Updated: Mar 10
Editor’s note: This blog post is an open letter to the medical community from UsAgainstAlzheimer’s board member Greg O’Brien, who suffers from and lives daily with Alzheimer’s, about how doctors can improve the diagnosis of Alzheimer’s and other dementias; care in the early stages of the disease; and the critical importance of a candid dialogue about brain health.
Dear Primary Care and Family Doctors,
As T.S. Eliot has said: “We shall not cease from exploration, and the end of all our exploring will be to arrive where we started, and know the place for the first time.”
Alzheimer’s has been around a long time, longer than you might think, and few have known it the first time.
About 2,400 years ago, Plato described an illness that “gives rise to all manners of forgetfulness, as well as stupidity.”
The ancient Roman poet, Juvenal, characterized a phenomenon: “Worse than any loss in the body is the failing mind which forgets names… and cannot recognize the face of the old friend who dined with him last night, nor those of the children whom he has begotten and brought up.”
Scripture, unwittingly, may have put an exclamation point on Alzheimer’s and other forms of dementia in the Gospel of John:
“When you were younger,
You dressed yourself
And walked wherever you wanted,
But when you are old,
You will stretch out your hands,
And someone else
Will dress you, and carry you to places
You do not want to go.”
I’ve been forced over time to know the place of Alzheimer’s. I’ve lived with dementia for a decade, a disease that can take 20-to-25 years to run its twisting course—for me a slow dance with a devil of a disease that always wants to lead and that has taken several family members from me.
There’s a sign on my writing desk: “When your heart speaks, take good notes.” And I have.
First of all, I have great respect for your profession, though I think nurses deserve far more credit than they receive.
Secondly, all of us, in all professions—medical, business, ministers, scientists, teachers, engineers, journalists, and the like, can do better at times. There are few exceptions.
Short cuts and drive-bys get one home quicker, but the stop signs in life can make one think—a lost art at times today of multi-tasking.
The stop sign in Alzheimer’s is the early diagnosis, clinical trials, brain health, and disabusing wrongful stereotypes of this disease that threaten Baby Boomers and generations to come.
Clinical trials and brain health are key to managing Alzheimer’s and other dementias, hopefully slowing the pace. Dr. Rudy Tanzi of MassGeneral and Harvard, lead researcher for the Cure Alzheimer’s Fund, a colleague who works with UsAgainstAlzheimer’s, and a close friend, has come up with six steps to promote brain health, called S.H.I.E.L.D. The anacronym stands for: sleep, handle stress, interact, exercise, learn new things, and proper diet.
Generally in life, we seek to simplify what we have trouble understanding; there’s comfort in doing so, both in the medical community and community at large. There is no one-size-fits all with dementia. Experts like Rudy Tanzi will tell you that.
And then, there’s the bell curve with some who have cognitive reserve from exercising early on mind and body.
There’s also what the experts call “neuroplasticity,” the ability of the brain in some to form and reorganize synaptic connections for longer periods of time than others.
And so, the person who says their mother died seven years after a diagnosis, that sadly and likely means their mother suffered silently for a decade or more in fear of the taboo of dementia. It also likely means that many general practitioners simply don’t really understand the disease or relate to its devastating effects.
When I was diagnosed with Alzheimer’s years ago, two weeks after being diagnosed with prostate cancer, I asked my physician a score of questions about Alzheimer’s and related complications. “Look,” he replied, “I’m not your counselor…”
The comment is akin to a woman asking her doctor about a lump on her breast and being told to come back in a year for further assessment.
The law now says that primary care doctors have to be counselors of sorts when it comes to Alzheimer’s and other forms of dementia, at least have a better grip on the disease when conducting annual general practitioner physicals. Under federal law, doctors now are supposed to do a cognitive assessment each year for Medicare patients as part of the annual wellness visit.
But only about half of patients get these assessments, and many of the doctors who do an assessment don’t do it well. And some doctors don’t even tell patients about an Alzheimer’s diagnosis because the physicians feel - wrongly - that nothing can done.
UsAgainstAlzheimer's is pushing for adoption of a federal law, the CHANGE Act, that would require these cognitive assessments to be done with screening tools that are better than simple observation by the doctor. I have testified in support on Capitol Hill. The American Academy of Neurology, more than 150 patient groups, and four former surgeons general all have called for a regular annual cognitive assessment as part of a routine check-up for Americans 65 and older.
Unfortunately, doctors currently are allowed to use their “direct observation” of a patient to do that. But “observation” isn’t good enough. Doctors in a primary care often miss the diagnosis of dementia in older people about half the time, as medical history demonstrates.
That means less time for patients to plan for their future, find available resources, enroll in a clinical trial, or to see if available treatments are right for them.
A recent UsAgainstAlzheimer’s A-LIST® survey,with 1,435 responses from those at risk, caregivers, and those interested in Brain Health, probed in edifying ways about need for brain health. It found that only 42 percent had spoken to their doctor about brain health. Sadly, only a quarter (26 percent) of those respondents who spoke with their health care provider received any information on brain health to take home.
That’s not right. Many more of these conversations must be held. Alzheimer’s, indeed, is a Rubics Cube with no easy answers, but it starts with critical questions to be answered.
As TS Eliot wrote, “The end of all our exploring will be to arrive where we started and know the place for the first time.”
A blessing to know the place…
Thanks for listening.
Greg O’Brien, a career journalist, is a member of the board of UsAgainstAlzheimer’s. He is author of the international award-winning On Pluto: Inside the Mind of Alzheimer’s.
Greg O’Brien is author of On Pluto: Inside the Mind of Alzheimer’s, the first book written by an investigative journalist embedded inside the mind of Alzheimer’s chronicling the progressions of his own disease. He is a member of the Board of Directors of UsAgainstAlzheimer’s.