Do I know I’m at risk for developing dementia? You bet.
My father died of Alzheimer’s disease at age 72; my sister was felled by frontotemporal dementia at 58.
And that’s not all: Two maternal uncles had Alzheimer’s, and my maternal grandfather may have had vascular dementia. (In his generation, it was called senility.)
So what happens when I misplace a pair of eyeglasses or can’t remember the name of a movie I saw a week ago? “Now comes my turn with dementia,” I think.
Then I talk myself down from that emotional cliff.
Am I alone in this? Hardly. Many people, like me, who’ve watched this cruel illness destroy a family member, dread the prospect that they, too, might become demented. The lack of a cure or effective treatments only adds to the anxiety. It seems a common refrain, the news that another treatment to stop Alzheimer’s has failed.
How do we cope as we face our fears and peer into our future?
Andrea Kline, whose mother, as well as her aunt and uncle, had Alzheimer’s disease, just turned 71 and lives in Boynton Beach, Fla. She’s a retired registered nurse who teaches yoga to seniors at community centers and assisted-living facilities.
“I worry about dementia incessantly: Every little thing that goes wrong, I’m convinced it’s the beginning,” she told me.
Because Ms. Kline has had multiple family members with Alzheimer’s, she’s more likely to have a genetic vulnerability than someone with a single occurrence in their family. But that doesn’t mean this condition lies in her future. A risk is just that: It’s not a guarantee.
The age of onset is also important. People with close relatives struck by dementia early — before age 65 — are more likely to be susceptible genetically.
Ms. Kline was the primary caregiver for her mother, Charlotte Kline, who received an Alzheimer’s diagnosis in 1999 and passed away in 2007 at age 80. “I try to eat very healthy. I exercise. I have an advance directive, and I’ve discussed what I want” in the way of care “with my son,” she said.
“Lately, I’ve been thinking I should probably get a test for APOE4,” the gene variant, or allele, that can raise the risk of developing Alzheimer’s, “although I’m not really sure if it would help,” she added. “Maybe it would add some intensity to my planning for the future.”
I spoke to half a dozen experts, and none was in favor of genetic testing, except in unusual circumstances.
“Having the APOE4 allele does not mean you’ll get Alzheimer’s disease. Plenty of people with Alzheimer’s don’t have the allele,” said Mark Mapstone, a professor of neurology at the University of California, Irvine. “And conversely, plenty of people with the allele never develop Alzheimer’s.”
Tamar Gefen, an assistant professor of psychiatry and behavioral sciences at Northwestern University’s Feinberg School of Medicine, strongly suggests having an in-depth discussion with a genetic counselor if you’re considering a test.
“Before you say ‘I have to know,’ really understand what you’re dealing with, how your life might be affected, and what these tests can and cannot tell you,” she advised.
Karen Larsen, 55, is a social worker in the Boston area. Her father, George Larsen, was diagnosed with vascular dementia and Alzheimer’s at age 84 and died within a year in 2014.
Ms. Larsen is firm: She doesn’t want to investigate her risk of having memory or thinking problems.
“I’ve already planned for the future. I have a health care proxy and a living will and long-term care insurance. I’ve assigned powers of attorney, and I’ve saved my money,” she said. “Eating a healthy diet, getting exercise, remaining socially engaged — I already do all that, and I plan to as long as I can.”
“What would I do if I learned some negative from a test — sit around and worry?” Ms. Larsen said.
Currently, the gold standard in cognitive testing consists of a comprehensive neuropsychological exam. Among the domains examined over three to four hours: memory, attention, language, intellectual functioning, problem-solving, visual-spatial orientation, perception and more.
Brain scans are another diagnostic tool. CT and M.R.I. scans can show whether parts of the brain have structural abnormalities or aren’t functioning optimally. PET scans (not covered by Medicare) can demonstrate the buildup of amyloid proteins — a marker of Alzheimer’s. Also, spinal taps can show whether amyloid and tau proteins are present in cerebrospinal fluid.
A note of caution: While amyloid and tau proteins in the brain are a signature characteristic of Alzheimer’s, not all people with these proteins develop cognitive impairment.
Several experts recommend that people concerned about their Alzheimer’s risk get a baseline set of neuropsychological tests, followed by repeat tests if and when they start experiencing worrisome symptoms.
