A Mediaplanet Guide to Caring for Loved Ones With Dementia
Fighting Alzheimer’s
Dr. Oz The TV host and surgeon talks about caring for a loved one who has Alzheimer’s
Why Eisai remains committed to developing better Alzheimer’s treatment and care “Let’s Make a Deal” host Wayne Brady shares why he ends every show with “I love you, Mom”
DECEMBER 2021 | FUTUREOFPERSONALHEALTH.COM
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n Jan. 9, 2009, I became a member of a club no one wants to be in. That day, my husband of 26 years was asked a list of 30 simple questions by his doctor. At the end of the quiz, I became the wife of a man diagnosed with dementia. It didn’t happen overnight, of course. I had suspected for months that something was wrong, but it wasn’t until he asked me when the carpet cleaner was coming by — after he had a very nice 20-minute discussion with the man who had just cleaned our rugs — that I admitted he had more than age-related memory issues. When someone is diagnosed with dementia, everything changes for the loved ones dealing with the news. In Jerry’s case, he was unconcerned. “Grandpa Mike was senile,” my 75-year old spouse declared. No one knew it as Alzheimer’s disease (AD) back then. And there was certainly no thought given as to how to manage the gradual — or not so gradual — mental deterioration of a relative who no longer knows who you are. Understanding Alzheimer’s Times have changed. The incidence of AD is nearing epidemic proportions, with 7.1 million people expected to be diagnosed with the disease by 2025, according to the Alzheimer’s Association. AD is the only top-10 cause of death in the United States that is still on the rise, because there is no cure. It is also esti@MEDIAPLANETUSA
How Caregivers Can Find Safety Nets in a Sea of Change
mated that family caregivers across the country provide more than 17.9 billion hours of unpaid care to loved ones afflicted with the disease. Fortunately, there are interventions that can help slow the progression of the disease. We joined a support group for couples with a spouse who had been diagnosed with AD, and I learned more from friends in my group than any other resource. The most important advice I received was how to find the lifelines in a sea of change @FUTUREOFPERSONALHEALTH
when you need them most. Trying to manage the effects of your loved one’s disease is only half the voyage. The other half is finding the safety nets that help you keep your head above water. Here are some of the best strategies I learned for navigating life with a spouse diagnosed with AD: Join a support group Being a caregiver brings a flood of diverse emotions at different points in the journey. Anger, guilt, despair, hopelessness,
trepidation, feelings of isolation — nearly every caregiver experiences them at some point. Yet they are difficult to discuss with family members or friends who have not paddled your canoe. It really does help to talk with others who have been there, and who can sympathize, provide advice, and prepare you for what might come next. Access adult day healthcare Adult day healthcare has been an essential lifeline for us.
When I drop Jerry off at Alzheimer’s Family Center, I am delivering him into the care of professionals who know how to keep him engaged, social, and safe. The nurses know what to watch for in terms of any changes in his health status. They, along with social workers, know how to manage dementia behaviors, and ensure interactions between staff and other patients remain positive. The activities team provides brain-engaging games and events to stimulate his cognition, and aides help him with bathroom necessities. There is an entire team looking out for him as if he were family. And Jerry is right where he needs to be: in an environment with people who treat him with dignity and respect, and who keep him busy and feeling like he is living his best life, at 88 years of age. For me, those five hours are a return to normalcy that I have not had in years. It is the respite I need to keep my homebased business running and the household in good repair. And it provides me with a sea of calm for a few precious hours each week, to let me just be. Navigating AD is one of the greatest challenges anyone will face, but seeking out, finding, and grabbing the safety nets you find will make the voyage less arduous. And that will help you continue to be a lifeline for your loved one. n Becky Barney-Villano, Senior Consultant, Fund Development, Alzheimer’s Family Center
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The Future of Alzheimer’s Treatment The road to effective treatments for Alzheimer’s disease (AD) has been challenging, but one company refuses to give up. ieurodegenerative diseases like AD present a frightening — and growing — healthcare crisis. It is estimated that 6 million Americans are living with AD today — and that number is expected to grow to more than 13 million by 2050. Despite this urgency, research into therapeutic options for AD has been slow to yield results. Eisai, a human healthcare company, has been at the vanguard of AD research for more than 35 years and believes the scientific community has gained a better understanding of the disease in that time — and that understanding may lead to the company’s goal of one day eradicating neurodegenerative diseases altogether. The stealth disease “One of the greatest challenges
in diagnosing and treating AD is the insidious nature of the disease,” says Michael Irizarry, M.D., vice president and deputy chief clinical officer of the Neurology Business Group at Eisai. “The microscopic changes in the brain that lead to dementia begin years, even decades before clinical symptoms like memory loss and behavioral changes appear.” Therapeutic intervention in the preclinical stages of the disease, before the onset of symptoms, may provide an opportunity to maintain the brain’s biological equilibrium and cognitive function — but historically, diagnosis of AD is delayed until symptoms appear, often in later stages of the disease. Eisai’s approach has been to reject a “one size fits all” method and instead pursue a focused, pathophysiology-guided strategy targeting several key aspects
