Published on: June 25, 2019
by Susan Bradley for Women’s Heath:
Ask anyone what worries them most about getting older, and more than a few people will say losing the ability to remember things is high up on their list. After a lifetime of making memories and forging meaningful relationships, the idea that a disease like Alzheimer’s could swoop in and steal it all away is, frankly, pretty frightening.
But what exactly does an Alzheimer’s diagnosis mean, anyway? And what is life like with the condition? Truthfully, it’s tough to be fully prepared until you’re actually living it, either yourself or because you’re a caregiver or family member of someone with Alzheimer’s.
“Newly diagnosed adults and their family members are deeply concerned about how to navigate this uncertain future,” says Laura Rice-Oeschger, LMSW, who runs a caregiver wellness program for the University of Michigan’s Alzheimer’s Disease Center. “They’re overwhelmed with ideas and fears, which often stem from a previous personal experience with Alzheimer’s or what they learn from the media.”
Given that it’s Alzheimer’s & Brain Awareness Month, there’s no better time to introduce some real talk about what the disease means (and doesn’t mean) for someone newly diagnosed. If you’re dealing with a diagnosis or preparing to care for a loved one who was recently diagnosed with Alzheimer’s, these 12 facts-straight from Alzheimer’s health care providers and caregivers-will help paint a more accurate reality of navigating life with the condition.
A lot of the fear surrounding an Alzheimer’s diagnosis comes from worrying about how the disease will affect your relationships with family and friends. They will inevitably change, but your connection to your loved ones doesn’t have to disappear.
Bobbie, an Alzheimer’s caregiver in Rice-Oeschger’s wellness program, says she has learned that the spirit of her husband is still there despite their changed relationship: “[Even when] I’m mystified by what he says and does, he is trying to communicate something that is important to him. If I am present to him, completely and with kindness, our ability to communicate and learn from each other…is greatly enhanced.”
With Alzheimer’s, symptoms of the disease do not appear overnight, and they also don’t go from mild to horrible in the blink of an eye. While it’s a degenerative disease, meaning it continues to develop and worsen gradually, you do have some control over the speed at which it carries on.
Brain degeneration happens over the course of 15 to 20 years, according to David A. Merrill, MD, PhD, neurologist and geriatric psychiatrist at Providence Saint John’s Health Center in Santa Monica-which means decades can pass from the time it begins until the brain is no longer functioning.
“There is no reason to be hopeless about an Alzheimer’s diagnosis,” Dr. Merrill asserts. “It’s never too late to start changing your lifestyle to slow down the progress of the disease.”
Speaking of lifestyle changes, they can help you slow or even stave off the brain degeneration associated with Alzheimer’s. Aerobic exercise, sufficient sleep, and a healthy diet are all integral to both brain and body health, says Henry Paulson, MD, PhD, neurologist and director of the University of Michigan’s Alzheimer’s Disease Center.
Why? Regular cardio activity boosts the parts of the brain involved with memory and cognition, Harvard Health reports; and some research suggests eating a Mediterranean-style diet may slow the brain degeneration linked to Alzheimer’s, according to the National Institutes of Health.
As for sleep? “If you don’t get enough good sleep, your brain can’t clear the abnormal proteins that accumulate,” Dr. Paulson explains. He’s referring to beta-amyloid, which is a brain compound suspected of being one of the causes of Alzheimer’s.
If your mother and grandmother both had Alzheimer’s, does that mean you definitely will, too? While there is a genetic risk factor that increases the hereditary likelihood, Dr. Merrill says it’s better to focus on the areas of your life that you have *control* over, instead of the ones you don’t.
“Genetic risk factor is less important than the sum of all the modifiable risk factors,” he says. “Changing our behaviors and lifestyle can actually counteract any genetic risk factor we have.”
Dr. Merrill suggests paying attention to subtle age-related changes as they happen, whether you’re at an elevated risk of developing Alzheimer’s or not. Addressing your diet and exercise routine or prioritizing brain-stimulating activities-like puzzles, computer games, and book clubs-can ward off some of the normal (and not-so-normal) cognitive effects that occur during the aging process.
“There are so many difficult and excruciating decisions families must make when caring for a family member with a dementia disease,” says Rice-Oeschger. Depending on your situation, this might mean:
Glen, another caregiver in the University of Michigan’s wellness program, recommends considering the logistics of how your life will change together as a couple or as a family while you still can, as opposed to waiting or delaying these conversations.