“When it comes to thinking and memory, everyone is different,” said Frederick Schmitt, a neurology professor at the University of Kentucky. Having baseline results is “very helpful” and “allows us to more carefully measure whether, in fact, significant changes have occurred” over time, he said.
Credit…Courtesy of Nora Super
Nora Super, senior director of the Milken Institute Center for the Future of Aging, watched her father, Bill Super, and all three of his siblings succumb to Alzheimer’s disease over the course of several years — falling, she said, “like a row of dominoes.”
One of her sisters was tested for the APOE4 genetic variant; results were negative. This is no guarantee of a dementia-free future, however, since hundreds of genes are implicated in Alzheimer’s, Lewy body dementia, frontotemporal dementia and vascular dementia.
Rather than get genetic or neuropsychological tests, Ms. Super has focused on learning as much as she can about how to protect her brain. At the top of the list: managing her depression as well as stress. Both have been linked to dementia.
Also, Ms. Super exercises routinely and eats what is known as a MIND-style diet, rich in vegetables, berries, whole grains, nuts, fish and beans. She is learning French (a form of cognitive stimulation), meditates regularly and is socially and intellectually active.
According to a growing body of research, physical inactivity, hearing loss, depression, obesity, hypertension, smoking, social isolation, diabetes and low education levels raise the risk of dementia. All of these factors are modifiable.
What if Ms. Super started having memory problems? “I fear I would get really depressed,” she admitted. “Alzheimer’s is such a horrible disease: To see what people you love go through, especially in the early stages, when they’re aware of what’s happening but can’t do anything about it, is excruciating. I’m not sure I want to go through that.”
Dr. Gefen of Northwestern said she tells patients that if cognitive testing “is something that’s going to stress you out, then don’t do it.”
Credit…Courtesy of Nigel Smith
Nigel Smith, 49, had a change of heart after caring for his mother, Nancy Smith, 81, who’s in hospice care in the Boston area with Alzheimer’s. When he brought his mother in for a neuropsychological exam in early 2017 and she received a diagnosis of moderate Alzheimer’s, she was furious. At that point, his mother was still living in the family’s large home in Brookline, Mass., which she refused to leave.
Eventually, after his mother ended up in a hospital, Mr. Smith was given legal authority over her affairs, and he moved her to a memory care unit.
“Now, she’s deteriorated to the point where she has about 5 percent of her previous verbal skills,” Mr. Smith said. “She smiles but she doesn’t recognize me.”
Does he want to know if something like this might lie in his future?
A couple of years ago, Mr. Smith said he was too afraid of Alzheimer’s to contemplate this question. Now he’s determined to know as much as possible, “not so much because I’m curious, but so I can help prepare myself and my family. I see the burden of what I’m doing for my mother, and I want to do everything I can to ease that burden for them.”
Kim Hall, 54, of Plymouth, Minn., feels a similar need for a plan. Her mother, Kathleen Peterson, 89, a registered nurse for over 50 years, was diagnosed with vascular dementia five years ago. Today, she resides in assisted living and doesn’t recognize most of her large family, including dozens of nieces and nephews who grew up with Ms. Hall.
Ms. Hall knows her mother had medical issues that may have harmed her brain: a traumatic brain injury as a young adult, uncontrolled high blood pressure for many years, several operations with general anesthesia and an addiction to prescription painkillers. “I don’t share these, and that may work in my favor,” she said.
Still, Ms. Hall is concerned. “I guess I want to know if I’m at risk for dementia and if there is anything I can do to slow it down,” she said. “I don’t want what happened to my mother to happen to me.” Probably, she speculated, she’ll arrange to take a neuropsychological exam at some point.
Several years ago, when I was grieving my sister’s death from frontotemporal dementia, my doctor suggested that a baseline exam of this sort might be a good idea.
I knew then I wouldn’t take him up on the offer. If and when my time with dementia comes, I’ll have to deal with it. Until then, I’d rather not know.
Kaiser Health News (KHN) is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.
A few months ago, an ambulance brought a woman in her 90s to the emergency department at Brigham and Women’s Hospital in Boston.
Her metastatic breast cancer had entered its final stages, and she had begun home hospice care. Yet a family member who had discovered her unresponsive that morning had called 911.
