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Wednesday, November 4, 2015 | Livingwella-z | 5
PRESENTED BY LIVINGWELL A-Z AND THE ALZHEIMER'S ASSOCIATION DESERT SOUTHWEST CHAPTER
UNDERSTANDING ALZHEIMER’S What it is, what it’s not, where to get help
By Paula Hubbs Cohen
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he most common form of dementia, Alzheimer’s accounts for 60 percent to 80 percent of dementia cases. Symptoms of the disease, which causes significant problems with memory, thinking and behavior, usually develop slowly and get progressively worse. “As symptoms progress into the later stages of the disease, motor function deteriorates and round-the-clock care is necessary,” said James Fitzpatrick, MAS, program and advocacy director for the Alzheimer’s Association, Desert Southwest Chapter. “Currently, with no treatments to cure or delay the disease, Alzheimer’s is fatal.”
What it’s not As important as it is to know what Alzheimer’s is, it is equally important to note what Alzheimer’s is not. To wit: • Alzheimer’s is not a normal part of aging.
• It’s not occasionally forgetting where you put your car keys. • It’s not having a so-called ‘senior moment’. What’s more, Alzheimer’s is not just a disease of old age. In fact, up to 5 percent of people with the disease have younger-onset Alzheimer's (also known as early-onset, not to be confused with early-stage Alzheimer’s) which often appears when someone is in their 40s or 50s. That said, the greatest known risk factor is increasing age and the majority of people with Alzheimer's are 65 and older.
Early diagnosis critical According to Fitzpatrick, fewer than 50 percent of individuals with Alzheimer’s actually get a diagnosis from a physician, therefore, being aware of the signs of Alzheimer’s or other dementia is highly important if a person is worried about their cognitive health.
“Being forgetful, losing track of time, forgetting a word or having vision problems are signs someone with Alzheimer’s may experience. However, someone can also experience these things due to fatigue, depression, lack of sleep, change in eyesight or as a medication side effect,” he said. “It’s the severity of the signs — not just the signs themselves — one needs to look at.” Fitzpatrick added that early diagnosis is critical so that individuals and families can seek out medical and support services immediately, providing the person with Alzheimer’s the opportunity to make financial and legal plans. “This allows the person with the disease the opportunity to make their life their own with the dignity to make personal choices for the present and future,” he said.
Help is available The Desert Southwest Chapter of the Alzheimer’s Association provides
a wealth of free, local services and support to help individuals and families facing a wide range of dementia disorders including but not limited to Alzheimer’s. From support groups to caregivers’ educational classes to research partnerships with some of the country’s most renowned scientists and physicians, the Chapter’s goal is to empower and support individuals, families, care-partners and communities affected by dementia throughout Arizona and southern Nevada. “With the support of a 24/7 Helpline, one-on-one family care consultation and early-stage programming, the Chapter provides a wide array of supportive services,” Fitzpatrick said. “In addition, we work hand-in-hand with researchers conducting a plethora of clinical trials designed to discover better ways to treat, delay and — hopefully — to eventually prevent this debilitating disease.”
Sandy Wallace of Just For You Salon and Spa in Tempe gives Marianne Mitchell a trim, style and coloring, a regular part of Marianne's day out with her husband Harry Mitchell. Harry had been his wife's primary caregiver up until recently when he realized her Alzheimer's disease had advanced to where she needs fulltime attention. "She's adjusted better than me" he said of moving her to a residential facility. He wants to continue at least some parts of their past routine, so every Saturday, they go to the hair salon and out for a hamburger. Rick D’Elia
WHEN HARRY MET MARIANNE
A love story with a long goodbye By Paula Hubbs Cohen
Personality-plus
M
arianne and Harry. Harry and Marianne. For more than five decades, the names have been intertwined. But now, Alzheimer’s disease is stealing Marianne Mitchell from her husband, Harry. If Harry’s name sounds familiar, it’s because he taught government at Tempe High School (his alma mater) from 1965 until 1992, including one year at McClintock High School. He served on the Tempe City Council from 1970 to 1978 and was mayor of Tempe from 1978 to 1994. He subsequently served as an Arizona state senator (1999 to 2006) as well as a U.S. Congressman from 2007 to 2011. But lately, Harry has faced the toughest job of his life: as caregiver for Marianne, his bride of 53 years, who has Alzheimer’s.
