12 things no one tells you about 础濒锄丑别颈尘别谤鈥檚
Caregivers, experts give advice on Alzheimer's care
Caregivers, experts give advice on Alzheimer's care
Ask anyone what worries them most about getting older and more than a few people will say is high up on their list. After a lifetime of making memories and , the idea that a disease like could swoop in and steal it all away is, frankly, pretty frightening.
But what exactly does an 础濒锄丑别颈尘别谤鈥檚 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.
鈥淣ewly diagnosed adults and their family members are deeply concerned about how to navigate this uncertain future,鈥 says Laura Rice-Oeschger, LMSW, who runs a caregiver wellness program for the University of Michigan鈥檚 础濒锄丑别颈尘别谤鈥檚 Disease Center.
鈥淭hey鈥檙e overwhelmed with ideas and fears, which often stem from a previous personal experience with 础濒锄丑别颈尘别谤鈥檚 or what they learn from the media.鈥
Given that June is , there鈥檚 no better time to introduce some real talk about what the disease means (and doesn鈥檛 mean) for someone newly diagnosed. If you鈥檙e dealing with a diagnosis or preparing to care for a loved one who was recently diagnosed with Alzheimer's, these 12 facts 鈥 straight from Alzheimer's health care providers and caregivers 鈥 will help paint a more accurate reality of navigating life with the condition.
1. You can still have meaningful relationships despite having Alzheimer's.
A lot of the fear surrounding an 础濒锄丑别颈尘别谤鈥檚 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鈥檛 have to disappear.
Bobbie, an 础濒锄丑别颈尘别谤鈥檚 caregiver in Rice-Oeschger鈥檚 wellness program, says she has learned that the spirit of her husband is still there despite their changed relationship: 鈥淸Even when] I鈥檓 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.鈥
2. Brain degeneration happens very gradually.
With 础濒锄丑别颈尘别谤鈥檚, 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, M.D., Ph.D., neurologist and geriatric psychiatrist at Providence Saint John鈥檚 Health Center in Santa Monica 鈥 which means decades can pass from the time it begins until the brain is no longer functioning.
鈥淭here is no reason to be hopeless about an 础濒锄丑别颈尘别谤鈥檚 diagnosis,鈥 Merrill asserts. 鈥淚t鈥檚 never too late to start changing your lifestyle to slow down the progress of the disease.鈥
3. Diet, exercise and sleep matter more than you think.
Speaking of lifestyle changes, they can help you slow or even stave off the brain degeneration associated with 础濒锄丑别颈尘别谤鈥檚. Aerobic exercise, sufficient sleep and a healthy diet are all integral to both brain and body health, says Henry Paulson, M.D., Ph.D., neurologist and director of the University of Michigan鈥檚 础濒锄丑别颈尘别谤鈥檚 Disease Center.
Why? Regular cardio activity boosts the parts of the brain involved with memory and cognition, reports; and some research suggests eating a may slow the brain degeneration linked to 础濒锄丑别颈尘别谤鈥檚, according to the .
As for sleep? 鈥淚f you don鈥檛 get enough good sleep, your brain can鈥檛 clear the abnormal proteins that accumulate,鈥 Paulson explains. He's referring to beta-amyloid, which is a brain compound of 础濒锄丑别颈尘别谤鈥檚.
4. It's not always helpful to focus on the genetic component.
If your mother and grandmother both had 础濒锄丑别颈尘别谤鈥檚, does that mean you definitely will, too? While there is a that increases the hereditary likelihood, Merrill says it鈥檚 better to focus on the areas of your life that you have control over instead of the ones you don鈥檛.
鈥淕enetic risk factor is less important than the sum of all the modifiable risk factors,鈥 he says. 鈥淐hanging our behaviors and lifestyle can actually counteract any genetic risk factor we have.鈥
Merrill suggests paying attention to subtle age-related changes as they happen, whether you鈥檙e at an elevated risk of developing 础濒锄丑别颈尘别谤鈥檚 or not. Addressing your diet and exercise routine or prioritizing brain-stimulating activities 鈥 like puzzles, computer games and book clubs 鈥 can ward off some of the normal (and not-so-normal) cognitive effects that occur during the aging process.
5. Planning for the future is critical after a diagnosis.
鈥淭here are so many difficult and excruciating decisions families must make when caring for a family member with a dementia disease,鈥 says Rice-Oeschger. Depending on your situation, this might mean:
- Establishing power of attorney for legal and health decisions.
- Speaking with a financial adviser.
- Discussing end-of-life options.
- Making long-term residential plans, like arranging in-home care or finding an assisted living facility.
Glen, another caregiver in the University of Michigan鈥檚 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.
