A Mediaplanet Guide to Caring for Loved Ones With Dementia
Alzheimer’s & Senior Care
Dr. Oz The health and wellness expert talks about how he’s helped manage his mother’s Alzheimer’s The science behind why women are more likely to be impacted by Alzheimer’s How COVID has changed the way we care for our loved ones
DECEMBER 2020 | FUTUREOFPERSONALHEALTH.COM
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Clinicians must arm themselves with the knowledge and tools to effectively screen, diagnose, and treat mild cognitive impairment (MCI) and Alzheimer’s disease (AD) at the earliest stages. Nearly 6 million Americans are living with Alzheimer’s disease (AD) and a staggering 7.7 million are expected to have dementia by 2030. Currently, AD is the sixth leading cause of death with 1 in 10 people age 65 and older experiencing AD, and of those 81 percent being age 75 and older. AD is a neurodegenerative progressive disease that has a long pre-clinical sequelae thought to last from 10-20 years. That timespan is typically followed by a period of MCI that lasts between six and 10 years. Finally, the advanced stage occurs during which the person’s health, functional abilities, and care needs worsen sharply over time. Due to this long trajectory, clinicians caring for older adults have — hopefully — many opportunities to engage older adults and their care partners in dementia screening and detection.
A Line of Support for Families Facing Alzheimer’s During the Holidays
PHOTO: ROB HART
Why Clinicians Must Focus on Early Detection and Treatment of Dementia
The holidays are often joyous occasions and celebrations filled with families coming together from near and far. It may also be a time when extended family members and friends first notice cognitive changes in a loved one they don’t see on a regular basis.
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The earlier, the better Early screening, detection, and treatment of both MCI and AD are essential for providing timely access to care that can potentially slow the progression of dementia, provide people with AD and their caregivers time to plan for safe and high-quality care, and put measures in place to optimize health outcomes and protect functional capacity. Clinicians must arm themselves with the knowledge and tools to effectively screen, diagnose, and treat MCI and AD at the earliest stages.
hile traditional holiday gatherings and celebrations may take on a different look this year with coronavirus safety measures, the Alzheimer’s Association 24/7 Helpline remains a vital resource for families who may be experiencing memory changes with a loved one, or are unable to visit them in a care community.
Deborah Dunn, Ed.D., MSN, GNP-BC, ACNS-BC, GS-C, Past President, Gerontological Advanced Practice Nurses Association (GAPNA)
Answering the call Answering more than 300,000 calls each year, the association’s 24/7 Helpline — a free, nation-
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wide service — offers aroundthe-clock support for people living with Alzheimer’s and other dementia, their family caregivers, and the public. Master’s-level clinicians and specialists provide callers with confidential guidance, resource referrals, crisis assistance and emotional support. Callers can be connected to community resources and programs for ongoing support through the association’s network of local chapters across the country. “Many people may face a special sense of loss this holiday season, particularly as family
celebrations take on new virtual forms and smaller sizes this year,” said Monica Moreno, senior director of care and support for the Alzheimer’s Association. “Under normal circumstances, Alzheimer’s can be an isolating disease. With the added challenges of the current pandemic, caregivers are taking on more and more demanding responsibilities, and no one should face this disease alone.” A wide impact Alzheimer’s is a disease that impacts the entire family. Today, there are more than 5 million Americans living with the disease and over 16 million family members and friends providing an estimated $244 billion of unpaid care and support to people living with the disease, according to Alzheimer’s Association 2020 Alzheimer’s Disease Facts and Figures. In addition, twice as many dementia caregivers report significant emotional, financial, and physical difficulties as opposed to caregivers for people without dementia. Layered with navigating holiday traditions and the COVID-19 pandemic, the burden on caregiving is taking an extraordinary and devastating toll on caregivers. The Alzheimer’s Association is here to help wherever and whenever people are most comfortable accessing information and support. The 24/7 Helpline can be reached at 1-800-272-3900. In addition, people can visit alz. org for information, and virtual and phone-based programs and resources, and to find a local Alzheimer’s Association chapter. n Alzheimer’s Association
