University Times

Patients who come to Pitt’s Alzheimer Disease Research Center (ADRC) are referred by the affiliated Benedum Geriatric Clinic, their primary care physician (PCP) or by a family member/friend; sometimes they refer themselves.

To be eligible for an evaluation, patients must be accompanied by someone who agrees to attend any future appointments. This person, who ADRC calls a study partner, typically is a family member, friend or professional caregiver. Both patient and study partner are interviewed during the evaluation.

Patricia L. Henderson, ADRC research program counselor, is the initial contact for the patient and remains the point person throughout the evaluation and follow-ups.

Patients must bring all medications, including over-the-counter drugs, and their most recent brain CT or MRI scan. If the patient has not had a brain scan, Henderson sets up an appointment for one with Pitt’s Department of Neurology.

“When you come in for the initial visit, usually you’re at the point of realizing you’ve got to do something, that there have been some memory problems,” she said. “This is where a lot of people are: They’re looking for the right diagnosis and where to go for help. I try to set the tone, to get the patient to relax,” Henderson said.

Typically, she recommends that the family view the HBO special, “The Alzheimer’s Project,” (available online at www.hbo.com/alzheimers/), one segment of which was filmed at ADRC.

Henderson explains the 10-page consent form, which both the patient and study partner must sign.

“We’re funded by the National Institute on Aging, so they cover the cost of the evaluation. We work with the National Alzheimer’s Coordinating Center and in turn we have to report some information back to them,” Henderson explained.

By signing the consent form, the patient agrees to enroll in ADRC’s clinical research program. That program requires blood samples and a DNA specimen.

One blood sample is used to check B12 and thyroid levels, because incorrect levels can cause confusion in a patient. “We want to make sure we rule that out,” Henderson said.

The rest of the blood sample is coded for confidentiality and stored under the control of ADRC investigators at Pitt’s Graduate School of Public Health.

A portion of the sample is sent to the National Cell Repository for Alzheimer’s Disease, where it is made into a cell line that can be used for genetic research, Henderson said.

One part of the consent form sometimes is a deal-breaker, she noted. Pennsylvania physicians are required to report those individuals they believe would have difficulty driving safely because of a mental disability, Henderson said. By signing the consent form, the patient acknowledges that the ADRC evaluation may conclude that the patient’s driver’s license should be revoked.

For some people, it’s worse to learn that they have to stop driving than to learn that they have dementia, she said.

Following the interview with Henderson, the patient and the study partner meet separately with a variety of specialists.

Oscar Lopez, a neurologist and director of ADRC, said: “We have the social worker, the psychiatrist, the neurologist and the physician’s assistant, who helps with the neuro-psychological evaluation, all asking similar questions. These are completely independent assessments, going on in parallel. The reason we do that is to avoid missing something that is important. Don’t blame the brain for everything, because what can happen from the neck down can affect your cognition.”

ADRC co-director William Klunk: who is a psychiatrist, added, “I always tell the patient and the study partner to bear with us if we ask the same questions. We all have our own little niche, so I’ll be listening for more psychological aspects, such as whether depression is a factor. Others will be listening for neurological aspects; others for other aspects. And I add: ‘Don’t feel you have to answer the same way all day long. It’s not an inquisition. Many times as you think over an answer, you may find you remember something better.”

Lopez said, “It’s a completely unusual way to do medicine. We go step-by-step, question by question, for about four hours.”

All of the evaluation team members ask when the symptoms of memory loss started, Lopez said. “We ask that many times,” because there is an important difference between when family members began to notice memory slippage and the true onset of the disease, he said.

“For example, you have a person who has had problems for five or six years, and then one day goes to the hospital for a urinary tract infection. For the family, everything started after the urinary tract infection, but when you start probing deeper, you realize these symptoms started five or six years ago and just now the family realizes that it has been a problem,” Lopez said.

“For many years, we were taught having memory problems in old age is considered normal and we can let it go,” he said. “But we now know that memory problems can be caused by something other than old age, that something bad is happening, and that needs to be addressed by a doctor — and the sooner the better.”

As part of the evaluation, Carolyn Rickard, ADRC physician assistant, completes a physical exam, then asks the patient a series of questions designed to home in on the state of the patient’s memory.

“I’m going to talk about their symptoms. How long have they had them? Is it progressively worse or staying on a plateau? How has their memory change affected their day-to-day routine?” she said.

“I’ll talk about mood and sleep disorders. I’ll go through the full list of medicines. I might ask for some of the records from the patient’s primary care doctor.”

Rickard also reviews the patient’s habits, such as alcohol and cigarette use, abuse of medications, prior illnesses.

Then she performs a psychological evaluation. “I’d start with: ‘What are we supposed to be checking out today?’ If they don’t know why they’re at the center, that already tells me a lot of information,” Rickard said.