The summer of 1957 It was the summer of 1957. Jukeboxes around the country were playing the latest hits from Elvis Presley, Pat Boone, Debbie Reynolds and the Everly Brothers. And here in the Phoenix area, Marianne Prevratil and Harry Mitchell were getting ready to start their senior years in high school
Mitchell family photo
— Marianne at North High and Harry at Tempe High. As fate would have it, a friend set the two teenagers up on a blind date — things must have gone pretty well because they dated steadily for the next five years before tying the proverbial knot in 1962.
“We lived our entire married life in Tempe in the first and only house we ever purchased,” Harry said. “We have two children, Amy (a third-grade teacher) and Mark (current mayor of Tempe) and five grandchildren who also live in Tempe.”
Harry said that Marianne has always been very outgoing and social. “She liked people and never really met a stranger,” he said. “She’s been pretty adventurous and enjoyed volunteering for projects and causes. She also liked to travel, which we’ve done to a number of foreign countries.” Marianne also loved children and truly loved teaching, in fact, she taught high school business classes for 35 years. “In addition, she was always active in my political campaigns — collecting signatures, speaking on my behalf, knocking on doors and attending rallies, parties and speeches,” Harry said. “She also loved to dance, taking lessons and never missing an opportunity to dance in a program either as a student or as an adult.” Harry added that when he first met Marianne, she was a cheerleader at North Phoenix High School and later attended Phoenix College on a cheerleading scholarship before moving on to ASU. Proud Sun Devils, both Marianne and Harry graduated from Arizona State University in 1962. MARIANNE, continued on page 9
6 | Livingwell a-z | Wednesday, November 4, 2015
UNDERSTANDING ALZHEIMER’S » More than 5 million Americans are living with Alzheimer’s and as many as 16 million will have the disease in 2050.
10 classic warning signs of Alzheimer’s
A
s we age, most people eventually notice some slowed thinking and occasional problems with remembering certain things. However, serious memory loss, confusion and other major changes in the way our minds work may be a sign of Alzheimer’s disease. As Alzheimer's advances, it leads to increasingly severe symptoms including disorientation, mood and behavior changes, and deepening confusion about events and situational experiences such as time and place. The disease also often leads to unfounded suspicions about family, friends and caregivers, along with difficulty speaking, swallowing and walking. TYPICAL AGE-RELATED CHANGE: Occasionally needing help to record Warning signs a television show. Here are the ten classic warning Confusion with time or place: signs of Alzheimer’s; individuals Having trouble understanding may experience one or more of these something if it is not happening symptoms in different degrees. immediately; forgetting where they are or how they got there. Memory loss that disrupts daily TYPICAL AGE-RELATED CHANGE: Getting life: Forgetting recently learned confused about the day of the week information, important dates or but figuring it out later. events; repeatedly asking for the same information; increasingly Trouble understanding visual relying on memory aids or family images and spatial relationships: members for things that used to be Having difficulty reading, judging handled on his or her own. distance and determining color or TYPICAL AGE-RELATED CHANGE: Sometimes contrast; this can cause problems forgetting names or appointments with driving. but remembering them later. TYPICAL AGE-RELATED CHANGE: Vision Challenges in planning or solving changes related to cataracts. problems: Experiencing changes in the ability to develop and follow a New problems with words in plan or work with numbers; having speaking or writing: Having trouble following a familiar recipe trouble following or joining a or keeping track of monthly bills. conversation; stopping in the TYPICAL AGE-RELATED CHANGE: Making middle of a conversation and being occasional errors when balancing unable to continue; frequently a checkbook. repeating themselves. Struggling with vocabulary; having problems Difficulty completing familiar tasks. finding the right word; calling things Having trouble driving to a familiar by the wrong name. location or remembering the rules of TYPICAL AGE-RELATED CHANGE: Sometimes a favorite game. having trouble finding the right word.