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“P-Valley” Actress Brandee Evans on Caring for a Parent With Alzheimer’s Actress Brandee Evans studies for every acting role. Her approach was the same four years ago when she became a caregiver for her mother, who has both Alzheimer’s disease and multiple sclerosis. “Azheimer’s is so unpredictable,” said the star of Starz drama “P-Valley.” “I don’t even know what my mom knows each day. I’m just trying to stay positive and keep her as happy as I can. It’s a scary road to travel, because you just really don’t know.” Watching her mother’s disease progression has been emotional. While it can feel like the disease is taking her mother away, Evans knows her mother is still there. When Evans brought her mother home from the nursing home, her mother said thanks for “coming to get me.” In that moment, Evans realized, “My mommy is still there and she knows that I love her.” Staying positive Day-to-day caregiving can be tough. Evans recalls one time she came home and her mother was asking for her daughter. The matriarch didn’t realize she was talking to her daughter, who was standing right in front of her. “I said, ‘who do you want to talk to?’ and she said, ‘Brandee,’” Evans said. Evans told her mother, “‘I’m calling Brandee for you.’” She excused herself, hid in the closet and used her cell phone to call the landline in the house. She laughs and says in that moment, she knew she was meant to be an actress. Her mother was so happy to have that phone conversation. But
five minutes later, “it’s like it never happened,” said Evans, who tries to stay optimistic despite frustrating moments. “Even right now, like this beautiful moment for my career,” she said, “but my mom doesn’t really know.” No perfect way A trained dancer and choreographer, Evans focuses on regular selfcare, including working out and going for drives. When the pandemic happened, she was overwhelmed because she didn’t have a caregiver for her mother at the time. She found one and says it’s important to trust that person to do their best. “I like to remind myself, just like a new mom or any mom, there is no perfect way,” she said. “There are going to be mistakes. No one’s perfect.” Valuing caregivers Over 15 million U.S. adults are family caregivers for loved ones with Alzheimer’s disease or other dementia. Evans wants to see more storylines about caregivers and how dedicated they are. She encourages others starting a caregiver journey to get CPR trained, take notes, and ask for help, like she did for the first few years. “I felt like I had to do everything and it almost broke me down,” she said. These days, she accepts help and lives in the moment. “We’re with each other and that’s all that matters,” Evans said. n Kristen Castillo PHOTO: NATHAN PEARCY MEDIAPLANET
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Dr. Oz’s Tips for Recognizing the Early Signs of Alzheimer’s Dr. Mehmet Oz, host of “The Dr. Oz Show,” has experience dealing with Alzheimer’s — his mother was recently diagnosed and he discovered he has the APOE4 gene, predisposing him to the disease. We talked to Dr. Oz about how to recognize the signs of Alzheimer’s, how to prevent it, and new treatment methods for the disease.
Your mother was recently diagnosed with Alzheimer’s. As a devoted son and doctor, how are you navigating the best next steps for treatment along with your family?
There is still so much mystery surrounding the aging brain and overall brain health. What are the earliest symptoms of Alzheimer’s that often go unnoticed?
Hearing this diagnosis more than a year ago meant the woman I know and love would start to disappear. I’m happy to say we now have some great physicians on hand helping her, and she is on newer medications. At this point in time, the main emphasis is on keeping my mom physically healthy and happy. We’ve noticed that she thrives after daily exercise, so that’s become an important part of her life and treatment plan. As a family, we’re also better at picking up any subtle signs that she may be in distress or that her condition is worsening.
So many of the behaviors we dismiss as aging, forgetfulness, or stress are early signs of Alzheimer’s disease and related dementias. Now, all of us forget things or even get confused every once in a while, but when it starts to regularly disrupt your daily life, then it might be time to see a doctor. Some of the early subtle signs of Alzheimer’s disease include difficulty solving problems or completing familiar tasks, getting lost, trouble with spatial relationships, forgetting words, and misplacing objects like keys or a wallet. There’s a mental health component as well — changes in
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mood and personality, and lack of interest in social activities or hobbies you usually enjoy are causes for concern. What advancements in the Alzheimer’s research space are you excited about and give you hope? There are a lot of exciting new therapies on the horizon. On my show last season, we looked at one that’s incredibly promising. It’s intranasal insulin; a spray that’s absorbed through the nose that appears to have positive effects on people with Alzheimer’s disease or mild cognitive impairment. The research has found this nasal spray appears to positively affect memory function, especially in patients who have specific mutations to their APOE4 gene. n
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the brain with Alzheimer’s disease. While Eisai’s phase III Clarity AD Study focuses on participants with early Alzheimer’s disease.