of the disease. As a result, Eisai is studying novel biomarkers that may be used to diagnose and treat neurodegenerative diseases, potentially identifying the optimal patients for new therapies. But it is not just the patients themselves who benefit. The goal is to transform the lives of everyone impacted by neurodegenerative disease, including both patients and their families and caregivers. Commitment to care “AD is a complex disease and the limited therapies available may not work the same for every individual,” notes Irizarry. “There is a need for additional treatments for AD. Eisai’s portfolio aims to develop more therapy options to patients.” A crucial aspect of this is their human healthcare mission (hhc). The corporate philosophy states, “We give first thoughts to
patients and their families and strive to increase the benefits that healthcare provides.” Eisai sees itself as part of a larger community of patients, caregivers, and researchers striving to not only treat and possibly prevent and cure this terrible disease, but to support and care for those dealing with it. That philosophy inspires the company to focus not just on studies and research, but on empathy, understanding, and addressing the true needs of patients and caregivers. That in turn leads Eisai to strive not just for AD treatments, but for prevention. An example of this commitment is the Eisai Center for Genetics Guided Dementia Discovery (G2D2) opened in 2019 in Cambridge, Massachusetts, the first research center focused on immunodementia. By leveraging the human genetic
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code, researchers there hope to deliver breakthrough therapeutics to prevent and treat neurodegenerative diseases like AD. Furthering this commitment, Eisai partners with and supports AD-related charities and advocates like Seth and Lauren Miller Rogen’s Hilarity for Charity to help patients and their caretakers deal with the emotional devastation of AD. Brain health The future of AD doesn’t depend on a single line of research — or solely on breakthrough new medicines. “Eisai is exploring digital technologies, artificial intelligence, data science, societal trends, and psychological insights in their quest to help people understand their own risk factors and take preventive action where possible so they can live their lives to the fullest,” said Ivan Cheung, president of the Neurology Business Group and Chairman of Eisai Inc. For example, Eisai recognizes the importance of overall brain health and has pursued precision brain solutions. The company is currently co-developing a cognitive tool that will let individuals not only self-assess their brain performance but also incorporate preventative measures into their daily routine. n Jeff Somers
To learn more about Eisai and the work being done in AD, please visit us.eisai.com. To find the latest information about Neurology at Eisai, please visit the new Neurology Linkedin page that demonstrates our commitment and leadership in the field of neurology.
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How Diagnostics Are Changing the Game for Alzheimer’s Research
Biomarkers and diagnostic tools play a critical role in research, diagnosis, and treatment decisions, ultimately driving Alzheimer’s research forward.
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l z he i me r ’s research has progressed dramatically in the past 10 years. A major contributor to that progress has been advances in diagnostic tools that can help identify specific changes in the brain consistent with Alzheimer’s. These diagnostic tools, or “biomarkers,” are biological indicators that can help us tell whether someone has Alzheimer’s and how the disease is progressing. Biomarkers are
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used throughout medicine; for example, blood sugar tests can diagnose diabetes and monitor how a patient is controlling their disease. The challenge for Alzheimer’s is that it is a complex disease caused by an array of contributing biological factors that weaken as we age. We need to find a range of biomarkers that measure and monitor all these factors. Detecting Alzheimer’s Just 10 years ago, there was
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no way to definitively diagnose Alzheimer’s in living human patients. The hallmarks of Alzheimer’s — the accumulation of proteins called beta amyloid plaques and the folds of tau proteins in the brain — could be detected only through autopsy. In 2012, the FDA approved the first biomarker test for Alzheimer’s, the Amyvid™ PET scan, which measures amyloid plaques in the brain. This test was used in the clin-
ical trials that led to approval of Aduhelm earlier this year, the first new Alzheimer’s drug in 17 years. And just this past year, we saw a simple blood test, PrecivityAD™, come to clinic that can accurately measure and predict whether someone has amyloid plaques in the brain using as little as a teaspoon of blood. T h e s e r e vo l u t i o n a r y advances are exciting steps for the field, but they are just the beginning. Development of the next era of biomarkers
is already well underway and includes eye scans, digital tools using smartphone apps and wearable devices, and blood tests measuring biomarkers beyond amyloid. With these new diagnostic tools at our fingertips, the future of Alzheimer’s research is bright. n
Howard Fillit, M.D., Founding Executive Director and Chief Science Officer, The Alzheimer’s Drug Discovery Foundation
