Be Healthy Spring 2015 - Alzheimer's Disease

Spring 2015

Be knowledgeable. Be well. Be healthy.

DEPRESSION AND ALZHEIMER’S SOME SYMPTOMS OVERLAP

CLINICAL TRIALS REAP THE BENEFITS

HEALTHY RECIPES

Alzheimer’s Disease WHEN MEMORIES FADE

BRIGHAM AND WOMEN’S HOSPITAL

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Alison Pietras (617) 278-0379

Publisher Melvin Miller Health Editor Karen Miller Senior Editor Yawu Miller Art Director Daniel Goodwin Production Caleb Olson Proofreaders Yawu Miller Rachel Reardon For advertising opportunities Please contact Karen Miller at (617) 261-4600 x7800 or kmiller@bannerpub.com

Be Healthy is published by Banner Publications, Inc. Volume 3 • Number 1 Spring 2015 Be Healthy is printed by Cummings Printing 4 Peters Brook Drive P.O. Box 16495 Hooksett, NH 03106 603-625-6901 COVER PHOTO: THINKSTOCK/ HILL STREET STUDIOS PAGE 3 PHOTO: THINKSTOCK/MONKEY BUSINESS

Editor’s note: The information presented in Be Healthy is for educational purposes only, and is not intended to take the place of consultation with your private physician. We recommend that you take advantage of screenings appropriate for your age, sex, race and risk factors and make timely visits to your primary care physician.

Alzheimer’s Disease

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Clinical trials: All groups should benefit

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Recipe: Salmon Kebabs with Creamy Tzatziki Sauce

Spring 2015 The issue

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Alzheimer’s Disease Depression and AD

4 8

Focus

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Memory formation The long goodbye Clinical trials AD study stories Caregivers Facts and figures

10 11 12 14 15 16

Healthy steps

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Nutrition Recipes Fitness

18 20 22

baystatebanner.com/news/be-healthy | Be Healthy 3

The issue: Alzheimer’s Disease

ALZHEIMER’S DISEASE When they no longer know your name

TIME’S IMPACT ON THE BODY IS PRETTY OBVIOUS. The hair thins and turns white. Lines and wrinkles invade the skin. We can even lose an inch or two in height.

There are some changes, however, we cannot see. The brain is aging as well. The memory gets a little fuzzy. You walk into a room and can’t for the life of you figure out why. These are mild changes, however, and cause little harm — just annoyance.

Yet, something more sinister can lurk undetected — all due to errant proteins. Tangles of a protein called tau (rhymes with “wow”) accumulate in nerve cells in the brain that are called neurons. Clumps of another protein, called amyloid plaques, build up between nerve cells and interrupt communication.

These are not good changes. The tangles strangle the cells causing their eventual demise, while plaque prevents communication between the neurons. Unfortunately, it’s that communication that allows memory, reasoning, emotion, movement and even breathing. Scientists now believe that the amyloid plaque is the major culprit here and drives the production of the tangles in the cells.

“It is normal for neurons to produce these proteins,” said Dr. Reisa Sperling, the director of the Center for Alzheimer Research and Treatment at Brigham and Women’s Hospital. “But it is not normal for them to accumulate.” Few are spared.

“Almost everyone over the age of 65 has some tau in the hippocampus (the part of the brain that 4 Be Healthy | Spring 2015

controls memory and learning),” she explained.

“Roughly 30 percent have the amyloid plaque in the cortex.” The cortex controls complex functions like problem solving, emotions and comprehension.

This buildup of proteins begins earlier in life, but may go undetected for decades. Some people experience these changes to some extent with no side effects.

However, in Alzheimer’s disease, the most common form of dementia, these proteins take over and wreak havoc. And their impact is very noticeable.

AD is a progressive, degenerative disease that robs victims of memory, reasoning, thinking and communication and eventually their life. It is the sixth leading cause of death in this country.

It is estimated that 5.4 million people have AD. In a recent study published in the journal Neurology, however, researchers concluded that the number is considerably higher. That’s because while the immediate causes of death are often attributed to pneumonia or other conditions, the fatalities are precipitated by AD.

The issue: Alzheimer’s Disease

» RISK FACTORS OF AD A risk factor is a characteristic that increases the likelihood of developing a disease. Having a risk factor does not guarantee that you will get the disease. n Age — the risk doubles every five years after the age of 65 n Family history — incidence is higher if a parent, child or sibling has AD n Genes — APOE-4, which is more common in blacks, increases the risk n Sex — prevalence is greater in women n Severe and repeated head injury n Mild cognitive impairment — a slight but noticeable and measurable decline in cognition n Lifestyle factors — high blood pressure, cholesterol and glucose levels are linked to AD n Low level of education

“

We’re not looking for a cure. We are looking for an extra five years.”

— Dr. Reisa Sperling

Director of the Center for Alzheimer Research and Treatment, Brigham and Women’s Hospital

PHOTO: COURTESY BRIGHAM AND WOMEN’S HOSPITAL

Reisa A. Sperling, M.D., M.MSc., Director, Center for Alzheimer Research and Treatment, Brigham and Women’s Hospital, Professor of Neurology, Harvard Medical School

baystatebanner.com/news/be-healthy | Be Healthy 5

The issue: Alzheimer’s Disease Undoubtedly, the number will continue to climb. By 2030 — just 15 years away — one-fifth of the U.S. population will be 65 years or older, according to the U.S. Census Bureau. And age is the largest risk factor for AD. The impact of AD on the economy is staggering. According to the National Institutes of Health, in 2010 the cost to treat AD was roughly $215 billion. As a point of comparison, in that same year the cost to treat cancer was $77 billion, noted the NIH.

Risk factors The cause of AD is not exactly known. It is likely due to a combination of genetic, environmental and life-style factors. A gene, familiarly known as APOE — APOE-4, to be exact — is thought to play a role in the development of AD. Sperling is quick to point out that the inheritance of APOE-4 merely increases the risk, and is not a definitive cause of AD. In addition, some people lacking that form of the gene can still develop AD. For reasons unknown, the APOE-4 gene has a higher prevalence in African Americans. In addition, cardiovascular diseases, such as hypertension and diabetes, are more prevalent in blacks, and may contribute to the disease. Cardiologists believe there is a connection between heart health and brain health.

