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Supporting Our Caregivers

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NOVEMBER 2019 | FUTUREOFPERSONALHEALTH.COM

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SUPPORTING OUR CAREGIVERS

Richard Lui

The journalist talks longdistance caregiving and how to maintain your own well-being in the process

The Second Annual Connecting Circles of Care and Building Bridges of HopeSM Dementia Caregiver Cruise and Conference. Learn more at alzcruisetropics.com

Learn which resources you shoud use to change your life as a caregiver for the better today From smart homes to sensor systems, find out how technology can make caregiving easier


How Technology Can Help Those With Hearing Loss Dr. Daniel R. Schumaier, president of Ear Technology Corporation shares the benefits in technological innovation for hearing loss. How has hearing loss impacted the elderly? Hearing loss often leads to increased social isolation, as individuals opt out of noisy environments, and research shows links between untreated hearing loss and other health issues, like increased risk of falls. You have played a role in creating many tech innovations for patients with hearing loss. Can you tell us about them? I developed the Dry & Store® conditioning system in the 1990s to combat moisture, which made for fewer repairs and relief from irritated ears. In 2003, I invented TransEar for those with single-sided deafness. And in 2014, I designed ClikFit programming, allowing users to easily program their own hearing instruments. How can caregivers help their aging loved ones maintain their ability to communicate? Whether traditional hearing aids, overthe-counter hearing solutions, or options such as TV listening systems, there are numerous technologies that can dramatically improve their quality of life.

You Are the Advocate for Your Family Member Is your loved one getting the best care possible? How to ask the right questions and speak up for your family member’s healthcare goals. amily caregivers want their loved ones to have the best care possible everywhere they are — at the doctor’s office, at the hospital, and at home. And the best way to get them the best care is to be their advocate. How to be an advocate Being your loved one’s advocate means asking a lot of questions. Ask your loved one what their goals are for treatment and for their care in general. Being clear about desired objectives and outcomes can help ensure they get the care they really want. Look at all the options Is your loved one responding well to treatment? If not, ask their doctor if there are other options. Whether

John Schall CEO, Caregiver Action Network

it’s a different dose, a new medication, or a new procedure, it’s important to find out if your loved one’s treatment is the best one for their goals. Ask the questions Ask as many questions about your loved one’s condition as possible, and be curious about everything you read. Is it from a reliable source? Is the information corroborated in other articles?

When in the hospital, always ask what happens next. Will your loved one need home care after being discharged? Are there new medications or procedures you will need to manage? A lot of care happens at home and you need to be prepared to provide that care effectively. Double-check insurance Check their insurance coverage, too. Is your loved one’s current plan the best option, or should you consider a change? Was a needed medication switched for a medical reason, or because their insurance plan no longer covered it? Family caregiving is stressful, but the more you know, the easier it is to provide the best care for your loved one. n

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A Phone Call Away: Helping Caregivers One Conversation at a Time Millions of family caregivers in the United States means millions of questions and daily worries. Caregiver Action Network lends an ear and a helping hand. “I don’t know … I’m just not sure where to begin.” The caller’s hesitation says it all: confusion, frustration, isolation. The care advocate’s response: “Just take a breath. When you’re ready to talk, I’m here to listen. Let’s do this together.” Care needed for caregivers For Caregiver Action Network (CAN), a national nonprofit organization for family caregivers that provides care for loved ones with chronic conditions, disabilities, or increasing difficulties due to old age, moments like these can be incredibly

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rewarding — giving caregivers resources they didn’t know existed and a path to get help when times are tough. There are tens of millions of family caregivers across the United States, many of whom feel isolated and lost. Caregivers are constantly scrambling to fill a need or find answers while also trying to balance caregiving with the rest of their lives, which more often than not includes jobs and kids of their own. The multitude of responsibilities and accompanying pressures can quickly lead to burnout and jeopardize the caregiver’s own physical and mental health, and they often don’t know where to turn. But because every patient and family situation is unique, there is no single comprehensive solution or one-size-fits-all resource.

