The Small Guide to Alzheimer's Disease. Gary Small

than to try to repair damage once it becomes extensive.

      My advice to people who are concerned about their memory is to have it checked out sooner rather than later. At best, the doctor can reassure the patient that their memory decline is normal for their age. If a diagnosis of mild cognitive impairment or Alzheimer’s dementia is made, then the patient can get started early on a treatment. Such treatments will not cure the disease, but they can mitigate the symptoms, delay future cognitive decline, and help the patient live a longer and more fulfilling life despite any cognitive losses.

       Chapter 2

      Seeing the Doctor

      I become faint and nauseous during even very minor medical procedures, such as making an appointment by phone.

      —Dave Barry

      My office door was closed, but I could still hear my new patient, George, arguing with his wife, Karen, in the waiting room. Both in their late 60s, they had been referred to me by their family doctor because of George’s memory problems. I opened the door and asked them to come in. Karen marched in first, angry, and sat on the edge of the couch. George sat beside her and remained silent.

      “How can I be of help?” I asked.

      “I’m worried about George’s memory,” Karen said. “He’s forgetting things right and left, and he seems spaced out half the time. It reminds me of when my stepfather came down with Alzheimer’s disease. He needs help.”

      I looked to George and asked, “What has it been like for you?”

      He shrugged and said, “It’s not just me. Everyone I know is becoming forgetful. Even you, Karen.”

      Karen rolled her eyes. “You see, he’s in complete denial. I don’t know what to do. It reminds me of my stepfather.”

      George reached out to comfort her, but Karen moved her arm away.

      I said, “I’d like to ask you both some questions and put together a history—”

      “Why ask me questions?” Karen snapped. “George is the one with the problem.”

      George shrugged, and I said, “That’s fine, Karen. Perhaps you could step back into the waiting room while I speak with George?”

      Karen said, “I’ll wait outside.”

      Once we were alone, George seemed to relax.

      “Look, Dr. Small, it’s not me, it’s Karen who has the problem.”

      “Oh?”

      “Sure, I’m a little forgetful like everyone else I know, but Karen has real memory issues and refuses to admit it.”

      “When did you start noticing this?”

      “She’s been gradually losing it for almost two years now. She repeats herself constantly, forgets people’s names, and can’t find things she just put down. Whenever I try to bring it up, she gets mad and says it’s me who has the problem. I don’t know what to do.”

      “So you’re saying she is the one in denial?”

      “Absolutely. There’s no way she would have come with me to see you today if I hadn’t said the appointment was for me.”

      Like Karen, many people in the early stages of cognitive decline are unwilling to face the reality of what it may mean. Fear of memory loss as we age is almost universal because memory is so important to our independence and sense of self. Karen didn’t want to accept that her memory was getting worse because she worried that she was developing Alzheimer’s like her stepfather did. She felt shame about her increasing forgetfulness and feared that she might eventually become dependent on others for her daily needs. Denial is a common psychological defense mechanism that people use to protect themselves from such uncomfortable feelings but can also delay their discovering what’s causing their problem and getting proper treatment. However, it is clearly easier to protect a healthy brain than to try to repair damage once it becomes extensive. Even if someone is suffering from Alzheimer’s dementia, research shows that patients who get into treatment early have better outcomes.

      And it’s not just the patients who slow down the diagnostic and treatment process. Doctors and other healthcare providers often overlook memory problems and other mental symptoms during routine exams. Many healthcare systems and insurance carriers provide disincentives for doctors to care for dementia patients. The time allowed for visits is limited, as are the reimbursements for dementia care. As a result of pushback from patients, families, and the health system, it is estimated that at least half of all patients suffering from Alzheimer’s dementia are walking around with it and don’t know it.

      Although George was not honest with Karen about the reason for their appointment, his ruse worked out for the best. They returned together a week later, and I focused mainly on strategies to improve George’s mild, age-related memory slips. Karen got to know me better, felt less defensive about her memory problems, and became more willing to pursue help for herself. She was able to open up about her fading memory, and she finally agreed to let me focus on her issues.

      Karen, like many of her peers, used denial to convince herself that her fading memory abilities were a normal part of aging. After all, her friends were all forgetting where they put their keys and glasses too.

      Anyone who is living with a family member suffering from Alzheimer’s disease knows how patients tend to minimize their symptoms and even hide them from others. This often occurs early in the course of the disease, when patients are aware of the implications of their fading memory abilities but not yet afraid enough to speak up.

Navigating Denial

      When I first consult with families about a patient’s cognitive decline, typically the spouse, siblings, or adult children try to pull me aside in the hallway to talk alone about their fears and concerns. To avoid the awkwardness of these hallway sidebars, I make a point of meeting separately with patients and family members so I can address each of their concerns and offer guidance as to how to engage in these often delicate conversations with their loved one.

      Recently, my friend Steve called to talk about his 80-year-old father, Harry, who had been living alone in New Jersey since his wife died six years earlier. Because Steve was busy with his job and family life in Los Angeles, he rarely had time to go back and visit his dad. When his sister Jane called to say that Harry got lost on his walk for the third time, Steve wasn’t sure what to do, so he gave me a call.

      “I need to get more information, Steve. Does your father have a doctor in New Jersey?”

      “Yeah, sure, Gary, but he refuses to go and insists there’s nothing wrong with him.”

      “So I guess he wouldn’t see a psychiatrist who I know back there . . .”

      “No way. But I’m flying him out here next month for the holidays.”

      “Maybe you can get your dad to come see me—he already knows me. Maybe I can help figure out what’s going on and what the next steps might be.”

      When Steve picked his father up at the airport, Harry seemed surprised to see him.

      “What are you doing here, Steve? Where’s Jane?”

      “She’s home in New Jersey, Dad. You’re in Los Angeles. You came to visit me for the holidays.”

      “I know that—I’m not an idiot!”

      “Okay, it’s okay. Let’s get the car.”

      Steve called me later. His father was much worse than he’d anticipated. Not only was Harry forgetful; he was ornery and obstinate. There was no chance in hell