AD occurs more frequently in women.

“It is not known if that is due to the fact that women live longer or may have more amyloid,” explained Sperling. Education may also be a factor. Researchers at Rush University in Chicago found that black participants with lower levels of education had poorer cognitive and physical function, such as balance, compared to whites with similar education. Interestingly, however, at levels of education beyond high school blacks experienced greater gains in physical and cognitive health when compared with whites.

Diagnosing AD has improved considerably. Testing involves an evaluation of memory, blood and urine tests as well as MRIs and PET scans, which can detect plaques in the brain. Part of this testing is to make sure that the changes are not due to another condition, such as a nutritional deficit or brain tumor. By using 6 Be Healthy | Spring 2015

» SYMPTOMS OF ALZHEIMER’S DISEASE Alzheimer’s disease is progressive and can last up to 20 years.

The symptoms worsen as the disease progresses. n Memory problems n Trouble finding the right words n Poor judgment n Repeating questions n Getting lost n Trouble handling money and paying bills n Losing things or misplacing them in odd places n Mood and personality changes n Inability to learn new things

n Difficulty carrying out tasks that involve multiple steps (such as getting dressed) n Problems coping with new situations n Hallucinations, delusions and paranoia n Impulsive behavior n Problems recognizing family and friends n Inability to communicate n Lack of bowel and bladder control

» IS IT TYPICAL AGING OR IS IT DEMENTIA? NORMAL AGING

DEMENTIA

Occasionally searches for words

Has increasing difficulty finding desired words

Momentarily forgets an acquaintance’s name

Frequently forgets people’s names and is slow to recall them

Sometimes misplaces keys, eyeglasses or other items

Frequently misplaces items and puts them in unusual spots

May forget events from the distant past

May forget recent events or newly learned information

May have to pause to remember directions, but doesn’t get lost in familiar places

Becomes temporarily lost more often, may have trouble understanding and following a map

Remembers recent important events; conversations are not impaired

Becomes less able to recall details of recent events or conversations

Interpersonal social skills are at the same level as they’ve always been

Loss of interest in social activities; may behave in socially inappropriate ways SOURCE: THE JOHNS HOPKINS WHITE PAPERS

The issue: Alzheimer’s Disease

» PROGRESSION OF AD Preclinical AD (No symptoms of AD)

Mild to Moderate AD

this comprehensive approach, clinicians can now diagnose AD with up to 90 percent accuracy, according to the Alzheimer’s Foundation of America.

AD is one of the most feared diseases. It’s right up there with cancer. However, the incidence of cancer begins to drop after the age of 75, as noted by the National Cancer Institute, while AD is on the upswing.

In addition, while death rates from cancer dropped 32 percent between 2000 and 2010, death rates from AD increased 39 percent during that time period.

By age 50, people begin to panic at the slightest slip in memory or deterioration of some capability.

One slip up does not spell AD, emphasized Sperling.

A person’s memory can falter for a number of reasons, including stress, anxiety or sleep deprivation. Multitasking contributes to the problem. “You’re working on 40 things at once but can’t remember the other 39,” she said.

However, if you notice that you are forgetting many things and you are having difficulty performing activities that you normally do, such as paying bills, these are probably not normal signs of aging. You might be experiencing the early signs of AD or another type of dementia.

Failure to recognize the symptoms is part of the problem and can significantly delay diagnosis. Studies have shown that minorities are often diagnosed at later stages of the disease. Instead of dementia they attribute the changes to “mind-slipping” or that the person is an “old-timer.”

Early testing

Severe AD

SOURCE: COURTESY OF THE NATIONAL INSTITUTE ON AGING/NATIONAL INSTITUTES OF HEALTH

Alzheimer’s is a progressive disease that results in nerve cell death and tissue loss throughout the brain. Plaques and tangles, which are the precursors to AD, are depicted in the blue-shaded areas. As the disease progresses, the brain shrinks, which eventually impacts most of its functions.

It is important to get tested early. Four medications for AD have been approved by the Food and Drug Administration, but some work best in the early stages of the disease. The medications treat the symptoms and not the underlying disease in the brain.

There is no cure for AD. The cause of death is often pneumonia. Falls are another cause due to poor balance. In others it is “failure to thrive,” explained Sperling. People stop eating and drinking.

As devastating as this disease is, Sperling is upbeat.

She correlates AD to heart disease, which can be controlled by a combination of healthy eating, exercise and medication, such as cholesterol-lowering statins.

She envisions the same triad approach for AD. She is convinced that the disease is preventable and she is out to prove it. She is heading a clinical trial called the Anti-Amyloid Treatment in Asymptomatic Alzheimer’s study — A4 for short. This is a landmark study to test whether a new investigational treatment can prevent memory loss caused by Alzheimer’s disease in people who do not yet show any symptoms.

“We’re not looking for a cure,” Sperling explained.

“We are looking for an extra five years.” To an 85-yearold person, that’s a life time. baystatebanner.com/news/be-healthy | Be Healthy 7

The issue: Alzheimer’s Disease

The overlap

Is it depression or Alzheimer’s or both?

NO LONGER INTERESTED IN ACTIVITIES YOU ONCE ENJOYED? Having trouble concentrating or remembering things? Sounds like a clear-cut case of depression. Not so fast, says Dr. Olivia Okereke, the academic director of the Geriatric Psychiatry Program at Brigham and Women’s Hospital.

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» SYMPTOMS OF BOTH DEPRESSION AND AD Is it depression or is it dementia? n Difficulty concentrating, remembering details and making decisions n Disturbances in sleep patterns n Irritability, restlessness n Loss of interest in activities or hobbies once pleasurable

decline, while 18 percent developed dementia. Those who developed dementia had displayed more symptoms of depression before their diagnosis.

The link between depression and dementia is not clear. One theory is that depression and chronic stress may damage the brain.

