On Living With Alzheimer's

On Living With Alzheimer's

Suppose I had Alzheimer's, would you still listen to me?

I asked this question in my latest Forbes essay. Why? As medicine pushed the diagnosis of Alzheimer's disease to milder, even pre-clinical, stages of cognitive impairment, more and more people will have the label. How the public answers this question has substantial impact on the quality of the lives of millions of people and the people who care about them.

Check out as well Steven Petrow's excellent Washington Post essay about truth telling to person's with dementia caused by Alzheimer's disease.

What's it like to have Alzheimer's?

I asked this to Bill Lyon, my patient and a writer of distict talent. Here's what he said to me, and what, after he read my account, he said to his editors. Mr. Lyon has been among my best teachers.  

The Way Forward On Alzheimer's Disease

Medscape asked me what we need to do to make progress in the search for better treatments for Alzheimer's disease. Here's what I said......

Two On Caregiving

In a companion set of essays, I take on caregiving. I explain how cuts to Medicaid will harm not only older adults but the people who care for them, which means America's women. Then, my colleague Josh Grill and I make the case for more compensation for caregivers who take on the additional work of being a study partner in an Alzheimer's disease clinical trial. The solution is in the hands of America's corporations.


Alzheimer's Disease Patients Aren't Zombies; They're People And We Need To Treat Them Like People

Jews in Germany, homosexuals everywhere, and, more recently, undocumented residents in the U.S. — when we stigmatize a group of people, we cease to care. The stigmatized become a threat, a burden. They’re put in ghettos, deported, even eliminated.

Persons with Alzheimer’s disease are called a “silver tsunami” that will bankrupt America. They feel a distancing from others. The public’s negative emotions are driven by the decline expected with Alzheimer’s disease.

The problem with the zombie metaphor, with thinking about the patient as the living dead, is that it limits our repertoire of emotions. We feel fear and disgust, emotions that in turn cause stigma, which describes a deliberate distancing and dehumanizing of a person.

We hope for a cure, but hope is not a plan, and horror stories are for teenagers. We -- autonomous grownups -- need other ways of thinking about the disease.

This other way isn’t some fairytale of unicorns and rainbows. Alzheimer’s, like other diseases that progressively destroy our brains, disrupts our ways of being, because its earliest symptoms are a loss in our capacity to exercise a cherished ethic: autonomy. We need to grow up, and think I’ve found a way we can do this in the stories of Alice Munro.

Read on at Forbes.com..... 


We Don’t Have Enough Alzheimer’s Disease Doctors, But We Can Fix That

The other week, a patient came to me for a diagnostic work-up of her memory problems. She’d already had them worked up elsewhere, but, her husband explained, that visit ended not with a diagnosis, but with a prescription for an antibiotic. Her brain MRI had shown sinusitis, and this entirely asymptomatic sinusitis, an “incidental finding,” was all the doctor cared about. My hunch is the unnecessary treatment for the sinusitis was a way to avoid talking about her memory problems. Two weeks later, she suffered diarrhea, a complication of the powerful antibiotic she didn’t need.

My fellow Americans, whether you have memory problems or are worried about someone else with memory problems, it’s really bad out there. I’m going to explain why and tell you how this is just starting to change.

Let’s start with a thought experiment: Suppose you’re concerned you might have cancer. Suppose you’ve got worsening heart failure. Or you need a diagnosis for your symptomatic sinusitis. You see an oncologist, cardiologist, or ear, nose, and throat doctor, respectively. But what if you’re concerned about memory? What kind of doctor, for example, should a concerned daughter take her forgetful mother to?  

Visit my Forbes.com blog to read the complicated answer to this question. 


More Bad News In Our Nation's Fight Against Alzheimer's Disease

On Thanksgiving eve, the pharmaceutical company Lilly announced the disappointing results of a much-anticipated study. Eighty weeks of treatment with solanezumab failed to treat patients with dementia caused by Alzheimer’s disease. For persons with Alzheimer’s disease and their families, this was bad news. But there’s even worse news coming.

The incoming administration and the House and Senate majority leadership are determined to repeal the Affordable Care Act, known as the ACA or “Obamacare.” Representative Tom Price, the administration’s nominee to run the Department of Health and Human Services, which oversees the federal role in healthcare, has consistently called for the repeal of the ACA.

The argument to repeal Obamacare – “every word,” Texas Republican Senator Ted Cruz has proclaimed – largely focuses on whether and how to provide health insurance for people who are uninsured. At first glance, repealing the ACA might seem an event with little impact on the healthcare of Americans with Alzheimer’s disease. Most are over 70, and Medicare begins paying for their medical care at age 65. They don’t need coverage provided by the ACA.

They don’t need the coverage, but they do need the ACA. Find out why on Forbes.com.