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Diagnosing Alzheimer's There is no one test to determine if someone has Alzheimer’s. Doctors make their diagnosis based on medical history, physical examination, laboratory tests and being cognizant of the changes in thinking, day-to-day function and behavior associated with the disease. Although current treatments cannot cure or stop Alzheimer's from progressing, they can temporarily slow the worsening of symptoms and improve the quality of life for those with Alzheimer's and their caregivers. Thinkstock
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Misplacing things and losing the ability to retrace steps: Putting things in unusual places; losing things and being unable to go back over their steps to find them again. This sometimes leads Alzheimer’s patients to accuse others of stealing. TYPICAL AGE-RELATED CHANGE: Occasionally misplacing things.
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Decreased or poor judgment: Experiencing changes in judgment or decision-making; paying less attention to grooming or cleanliness. TYPICAL AGE-RELATED CHANGE: Making a bad decision once in a while.
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Withdrawal from work or social activities: Removing themselves from hobbies, social activities, work projects or sports. TYPICAL AGE-RELATED CHANGE: Sometimes feeling weary of work, family and social obligations.
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Changes in mood and personality: Becoming easily upset, confused, suspicious, depressed, fearful and/or anxious. TYPICAL AGE-RELATED CHANGE: Developing specific ways of doing things and becoming irritable when a routine is disrupted.
Resources ALZHEIMER’S ASSOCIATION (Na onal organiza on): alz.org; 800-272-3900 ALZHEIMER’S ASSOCIATION, DESERT SOUTHWEST CHAPTER alz.org/dsw; 602-528-0545 (Phoenix office) AREA AGENCY ON AGING, REGION ONE aaaphx.org; 602-264-HELP (4357); 888-783-7500; TTY/TDD 602-241-6110 ARIZONA HEALTHCARE COST CONTAINMENT SYSTEM (Arizona’s Medicaid system) AZahcccs.gov; 602-417-4000; 800-654-8713 (outside Maricopa County) ELDERCARE LOCATOR A service of the U.S. Administra on on Aging with informa on about services for older adults: ElderCare.gov; 800-677-1116 NATIONAL ACADEMY OF ELDER LAW ATTORNEYS NAELA.org; 703-942-5711 NATIONAL COUNCIL ON AGING NCOA.org; 571-527-3900
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Wednesday, November 4, 2015 | Livingwella-z | 7
UNDERSTANDING ALZHEIMER’S » Many people have memory loss issues — this does not mean they have Alzheimer's or another dementia.
8 myths and realities of Alzheimer’s Myth 1
Myth 4
Myth 6
Alzheimer’s and memory loss are a natural part of aging
There are treatments available to stop the progression of Alzheimer's
Head injuries can lead to Alzheimer's
REALITY: Occasional memory loss can be a normal part of aging, however, Alzheimer's is much more than occasional memory loss. It's a disease that causes brain cells to malfunction and ultimately die. When this happens, an individual will not only often eventually forget the name of their spouse and their children, they may very well not remember they even had a spouse or children. They will become unable to communicate and often undergo extensive personality and behavioral changes.
Myth 2 Alzheimer’s disease is not fatal REALITY: Alzheimer's destroys brain cells and causes memory changes, erratic behaviors and loss of body functions. It is a progressive disease that affects the brain and in the later stage affects motor functions including eating and swallowing. Although there are medications that can potentially slow the symptoms for some individuals, Alzheimer’s is the only chronic disease in the top 10 that has no known treatment to delay or stop the progression of the disease nor treat it. This disease has no survivors.
Myth 3
REALITY: Unfortunately, there is no treatment to cure, delay or stop the progression of Alzheimer's disease. However, FDA-approved drugs can sometimes temporarily slow worsening of symptoms for about 6 to 12 months (on average) for about half of the individuals who take them.
Myth 5 Alzheimer's disease is genetic
REALITY: Studies have shown that Alzheimer's disease is common in people who have been impacted by a traumatic brain injury, also known as TBI. However, there is no clear evidence as to how or why such brain injuries are related to Alzheimer's.
Myth 7 Who was Dr. Alois Alzheimer?