6. Socialization is a regularly prescribed 鈥渢reatment鈥 method.
There鈥檚 no actual cure for 础濒锄丑别颈尘别谤鈥檚. But don鈥檛 overlook the power of regular social interaction in preserving cognition. And this is extremely important before and after a diagnosis.
鈥淲hen it comes to the brain, I tell patients to 鈥榰se it or lose it,鈥欌 says Paulson. 鈥淧eople are social animals and socialization drives us. Do a lot of whatever mentally stimulates you.鈥
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.
7. Support programs can help preserve the mental well-being of both patients and caregivers.
If you鈥檙e an 础濒锄丑别颈尘别谤鈥檚 patient, finding a local support group can help you navigate the challenges of life with a dementia disease. You can find one .
If you鈥檙e 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鈥檙e experiencing.
鈥淵ou will benefit from continuous, enjoyable, thought-provoking, and profound connections with other caregivers,鈥 she says. 鈥淔ind and commit to a counselor or enriching wellness program [that reminds] you to how to take care of yourself over the long haul.鈥
8. Caregiving is a lot to handle emotionally. But it's also incredibly rewarding.
On the topic of caregiver needs, Rice-Oeschger says daily caregiving is stressful enough to impact a person鈥檚 health and well-being (which can, in turn, directly affect your loved one鈥檚 health and well-being). In a 2017 released by the University of Michigan, 78% of caregivers surveyed said their efforts are stressful.
But it鈥檚 not all gloom: In that same poll, 85% of caregivers reported that caregiving is a rewarding experience and 63% called it both stressful and rewarding.
鈥淢ost people do not understand how stress and positive [emotions], even joy, can be experienced alongside one another,鈥 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 鈥 and it鈥檚 all normal.
9. Education is important, but it鈥檚 only one piece of the puzzle.
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.
鈥淕o to every workshop, conference, support group and education event you can, but also know these will only take you so far,鈥 says Rice-Oeschger.
Debra, an 础濒锄丑别颈尘别谤鈥檚 caregiver from Michigan, echoes these thoughts based on her experience caring for her husband: 鈥淕ather 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.鈥
10. You will have difficult interactions.
Most caregivers find themselves unprepared for the changes in personality and memory recall they observe in their loved ones.
鈥淵our sweet, innocent [mother] who does not swear will curse like a sailor and call you names,鈥 says Kelly, who lives in Cypress, Texas, and cares for her mother with mid- to late-stage 础濒锄丑别颈尘别谤鈥檚. 鈥淭ry to remember it is not her doing these things ... it鈥檚 this disease.鈥
Kelly also reveals she turned into a good 鈥渨hite liar鈥 when it became too traumatizing to remind her mother over and over of her own mother鈥檚 passing more than 20 years earlier and advises against arguing with a person with 础濒锄丑别颈尘别谤鈥檚.
鈥淚f your loved one says something more than once, just pretend like it was the first time you heard it,鈥 she suggests. 鈥溾楧o not say, 鈥楳om, you just said that.鈥 That will only cause an argument.鈥
11. People with Alzheimer's don't lose all independence.
Whether you鈥檙e in the patient or caregiver role, you might be stressing over just how much personal freedom will be taken away as a result of 础濒锄丑别颈尘别谤鈥檚. But patients can still do things for themselves 鈥 it鈥檚 just a matter of finding the right balance.
鈥淢y 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,鈥 says Shon, a contributor to the 础濒锄丑别颈尘别谤鈥檚 Association鈥檚 , from Chicago. 鈥淪o we focus on my mom鈥檚 strengths right now, and how we can help her enjoy life with as much dignity as possible.鈥
12. You shouldn't let the anxiety surrounding a possible diagnosis deter you from getting your brain health checked.
It鈥檚 important to see a doctor if you鈥檙e noticing memory loss that鈥檚 impacting your life, even if you鈥檙e worried about what he or she might tell you. Doctors can look for reversible, treatable causes first, like or nutritional deficiencies, Paulson says. And if it does turn out to be 础濒锄丑别颈尘别谤鈥檚 after other possible causes get ruled out, it鈥檚 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 , she wishes her family pursued the diagnosis sooner. 鈥淚 wish we would鈥檝e talked sooner about the changes we both noticed in Mario鈥檚 behavior because it would鈥檝e helped ease a lot of stress and pressure on him,鈥 she explains. 鈥淎lthough it wasn鈥檛 easy to hear, receiving his diagnosis was sort of a relief because we finally had answers to what was going on.鈥
For more information on being diagnosed or caring for someone with 础濒锄丑别颈尘别谤鈥檚 disease, visit the or the .