Regardless of the cause of the symptoms the root of the problem must be established to ensure appropriate treatment. That’s where Okereke comes in. After a thorough medical psychiatric evaluation she recommends a course of treatment that may include medication or counseling or both. A re-evaluation following the treatment will usually give the answer. “If mood improves and cognitive performance gets better in response to treatment, then that would indicate depression is the main issue. If depression symptoms resolve, but performance does not change, the issue is likely more than a mood problem,” she said.

This overlap is one reason geriatric psychiatrists work in concert with

Dr. Olivia Okereke is the academic director of the Geriatric Psychiatry Program at Brigham and Women’s Hospital.

behavioral neurologists.

A major problem with both conditions, however, is either a delay in treatment or the failure to receive treatment at all. According to the National Association of Mental Health only one-half of Americans experiencing an episode of major depression receive treatment.

This is more common in African Americans and Mexican Americans, as reported in a study published in the Archives of General Psychiatry.

Similarly, researchers from the University of Pennsylvania discovered that both African Americans and Hispanics had higher levels of cognitive impairment and dementia at their initial clinic visit than did non-Hispanics whites.

The relationship between depression and dementia may be a two-way street.

Some studies have shown that depression was found in up to half of people with moderate AD and in more than two-thirds of people with more severe AD. Okereke agrees. Depression is seen in people with early memory changes that may result in dementia. Likewise, dementia appears associated with becoming depressed, especially in the later stages. The question remains whether depression helps bring on dementia or whether depression is just one of the earliest signs of a dementia process that has already begun.

The bottom line is that treatment of depression is always important, whether or not it is related to AD. “Treatment can be very effective for older adults,” said Okereke.

PHOTO: COURTESY BRIGHAM AND WOMEN’S HOSPITAL

“Symptoms of depression and dementia can overlap,” she explained. Especially in early stages, it can be hard to distinguish between the two. Further complicating the issue is that both often occur together.

Yet, these symptoms — regardless of the cause — are frequently overlooked in older adults. That’s because symptoms of Alzheimer’s disease are often considered normal signs of aging. In a recent survey conducted for the Alzheimer’s Foundation of America, two-thirds of caretakers who participated in the survey, reported that prior to the diagnosis, they believed the behavior of their loved ones was “just a normal part of aging.” Unfortunately, this misperception delayed the diagnosis for the majority of the patients.

Likewise, symptoms of depression are misunderstood, or even expected, in older adults. “Depression is not a normal part of aging,” explained Okereke.

The consequences of both these conditions take a hefty toll. Mental health disorders, including depression and anxiety, are the sixth leading cause of disability in this county, as noted by the Council for Disability Awareness. As the population ages, the prevalence of AD is expected to climb. It strikes almost 50 percent of those aged 85 and older.

Yet, though different, scientists believe there is a relationship between depression and dementia. Researchers at Rush University in Chicago set out to prove that depression is actually a risk factor for dementia. They screened 1,700 older adults who did not have dementia or depression. The participants were re-evaluated every year for about eight years. During the course of the study 52 percent of the participants developed mild cognitive impairment, a less serious form of memory

Focus: Alzheimer’s disease A closer look at AD » How memories are formed 10 » Personal perspective 11 » Clinical trials 12 » Caregivers 15 » Facts and figures 16

Jean Rose (r) is shown with her daughter, Christine Rose. Christine encouraged her mother to participate in the A4 study after seeing the ad in the Banner.

“

[These experiments] are why we have advanced in medicine.”

— Jean Rose

Participant in the A4 study for Alzheimer’s prevention

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FOCUS: Alzheimer’s Disease

Do you forget to remember?

Memories are formed through a three-step process

different parts of the brain, including the hippocampus and cerebral cortex, work in concert to develop a memory network.

It is this network that helps store and retrieve memory.

To remember something your brain goes through a three-step process. First the brain has to register, or encode, the memory. People often complain that they have forgotten something when in fact it was never encoded in the brain to remember. For instance, if you didn’t pay attention to a person’s name when introduced, in all probability your brain didn’t process it.

Once encoded, the thought is stored as a short-term memory, and may get stored later as a long-term memory.

While thoughts in short-term memory are fleeting — a telephone number, for example — important information is transferred to long-term storage. The more information is repeated or used, the more likely it will be retained. Repetition builds and strengthens connections in the brain. Long-term memory can store large amounts of information indefinitely.

The last step — memory retrieval — is successful if your thoughts have successfully been encoded, or processed and stored.

With age the retrieval process takes a little longer, but remains intact. In the early stages of Alzheimer’s disease, shortterm memory is impaired. As the disease progresses, however, even long-term memory can become compromised.

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ILLUSTRATION: CALEB OLSON

MEMORY IS A COMPLEX PROCESS THAT EVEN THE MOST SOPHISTICATED SCIENTISTS DO NOT COMPLETELY UNDERSTAND. What is known is that

FOCUS: Alzheimer’s Disease

Personal perspective:

The long goodbye One family recalls its struggle with AD SEPTEMBER 26, 1923 WAS A SPECIAL DAY IN SURRY, VIRGINIA. At least it was for Willy and

PHOTO: COURTESY BETHEL AME CHURCH

Alice Butler. Their daughter and fourth child, Eva, was born.

Eva proved to be an ambitious child with high aspirations. She was the first in her family to attend college. Her studies at Hampton University, however, were temporarily derailed by financial constraints. She was forced to move to Philadelphia to find work.

Her studies were further delayed when she met and married Raymond Hammond, a Baptist minister. The couple had three children, the oldest of whom is Rev. Dr. Ray Hammond, a pastor at Bethel AME Church in Boston.

Yet, even with two small children she returned to school and graduated from what is now Cheyney University. Eva could now add school teacher to her roles of wife and mother.

Rev. Dr. Gloria White-Hammond, wife of Rev. Ray, remembers her mother-in-law fondly. “She was funny, really tough and believed in order,” she said.

“If she had been a white male she could have been a gazillionaire.”

Rev. Ray agrees and speaks of her compassion. He remembers she took a special interest in her school kids and provided emotional support as well as education.