Flu shots increase the risk of Alzheimer’s
REALITY: Several years ago, a theory REALITY: In some cases that is true, linking flu shots to an increased however it’s in the low 5 percent of risk of Alzheimer’s disease was those diagnosed. If a person carries proposed by a doctor whose license the gene for Alzheimer's, it is not was suspended by the South Carolina a determining factor in actually Board of Medical Examiners. Several developing the disease, nor does it mainstream studies link flu shots and provide an exact time when someone other vaccinations to a reduced risk will develop the disease if they even of Alzheimer's disease as well as to do. Beyond these limited genetic overall better health. factors, there is no known cause as to why some people develop Alzheimer's disease, therefore there is no known way to avoid getting it. While some studies have shown that Aluminum, as well as living a healthy lifestyle, eating right metal dental fillings, and exercising can be beneficial, can lead to Alzheimer’s age is the most common factor in REALITY: Studies have failed to confirm developing the disease. The bottom any role for aluminum in causing line: If you have a brain, you can get Alzheimer’s. Likewise, according to Alzheimer’s. the best available scientific evidence, there is no relationship between dental fillings and Alzheimer's.
Myth 8
Only older people get Alzheimer's REALITY: While the most common factor related to those with Alzheimer’s is age, younger-onset Alzheimer's can — and does — strike people in their 50s, 40s and even 30s. In fact, of the more than 5 million people living with Alzheimer’s in the U.S., approximately 200,000 of them are younger than age 65.
“Those with Alzheimer's live an average of eight years after their symptoms become noticeable to others, but survival can range from four to 20 years depending on age and other health conditions.” — James Fitzpatrick, MAS, program and advocacy director for the Alzheimer’s Association, Desert Southwest Chapter
The year was 1906. Theodore Roosevelt was in his second term as president of the United States. In San Francisco, a massive earthquake and subsequent fire killed nearly 4,000 residents and destroyed 75 percent of the city. And in a quiet setting across the Atlantic Ocean in what was then known as Bavaria, a German physician named Alois Alzheimer was haunted by the case of Auguste D., a patient who had profound memory loss, language problems, unpredictable behavior, unfounded suspicions about her family and other worsening psychological changes. After Auguste’s death, Dr. Alzheimer examined her brain tissue, where he noticed dramatic shrinkage, tangled bundles of fibers and abnormal deposits in and around nerve cells. A few years later, in 1910, this dreaded disease was named for the forward-thinking Dr. Alzheimer, who set a new standard for scientific understanding of neuro-degenerative disorders, including the physically, emotionally and financially disastrous disease that carries his name. – Paula Hubbs Cohen
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8 | Livingwell a-z | Wednesday, November 4, 2015
ALZHEIMER’S » Someone in the U.S. develops Alzheimer’s every 67 seconds.
SENIOR CARE SERVICES
$10 million in new research funding awarded to Banner Alzheimer’s Institute Groundbreaking research focused on potential new treatments to prevent or delay emergence of symptoms By Paula Hubbs Cohen
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Alzheimer's Prevention Registry
n May of 2015, the Alzheimer’s Association, the GHR Foundation (a private family foundation) and Fidelity Biosciences Research Initiative announced $10 million in new research funding to Banner Alzheimer’s Institute (BAI) in Phoenix to support a groundbreaking Alzheimer’s disease prevention trial.
The Alzheimer's Prevention Registry, championed by the Banner Alzheimer's Institute, is a community of people interested in the possibility of participating in Alzheimer’s prevention studies, now or in the future. Every person who joins accelerates Alzheimer's research and improves the chances of ending Alzheimer’s before we lose another generation.
Evaluating potential treatments Part of BAI, the Alzheimer’s Prevention Initiative (API) was established to rapidly evaluate potential new treatments in people prior to developing clinical symptoms of Alzheimer’s who, based on their age and genetic background, are at highest risk of developing symptoms of the disease. API is led by BAI’s executive director, Eric Reiman, M.D., its director, Pierre Tariot, M.D., and one of its principal scientists, Jessica Langbaum, Ph.D. Reiman said that these new funds will not only help make it possible to evaluate two promising Alzheimer's prevention therapies, but to do so in a way that will help the field find treatments that work as soon as possible.
“The goal is to accelerate the global effort to eliminate Alzheimer's disease.” —Maria Carrillo, Ph.D., Alzheimer’s Association Chief Science Officer
Supporting targeted trials Specifically, this new funding supports and extends an API trial known as APOE4 that is focused on determining whether therapies targeting amyloid proteins in the brain may prevent or delay the emergence of Alzheimer’s symptoms in people at particularly high genetic risk for developing the disease at older ages.