The Turning Point for Alzheimer’s Disease For years, treatment of Alzheimer’s disease focused on symptoms. New research targets the pathophysiological changes underneath — with potentially promising results.
lzheimer ’s disease (AD) is one of the greatest healthcare crises in our world today. According to the World Health Organization (WHO), there are 50 million people living with dementia today — and that number is predicted to increase to more than 80 million by 2030. The good news is that promising investigational treatments are being researched. “In the past three decades, the scientific and medical community have made significant progress in understanding the biological mechanisms of the disease,” says Harald Hampel, M.D., Ph.D., chief medical officer and vice president at Eisai Inc. Dr. Hampel was recently named one
of the top five global experts in Alzheimer’s disease. That progress has changed our understanding of the disease from a symptom-based definition to one focused on changes in the brain that begin years before symptoms. The cutting edge That shift in focus is key. “Because current treatments target symptoms experienced in the late stages of dementia, Eisai has focused research on patients who are in the earlier stages of Alzheimer’s disease,” Dr. Hampel notes. The key is the science of biomarkers, which measure physiological changes that occur when disease is present. These biomarkers are often detectable long before patients show symptoms. “Currently, there are
well-validated neuroimaging and fluid biomarkers for Alzheimer’s disease,” says Dr. Hampel. The development of blood-based biomarkers has the potential to support large-scale screening for Alzheimer’s disease brain changes with a minimally invasive, widely accessible, easy-to-use and cost-effective test. This in turn would enable people to seek diagnosis and potential treatments long before they experience symptoms. Breakthroughs Biomarker research has led to what’s known as the AT(N) system, a classification scheme that categorizes individuals according to the presence of specific pathophysiological features of the disease. These are the Amyloid-β
pathway (A), the aggregated tau or associated pathophysiology (T) and neuronal injury and neurodegeneration (N). These pathways (A, T and N) represent the core changes in the brain caused by Alzheimer’s disease that can be targeted by developing disease-modifying treatments. This new understanding of the disease has led to the development of new ways to fight it. Eisai Inc. is conducting multiple clinical trials in pre-clinical, early and intermediate Alzheimer’s disease. Eisai and the National Institutes of Health-funded Alzheimer’s Clinical Trial Consortium have partnered on the phase III AHEAD 3-45 Study, which is testing an investigational treatment to see if it slows down the earliest changes that occur in
Patient-centric The fight against Alzheimer’s disease is everyone’s fight. That fight requires people — scientists, clinicians, patients and caregivers. Clinical trials involving them have been crucial to understanding Alzheimer’s disease — and they remain crucial for future breakthroughs. “Clinical trials are important to show the efficacy and safety of potential new treatments for Alzheimer’s disease,” says Michael Irizarry, M.D., Master of Public Health and vice president of clinical research at Eisai Inc. “The trials can identify the individuals most likely to respond to treatments and how treatments impact disease progression, clinical symptoms, daily function, behavioral symptoms and quality of life.” Patients, caregivers and family members can ask their physician about Alzheimer’s disease clinical trials or look to internet resources like the www.clinicaltrials.gov. Dr. Hampel is optimistic about the future of Alzheimer’s disease treatments. “We are very excited about the research we are conducting,” he says, “our ultimate goal is a world without Alzheimer’s disease.” n Jeff Somers
Sponsored by Eisai To learn more about Eisai’s work in fighting Alzheimer’s, visit us.eisai.com/
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Emerging Research Suggests Why Women Face Higher Dementia Risk Than Men When Dr. Lisa Mosconi was weighing her career options, she knew one thing: she wanted it to involve the brain. Mosconi, who is from Florence, Italy, came from a family of scientists, after all. After she settled on neuroscience, her life’s work took on new meaning when her grandmother, and eventually her grandma’s two sisters, developed Alzheimer’s disease — the most common form of dementia — and died. She knew Alzheimer’s was more common in women than men, accounting for 2 in 3 cases, but she began to wonder why — not only because of her interest in neuroscience, but for the sake of her and her family members’ health. One common belief is that more women develop Alzheimer’s than men because women tend to live longer. But through her studies, Mosconi found brain changes that eventually lead to dementia begin in midlife. That’s how her team landed on menopause. In women as young as in their 40s, brain scans show amyloid plaques, which are linked to Alzheimer’s, Mosconi said. “I think it’s really important to this holistic understanding of the body as an organism, rather than a number of bits and pieces that magically turn into a person,” Mosconi said. Melinda Carter
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Teepa Snow Talks About the Challenges of Caring for People With Dementia Teepa Snow, founder of A Positive Approach to Care, an educational resource for caregivers, believes the healthcare system needs an overhaul to better support caregivers.