The paramedics determined that she was in cardiac arrest, began cardiopulmonary resuscitation and put a breathing tube down her throat.
“It’s a common scenario,” said Dr. Kei Ouchi, an emergency physician and researcher at Brigham and Women’s who reviews such cases. “And it’s not going to have a good outcome.”
At the hospital, the patient’s blood pressure continued to fall despite intravenous medications. “She was trying to die, and it was only a matter of time before she arrested again,” Dr. Ouchi said.
An oncologist and emergency physicians met with the patient’s family, and explained that her odds of survival were extremely low and that she might well suffer permanent cognitive damage even if she lived. The family agreed to stop resuscitation and return to comfort measures, and the woman died within 24 hours.
Dr. Ouchi’s question: “Should CPR even have been started for this patient?”
It’s a question arising with greater frequency as more people live to advanced ages, when the odds of surviving an out-of-hospital cardiac arrest after CPR are grim, and the chances of avoiding significant neurological disability are worse.
“Many of us in daily practice have the perception that we regularly do resuscitations that are futile from the inception,” said Dr. Patrick Druwé, an intensive care physician at Ghent University Hospital in Belgium. “We wanted to examine that.”
Dr. Druwé’s team organized an international network to survey health care professionals in Europe, Japan, Israel and the United States. The group’s latest study, published in the Journal of the American Geriatrics Society, looked at CPR for adults over 80 who suffered out-of-hospital cardiac arrest.
The results spotlight not only their dismal survival rates — already reported in the medical literature, though probably not widely understood by the public — but how often health care professionals support resuscitation anyway.
In this sample, about 600 clinicians — half paramedics and emergency technicians, the rest emergency physicians and nurses — were asked to recall their most recent patient over 80 who had undergone CPR.
Did the clinicians fully agree with starting resuscitation? Did they feel sure resuscitation should not have been started? Or were they uncertain?
Only 2 percent of these patients survived long enough to leave the hospital. Yet more than half the health care professionals thought CPR was appropriate in those cases. Only 18.5 percent thought it inappropriate.
In cardiac arrest, a minority of patients have what’s called a “shockable” rhythm: The heart is moving, but abnormally, and it is not pumping blood effectively. Using CPR and then a defibrillator to shock the heart can restore circulation and save the patient’s life.
But for patients with so-called non-shockable rhythms — whose hearts show electrical activity yet are not pumping at all — survival rates fall sharply.
The proportion of cardiac arrests involving non-shockable rhythms increases with age. In this multinational sample, almost 90 percent of the CPR attempts on patients over 80 involved non-shockable rhythms.
The researchers also found that more than 40 percent of these cases were “unwitnessed,” meaning that because no one saw the victims collapse, rescuers had no information about how long they had been in arrest — a crucial factor when the odds of successful resuscitation diminish by 10 percent with each minute.
None of the elderly patients with non-shockable rhythms and unwitnessed arrests survived hospitalization. Yet about 44 percent of the surveyed clinicians thought those attempts, too, were appropriate. Nursing home residents had particularly dire outcomes.
The study had limitations, including its reliance on clinicians’ memories. But other research has documented bleak outcomes after CPR for out-of-hospital cardiac arrest at advanced ages, even though resuscitation results have improved over all. (For hospitalized patients, it succeeds more frequently.)
Swedish researchers using data from a national registry found that 30-day survival dropped from 6.7 percent for patients in their 70s to 4.4 percent for those in their 80s to 2.4 percent for those over 90.
In San Mateo County, Calif., researchers found that of patients over 80 with unwitnessed arrests and non-shockable rhythms, none survived to hospital discharge.
Among medical organizations, “the big ethics discussion has been around, ‘When do we stop?’” said Dr. Monique Starks, a cardiologist at the Duke University School of Medicine and an author of an editorial accompanying the study. “Only recently have there been discussions about, ‘When do we start it?’”
Emergency responders in the United States typically default to what one research team called a “maximalist” strategy. But as with any intervention, CPR has its own risks: broken bones, lacerated organs, trauma for the patient and family, expense, diversion of emergency services from patients more likely to benefit, even traffic deaths.
Such policies also may not acknowledge older adults’ specific risks or values.
“As a resuscitation researcher, I want to save everybody,” Dr. Starks said. “But I think we’ve entered this zone where we’re trying to escape ordinary death.”