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Dr. Oz’s Tips for Caring for a Loved One Who Has Alzheimer’s
The host of “The Dr. Oz Show,” Dr. Mehmet Oz is a cardiothoracic surgeon whose mother was diagnosed with Alzheimer’s disease in 2019. We asked him about the best ways to care for a loved one who has the disease, as well as his thoughts on the state of Alzheimer’s research. What are the main signs to look out for with Alzheimer’s? The early signs of Alzheimer’s vary but can include having trouble concentrating, getting lost in familiar places, having difficulty completing routine tasks at home, and misplacing items and not being able to retrace your steps. Other signs may include changes in mood, personality, and withdrawal from work and social activities. Also, the symptoms progress over time, which can lead to confusion along with the inability to learn new
things. This is not an exhaustive list, but if you notice any of these signs in a loved one, please do not ignore them. Schedule an appointment with their doctor. After a loved one is diagnosed with Alzheimer’s, what should be the first step in helping them? The Alzheimer’s Association says educating yourself about the disease is the best first step. I agree, and I’d also add that caregivers need to make sure that they have a support system in place and are taking care of themselves. You should also immediately address any safety risks that are in their home and have a serious conversation about daily activities that could be dangerous like driving, cooking, and ironing. I also stopped arguing with my mother about memory-based issues and let her win those battles so I can focus on safety rules.
How can caregivers provide help to slow down Alzheimer’s progression? There are multiple ways that we, as caregivers, can slow cognitive decline in our loved ones. Providing a diet full of whole grains, fruits, healthy fats, and vegetables is not only important for slowing the progression of Alzheimer’s but can also help improve the patient’s overall health (and your own!). Other ways to help slow the progression include encouraging physical exercise (mom walks 10,000 steps daily), engaging in social interactions, and keeping brains “active” through activities like reading books, taking dance classes, and working on a variety of puzzles (e.g., crosswords, numbers, pictures). What are your thoughts on the research that is being done to treat the disease? In June, the FDA approved a drug for the early stages of Alzheimer’s called Aduhelm that works by targeting the accumulation of amyloid plaques in the brain — this is thought to be the underlying cause of the disease. However, this drug is controversial since two clinical trials have had conflicting results: One study showed it helped, while the other showed no effect. Still, despite the controversy, I am hopeful that this and other new developments that are in the works can help millions of people, like my mom, who live with this challenging disease. The silver lining is that the FDA has said they are willing to accept new medications that address the underlying cause of Alzheimer’s (even if clinical benefits are marginal), with hope that some will result in important clinical improvement, especially in more advanced cases. This will encourage more drug discovery. n
Caregiver Tips for Joining the Conversation During an Office Visit Navigating care for an older adult can be challenging, even for experienced caregivers, and especially when the individual is exhibiting signs of dementia. If you’re helping someone get medical care and you have concerns that they have a memory problem, there are several strategies to help you serve as an effective advocate. First, you may need to accompany the person to medical appointments so you can ensure important information is communicated accurately. Inviting yourself to an office visit can be awkward and may even be discouraged by well-intentioned office staff, but communicating your concerns clearly will go a long way. This may include calling ahead to notify the healthcare provider that you will be joining the patient during the visit and preparing accordingly. When you arrive, introduce yourself to the healthcare provider and calmly express your concerns; this information is important to convey and will be a valuable supplement to the provider’s assessments. The provider may want to conduct a thorough memory evaluation, which includes taking a detailed health history that the person with the memory impairment may not be able to provide. Tips for advocacy If the person you’re caring for declines your suggestion to come to their appointment, offer to drive. You can sweeten the offer with a shared meal afterwards. Once you arrive at the appointment, if you’re not permitted in the exam room, be sure the provider knows you’re in the waiting area. The provider may want to speak with you in private to get a better idea of what is happening and hear your concerns. Being in the building will expedite this step. If you are the assigned healthcare agent and you have a copy of the Advance Directive or Power of Attorney, make sure to bring those documents as they should expedite the process of including you in the conversation. Leslie Chang Evertson, DNP, RN, GNP-BC, Dementia Care Leader, Educator, and Speaker, Gerontological Advanced Practice Nurses Association
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5 Ways to Lower Your Risk for Alzheimer’s Disease The American Brain Foundation funds research across all brain diseases with the understanding that if we cure one disease, we will cure many. This includes diseases like Alzheimer’s, which affects more than 6 million Americans. Alzheimer’s causes brain changes that affect memory, thinking, and the ability to complete daily tasks, and currently there is no cure. However, there are steps you can take to reduce your risk.