“Whatever she did, she went beyond what was required of her,” he explained.

Eva’s first signs of dementia were noticed but did not cause concern. “She was forgetting more than usual,” explained Rev. Ray, but attributed it to normal aging. She got lost a couple of times but when found she did not seem distressed.

Surprisingly it was a piece of furniture that tipped off Rev. Ray that something more serious was amiss. During a visit to his mother’s home in Philadelphia, he noticed that the dining room table was cluttered with bills. “The dining room table was always clean,” he explained. He realized that his mother had lost the ability to organize her affairs — a stark difference from her typical behavior.

It was at that time the Hammonds had to face the realization that their mother was, in all probability, in the early stages of Alzheimer’s disease. “I didn’t want to think of it,” said Rev. Ray, but an evaluation at Thomas Jefferson University Hospital confirmed their suspicions.

Oddly enough, despite her limitations, Eva was the caretaker of two relatives with Alzheimer’s disease. Because of a strong support system, including neighbors, her church and family, she could still manage independently. For about six months one of the Hammonds — including their two children — or other relatives and friends, visited Eva every two weeks. The visits were supplemented by frequent telephone calls.

Things were holding together, according to the Hammonds, until Eva’s neighbors noticed her sitting on her enclosed porch in her night clothes for long periods of time.

It was clear at that point that independent living was no longer an option.

The relatives under Eva’s care were transferred to institutions. Eva herself was admitted to an assisted living program — a nightmare the Hammonds warned families not to repeat. The facility was not skilled in the management of people

Rev. Dr. Ray Hammond and Rev. Dr. Gloria White-Hammond

with dementia. Eva tried to escape and became belligerent. A second facility proved to be a godsend and in all probability saved her life. The thorough evaluation Eva received at the facility confirmed a diagnosis of colon cancer.

It was at that time the Hammonds brought her to live with them in Boston.

Both pastors are also doctors and had the means to handle her cancer as well as her dementia. It was hard on Eva in the beginning. “I felt pain for her,” Rev. Ray explained. “She could see the differences [in herself].”

With medication, Eva’s condition was fairly stable, but caretaking took a toll on the family. Rev. Ray had to curtail his travel schedule. Trips to the gym by Rev. Gloria became rare. Both became sleep-deprived. They had to wake every three hours to prevent bed wetting, which is common among people with AD. A lifesaver, according to Rev. Gloria, was a six-week course run by a local organization, which offered advice on identifying doctors as well as sources of legal help and personal care.

The Hammonds offer recommendations. “Families need to take the time to talk about care,” they said. “Find a place experienced with treating AD and know what’s out there in terms of services.” If it’s too hard to handle emotionally, get help from a religious leader.

Eva died on December 18, 2009.

The people who loved her remember her for who she was, not the disease that invaded her.

“Don’t fight over mama,” Rev. Ray said. “Take the time to plan who’s going to do what. It’s a long goodbye.” baystatebanner.com/news/be-healthy | Be Healthy 11

FOCUS: Alzheimer’s Disease

Searching for answers All groups should reap the benefits of clinical trials participation has historically been highly skewed to include mostly whites, men and those of higher income. Minorities, the elderly, women and those from rural areas are largely absent from these trials.

There are reasons for the gap, chief among them the higher degree of mistrust among African Americans.

It wasn’t that long ago in 1997 when President Bill Clinton apologized for the federal government’s role in the Tuskegee Experiment. Started in 1932, the 40-year experiment enlisted mostly illiterate sharecroppers in Alabama to participate in what they were told was a study on “bad blood.”

In reality, the study was on the ravages of syphilis, and the men were left to suffer its consequences even when a suitable treatment became available.

Unfortunately, the lingering mistrust still looms large.

But other barriers exist. Insurance may not pay for the study; the requirements can be time consuming and demand time away from work; transportation may not be available; and language differences present a problem.

For many, it is merely lack of awareness — people may not know that participation in a clinical trial is possible.

Part of the problem lies with the medical profession itself. Primary care physicians and those not affiliated with research institutions may not be aware of patient eligibility for clinical trials. Some physicians simply do not make referrals.

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More significantly, minority investigators, who may be more successful in attracting minority volunteers, are underrepresented in research.

Programs are in the works to increase participation by minorities and women. On a national level, the National Institutes of Health now requires researchers to design strategies to include underrepresented groups. Medicare authorized payment of routine costs back in 2000 for Medicare recipients who participate in clinical trials.

Yet, even years after the implementation of these efforts, a report by researchers at the University of California, Davis found that fewer than 5 percent of trial participants are non-white. The percentage is even lower for cancer research.

While the incidence of cancer is highest among minorities, their participation in trials for cancer is only 1.3 percent.

For the record, anyone can participate in a clinical trial if he or she meets the specific inclusion criteria, such as age, gender, extent or type of disease, previous treatment and other medical conditions.

The potential benefits are enormous: a person can play a more active role in his or her health care; have access to new treatment before it is made available to the general public; and obtain closely monitored expert medical care.

And they can make a major contribution to science in order to help others.

But there are obvious risks as well.

Unpleasant side effects are always a possibility. The experimental treatment may not be effective.

Clinical trials are conducted in four sequential phases. Phase I trials test the safety of a new treatment, while Phase II trials test the effectiveness of that treatment.

If the results look promising, Phase III trials then determine whether the experimental treatment is better than the current standard treatment. At its completion, the research team can request approval by the Federal Food and Drug Administration to make the treatment being tested available to the public.

In some instances, a Phase IV is added to continue to monitor the long-term effect on people who use the experimental treatment even after federal approval.

Safety measures Stringent guidelines for clinical trials are in place to protect the safety of volunteers. The Data Safety Monitoring Board oversees safety data and warns researchers and participants if they notice a trend towards excessive risk. The research plan — or protocol — is reviewed by the federally mandated Institutional Review Board (IRB), a group of health

PHOTO: SHUTTERSTOCK/MONKEY BUSINESS

TAKING PART IN A CLINICAL TRIAL IS VOLUNTARY. But

FOCUS: Alzheimer’s Disease

WILL IT WORK FOR YOU? Make sure you understand and are comfortable with a clinical trial if offered to you. A research team will oversee the study. Ask a few questions … n What is the purpose of the study? n Has it been tested before?