Of course, a few seniors do well after resuscitation. “An older person in good physical condition who has a shockable rhythm — it can work,” Dr. Druwé said. “But you have to be lucky.”
Ray Dubrowin had that sort of luck. At 89, despite aortic stenosis, he had joined a gym in suburban San Diego and was working with two trainers there when he collapsed. The trainers, Army veterans, began immediate CPR.
At the hospital, his daughter recalled, his family and doctors were planning for hospice care when Mr. Dubrowin began to regain consciousness. In two weeks, he returned to his normal routines and had two more good years before dying suddenly at home.
But such recoveries, the stuff of everyone’s hopes, occur rarely among older adults. Aside from that, prolonged life may not be their primary goal. Informed about the realities of CPR, “if they have a high probability of mental or physical disability, they’re less likely to want it,” Dr. Druwé said.
While professional organizations grapple with guidelines for starting and stopping resuscitation, older adults can make their wishes known by discussing them with their doctors and families, then documenting them in advance directives.
Because do-not-resuscitate orders apply only in hospitals, states began adopting non-hospital D.N.R. policies in the 1990s. But there is a newer and more comprehensive document, covering a variety of health care choices beyond resuscitation and carrying legal weight in any setting, called a Polst (short for “physician orders for life-sustaining treatment”).
Meant for people with serious illnesses at any age, Polst programs are available in nearly every state, though forms and names differ. The Polst website provides state-by-state information.
For now, CPR remains the default for almost everyone, including very sick and frail older patients with poor prognoses.
“In 20 years, people will say: ‘Why do we do this? It makes no sense,’” Dr. Ouchi predicted. “First, do no harm.”
When an ambulance came to rush Amy Goyer’s mother to the hospital one night in 2012, there wasn’t time to pack a bag. Ms. Goyer grabbed a few essentials and tailed the emergency vehicle in her car.
A previous stroke had left Ms. Goyer’s mother mostly uncommunicative, and her father’s dementia made it hard for him to recall important details. They were both counting on their daughter to field questions from her mother’s doctors.
“There’s a sense of panic and urgency,” Ms. Goyer, now 59 and a resident of Arizona, said. “You have one thing on your mind, and that’s getting there.”
According to the Centers for Disease Control and Prevention, about 8 percent of Americans had to spend a night in the hospital in 2018. Meanwhile, according to the American Psychological Association, as of 2016, nearly one-third of Americans have cared for an elderly, ill, or disabled family member. Many of those people may, at some point, require hospitalization.
If you have a chronic illness that requires frequent hospital visits, or you’re caring for an ailing family member, consider packing a “go bag” that you can grab on your way out the door. Ms. Goyer, who is AARP’s caregiving expert, and has personally seen her parents and sister through numerous hospitalizations, said certain items can make the experience more bearable.
“Creature comforts are very important in the healing process,” she said. “You might think it’s all about the medicine and surgical procedures, but it’s not. It’s about feeling safe, secure, comforted, loved, and supported.”
Comfortable clothes and bedding
Not all hospitals will let you bring your own bedding, but if you can, Ms. Goyer said, the feel and smell of your own pillow or a blanket from home can be a huge source of comfort.
“I had this really nice, soft, fuzzy blanket that I started bringing along for my mom,” she said.
Hospitals are often cold, she said, which some studies suggest may make it harder for your immune system to fight off infection. Pack a robe, slippers, socks, a beanie, and other warm (and comfortable) clothing to regulate your body temperature — in addition to getting plenty of rest and fluids. This is important for patients as well as for caregivers who are spending time in the hospital with them, she said. “The last thing you want is to get sick because you were in the hospital caring for someone else.”
All clothing should be loose and comfortable, so you can get in and out of it easily for IVs or any tests. Label everything with your name, so it doesn’t get lost or forgotten. Pack some clean underwear and a change of clothes for the trip home.
A hospital stay is probably not the best time to try to tackle “Infinite Jest.” To occupy your mind, bring along something you enjoy — whether it’s a magazine, coloring book, crossword puzzle, knitting, or cross-stitching supplies — that won’t be overly strenuous.