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Protect your heart Four major risk factors directly
relate to heart health: high blood pressure, obesity, diabetes, and smoking. You can reduce your risk by using medication and making lifestyle changes to lower blood pressure and cholesterol, eating healthily to manage your weight, and working with a doctor to manage your blood sugar. You can also talk to your doctor about how to quit smoking.
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Get moving According to Richard Isaacson, M.D., FAAN, exercise can be the brain’s first defense against amyloid plaque, which builds up in the brains of people who have Alzheimer’s. Aim for 30 minutes of daily activity.
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Stay socially and mentally active Get together regularly with family and friends. Meet new people, and work or volunteer with community groups. Read or do puzzles daily and build vital backup pathways in the brain by learning a skill, such as a new language.
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Avoid head injury Head trauma, whether severe or mild, increases dementia risk. Wear a seatbelt, play sports safely, and treat any head injury immediately.
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Treat depression, hearing loss, and substance abuse Excessive alcohol consumption, hear-
ing loss, and depression increase the risk for dementia. You can greatly lower your risk by drinking in moderation and wearing hearing aids. Additionally, it’s critical to reach out to friends, family members, a doctor, or the National Suicide Prevention Lifeline (800-273-8255) if you experience symptoms of depression, such as frequent or extreme sadness, self-isolating tendencies, or thoughts of self-harm. n
This article is brought to you by the American Brain Foundation and Brain & Life®, the American Academy of Neurology’s patient and caregiver magazine and website.
Why Wayne Brady Is an Alzheimer’s Association Celebrity Champion
She won’t recognize me when I’m face-to-face with her,” he said. “But she recognizes the way that she watches me on TV. So I tell her I love her through the TV. This work is the most important to me.” The Emmy Award-winner has been an Alzheimer’s Association “Celebrity Champion” for a decade. He originally started using his platform for this cause when he saw his aunt caring for family members with the disease, which over 6 million Americans have. That same aunt is now caring for her mother — Brady’s grandmother — who has Alzheimer’s. “Like a lot of diseases, and sickness in general, it is truly the leveler of all playing fields,” Brady said. “You can be anyone. You can be the smartest person in the room, you could be the president of a company, you can be whatever you are, but you can still be touched by this insidious disease. “Just educate yourself and show compassion to those who are going through it, because until you have a family member who is touched by it, you don’t know the struggle.” Brady says nowadays there’s better awareness about Alzheimer’s, as well as resources for patients and caregivers. He
PHOTO: DEMETRIUS FORDHAM
“Let’s Make a Deal” host Wayne Brady ends every episode by saying, “I love you, Mom.” It’s his way of connecting with his grandmother, who raised him and who he calls mom. She’s 90 and has Alzheimer’s, and only identifies him on TV.
encourages people to support more Alzheimer’s research, noting that a lot of progress can be made with the proper funding and resources. “Just like what happened for the COVID vaccine, if all hands were on deck, every single coun-
try, every great mind in their field, and they had the funding and they had the time, and they shared that knowledge,” Brady said, “you can’t tell me that great advances couldn’t happen.” n
How Lori La Bey Is Changing the Way We Care for Those With Dementia Lori La Bey, who created Alzheimer’s Speaks and Dementia Map, discusses her efforts to change the mindsets of those providing care for people living with dementia. When Lori La Bey’s mother started showing signs of dementia, she realized just how outdated the methods for supporting those with the disease were. She watched as her mom lived with dementia for over 30 years while being told by doctors that it was impossible for her to have the condition. “For 10 years, she was misdiagnosed — she was told it was her menopause,” La Bey said. “I don’t blame the doctor, they were very uninformed back then, but it’s a matter of listening to the person in front of you and validating what they’re going through.” La Bey says her mother was able to live with dementia for so long because she felt loved and supported at every step of her journey. It was that revelation that led La Bey in 2009 to start Alzheimer’s Speaks, originally a blog and eventually a podcast/radio network aimed at fostering important conversations about dementia, and shifting mindsets about how people go about caring for and supporting those with the disease. Think globally La Bey is also working to empower people living with and caring for those with dementia by making it easier than ever to find resources specifically created for them. She recently partnered with Dave Wiederrich, founder and operator of the Memory Cafe Directory, to create Dementia Map; an online database that helps people find educational resources, products, activities, housing listings, and more that cater to those with dementia. Dementia Map also aims to help organizations of all sizes quickly and conveniently connect with the people who can benefit from their services and products. They can be listed on the site for free, and there are economical paid options as well. See all Dementia Map has to offer by visiting www.dementiamap.com. Dustin Brennan
Kristen Castillo
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