Help is here CAN aims to address this need with our recently launched Caregiver Help Desk and team of care advocates. The Help Desk is a completely free tool to meet each caregiver where they are and connect them with caregiving experts who can help answer their questions. Where many caregivers don’t acknowledge the time and emotional energy they expend on their loved one, and may be too distracted to fully take care of themselves, care advocates at CAN are there to provide validation and reinforcement. I recently spoke with a woman caring for her parents from out of state who didn’t consider herself a caregiver because she wasn’t physically involved on a daily basis. “You

are absolutely a caregiver,” I reassured her. An ear to listen My aim is to make caregivers’ situations feel more manageable, so I try to offer tools that will give them a plan and the energy needed to push forward when they feel stuck. Sometimes that comes in the form of actionable steps, but sometimes they just need someone to listen. In many cases, simply having a conversation about their situation changes a caregiver’s day for the better. Start your caregiver conversation by chat or email at caregiveraction.org, or call 1-855227-3640. n Jennifer Piscitello, Care Advocate, Caregiver Action Network


How Technology Can Make Caring for Loved Ones Easier on All Parties Balancing concerns for safety with the need for privacy and independence when caregiving for an older adult can be tricky. Modern technology can help.

here are almost an infinite number of ways technology can help older adults and the caregivers who help support them. Get smart New smart home devices like the Amazon Echo and Google Home can make a huge difference and open up new worlds of independence for people who live alone.

Everyday tasks like turning on the lights, setting the oven to preheat, checking the status of your laundry, adjusting the thermostat, controlling your home security, ordering groceries, and more, are all just a simple voice command away. Sensing from afar Technology can also help families provide support to loved

ones from a distance by using sensor systems. Sensor systems help monitor things like whether a person has taken their prescribed medications, when they’ve gotten out of bed, and whether a window or door has been opened. The systems can detect whether an oven burner has been left on — and even provide a way to shut it off remotely, if it has. These

small things enable families to support their older loved ones from afar and enable the loved ones to live independently for longer. Preserving privacy When exploring technological solutions to help families, it’s important to keep the preferences of the person who needs help at the center of the conversation and to include them in it. Caregivers are often concerned about their loved ones’ safety — and safety certainly is important, especially if people are living with cognitive impairment. However, older adults don’t necessarily want caregivers to have unfettered access to their lives and information. Privacy considerations are crucial, and getting older doesn’t, or shouldn’t, take away a person’s right to decide for themselves how much they’re willing to trade to reduce risk. n Greg Link, Director, Office of Supportive and Caregiver Services, Administration for Community Living

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Richard Lui on Long-Distance Caregiving and Prioritizing Your Well-Being PHOTO: MITCH TOBIAS

News anchor Richard Lui is a long-distance caregiver to his father, who has Alzheimer’s. But he doesn’t let the distance be a barrier to good caregiving. MSNBC and NBC News anchor Richard Lui is based in New York City, but he travels weekly to San Francisco to be with his family and help provide care for his father, who has advancedstage Alzheimer’s disease. The Emmy-winning journalist also does advocacy work with the Alzheimer’s Association. Here, he shares his advice for other caregivers and encourages them to hold onto joy and love, even while managing a loved one’s difficult diagnosis. What was the diagnosis process like for your family? My father went to see a neurologist, after the family asked him to get checked out, and found out he had early indications of Alzheimer’s. His actions after diagnosis were to fight it every step of the way. What advice do you have for other long-distance caregivers? Don’t be daunted by distance. Let your employer know what’s happening so they understand why you might be gone more often, and install cloud-based cameras in your loved one’s house for easy monitoring.