If you have a spare phone, tablet, or hand-held gaming console at home, load it up with games, movies, music, audiobooks, podcasts, comedy specials, or whatever you think will bring you joy. Just don’t forget the chargers. A high-capacity power bank, an extension cord or surge protector, and extra-long charging cables are also useful in case outlets are out of reach. (Here are Wirecutter’s recommendations for the best fast chargers and accessories.)
Anything that will let you sleep
“Sleeping is always one of the most difficult aspects of being at the hospital,” Ms. Goyer said. “And it’s awful because getting good rest is so, so crucial for healing.”
She recommends lavender room spray or lavender essential oil with a diffuser, since lavender aromatherapy may help improve sleep and reduce anxiety (although scientific evidence is inconsistent on either claim, according to a 2014 Cochrane review). At the very least, it probably smells nicer than hospital air. A travel pillow can be useful if you need to sleep while propped up, and an eye mask, earplugs, and headphones can help block out beeping and blinking from medical equipment. If you have a private room (and if it won’t disturb your nurses and doctors), you could also bring a white noise machine (we recommend the LectroFan) or a Bluetooth speaker (our favorite is the UE Wonderboom 2) to play soothing sounds or music.
Think about how you or your loved one likes to sleep at home, Ms. Goyer said: “If they’re used to falling asleep with the TV on, let them do that. Whatever works.”
Surprisingly good snacks
Most hospitals have cafeterias and vending machines, but the food can be bland, unimaginative, and in some cases, unhealthy — especially if you’re eating it day after day. Your favorite nutritional snacks — whether it’s a bottle of cold-pressed juice or a tin of fancy tea bags — can go a long way toward making you or a loved one feel better. Just be sure to run any snacks by hospital staff, since most hospitals have restrictions on outside food and drink.
Some treatments leave a bad taste in patients’ mouths, so pack mints or gum to keep your mouth feeling fresh. And don’t forget a water bottle or tumbler to stay hydrated, which is crucial for healing.
Tools for organization and empowerment
Liwanag Ojala, chief executive of CaringBridge, a service to connect patients and caregivers to other people dealing with an illness, said it’s always a good idea to bring along a list of the patient’s medications and allergies, names and numbers for all the patient’s doctors and specialists, and emergency contacts.
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Ms. Goyer adds that if you’re packing for a loved one, it can be helpful to print out multiple copies of essential information: a scan of their insurance card, their medical history, and their advance directive (also called a living will, which you can find on AARP’s website). That way, she said, you have the information handy if your phone or laptop dies, and you can give a printout to various doctors and nurses as needed.
If you’re tech-savvy, note-taking apps like Evernote or OneNote can be helpful to keep track of doctors’ updates and other information. But a paper notepad and pen work just as well, if that’s what you’re comfortable with. With permission from the doctor, a voice recorder (or a recording app on your phone) can also be helpful for going back to conversations after you’ve had some time to mentally process. Document everything, Ms. Goyer said: “I guarantee you’ll have to go back and check what happened three days ago.”
Toiletries to stay clean and healthy
Basic essentials like deodorant, a toothbrush and toothpaste, contact solution, dry shampoo, and face and body wipes are must-haves for a hospital go bag, especially since it might be tough to shower regularly. Ms. Goyer also recommends bringing your own hand sanitizer, antibacterial hand wipes, toilet paper, and facial tissues, since they’ll probably be nicer than what the hospital provides.
Disinfectant wipes are great for wiping down frequently used (and infrequently cleaned) surfaces like TV remotes, to prevent the spread of infections. Additionally, Ms. Goyer said, you should make sure to wash your hands with soap and water as much as you can.
Hospital air is also notoriously dry, so you should pack moisturizer, lip balm, and saline nasal spray, and drink plenty of water. When Ms. Goyer’s mother got a sinus infection in the hospital, she got her doctor’s permission to bring in a steam vaporizer to provide some relief.
Some hospitals won’t allow you to take medication you bring from home — even over-the-counter meds — as a safety precaution. But just in case, it’s a good idea to bring along a few extra doses of any medications you’re taking, as well as medical devices like inhalers or hearing aids.
Ms. Ojala said the contents of a hospital go bag will vary depending on the needs of the patient and caregiver.
“What I’d love for people to do before packing a bag is think about what helps them heal,” she said. “Clinicians are great at their jobs, but they don’t often ask: ‘What do you think is going to help you?’ ”
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A version of this article appears at Wirecutter.com.