What Does It Mean When the Diagnosis Is Alzheimer’s?

Alzheimer’s starts off silently, stealthily, subtly. Lost house keys. Appointments forgotten. A question answered, only to be asked again five minutes later. A stove burner left on. “What my mother noticed first was that Daddy could no longer fill out the bank-deposit slips.” Harold Welch, father of former First Lady Laura Bush, had always kept track of the family’s finances.

He was a successful home builder and real estate developer in Texas. People gave him checks, big and small: a rent check from a bus station he had built in Odessa, Texas; royalty checks from a West Texas oil well. “He always enjoyed going to the bank and depositing them,” Bush wrote in her memoir Spoken From the Heart. One day in the early 1990s, however, the paperwork ceased; the deposits stopped. Welch, once a man of robust energy, sat silently at his desk and stared blankly at the jumble of documents in front of him. The version of her father that stood before her was not the one she had known her whole life.

A Sudden Change

“Mother began to make the deposits for him,” the former first lady remembered. “Then, one day, Daddy walked in the house, set his car keys on the table and announced that he was not going to drive again. He quit forever that afternoon. For years his greatest fear had been that he would hit someone else’s child. He would not risk that for a few more outings behind the wheel.”

Bush’s mother, Jenna, took her husband to the doctor, who gave him a standard cognition test. One of the questions was “Who is the president?” Welch had a ready answer: “Some joker from Arkansas,” he said, the name of Bill Clinton eluding him. “Who was the last president?” the doctor asked. The patient could not answer the question, even though it had been George H. W. Bush, Laura’s father-in law.

An Insidious Disease

The idea that Welch had Alzheimer’s disease was a body blow to the Welch and Bush households. Their lives had been upended by a stealthy, and in many ways mysterious, ailment that — as it progresses — saps a person’s ability to carry out the simplest tasks. That’s because Alzheimer’s is the most common form of dementia, an irreversible, progressive brain disorder that slowly destroys a person’s memory and thinking skills.

Progressive is the key word when describing the disease. A person with AD will gradually and steadily decline. It is a slow, agonizing process. More than 6 million Americans have Alzheimer’s, a number, experts say, that will skyrocket to nearly 13 million by 2050. Alzheimer’s is the sixth leading cause of death in the United States, killing more people than breast and prostate cancer combined. Every 65 seconds, the Alzheimer’s Association says, someone in the United States develops the disease.

Is It Alzheimer’s?

We’ve all been there: Did I shut the coffee maker off? Where did I park? What’s today’s date? All of us experience memory hiccups from time to time. But if forgetfulness becomes common and is combined with other cognitive difficulties, then it may be a form of dementia, often Alzheimer’s.

So what’s the difference between normal aging and Alzheimer’s? In general, healthy aging is a term doctors use to refer to those of us who are relatively healthy as we get older. We don’t take a lot of medications and are socially, physically, and intellectually active. Normal aging is a term that describes those of us who might have chronic illnesses, such as diabetes, high blood pressure, or arthritis. Those who age “normally” may take a few prescription medications and see some loss in social and physical activities. On the other hand, doctors use pathological aging to describe those who have trouble performing day-to-day activities and are more likely to develop AD or some other form of dementia.

Normal Forgetfulness or Something More Serious?

“Normal cognitive aging, we’re all going to get some of that,” says Daniel C. Potts, M.D., F.A.A.N, attending neurologist at the Veterans Administration Medical Center in Tuscaloosa, Alabama, and at the University of Alabama. “That involves things such as forgetting people’s names… not being able to process multiple pieces of information coming at the same time. Those are normal things. But if we start having trouble with short-term memory loss that is more than losing a name every now and again, then something is wrong.” Alzheimer’s and dementia are conditions in which people are having trouble with memory that’s affecting their daily lives.

There is some good news. Studies have shown that cognitive decline is not an inevitable consequence of aging. Increased distractibility is a sign of cognitive aging. When people get older, researchers say, they are more easily distracted by irrelevant information when they are under stress than younger people — and a specific network in the brain, which scientists believe is the epicenter for Alzheimer’s and other forms of dementia, may be to blame.

Researchers at the University of Southern California in 2018 found that the attention span of seniors is associated with a part of the brainstem that helps the brain focus during periods of stress or excitement. It is also where signs of the hallmark of AD begin to take shape.

“Deciphering exactly how these changes in the brain occur as we age could one day help us uncover how to protect the brain from cognitive decline and loss of function,” says Mara Mather, Ph.D., a professor at the USC Leonard Davis School of Gerontology.

Discordance

AD is not an easy disease to manage. Not only does it ravage the mind, but it also strains relationships between patients and their family and friends. Unlike patients with other diseases, people with Alzheimer’s are often unaware they have the illness. The severity of its impact and its consequences, however, are not lost on family and friends. This disconnect can turn into a seemingly insurmountable chasm. People diagnosed with AD often cannot recall events related to their cognitive difficulties, while their families are left on the sidelines watching a slow decline. Frustration and anxiety walk hand in hand with AD.

Moreover, patients who do know what is happening to them will often go into a state of denial, a common defense mechanism that involves rejecting the painful reality of the prognosis. Alzheimer’s patients often say they have a good memory, although those around them know that is no longer the case. Family members will also use denial, for a time, to deal with the diagnosis, as if denying the disease exists will make it go away.

The Responsibility of a Caretaker

Alzheimer’s is a creeping disease, as Jenna Welch and her daughter would come to find out. As her husband slowly descended into his own closed and insular world, his wife ended up shouldering most of the caretaking responsibilities. Roughly 16.1 million Americans provide unpaid care for loved ones dealing with Alzheimer’s and other forms of dementia. Welch quit her ladies’ bridge club and became her husband’s chauffeur. She drove him to see his friends or to the mall in Midland, Texas, where they walked the corridors undisturbed. She read books to her husband and helped him do all the things he could not do on his own.

For Bush, a sense of guilt stayed with her as her dad moved from one stage of Alzheimer’s to the next. During that time, she was on the road a lot as her husband, George W. Bush, campaigned for the governorship of Texas. “Looking back now, I see other things I wish I had done. Daddy always loved music… I wish we had played more music for him during those last few years. Brain researchers say that songs are imprinted in our memories longer than many other things.”

The Long Goodbye

From the moment of diagnosis to a patient’s last day, Alzheimer’s is the long goodbye. It’s hard to decipher whether a loved one with the disease still understands enough to answer questions or to read a newspaper. Eventually every person with Alzheimer’s will need assistance. Those in the beginning stages may need simple reminders, while the most severe cases will need 24-hour care.

Yet until that day comes, there are many things patients and caregivers can do to make life more bearable. Keep that in mind as you and your loved one make the journey through this difficult time. Perhaps the most important thing you can do is to have empathy. Trying to understand the world of an Alzheimer’s patient means moving beyond your own perspective and expectations. Patients might not see what is happening to their minds and bodies, even if you most certainly do.

Let’s be clear — it won’t be easy to watch a person who was once vibrant and full of life decline. When the journey ends, however, hopefully you will have given your loved one the dignity and compassion that we all seek.

A version of this article appeared in our partner magazine Alzheimer’s: New Hope For A Cure.