If so, what were the results? n Who is sponsoring the study? n What tests and procedures are involved? n What are the possible risks, side effects and benefits? n How might this trial affect my daily life? n Will hospitalization be required? n How often will I have to visit the hospital or clinic? n Who will pay for the experimental treatment?

n How long will the trial last? n Will I be reimbursed for other expenses? n What type of long-term follow-up care is part of this study? n Will results of the trials be provided to me? n Who will be in charge of my care? n If someone else in the study has an unexpected side effect, will you tell me? n Can I withdraw from the study? n Is it possible that I will be given a placebo instead of the drug under study?

Source: National Institutes of Health

RESOURCES Looking for Studies on Alzheimer’s Disease? n A4 study for Alzheimer’s prevention 617-278-0379 n Harvard Aging Brain Study 617-643-0143 n Memory & Aging Study 617-643-5200 n Center for Alzheimer Research and Treatment 617-732-8085

professionals, statisticians and laypersons.

The IRB monitors the progress of the trials, checks for side effects and can request periodic modifications. Most important, the board can terminate the trial if preliminary results are not satisfactory.

Without clinical trials, advances in medicine could not be made. Today’s standard treatments are yesterday’s clinical trials. For instance, women who are now candidates for breast-conserving treatment for breast cancer were once instead

subjected to complete removal of the breast.

The egregiousness of the Tuskegee study is not debatable. Much damage was done. But not participating in clinical trials could be equally damaging. When research is conducted on whites only, medical experts argue, doctors are forced to assume that the results are transferable to all people.

But that is not always a correct assumption.

Everyone should be included in a clinical trial.

When a group is excluded, that group loses.

Memory & Aging Study African American participants ages 60 to 90 wanted for a research study on how memory changes over time n People with or without memory problems are eligible n One visit of 2 hours once per year n Complete evaluation of your memory n Must have someone close to you to participate with you n $40 per yearly visit n Parking reimbursed and meal coupon provided For more information about this study

call 617-643-5200

& say “I saw it in the Banner!”

Massachusetts General Hospital Department of Neurology Boston, MA 02114

baystatebanner.com/news/be-healthy | Be Healthy 13

FOCUS: Alzheimer’s Disease

A test of memory Studies to find AD early YVONNE GITTENS, 68, MAY HAVE RETIRED FROM MIT, BUT SHE HAS NOT RETIRED FROM LIFE. She works part-time as an advisor to middle school girls

Jean Rose (r) and her daughter Christine

THE A4 STUDY – ALZHEIMER’S PREVENTION JEAN ROSE HAS TAKEN MORE THAN HER FAIR SHARE OF TESTS. She trained as a paralegal, a certi-

in Cambridge. And if you look quickly, you can catch a fleeting glimpse of her on public transportation. Gittens is also a senior model, whose face adorns the side of MBTA buses.

fied nursing assistant, and she is currently pursuing a degree in business at Bristol Community College.

Gittens credits the Community Conversations: Sister to Sister program for her participation in a study to identify individuals who are at risk of developing Alzheimer’s disease.

Community Conversations: Sister to Sister, which meets monthly in Cambridge, is a community-based initiative developed to empower women to take charge of their health and the health of their families.

“I am doing this for my daughters,” she explained.

Although, according to Gittens, there is no history of AD in her family, the disease is prevalent in her husband’s family. The risk of developing AD appears to be higher if a parent or sibling is afflicted.

At this particular session the Harvard Aging Brain Study was presented. This study uses yearly memory tests and brain scans to detect the earliest changes in memory and the brain that signal the transition from normal cognition to progressive deterioration in cognition. People aged 50 to 90 of normal cognition are eligible to participate.

Gittens said she had no

But one particular set of tests she took recently she really wanted to ace. Rose, 65, participated in the Anti-Amyloid Treatment in Asymptomatic Alzheimer’s study — A4 for short. The A4 study is a landmark clinical trial to prevent memory loss from Alzheimer’s disease.

The first part of the evaluation to test her memory she thinks she passed with flying colors. “They ask you a lot of questions,” she explained, to test her memory. For instance, the evaluators read her a story and asked her questions about the content.

She was instructed to count back from 100 by 7’s. They checked her heart and took blood and urine samples to make sure she is healthy.

What’s different about the A4 study is that the researchers are looking for people between the ages of 65 to 85 who have normal thinking and memory abilities.

According to Rose, there is no history of AD in her family. Yet, she sees it every day. As a certified nursing assistant she is the caretaker

14 Be Healthy | Spring 2015

Yvonne Gittens

reservations in taking part.

“You’re in control,” she explained. “If something doesn’t feel right, you can stop at any time.”

There is always the possibility that during the fiveyear span of the study, decline in memory and tell-tale signs of AD will be found.

Gittens remains positive. “I don’t dwell on that,” she said.

“What scares me more is not finding it [AD] early.”

She remains altruistic. “It might not help me,” Gittens explained. “But perhaps I can help someone else.”

For information on the Harvard Aging Brain Study, contact Tamy-Fee at 617643-0143.

of patients with the disease and is witness to the damage it causes. “One can’t speak,” she said.

Rose said the Tuskegee Experiment in which black men were denied treatment that could potentially cure their disease did not prevent her participation. She looked beyond that. “[These experiments] are why we have advanced in medicine,” she explained.

Rose recently discovered that she does not qualify for the trial. Her PET scan — the final part of the evaluation — was negative. To qualify for the study, the participant must have normal memory but also some evidence of plaque in the brain.

The scan is able to detect the existence of plaque, which is a precursor to the disease.

That’s good news. At least for now Rose seems free of AD. But it won’t discourage her from participating in another study on memory.

“I like to help people,” she explained.

For more information on the A4 study, call 617732-8085.