Asking patients their age provides insight into how well their memory is working. “Most can tell me their year of birth, because that’s a fixed number that doesn’t change. Remembering your age is a little different,” Rickard said.

Another test she gives is asking patients to draw a clock displaying the time 11:10. “Alzheimer’s patients typically will set the hands to the 11 and to the 10. The conceptualization and thinking are not there,” she pointed out.

Rickard also compares the patient’s answers with the study partner’s perceptions, which are obtained in a separate interview.

“The partner will say, ‘He can’t do the bills anymore. He’s messing up on his pills.’ And the patient will say, ‘I’m fine, I still do everything I’m supposed to do,’” Rickard said.

“We use the word ‘confabulating.’ Alzheimer’s patients don’t lie, they confabulate. Because our memory is stored in short-term memory cells and long-term memory cells, some patients can’t remember what they had for breakfast that day, but can remember detailed history of what they did 10 years ago,” she said.

“I’ll ask the study partner to try to pinpoint the rough duration of symptoms. At what point did you first notice memory issues? Are they more frequent now? Was the decline an even progression of steady decline, or a lot of ups and downs, good days and bad days?” Rickard asks.

She asks the study partner about the patient’s driving, about the ability to manage medications and to handle finances. Pills and bills are among the first things that need monitoring when someone has Alzheimer’s, she said.

ADRC defines the three stages of memory deficiency as mild cognitive impairment (MCI), moderate cognitive impairment and severe cognitive impairment. Klunk said evaluating the degree of impairment is the main thrust of the diagnosis.

Lopez said some people show early signs of memory impairment while still functioning, still working, living life normally. For some people the MCI never gets worse, while others with MCI eventually develop Alzheimer’s.

Input from the study partner is crucial in determining the degree of memory decline. Klunk will ask the study partner how frequently the patient exhibits certain behaviors: “Are there physical signs of anxiety? Are there moments of sadness or depression? Does the patient feel guilty? Have low self-esteem? Blame himself for things he’s not responsible for? When getting him to do things he normally likes, does he enjoy them or think they aren’t worth it anymore? How is his sleep? His appetite? Are his moods steady? If you needed him to cooperate, like take a phone message, could he do it? Does he like to be around people, compared to his norm?”

After the four-hour evaluation, ADRC staff prepare reports and meet at a consensus conference to discuss a diagnosis. About 30 ADRC people participate in that conference.

“We have a neurologist, the physician assistant, the social workers, the nurse practitioners, the neuro-psychologists and various others who work on research grants, all to lend their expertise and come up with a diagnosis,” Henderson said.

The group studies the patient’s brain scan to rule out strokes and tumors and they measure atrophy and blood flow in the brain. They review the patient’s medical history and test results, she said. “So, in the evaluation, there’s the biology of the brain, the interview process, the psychological testing and we put all of that together and come up with a diagnosis,” Henderson said.

Lopez and Klunk acknowledged that evaluators occasionally disagree on the diagnosis.

Lopez said, “When we face disagreement we usually ask for more information or request additional testing. We try to explain to families we think that there may be more than one thing going on here. We bring the patient in again in six months or a year and look for changes.”

He added, “We’re dealing with human behavior and that is grey. It’s black-and-white probably in only 5 percent of the cases. It’s not uncommon to have some disagreement, so we delay the diagnosis until we have more information.”

After a diagnosis is determined at the consensus conference, the patient and family members are invited back to ADRC where they’re given the diagnosis by the doctors and recommendations by the counselors.

Lopez said, “We present what we found in lay terms to the family. Although we’re not an agency, we help patients with information and recommend support services.”

Rickard added, “We never hide a diagnosis from a patient. If you have Alzheimer’s disease, we will tell you that. Some patients don’t believe it at first, and that’s fine. In fact, we occasionally have a patient who refuses to come back, although that’s rare,” Rickard said.

ADRC provides Alzheimer’s Association and Institute on Aging literature on caring for Alzheimer’s patients, including making legal plans, organizing activities for the patient, financial planning and appropriate caregiver support services, such as home care, day care or assisted-living services.

Based on the patient’s home situation, Henderson might suggest getting a Life Alert system in the house, or having a family member check that the patient is taking medications properly. She might recommend certain home safety devices, adaptive equipment or special clothing to help ensure the patient’s safety.

Finally, follow-up plans are discussed. Typically, patients who are diagnosed with Alzheimer’s are asked to return to ADRC every six months to be evaluated for further memory decline. Patients with mild cognitive impairment are asked to return once a year for a re-evaluation.

“We also do phone follow-ups with the study partner, to determine if the patient’s medical condition or medications have changed” in the interim, Henderson said.

—Peter Hart