How do you maintain consistent contact with your family to ensure everyone is up-to-date? We have group texts to share daily reports with each other and a shared document for caregiving notes from each of our visits. We also talk on the phone for major decisions once or twice a week. How has coming together as caregivers for your father impacted your family dynamic? We didn’t know how close we could get — arguing, laughing, crying, sharing, and working to each of our own given abilities. We’ve determined what we’re each good at, and we haven’t stopped giving our all. How can caregivers prioritize their own well-being? Talk about it. Reach out to organizations in your town for advice and help. Join a group, whether online, of friends, or at the community center, where you can be you. Caregiving has its ups and downs. How does your family work through the di�ficult days? We try to remember the joy — to laugh at things, to help each other always, to pray, to accept we cannot do it all, and to remember to love each other. Kristen Castillo

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To America’s tireless family caregivers: we salute you.

Caregiving is a labor of love for many of the unpaid family caregivers taking care of their loved ones. And it’s costly—in fact, 62% of caregivers1 have out of pocket expenses averaging nearly $4,000 a year, and many are less financially prepared for retirement. That’s one reason Nationwide and the National Council on Aging are partnering to empower older adults to think creatively about their financial resources and take practical steps to make their money last. See how we can help at nationwide.com/LTCBasics Learn more about our partnership with the National Council on Aging at ncoa.org 1

Nationwide’s 2019 Long-Term Care Consumer Survey Neither Nationwide nor any of its affiliates are related to or affiliated with National Council on Aging. Nationwide has a paid sponsorship agreement in place with the National Council on Aging (NCOA) to help promote financial wellness concepts for older consumers. This material is not a recommendation to buy, sell, hold or roll over any asset, adopt an investment strategy, retain a specific investment manager or use a particular account type. It does not take into account the specific investment objectives, tax and financial condition, or particular needs of any specific person. Investors should work with their financial professional to discuss their specific situation. Nationwide Investment Services Corporation, member FINRA, Columbus, Ohio. Nationwide, the Nationwide N and Eagle and Nationwide is on your side are service marks of Nationwide Mutual Insurance Company. © 2019 Nationwide NFV-1572AO


How Wearable Technology Enhances Seniors’ Lives We want our seniors to live healthy, happy, and safe lives. Innovative wearable technology devices can help make this happen. Wearable technology has been hailed as a new gamechanger in the tech industry, promising to be most influential in the daily lives of seniors. Tech tools Wearable tech devices are comfortable and easy to use. Connecting them to IoT platforms allows loved ones, caregivers, and responsible authorities to automate everything from simple location awareness, basic healthcare alerts, and medical emergency responses. These integrated systems give seniors greater independence and a better quality of life, and enable them to live at home longer without compromising their safety. Design that saves lives Seniors can now wear the same innovative designs that their grandchildren wear, but with operating systems specifically engineered to respond to the unique challenges seniors face, becoming full healthand-wellness safety companions. Wearable tech is a solution for enabling people to live more healthily, happily, and safely as they age. Carrie Schwarz, CEO, Revolutionary Tracker

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5 Resources Every Caregiver Needs Now Navigating the world of elder care, Medicare, and caregiving can be daunting, but using these resources will point you in the right direction. Whether you’re new to caregiving or have been caring for your older loved one for years, you may be suffering from information overload. The National Council on Aging has been serving older adults since 1950, and we recommend investigating these five resources. 1. BenefitsCheckUp® Depending on their income, people aged 60 and over may be eligible for programs like the Supplemental Nutrition Assistance Program, which helps pay for food, and the Medicare Savings Programs, which help with Medicare co-payments and deductibles. But most don’t know how to access these programs. BenefitsCheckUp® is the solution. It’s a free online tool that screens for more than 2,500 local, state, and

federal benefits programs that help with a variety of daily costs, and gives you a personal report showing programs for you. Visit BenefitsCheckUp.org to get a report for your loved one. 2. Senior Centers Local senior centers serve as a gateway to the aging services available in your community. In addition to finding classes, meals, social events, and exercise programs for your older loved one, you can discover local transportation options, ways to prevent falls, tips to manage chronic conditions, and more. Find your local senior center at ncoa.org/map. 3. My Medicare Matters® The ins and outs of Medicare can feel like a maze. My Medicare Matters® is a free educational resource that gives you a primer on everything Medicare-related, from eligibility requirements and coverage comparisons to enrollment and getting the most from free and preventative benefits.