PHOTOS: (LEFT) COURTESY YVONNE GITTENS; (RIGHT) ERNESTO ARROYO

HARVARD AGING BRAIN STUDY

FOCUS: Alzheimer’s Disease

Family caregivers They give assistance and they need assistance LIFE EXPECTANCY IN THIS COUNTRY IN 2010 WAS 78 YEARS, AN INCREASE OF MORE THAN 30 YEARS SINCE 1900. The extended years undoubtedly have brought some good times, but they also ushered in a number of chronic illnesses, including high blood pressure, cancer, stroke … and Alzheimer’s disease.

Caregivers are often needed to help patients with these diseases, but AD carries a heavier toll than others. It has spurred the growth of a large network of informal, or personal, caregivers. Those who care for people with dementia are more likely to provide care for five years or longer and they suffer substantial economic difficulties as a result.

Some caregivers have to decrease work hours on the job, turn down promotions or stop working altogether. The consequences are loss of wages, health insurance, retirement savings and even Social Security benefits.

Females assume the brunt of the work. Two-thirds of the caregivers are women, and one-third takes care of two or more people.

Females do more personal care, including bathing, dressing and toileting, while men focus more on financial affairs.

Older adults are not exempt from this task. The average age of people who care for someone older than 65 is 63. Additionally, the number of hours dedicated to caregiving increases with age. Those between the ages of 65 and 74 devote almost 31 hours a week to taking care of someone. That’s largely because older adults are caring for their elderly spouses.

The economic impact of family caregiving is sizeable. According to a study by the Rand Corporation, a think tank in California, family members and friends spend an estimated 30 billion hours each year caring for the elderly at a cost of roughly $522 billion a year. This cost is an estimate of income lost during the time that unpaid caregivers spend on eldercare.

African Americans are hit particularly hard. A study recently published by the African American Network Against Alzheimer’s determined that the value of personal caregiving exceeded all other costs of care for blacks with AD, at almost $44 million dollars in 2012. That estimate is expected to rise as life expectancy for blacks — and particularly black females — is on the increase.

It’s not just economics that poses a problem. Caregivers have to become experts in understanding AD and what it does to its victims. The Alzheimer’s Foundation of America found that

people were aware of — and expect — the change in cognition, but were not always prepared for the behavioral changes, such as aggressiveness and hallucinations. It was often the behavioral changes that drive caretakers to seek advice from mental health professionals.

The National Institute on Aging has developed an easy-touse guide to help people taking care of someone with AD. It offers advice on such issues as coping strategies, sources of paid help, legal advice and planning for the future. For instance, the guide suggests tips on how to improve communication with someone with AD. Problems with communication can be one of the first symptoms of AD to surface. As an example, instead of asking what he or she wants to eat for dinner, limit the choices.

“Do you want hamburger or chicken for dinner?” is an easier question to answer, as it offers just two selections. Keep things simple, the guide recommends. Follow a daily routine. More than anything — take a step back when things get too tough.

And that is part of the problem. The caregiver often needs care as well. MetLife compared medical care costs between non-caregivers and caregivers and found that depression, diabetes and heart disease, for example, were more prevalent among caregivers — particularly those between the ages of 18 and 39 — at a cost of $13.4 billion dollars a year to U.S. companies.

The NIA caregivers guide can be found at www.nia.nih. gov/sites/default/files/caring-for-a-person-with-alzheimersdisease.pdf.

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FOCUS: Facts and figures

65 The risk of Alzheimer’s doubles every five years after the age of 65

5.4

1⁄₂

People aged 85 years and older have a 5.4 times greater risk of dying from AD than people 75 to 84 years.

Almost half of nursing home residents have been diagnosed with AD or other dementias.

84,000 26,000

In 2010, Alzheimer’s disease was the underlying cause for almost 84,000 deaths and the contributing cause for an addition 26,000 deaths.

The Family Caregiver Support Program of Boston offers caregivers assistance and support to ease the strain and reduce the challenges of caregiving - at no cost to the caregiver.

(617) 292-6211

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Boston ElderInfo 617-292-6211 16 Be Healthy | Spring 2015

Healthy Steps Eat right, stay active, live well » Nutrition 18 » Recipes 20 » Fitness 22

Fit body; fit brain There is no guarantee that healthy lifestyles will prevent or stop Alzheimer’s disease. Scientists believe, however, that healthy habits that keep the body fit also help keep the brain fit.

To stay healthy the National Institute on Aging recommends: » Exercise regularly » E at a diet rich in fruits, vegetables and whole grains » Do not smoke » Maintain a healthy weight » Control type 2 diabetes » C ontrol blood pressure and cholesterol levels » E ngage in social and intellectually stimulating activities »G et treatment for depression

Recipe:

Salmon Kebabs with Creamy Tzatziki Sauce (right)

21 baystatebanner.com/news/be-healthy | Be Healthy 17

HEALTHY STEPS: Nutrition

BY: KATHY

CUNNINGHAM, M.ED., R.D., L.D.

Another reason to eat your fruits and veggies Foods rich in flavonoids could enhance brain function THERE IS NO GUARANTEE THAT HEALTHY EATING CAN STAVE OFF ALZHEIMER’S DISEASE. If it did, undoubtedly there would be a run on fruits and vegetables, fish, nuts and whole grains. AD is one of the most feared diseases. Yet, several studies suggest that eating certain foods and vitamins can help delay or reduce the risk of dementia.

The prevalence of AD will continue to rise as the population ages. Medications approved for its treatment modify the symptoms of the disease, but not the underlying cause. It may be prudent to consider attacking AD through a multi-pronged approach that includes pharmaceuticals, lifestyle changes and dietary intervention.

Of particular interest is a group of antioxidants called flavonoids. Antioxidants are compounds that help prevent 18 Be Healthy | Spring 2015

free radicals, which are errant molecules that can damage cells, including brain cells. Flavonoids are known for their rich colors and are plentiful in blueberries, cherries and red wine, for example.

A good rule of thumb is that the more colorful a fruit or vegetable, the higher the level of flavonoids.