MORE INFO: EndAlzNow.org or through the Prevention Registry link on the Arizona Alzheimer’s Consortium website, AZalz.org. The funding will support three aspects of the trial that otherwise would not be possible:
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More info on Alzheimer’s-related clinical trials, visit TrialMatch.ALZ.org (run by the Alzheimer’s Association) and/or EndALZNow.org (run by the Arizona Alzheimer’s Consortium).
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• Brain PET imaging at the start of the trial and two-year follow-up in 125 participants each year • A sub-study to evaluate two remote genetic counseling approaches • Expansion of the Alzheimer’s Prevention Registry for the APOE4 trial The trial, which will involve approximately 1,300 research participants, will test two different potential therapies to see if one or both can prevent the development of memory and thinking symptoms of Alzheimer’s. Pending regulatory approval, the five-year study is planned to begin in late 2015/early 2016 in sites in North America and Europe.
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Wednesday, November 4, 2015 | Livingwella-z | 9
UNDERSTANDING ALZHEIMER’S » Alzheimer’s is the sixth-leading cause of death in the U.S.; it is the fifth-leading cause of death in Arizona.
Marianne continued from page 5
Early signs of dementia Life was good for Harry and Marianne for many, many years. But about ten years ago, things started to change. Marianne told Harry that she thought she needed to see a doctor. “She said she couldn’t remember things,” he recalled. “I thought maybe it was stress — we had started going back and forth to D.C. — Alzheimer’s never entered my mind. But as I look back, Marianne had behaviors that now I know were clearly signs of dementia.” Some of these signs included leaving notes all around the house and not being able to take phone messages correctly. “Plus, if she was driving to an unfamiliar place, she needed a map and written instructions, not verbal,” Harry said. Seeking help and a diagnosis, Harry and Marianne visited a neurologist in 2008. “We had already talked to our primary care doctor and Marianne had started taking medicine even before we went to the neurologist,” Harry said. “Her first official diagnosis from the neurologist was mild cognitive impairment.”
Rick D'Elia
And inally… Every Saturday, Harry takes Marianne out for a hair appointment and a casual meal. Harry said it was a hard decision for him to make, but his beloved wife is much happier with the 24/7 structure of living in a residential care center.
Adjustments in caregiving Until very recently, Harry was Marianne’s primary caregiver. “For us, the greatest help from a caregiving perspective was a daycare program called Oakwood Creative Care in Mesa,” he said. “She started attending the program in April of 2014 which was good for both me and for Marianne, who eventually attended the program five days a week.” Marianne liked Oakwood because she had structure and programs and people with whom she could interact. However, when she was home with Harry — even though he tried to keep her busy — she often cried and whined. “I really felt bad because I could tell she just wasn’t happy,” he said. “So I made the decision to move her to a full-time residential facility. I felt
that if she was at a place that gave her constant structure 24/7, she would be better — and that has been the case for her. She has adjusted very well, much better than me.”
Advice from the trenches Harry said that he has read at least 13 books — some more than once — related to caregiving and Alzheimer’s — and he advises others on the long Alzheimer’s journey to make sure to stay informed by attending programs
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about Alzheimer’s and reading, reading, reading. “I faithfully read the blog ‘Alzheimer’s Reading Room’ and I also attend two monthly support groups — one is a men’s group called ‘Men Who Care’ sponsored by Banner Alzheimer’s Institute and the other is sponsored by Oakwood Creative Care,” he said. “In addition, I attend lectures put on by Banner Alzheimer’s Institute and workshops sponsored by the Alzheimer’s Association.”
Finally, Harry said that he has to be honest and say that while knowledge is power, it can also be frightening. “For example, when I first went to a support group, I told the group that I already knew a lot about Alzheimer’s,” he said. “But as good as it is to be educated — and it is definitely good to be informed — it was also kind of the bad news for me, because I know where this journey is going to end.” Marianne Mitchell has resided in a residential care center since August. On Feb. 6, 2016, Harry Mitchell is scheduled to be the keynote speaker at ‘A Love Not Forgotten’, a gala whose proceeds will benefit the Alzheimer’s Association Desert Southwest Chapter. For more information on tickets or sponsorships, call 602-528-0545 or email AKrautstrunk@alz.org.
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