Okay, there’s no actual cure for Alzheimer’s. But don’t overlook the power of regular social interaction in preserving cognition. And this is extremely important before *and* after a diagnosis.
“When it comes to the brain, I tell patients to ‘use it or lose it,’” says Dr. Paulson. “People are social animals and socialization drives us. Do a lot of whatever mentally stimulates you.”
Maybe that means weekly lunches with friends, Facetime sessions with long-distance relatives, volunteering for a cause, or joining local clubs, groups, and committees. Whatever keeps you connected, fill up your calendar the best you can with that. Letting your inner social butterfly loose can give your brain function a serious boost.
If you’re an Alzheimer’s patient, finding a local support group can help you navigate the challenges of life with a dementia disease.
If you’re a caregiver, Rice-Oeschger recommends seeking out a wellness program to combat the often-isolating nature of caregiving and forge invaluable relationships with people who know exactly what you’re experiencing. “You will benefit from continuous, enjoyable, thought-provoking, and profound connections with other caregivers,” she asserts. “Find and commit to a counselor or enriching wellness program [that reminds] you to how to take care of yourself over the long haul.”
On the topic of caregiver needs, Rice-Oeschger says daily caregiving is stressful enough to impact a person’s health and well-being (which can, in turn, directly affect your loved one’s health and well-being). In a 2017 National Poll on Healthy Aging released by the University of Michigan, 78 percent of caregivers surveyed said their efforts are stressful.
But it’s not all gloom: In that same poll, 85 percent of caregivers reported that caregiving is a rewarding experience, and 63 percent called it both stressful andrewarding. “Most people do not understand how stress and positive [emotions], even joy, can be experienced alongside one another,” explains Rice-Oeschger.
The point? There will be happy days and sad days, easy days, and tough days for both the patient and the person helping to take care of them-and it’s all normal.
Before you spend every waking hour researching the ins and outs of the disease, know that education has a time and place in your new role as patient or caregiver.
“Go to every workshop, conference, support group, and education event you can, but also know these will only take you so far,” says Rice-Oeschger.
Debra, an Alzheimer’s caregiver from Michigan, echoes these thoughts based on her experience caring for her husband: “Gather facts and information and read about the disease, but understand that each individual with the diagnosis is unique. What you know about your loved one is as important, or I would argue more important, than any fact about the disease that you will ever read.”
Most caregivers find themselves unprepared for the changes in personality and memory recall they observe in their loved ones.
“Your sweet, innocent [mother] who does not swear will curse like a sailor and call you names,” says Kelly, who lives in Cypress, Texas, and cares for her mother with mid- to late-stage Alzheimer’s. “Try to remember it is not her doing these things…it’s this disease.”
Kelly also reveals she turned into a good “white liar” when it became too traumatizing to remind her mother over and over of her own mother’s passing more than 20 years earlier, and advises against arguing with a person with Alzheimer’s.
“If your loved one says something more than once, just pretend like it was the first time you heard it,” she suggests. “‘Do not say, ‘Mom, you just said that.’ That will only cause an argument.”
Whether you’re in the patient or caregiver role, you might be stressing over just how much personal freedom will be taken away as a result of Alzheimer’s. But patients can still do things for themselves-it’s just a matter of finding the right balance.
“My mom has always been very independent, so it is hard to watch her slowly lose the ability to do things she was once able to do easily, like remembering computer passwords and keeping appointments,” says Shon, a contributor to the Alzheimer’s Association’s Our Stories campaign, from Chicago. “So we focus on my mom’s strengths right now, and how we can help her enjoy life with as much dignity as possible.”
It’s important to see a doctor if you’re noticing memory loss that’s impacting your life, even if you’re worried about what he or she might tell you. Doctors can look for reversible, treatable causes first, like thyroid disease or nutritional deficiencies, Dr. Paulson says. And if it does turn out to be Alzheimer’s after other possible causes get ruled out, it’s valuable to have that knowledge sooner rather than later, too.
For Veronica, who frequently speaks about her experience caring for her husband, Mario, and is also part of Our Stories, she wishes her family pursued the diagnosis sooner. “I wish we would’ve talked sooner about the changes we both noticed in Mario’s behavior because it would’ve helped ease a lot of stress and pressure on him,” she explains. “Although it wasn’t easy to hear, receiving his diagnosis was sort of a relief because we finally had answers to what was going on.”
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