Less well known, however, is that flavonoids have broad potential and ability to preserve and enhance brain function.

In a study published in the Annals of

Neurology, researchers from the Nurses’ Health Study found that greater intakes of blueberries and strawberries resulted in delayed cognitive aging by up to two and a half years.

The effectiveness of flavonoids for brain health is not a new concept. Ancient China used ginko biloba, a flavonoid-rich herb, for its cognitive benefits.

There is good scientific evidence today to suggest that ginkgo biloba herb supplements help support memory.

Vitamins provide another avenue for brain health. The Oxford Project to Investigate Memory and Aging discovered that elderly adults with low vitamin B12 levels had more than four times the usual risk of AD. It is thought that low levels of vitamin B12 combined with high levels of an amino acid (building block of protein) called homocysteine, contributes to plaque formation. Plaque is considered a forerunner to AD. Vitamin B12 is found in seafood like oysters, mussels, fish, shrimps and scallops and red meat, particularly liver. Vegetarians and vegans can get vitamin B12 from seaweed, yeasts and fermented foods like miso and tempeh.

However, the levels in these foods are lower than levels in meat products.

Another B vitamin, folate, which is closely linked with birth defects, is also associated with dementia. It’s been found that individuals who were folate deficient were three-and-a-half times more likely to develop a decline in cognition.

To increase your folate intake, try adding asparagus to your meals. One cup of these dark green spears will provide you with about 66 percent of your daily folate needs. Other great sources are citrus fruits, broccoli, cauliflower, beets, lentils and leafy green vegetables such as spinach, kale, collard and turnip greens.

Vitamin D may play a role as well.

Vitamin D, known as the sunshine vitamin, is one nutrient that is not readily available from foods so supplementation is recommended.

Generally, fats are considered unhealthy, but fatty acids are ones you should not avoid. Omega-3 fatty acids, found in oily fish, are well known to have numerous health benefits, including protection against heart disease.

HEALTHY STEPS

The effectiveness of flavonoids for brain health is not a new concept.

Ancient China used ginko biloba, a flavonoid-rich herb, for its cognitive benefits.

PHOTO: THINKSTOCK/DIGITAL VISION

Researchers at Tufts University might have stumbled on another benefit. They discovered that those who consumed an average of three servings of oily fish a week had almost a 50 percent lower risk of dementia and AD than those who ate less fish. Salmon and sardines are very good sources of omega-3.

People who do not eat fish are in luck.

Walnuts and flaxseeds are very high in omega-3, as are dark green leafy vegetables and cruciferous vegetables, like cauliflower and Brussels sprouts. Those not enticed by nuts and veggies can take vegan omega-3 supplements.

The bottom line is that healthy eating can go far to reduce the risk of numerous chronic illnesses. Several investigations into the development of cognitive-related conditions suggest that individuals with the highest dietary intake of fruits and vegetables, fish, nuts and vitamin D have a measure of protection against the development of cognitive dysfunction.

Those with a family history of AD who want to protect the grey matter of their brain as they age should consider consuming more foods which contain nutrients that support their overall good health. baystatebanner.com/be-healthy | Be Healthy 19

PHOTO: COURTESY OF NATIONAL HEART, LUNG, AND BLOOD INSTITUTE

HEALTHY STEPS: Recipes

20 Be Healthy | Spring 2015

HEALTHY STEPS: Recipes

Autumn salad

THIS IS A SIMPLE AND HEALTHY SALAD from the cookbook

Heart Healthy Home Cooking African American Style published by the National Heart, Lung, and Blood Institute. The prevailing theory is that there is a connection between heart health and brain health.

This recipe combines fruit and lettuce greens with nuts and seeds. Walnuts are an excellent source of omega-3 fatty acids, which have been found to lower the risk of Alzheimer’s disease. They also contain fiber, protein,

iron, vitamin B6 and magnesium, which aids in bone strength and normal heart rhythm.

The lettuce greens provide folate, a B vitamin which, especially when combined with vitamin B12, may reduce the risk of AD. The salad is also high in potassium and low in sodium, which helps maintain normal blood pressure. High blood pressure is the leading cause of stroke, which can result in vascular dementia.

Source: Heart Healthy Home Cooking African American Style

INGREDIENTS

DIRECTIONS

n 1 medium Granny Smith apple, sliced

1. Sprinkle lemon juice on apple slices.

2. Mix the lettuce, cranberries, apple, walnuts and sunflower seeds in a bowl.

3. Toss with 1⁄3 cup of raspberry vinaigrette dressing to lightly cover the salad.

thinly (with skin) n 2 tbsp. lemon juice n 1 bag (about 5 cups) mixed lettuce greens (or your favorite lettuce) n ½ cup dried cranberries n ¼ cup walnuts, chopped n ¼ cup unsalted sunflower seeds n 1 ⁄3 cup low-fat raspberry vinaigrette dressing

* Makes 6 Servings

NUTRITIONAL ANALYSIS PER SERVING (1 cup): n Calories: 138 n Total Fat: 7 g n Saturated Fat: 1 g

n Cholesterol: 0 mg n Sodium: 41 mg n Total Fiber: 3 g

n Protein: 3 g n Carbohydrates: 19 g n Potassium: 230 mg

Salmon Kebabs with Creamy Tzatziki Sauce THIS SIMPLE AND FLAVORFUL RECIPE combines salmon, which is high in omega-3 fatty acids with garlic, spices and fresh vegetables. The recipe is from Simple Cooking with Heart, a program of the American Heart Association.