Visit MyMedicareMatters. org to find the answers. 4. Help for Hearing Hearing loss affects 9 million seniors in the United States today and significantly impacts their quality of life and relationships, yet Medicare does not pay for hearing aids or routine hearing tests. Bring your older loved one for a hearing checkup to find devices to help them stay connected, and find programs that offer low-cost access to hearing services at ncoa. org/hearing. 5. Eldercare Locator While hard to think about, 2 in 3 older adults will eventually need some kind of assistance with daily activities like bathing, dressing, and eating. The Eldercare Locator can help you find in-home care services, nursing homes, hospices, and more near you. Visit eldercare.acl.gov or call 1-800677-1116 to find help. n Anna Maria Chávez, Executive Vice President and Chief Growth Officer, National Council on Aging

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How Technology Is Changing the Way Men Deal With Incontinence Tony Forsberg, RN, BSBA, WCC, CSPHA, the national clinical director of Essity, a health and hygiene company, shares common types of incontinence and products available to help tackle the issue. What are some early signs of benign prostatic hyperplasia (BPH)? This refers to an enlarged prostate. It is rarely dangerous but can cause problems with urination. Speak with your healthcare provider if you have trouble initiating urination, have a weak urination stream, are dribbling at the end, or have a constant urge to urinate. Medications, exercises, dietary changes, and various voiding techniques may be able to help. What are innovations helping urological patients? A growing assortment of disposable absorbent products tailored to the needs of men are becoming available. Consider the frequency of need, activities where symptoms may be more likely, and comfort. Many products are 100 percent breathable and very discreet. What’s the most important thing to keep in mind a�ter a diagnosis? Seek guidance. There may be treatment, exercises, behavioral techniques, dietary changes, absorbent products, or medications that can eliminate or reduce unwanted bladder leaks. 10 • FUTUREOFPERSONALHEALTH.COM

Combating Incontinence: It’s Time to Get Practical Incontinence affects millions of older adults, but can be hard to manage as family caregivers. Here are key ways to stay focused on what matters.

aregivers accept so many responsibilities — many rewarding, many challenging. Often most challenging is providing assistance with urinary incontinence (UI) and/or fecal incontinence (FI). Over 200 million individuals worldwide experience UI, and an estimated 8.3 percent of adults will experience FI at some point. The intimate nature of incontinence causes issues of diagnosis, treatment, and management to be kept quietly “in the closet.” It’s time to pull back the curtain and talk about some practical approaches. The beginnings of incontinence UI has many possible causes. Although older individuals are disproportionately affected, incontinence is caused by something else in the body. So, the first step is locating a physician who is interested in and knowledgeable about incontinence. The weight of incontinence care can become overwhelming without the benefit of resources that may well be available, but not easy to find. Added to other burdens of caregiving, incontinence is often the tipping point to nursing home admission. But with persistent hunting, you will find that some unexpected help is available.

friends. The websites for The Simon Foundation for Continence and Continence Product Advisor are good places to start your search. Covering topics such as reimbursement and insurance, product types, and how to choose products, the sites will lead you to find an array of materials you may never have imagined. Second, visit some home health stores, and find a salesperson who understands the issues and products to ask questions of. If you find products you’d like to try, often those companies will send free samples from their online stores, which keeps the costs of exploring new products and options low. Diagnosis, treatment, and a well-suited management product can also definitely ease the burden of care. But communication often remains challenging. Distraction, good humor, and a matter-of-fact approach can help move the focus from the physical body to companionable interaction. For peer support, visit the Simon Foundation’s online support group on Health Unlocked. We can all help lessen the impact of incontinence by trying to minimize the stigma surrounding incontinence. Visit simonfoundation.org and healthunlocked.com/simonfoundationforcontinence to learn more. n

Where to find help First, research and the internet are your

Cheryl B. Gartley, Founder and President, The Simon Foundation for Continence MEDIAPLANET


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