Retirees Battling Alzheimer’s Prepare for the Trip of a Lifetime
According to the Alzheimer’s Association, 1 in 10 people aged 65 and older has Alzheimer's — and those numbers are rising fast. Alzheimer’s is now the 6th-leading cause of death in the U.S., and by 2050 it is expected that someone will develop Alzheimer’s or another dementia every 33 seconds.
“When we look at these numbers,” says Lisa Winstel, Chief Operating Officer of Caregiver Action Network (CAN), “it’s clear that now is the crucial time to talk about a vital job that so few people are prepared for, but which so many of us will be asked to perform with grace in the coming years: serving as the primary caregiver for a loved one who suffers from Alzheimer’s or dementia.”
When you picture caregivers for patients with these diseases, you may envision doctors, nurses, and support staff at assisted care facilities. But the long descent of life with Alzheimer’s means most caregiving begins at home, when a dedicated spouse or child takes on the new and often stressful role of primary caregiver. In the US, it is estimated that there are 65.7 million unpaid family caregivers providing care to someone who is ill, disabled, or aged.
For Dick and Ellen Akers, her diagnosis of early-onset Alzheimer’s has led to big changes in both the roles they share in their 53-year marriage and in their long-awaited retirement plans. But they bravely refuse to let these new caregiving challenges stop them from following through on their biggest goal.
“We originally expected to have years to enjoy all the retirement benefits of moving from Ohio to Florida and living in The Villages,” says Dick Akers. “Now, we’re planning one last vacation together, while Ellen is still lucid enough to enjoy it.”
Ellen Akers has never been to Europe, so Dick undertook the challenge of organizing their two-week river cruise up the Danube River on AMA Waterways — which is a big difference from their usual responsibilities. “Ellen has always been the planner,” says Dick, a former aeronautics engineer whose role around the house was intentionally minimal: he’d manage repairs, while Ellen liked to manage almost everything else. (“After 53 years, I’m still on probation,” Dick jokes.) But that all changed three years ago, when Dick noticed a change in Ellen’s behavior.
“I would make simple statements, and she would answer with questions, or with evident signs of forgetfulness,” says Dick. The big indicator came when the staff of their weekly house cleaning service told Dick that Ellen was telling them the exact same stories every time they visited. So Dick helped Ellen arrange some doctors’ visits — first with their primary care physician, and then with a recommended neurologist. But when Dick learned that Ellen had cancelled an appointment with her neurologist and forgot to reschedule, “that was the moment I realized I needed to become more active and take charge of the situation.”
Since then, Dick has helped Ellen navigate the many changes in their daily routine as she adapts to her new life with Alzheimer’s. Where the kitchen was once exclusively Ellen’s domain, Dick now does all the cooking and meal planning. He switched Ellen’s primary care physician to his own, so they can attend their checkups at the same time. He manages a spreadsheet that tracks all of Ellen’s doctor visits, diagnoses, medications, and more — and he takes a copy with him to every new meeting, where he takes notes to ensure that no new prescriptions will create conflicts with existing medications. He also manages a daily online calendar, so their daughter and son can keep track of Ellen’s condition from a distance.
Right now, he’s especially focused on the details of their big trip, which begins on June 21. He wants Ellen to have the time of her life, but he’s also worried about her decreased mobility (which is further complicated by an unrelated knee injury that could eventually require a replacement), as well as managing all of her medicines and troubleshooting any problems that may arise while they’re overseas.
How is Dick coping with all this added stress? So far, he says he hasn’t thought much about it yet — but he knows he needs to. “I still golf a few days a week,” he says, “but I don’t stay to have food and drinks with the guys afterward, because I’m reluctant to leave Ellen alone for more than a few hours at a time.” He says his family has been supportive, and his daughter calls regularly and flies down to Florida to help whenever she can, but the bulk of the daily responsibility is on him. As such, he and Ellen have become active advocates in raising awareness of the role of caregivers across the country.
“It’s so important to be aware of everything that goes into managing Alzheimer’s,” says Dick, who reads books and subscribes to newsletters about the disease. “But each individual patient responds differently, which means every situation is different. You have to continually evaluate as you go.”
Luckily, five decades of marriage have helped Dick and Ellen uniquely prepare for this challenge. “Ellen is one of the most pleasant, nicest, kindest people I’ve ever known,” says Dick. “But it’s still hard, because she gets so frustrated with herself when she notices these changes in her behavior. And I can’t do anything to assuage her, other than to say, ‘it’s not your fault. We’ll get through this together.’”
We invite you to interview Dick and Ellen Akers about the process of caregiving with Alzheimer’s, and about the complications and adventures of traveling internationally while managing the disease. You’re also invited to interview Lisa Winstel, Chief Operating Officer of Caregiver Action Network (CAN), which provides education, peer support, and resources to family caregivers across the US.
Research suggests that the overwhelming physical, emotional and financial burden faced by unpaid caregivers in the US. Alarmingly, nearly half (45%) of unpaid caregivers surveyed feel that their physical health has suffered as a result of their caregiver duties.
Other key survey findings include:
· Nearly half (45%) of unpaid caregivers surveyed in the US don’t often have time to book or attend medical appointments for themselves. This is particularly concerning considering older caregivers, who often face chronic health conditions themselves: 86% of unpaid caregivers surveyed aged 66-75 care for someone aged 65 and over.
· Nearly half (49%) of unpaid caregivers surveyed in the US have feelings of depression with a similar amount (48%) feeling that they needed medical care/support for a mental health condition (e.g. depression, anxiety, stress) due to their role as an unpaid caregiver. Of these nearly a quarter (20%) have not sought medical help.
· 41% of female unpaid caregivers surveyed in the US feel being a caregiver has put pressure on their financial situation, as compared to 28% of male caregivers.
About EMBRACING CARERS TM
Launched in 2017, Embracing CarersTM is a global initiative led by Merck KGaA, Darmstadt, Germany, in collaboration with leading caregiver organizations around the world to increase awareness and discussion about the often-overlooked needs of caregivers. It is understood that caregivers play a crucial role in the lives of patients. What is less understood are caregivers’ needs for resources and support focused on improving their own health and well-being. And while significant progress has been made in certain areas/geographies, serious gaps remain. Embracing Carers™ addresses this by highlighting the unmet needs of caregivers’ within the US and around the world; by empowering caregivers to advocate for their own health and wellbeing, and by driving a call to action for support of caregivers including support within healthcare systems.
Caregiving in the United States
In the US, it is estimated that there are 65.7 million unpaid family caregivers providing care to someone who is ill, disabled, or aged. Each day, in every community around the world, people provide care for those who need it most, often putting their own lives on hold or altering their daily routines to ensure that an ill or disabled loved one or friend has the support they need.
Known as caregivers, these individuals often get little support or recognition for the work they do, but they are essential for improving patient outcomes. Caregivers are not limited by culture or country — they are universal, sharing common traits and facing common challenges.
Beyond today, it is estimated that the global population of people aged 60 years and older will more than double, from 900 million in 2015 to about 2 billion in 2050.
Carrie Butler, 215 E. 42nd Street 19th Floor, New York, NY 10017 United States