The History Of The Future Of Alzheimer's Treatments

There is something about beginnings and endings -- the start of a war and the end of a war, birth and death. They're quite different events but they embody a similar sense of a transition and even a feeling of samenes. Roman mythology embodied this in Janus, a god who looks both forwards and backwards in time. He was often depicted as having two faces - one looking into the future and the other into the past. His mind would resolve these distinct images into time present.

In "The History Of The Future Of Alzheimer's Treatments," I argue we need to take a Janus-faced approach to how we think about new Alzheimer's treatment. They embody foward looking advances but also the enduring controversies that have haunted past treatments, controversies we're set to repeat again, and yet again.

A Conversation About Alzheimer's Diseaes On NPR's Radio Times

Three years ago, retired Philadelphia Inquirer sports writer Bill Lyon received news that he had Alzheimer’s disease. So, Lyon decided to write an on-going column that documents his experiences with his dementia, which he intends to write until he no longer can. Lyon has given his disease the nickname, “Al,” and says he wants to kick “Al’s ass”. We’ll hear host Mary Cummings-Jordan talk with Lyon about living with “Al,” and how he manages living with a deteriorating mind. Mary spoke with meLyon’s doctor about new treatments, and Felicia Greenfieldwho about the resources and options for caregivers. 

Mr. Lyon's columns and my essay about his column are published in the Philadelphia Inquirer

How Technology Will Help Me Care For My Aging Brain

I've just turned 50, and that birthday means I'm now living with the cognitive changes seen with aging. Whether by disease or what's left over after the psychologists take away the persons with diseases like Alzheimer's Disease, cognition changes with aging, and it changes in ways that set us up for problems with life's important, high-stakes and sometimes risky activities such as managing money, driving and performing jobs like medicine and finance. And so I wrote about what I need to live well with my aging brain.

My Most Powerful Technology

I am an Alzheimer’s doctor. I practice at a “university-based memory center.” I care for patients with failing brains, and I also care for their families, because to care for a patient, you have to care for their family as well.

Technology surrounds me. Beneath me, in a basement encased in concrete, a 220-ton cyclotron spins hydrogen atoms to near light speed, creating a beam of protons to shoot at a cancer. Around me, infusions suites house intravenous pumps delivering powerful medications. There are devices to monitor, pace, and even resuscitate hearts. The building itself testifies to invention, a multi-storied glass and steel framed atrium, a kind of crystal palace.

Technology surrounds me, but my exam rooms are barren. My technology is limited, almost pre-modern. In fact, a better word to describe what I use is “tools.” A clipboard with plain white paper, a pen for me, a pencil for the patient, a box of tissues. I’ve come to see that my most powerful technology is not technology in the strict sense of that word. My most powerful technology is a four-word question: “What’s a typical day?”

Alzheimer’s Disease Patients Are The Last Casualties Of The Cold War

Much of the talk about Alzheimer’s disease how it is a big problem and it’s only getting bigger. In the U.S. alone, my colleagues and I struggle to care for 5.3 million patients. By 2025, there will be 13.8 million. Why did this happen? The standard answer follows a three-step, fact-filled narrative: (1) the 20th century has seen tremendous advances in longevity; (2) aging is among the chief risk factors for Alzheimer’s disease; and (3) there are no effective treatments. We say that these facts add up to a crisis. The solution? Biomarkers and drugs that allow Alzheimer’s doctors like me to diagnose and treat patients before they suffer disabling cognitive impairments. I’m actively trying to make this future possible, but, I’ve been looking backward as well — back 51 years to the birth of Medicare, the U.S. social insurance program that pays for older adults’ health care. I’ve made a discovery. The facts above are true, but they’re not the whole story. The elderly, particularly the elderly with dementia caused by Alzheimer’s and other neurodegenerative and vascular diseases, are among the last casualties of the Cold War. We had a hand in making this crisis, when, 51 years ago, President Lyndon Johnson signed Medicare into law.


Whealthcare: Why Bankers, Financial Analysts And Doctors Need To Start Working Together

Over the last few months, as I’ve been musing about the aging brain and how problems with financial capacity are among the most common and earliest signs of more than trivial age-related declines as well as common diseases like Alzheimer’s disease and this idea came to me. In a word, it was “whealthcare.” Whealthcare is not simply a play on words. With aging, our health and wealth face multiple risks. The more we integrate our health and wealth care, the better we can identify and intervene, before it’s too late. With my colleague Dan Blazer at Duke, I published this essay in Forbes.com introducing the concept.

And in a follow up essay, I examine the concept in greater detail, making the case based on empirical observations about the psychology of aging and the life course, and the social-ecological model of public health.  

We Need To Be More Open About Alzheimer's Disease

How to live with a brain labeled as at-risk of decline and yet still live and be treated as a person? Autonomy ­– the freedom and capacity to self-determine our lives – is among our most cherished ethic, and unique among the many diseases of aging, Alzheimer’s and other dementias as well as cognitive aging execute a relentless frontal assault on our ability to exercise this ethic. In my latest essay, I take on the coming challenges our nation's plan to prevent Alzheimer's disease. Read it at Forbes.com.


