ability to continue driving.  Currently, the vast majority of patients diagnosed with AD continue to drive.  I think that a diagnosis of AD should mandate removal of a driver's license within a reasonable period of time, 3-6 months at most.  I disagree with the Alzheimer's Association, the American Academy of Neurology, and other organizations that feel that the decision of whether or not to continue driving should be left to the patient.  Wrong!   Why do I say this? Simply because we know that anyone diagnosed with AD already has, or will have, impaired judgment and reasoning skills that affect safe driving.  Multiple decisions and processing skills are in play each time someone gets behind the wheel of a weapon of limited destruction, which is what an automobile really is. Impaired drivers may still easily pass their driving test on any given day.  However, doctors know that at some point these same AD-impaired drivers who are passing these tests will suffer declining skills that will prevent their ability to drive safely.  It is not a question of if this will happen ... the only question is when this will happen.

Why must we wait for a person with AD to damage his/her automobile or that of another, cause property damage to an innocent person, injure him/ herself or others in an accident, or possibly cause the death of others, or possibly get lost while driving when all of these occurrences are easily preventable before they happen?  Without a doubt, when to take away the keys from someone recently diagnosed with Alzheimer's is often the single most difficult decision to be made.  This signals an awareness of disease and a loss of independence; it may have severe implications on that person's ability to continue working or continued enjoyment of retirement.  And that is why I suggest a period of 3-6 months be provided for that recently diagnosed patient to come to grips with his/her new reality and time to make plans to deal with the situation  perhaps arranging for someone else to drive that person to/from work or making some other alternate plans for transportation.  If we know that a person diagnosed with AD is going to decline more over time, why not admit the obvious?  And the obvious is that someone diagnosed with Alzheimer's simply should not be behind the wheel of a moving vehicle. In my support groups, we often suggest to ‘newbies’ who are first dealing with this new reality, “Would you feel comfortable with your grandchildren in the car while your AD spouse is driving?"

Too often one hears in support groups how caregivers implore their AD spouses to stop driving because they have observed firsthand that their spouse is no longer driving safely.  However, their AD spouse will often respond, “But the doctor never said I had to stop driving."  Please, doctors, take this very emotional and combative issue out of the hands of spouses.  Take responsibility for telling your AD patients that they must stop driving!

8.  Upon diagnosis, refer your patient and spouse to local support groups.

Sadly, support groups are not uniformly provided throughout this country.  Some cities and some states have local and state associations that provide a multitude of support groups for both the patients, their spouse/caregivers, and for non-spouse caregivers, often through branches of the Alzheimer's Association, the Alzheimer's Foundation, or hospitals.   If there are such groups near where your patient and spouse live, please refer them to those groups or organizations.  And if not, please consider speaking with leaders of your state's associations to have such groups formed.  Also, become aware of the excellent online support groups available that you can recommend. Spouses can go to such places as www.thealzheimerspouse.com for information and chat rooms, or to sites such as www.mayoclinic.com for a wealth of AD information and a blog site for reading and posting comments.

9.  Upon diagnosis, refer your patient’s spouse/caregiver to print resources.

Eventually, over time, all spouses learn about some good books that they should read to gain insights into this horrible disease.  Good books, like a good support group, will inform and empower spouses/caregivers.  Too often, spouses/caregivers say, “I wish someone had told me about that sooner when my spouse was still in the early stages so I could have prepared myself for the " ____________.”  (One can fill in the blank with so many choices ... difficulties when traveling, incontinence, wandering, raging, etc.)  If you are unfamiliar with good books to recommend, then at the very least prepare a one or two page informational handout to give to your patients at the time of diagnosis.  This handout can also list several websites such as those noted above, and phone numbers of local organizations ... branch offices of the Alzheimer's Association and the Alzheimer's Foundation, for example ... that can provide patients/caregivers with additional information about the disease, support groups if available, and suggested books to read.

10. Tell your patient and spouse/caregiver what they need to know sooner.

If there is one message that must get through to doctors above all others, it is this:  It is extremely important for the doctor to tell both the patient and the spouse/caregiver not what they may want to hear, but what they need to know.  Doctors must be brutally honest when discussing the progression of likely AD symptoms so patients and their spouses/caregivers will know what to expect.  Providing false hope that medications or life style changes or anything else will prevent certain death is disingenuous.  Doctors must present the scenario of symptoms and behaviors that most, if not all, AD patients will experience as their disease progresses through mild, moderate, and severe stages.  Doctors should explain that whereas the progress of AD after diagnosis can be as fast as four years and as long as twenty years, the average person with AD only lives for eight to ten years after diagnosis.  Doctors should explain how important it is for spouses to discuss end-of-life plans now, while the AD patient is still generally able to process rational thought.  Doctors should suggest that the patient and spouse seek out an eldercare attorney who can help them with decisions that must be made with respect to having a current will, living will and health care proxy, and durable power of attorney.  Doctors should suggest that their patient and spouse begin having discussions on how/where/when to provide assistance as the  disease worsens.  Should care be provided at home with hourly or full time health care aides?  In an assisted living facility?  In a nursing home?  An eldercare attorney will also discuss financial ramifications of such choices and suggest other options, but the doctor should get the ball rolling on end-of-life decisions and care because traumatized patients and spouses may not understand that this is something that needs their attention sooner rather than later.

Some doctors, I'm sure, will suggest that to hold these  discussions as soon as the patient is diagnosed is TMI ... Too Much Information.  And I agree.  The diagnosis may not be well received by either the patient and/or the spouse, resulting in reactions ranging from anger and shock to disbelief and denial.  However, I am suggesting that this information be provided in a follow-up visit no more than 2-4 weeks after diagnosis, once the patient and spouse/caregiver have had a chance to absorb hearing the words, Alzheimer’s Disease, and the bleak prognosis.  Waiting longer is a disservice to both patient and spouse/caregiver because information on stages of this disease, medications, clinical trials, driving, support groups, helpful books and resources are most helpful if provided sooner rather than later.

Alzheimer's is a horrible journey not just for the patient ... it's also horrible for the spouse/caregiver.  Doctors can make the journey so much easier for patients and spouses if they would heed This ‘Top Ten‘ list. Do you want to leave your patients and their caregivers with some hope when they leave your office after such a horrible diagnosis?  Of course you do.  Do you want to maintain a relationship with your patients/caregivers after diagnosis?  Of course you do.  However, just like a good marriage must be based on trust, so too must a doctor/patient/caregiver relationship be based upon trust.  If you feel my ‘brutally honest approach’ will backfire with respect to your patient and the patient's spouse/caregiver in their efforts to seek out the help they need to get through this disease, then perhaps you may need to cover this information during the course of several visits over a period of several weeks or months.  But, please, do cover it all because to do less is not just disingenuous.  To do less is to give your patients and their spouses/ caregivers false hope.  And that, in my opinion, is worse than no hope at all.  So, doctors ... please ... act upon some of these suggestions for dealing with your AD patients and their spouses.  Thank you.

 

Originally submitted titled, "An Open Letter to Doctors, Ten Things ..."  Published in American Journal of Alzheimer’s Disease & Other Dementias, March, 2011, Vol. 26, No. 2, pp. 93-96.  Access at:  http://aja.sagepub.com/content/26/2/93.full.pdf+html