Source: American Heart Association’s Simple Cooking with Heart® Program (heart.org/simplecooking)

NUTRITIONAL ANALYSIS PER SERVING: n Calories: 240 n Total Fat: 10.0 g n Saturated Fat: 1.5 g n Trans Fat: 0.0 g n Polyunsaturated Fat: 1.5 g n Monounsaturated Fat: 5.0 g n Cholesterol: 53 mg n Sodium: 112 mg n Carbohydrates: 7 g n Dietary Fiber: 1 g n Total Sugars: 5 g n Protein: 30 g

INGREDIENTS n 1 lb. salmon cut into 1" x 1" pieces n 4 tsp. extra virgin olive oil n ½ tsp. fresh oregano or ¼ tsp. dried oregano n 1 clove fresh garlic or ½ tsp. jarred, minced garlic n 1 tsp. fresh or jarred lemon juice (half of a lemon) and ¼ tsp. lemon zest n 1 small bell pepper (any color) n 1 small red onion n 2 cup mushrooms

n 8 wooden skewers n Aluminum foil

Creamy Tzatziki Sauce n 1 cup fat-free, plain Greek yogurt n ¾ tsp. fresh, or jarred lemon juice n 1 tsp. fresh, coarsely chopped dill or ¼ tsp. dried dill

n 1 tsp. fresh oregano or ½ tsp. dried oregano n 1 ⁄3 cup cucumber (½ cucumber) n ¼ tsp. honey n ¼ tsp. black pepper

DIRECTIONS (Total time: 40 min.)

1. Whisk together 2 tsp. olive oil, oregano, garlic, lemon juice and zest. Add salmon and let marinate for about 10 minutes.

2. To make tzatziki sauce, stir together yogurt, lemon juice and zest, dill, oregano, cucumber, honey and pepper.

3. Toss vegetables in remaining olive oil and assemble each skewer with 3 pieces of salmon, alternating between vegetables.

4. Heat grill-pan or sauté pan. Over medium heat, add skewers to pan, cover loosely with foil. You may have to cook in two batches of 4 skewers. Cook 2-3 minutes on each side.

5. Serve immediately with a dollop of tzatziki sauce. * Makes four servings at $4.04 a serving baystatebanner.com/news/be-healthy | Be Healthy 21

HEALTHY STEPS: Fitness

Get active!

Exercise can help ease some Alzheimer’s symptoms

THE PHYSICAL ACTIVITY GUIDELINES FOR AMERICANS ARE PRETTY CLEAR. They recommend that adults 18 years and older get at least 150 minutes a

Unfortunately, not many people are paying attention. In 2012 only 20 percent of adults in this country met the guidelines, according to a report by the Centers for Disease Control and Prevention. The good news is that half followed the recommendations for aerobic physical activity. Apparently, it’s the weight lifting part that people avoid.

Yet, physical activity has shown to prevent or minimize the risk of a myriad of chronic conditions, including high blood pressure, type 2 diabetes, heart disease, obesity and even some cancers.

It benefits the brain as well. Physical activity stimulates the growth of new blood vessels in the brain, which provide energy and nourishment. It also increases levels of a protein growth factor called brain-derived neurotrophic factor — BDNF for short — which protects the health of brain cells.

These changes also strengthen communication between brain cells.

But they do a lot more.

It’s well known that exercise can increase muscle size, but certain parts of the brain bulk up as well. Several studies have shown that regular moderate-intensity exercise for extended periods of time increases the volume of the hippocampus. It is the hippocampus that is responsible for memory and cognition, and a part of the brain that is severely impacted by Alzheimer’s disease.

The increase in volume is largely attributed to higher levels of blood flow and protein growth factors. All these factors work in concert to protect against cognitive decline.

22 Be Healthy | Spring 2015

There is no guarantee that taking a brisk walk around the block will stave off AD or another form of dementia, but the benefits are undebatable.

The Physical Activity Guidelines apply to those with AD as well. Exercise helps ease some of its symptoms, improves mood and helps people sleep better and feel more alert during the day.

The type of exercise that works best depends on individual symptoms, fitness level and overall health. While gardening and walking are preferable for some, swimming, yoga and tai chi may work better for others.

Stefan Mogielnicki, a certified exercise physiologist with Forever Fit LLC, works mostly with people with AD. He admits it’s a bit of a challenge.

“You have to use a different approach,” he explained, “because reasoning and judgment are often diminished and memory is impaired.” For instance, he has modified his communication to validate instead of correct his patients when they confuse the past with the present. In utilizing this technique, he redirects their attention away from those thoughts toward exercise participation.

Repetitive activities like full range of motion exercises are easier to achieve since they require less concentration. He makes use of fitness equipment — weights, resistance bands and even medicine balls, and a whole lot of encouragement.

His 40-minute regimen focuses on activities for strength, endurance and balance.

One-third of adults aged 65 and older fall each year, according to the CDC. Falls due

PHOTO: THINKSTOCK/ STOCKBYTE

week of moderate-intensity exercise, such as brisk walking, as well as two or more days a week of muscle-strengthening exercises that work all muscle groups.

HEALTHY STEPS: Fitness

Stefan Mogielnicki, M.Ed., A.C.S.M. – EP-C

to poor balance are common among people with AD and a leading cause of death.

Mogielnicki explained that the best times to exercise are between 9 a.m. and 3 p.m. “Those are the peak times for cognition,” he said.

“After 4 p.m., the sundowning effect begins.” Sundowning, or the sundown syndrome, is a state of confusion

that occurs at the end of the day and into the evening. The syndrome, which effects up to 20 percent of people with AD, causes agitation, wandering and even aggression.

Exercise makes the sundown syndrome less severe.

Although it might take patients a little longer to complete the exercise programs, Mogielnicki can see improvement. “They have more energy,” he explained. “They are cognitively more alert.”

He has to be alert as well.

“Some people wander away during exercise,” he said.

The good news is that it is never too late to start an exercise program — even for those with AD. “No question about it,” said Mogielnicki. “By implementing exercise, you prevent further deterioration.”

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We are studying a treatment to prevent Alzheimer’s while the mind is still bright.

Brigham and Women’s is on the cutting edge of discovery.

Our researchers are leading the first study to examine early treatment of older adults at risk for Alzheimer’s disease – with the hope of preventing memory loss before it begins. The clinical trial is for people without symptoms but whose brain scans show the buildup of amyloid plaques that may lead to Alzheimer’s disease. This breakthrough is just one of many that are improving lives here and around the world.

Download our white paper or watch our video on “Early Detection and Prevention of Alzheimer’s Disease” at BrighamAndWomens.org/Alzheimer.

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