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aregivers have been on the front lines of the pandemic this year, particularly in aged care facilities where COVID has posed higher risks. Snow says the pandemic has forced the healthcare system to rethink aged care, especially for patients living with dementia. “People living with dementia are at a heightened risk for developing COVID symptoms,” Snow said. “It puts them in the highrisk category, not only because of their dementia but because they also have in general at least three other health conditions that contribute.” However, the physical health issues are only half of the problem. “When we socially isolate or we remove routine, that has a risk pattern to it that can increase the risk of anxiety and depression dramatically, not only for the person living with dementia but also for the care partner,” Snow said. Straining the system Many care facilities are not designed to accommodate social isolation. “If you’re going to isolate by individual, care buildings were never designed to have people
stay in their bedroom all day long,” Snow said. “The whole point of a small bedroom was that you only slept there and came out for everything else.” For families with someone living with dementia in their home, the social isolation has meant undue burden on family caregivers. “Some families have been forced into segregation and separation, and other families in the home are being asked to do 24/7 care without a lot of help,” Snow said. “It’s both extremes, both of which are bad outcomes for everybody involved.” In response to the imposed isolation, healthcare has moved toward telemedicine, but the technology isn’t perfect for caring for people living with dementia. “Telemedicine has great value because it eliminates geographic boundaries,” Snow said. “But a human being has to be able to gaze into a screen and understand that they are engaging with another human.” Determining best practices When communicating virtually with people living with dementia, Snow is working on practices to deliver the best care possible. Things like hanging a blank cur-
tain behind yourself to eliminate visual distraction, or having someone minimize self-view windows so the patient can only see the person they’re speaking with, make communication much clearer. “We’re learning the art of using technology to connect,” Snow said. Human connection is a vital part of caring for people with dementia, something Snow insists has to be addressed. “We aren’t developing care plans that are person-centered, and yet without person-centered care planning, life isn’t worth living for people living with dementia,” she said. “They deteriorate and their families are distressed.” Snow believes the future of care lies with the younger generation, which is why it’s so important to get people involved early and interested in caregiving careers. “Young people have an ability to see beyond and they have the ability to make a difference,” she said. “People are seeking value and purpose in their life, not just earning a certain amount. Making a living is great but that’s not necessarily how people have that feeling of community and contribution.” n Ross Elliott
How the YMAA Is Preparing the Next Generation of Caregivers
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outh Movement Against Alzheimer’s (YMAA) is an advocacy group that helps caregivers of people living with Alzheimer’s. Nihal Satyadev, founder of YMAA, said he first got involved in Alzheimer’s research when his grandmother was diagnosed. “What I realized at the time was that research is not the only way to address this issue,” he said. “The challenges we’re facing with regards to Alzheimer’s is not just the fact that it’s very expensive. We’re also severely lacking in human resources. There are so many
people who are in the 55-65 age group and there are fewer young people being born. That’s going to create a demographic in this country we’ve never seen before.” As demographics shift to an increasingly older population, the healthcare system is currently not equipped to handle the burdens of care. Satyadev has found the greatest burden for those living with Alzheimer’s can fall on family caregivers. In founding YMAA, Satyadev wants to get young people engaged in caregiving work early and help ease the burden on the healthcare system.
PHOTO: PATRICIA LAKE
With an increasingly aging population, the healthcare system looks set to be overwhelmed if it doesn’t receive more funding and support for caregivers.
“The first thing we had to do was let other people our age know this was an imminent threat to our own healthcare access,” Satyadev said, “to frame Alzheimer’s not just as a disease that affects old people but really as a disease that poses an imminent threat to our entire healthcare system.” A growing movement YMAA now has 42 chapters in 15 states, working in colleges and high schools to offer respite care, in which student volunteers are paired with older adults who have Alzheimer’s.
“By creating a program like this, we’re not only able to reduce those rates of stress and depression, we also incentivize these students to look into careers in aging and understand what it’s like working with the older population,” Satyadev said. The pandemic has also provided an opportunity for people to reckon with the weaknesses in our healthcare system, as well as the negative impacts of social isolation that people living with Alzheimer’s face daily. “Social isolation for older adults was a huge problem before the pandemic and
that’s been quite significantly magnified,” he said. “There’s now a national reckoning with how little infrastructure our healthcare system has built for older adults. We see the coronavirus taking over nursing homes like it’s nothing, we see older adults being locked away not able to see family, and having been in the lockdown ourselves, we see how difficult it is to be socially isolated. That sort of personal realization has always been the driving force for why we wanted to connect students with this generation.” n Ross Elliott MEDIAPLANET
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