The Risk Of Developing Dementia Is Declining

The suffering caused by dementia and the fear that in the coming decades aging Americans will experience even more suffering can fan flames of rhetorical excesses. We’re going to drown in a silver tsunami, succumb to an epidemic. Nations’ healthcare systems will be bankrupted, and by implication, their economies as well. Dementia is so dreaded some hope to die at 75, the age when the risk of developing dementia notably increases.

The oxygen that fuels these rhetorical fires is numbers. People are living well past 60, and older age is among the chief risk factors for dementia. As nations age, that risk will therefore become even greater and so, inevitably, the count of persons with dementia will soar. It’s estimated that by 2050, 13 million Americans over 65 will have dementia.

Or maybe not.

The February 11, 2016 issue of The New England Journal of Medicinereports a study of 30-year trends in the risk of developing dementia. It’s not going up. In fact, it’s going down. How did the researchers discover this? What are its implications for health care and public policy?

To find out the answers to these questions, visit my blog at Forbes.com.


Taking On The Challenges Of Precision Medicine For The Brain

The entrepreneur and scientist Craig Venter opens his autobiography, A Life Decoded, “Even by the age of two, the one trait that has perhaps most characterized my success had become apparent: taking risks.” The child is the father of the man. When offered to opportunity to learn his personal genome, he went all in and learned it all. His genetic code includes one copy of the APOE4 gene. This wasn’t good news.  

The APOE gene has three common forms – called APOE2, APOE 3, and APOE4 – and each person has two copies of the gene, one from our father and the other from our mother, giving us six possible genotypes. Multiple studies show a similar finding: the more copies of the APOE4 gene you have, the greater your risk after age 60 of developing Alzheimer’s disease dementia.

So, Venter took another risk. He enrolled himself in his own “subject of one” experiment. He started taking simvastatin, one of the statin drugs routinely prescribed to hundreds of thousands of adults to lower cholesterol in order to reduce lifetime risk of death from cardiovascular disease. Observational studies have suggested statins may also reduce the risk of developing Alzheimer’s disease dementia, but no experiments in humans have proven this, and at least two clinical trials have failed to show that statin drugs slow the cognitive decline in persons with Alzheimer’s disease dementia.

Since its discovery in 1993, the APOE gene has lived in the outer fringes of Alzheimer’s disease clinical practice. Position statements from groups such as the American Society for Human Genetics don’t recommend testing for it as part of clinical care.

For a time, 23andMe included APOE testing as one of the results available in its home genetic testing kit. My colleagues and I have learned of people who pursued 23andMe testing to satisfy curiosity over their ancestry only to discover they were an APOE4 carrier.

APOE results have also been given to participants in research studies. At age 49, for example, Jamie Tyrone, participated in a study that tested her for the genes associated with 22 diseases. Among her personal concerns was a family history of multiple sclerosis.

“Alzheimer’s was not on my radar screen,” she explains. And then it was.....

To read more about how researchers are taking action to use APOE testing to discover drugs to prevent the onset of Alzheimer's disease dementia, read on at Forbes.com.


Robin Williams' Last Act And The Stigma Of Loss

One year after the comedian Robin Williams’ suicide, his widow, Susan Williams, has declared that her husband’s suicide was not, as had been suspected, a devastating symptom of a depression. He was, she insists, “killed” by Lewy Body Dementia, a neurodegenerative disease.

Her remark suggests her husband’s suicide was the rational act of a person suffering from both progressive losses to his capacity and the concern of further losses. His act would add to a small but growing series of cases, such as the feminist psychologist Sandra Bem, who, after her diagnosis of Alzheimer’s disease, planned and then committed suicide, although Bem, unlike Williams, engaged her family in her plans.

Lewy Body disease is one cause of neurodegenerative dementia. The term “neurodegenerative” captures how neurons are not simply dysfunctional. They’re dying. Williams’ diagnosis was not known until an autopsy, but he did know he had another neurodegenerative disease, Parkinson’s disease. Like Lewy Body Disease, it causes progressive losses not only in the ability to move, but also in thinking and decision-making.

Rational suicide is morally challenging, and it’s gaining acceptance. With the passage of California’s “End of Life Act,” fifteen percent Americans now have the legal right to end their life rather than suffer the advanced stages of a disease. The core conditions to what proponents call “doctor-assisted death” and opponents call “physician-assisted suicide” are that the person is judged terminal, capable of making the choice and able to execute the act. 

To read the rest, visit Forbes.com

The problem with the zombie metaphor, with thinking about the patient as the living dead, is that it limits our repertoire of emotions. We feel fear and disgust, emotions that in turn cause stigma, which describes a deliberate distancing and dehumanizing of a person.