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With cognitive conditions, diagnosis is not always easy |
Person, woman, man, camera, TV … With his recitation of that word list in a televised news conference, the garrulous former President Trump put his own twist on what has become an anxious moment for increasing numbers of people. It happens when they undergo tests to see if they suffer cognitive decline, potentially linked to dementia and its most common form, Alzheimer’s disease. Diagnosis of dementia persists as a complex, uncertain part of medicine’s dealing with the condition — partly because many factors must be considered, and, ultimately, because of the reality that doctors may be hunting for unhelpful signs of brain disease. Patients should know that simple forgetfulness or occasional confusion may not be symptoms of serious long-term cognitive decline, and that the brain does not have to become feeble with age. But if individuals and those who know them well see mental acuity problems in an older adult, a full health workup will consist of many ways to detect, say, dementia. The doctor typically will take or study the patient’s medical history, as well as perform a physical and order blood tests for infections and to check levels of chemicals, hormones, and vitamins. The medical sleuthing will zero in on issues such as what medicines patients may be taking, whether they have a family history of dementia-Alzheimer’s, and whether they have aggravating conditions like diabetes, high blood pressure, substance abuse, HIV-AIDS, or hearing loss. Doctors will perform neurological tests, too, such as an assessment of patients’ balance, sensory response, reflexes, and other cognitive functions. If appropriate, your doctor, especially in consultation with a neurologist, may order brain scans to “identify strokes, tumors, and other problems that can cause dementia” federal experts say. “Scans also identify changes in the brain’s structure and function.” Patients may undergo computed tomography (aka a CT scan, which uses x rays to produce images of the brain and other organs), magnetic resonance imaging (MRI, which uses magnetic fields and radio waves to produce detailed images of body structures, including tissues, organs, bones, and nerves) or positron emission tomography (PET scan, which uses radiation to provide pictures of brain activity). Because depression and other mental health issues may affect cognitive functions, patients may undergo psychiatric evaluation. They may take genetic screenings to determine if they are predisposed to known disorders affecting brain health. Yes, they also may undergo cognitive screening, notably the Montreal Cognitive Assessment, widely known as the MoCA test. Trump talked about his screen to make a political point about his mental sharpness, especially as he claimed it showed him to be in better shape than Joe Biden, the (also) 70-something Democratic candidate who defeated him. But Trump’s absurd reduction of his test — essentially as repeating recalled terms — concerned experts. They emphasized that the MoCA test, and others like it, is much more than parroting, and no one should take it or other similar exams lightly, as the Washington Post reported, noting: “[F]or many Americans, the test Trump keeps trumpeting is one of the most fraught, traumatic turning points in their lives — that moment when they realize their mind is beginning to fail and glimpse the troubled path ahead for them and their families.” Cognitive assessments, especially purported memory checkups featuring lists of words and items, have become common online, leading to experts’ caution about using and interpreting results from such screens. Healthy skepticism exists, too, about claims of advances with quicker, easier, and faster blood testing for Alzheimer’s. The New York Times reported that experts believe they are nearing a better way to screen and diagnose the illness using the blood, rather than current “expensive methods like PET scans of the brain and spinal taps for cerebrospinal fluid.” As reporter Pam Belluck wrote: “The [new blood] test has the potential to make diagnosis simpler, more affordable and widely available. The test determined whether people with dementia had Alzheimer’s instead of another condition. And it identified signs of the degenerative, deadly disease 20 years before memory and thinking problems were expected in people with a genetic mutation that causes Alzheimer’s, according to research published in JAMA and presented at the Alzheimer’s Association International Conference. “Such a test could be available for clinical use in as little as two to three years, the researchers and other experts estimated, providing a readily accessible way to diagnose whether people with cognitive issues were experiencing Alzheimer’s, rather than another type of dementia that might require different treatment or have a different prognosis. A blood test like this might also eventually be used to predict whether someone with no symptoms would develop Alzheimer’s.” While Belluck provides due cautions in her news story, and the researchers reporting on their work do, too, the public should be skeptical about developments in Alzheimer’s and other complex medical conditions, warned Gary Schwitzer. He was the founder and publisher of the respected but now defunct HealthNewsReview site and a onetime journalist who has covered health care for decades. He decried in an online post on his site the hype others spent on the Alzheimer’s blood test: “Today’s news about a ‘breakthrough’ test is certainly not the first we’ve heard like that about a possible Alzheimer’s test. On Twitter, former hedge fund manager and TV personality Jim Cramer called it a “major game changer.” Dr. Oz called it a “major breakthrough.” The New York Times headlined its story, ‘Amazing, Isn’t It?’ Long Sought Blood Test for Alzheimer’s in Reach.” He said he went through his files and easily found multiple times when developments with the disease were heralded but then disappointed. This may be due to medical scientists’ over-reliance on theories about Alzheimer’s origins with an excess in the brain of the amyloid protein. Despite billions of dollars and years of study, this idea of the disease’s cause has not proved out, and the theory itself is fading. Indeed, as Schwitzer and others have pointed out, a haunting concern about Alzheimer’s-dementia diagnosis is its “so what?” factor. Even if doctors can determine a patient has the condition, absent highly effective therapies to slow or stop its progress, is the diagnosis helpful? |
End the silence over terrible, costly burdens borne by caregivers |
The conditions of progressive cognitive decline — dementia and its most common form, Alzheimer’s disease — have intensified a crushing, hidden crisis in caregiving. It will only worsen as the nation grays and forces more friends and families to determine how to take care of loved ones with mental incapacitation. Here’s a statistical glimpse at America’s typical caregiver, according to a major 2020 study: She’s typically older than 50. For the last 4.5 years, she has devoted 24 hours a week or more without pay to helping to dress, feed, bathe, shop for, and handle the finances of a relative, likely her mom, who typically is 74.8 years old. The person needing care increasingly may live with her. But trying to juggle other responsibilities, including her spouse, children, and a full- or part-time job, is hugely stressful—and it is growing more so. If this sounds like a tough go, just remember that this is a sketch of the “average” caregiver. One in 10 of them are women 75 or older. They may be devoting 30 unpaid hours or more a week to looking after an even older, sicker spouse. They do so alone. Research shows these women have carried their heavy burdens for more than five years. Younger Americans also are stepping into these challenging roles, with a third of all caregivers now estimated to be millennial men and women ages 18 to 34. Caregivers’ toil, with an estimated value of $470 billion annually, occurs too often with too little support, and in too many cases without pay. It harms caregivers’ health, well-being, careers, and finances. “Family caregivers (age 50 and older) who leave the workforce to care for a parent lose, on average, nearly $304,000 in wages and benefits over their lifetimes. These estimates range from $283,716 for men to $324,044 for women. Evidence suggests that assuming the role of caregiver for aging parents in midlife may substantially increase women’s risk of living in poverty in old age.” The caregiving crisis may be a drag on the economy as a whole, experts say, especially as women play an increasingly important role in the labor force but are forced from it by caregiving responsibilities. Meantime, the stress of shouldering what can seem to be the weight of the world can make life unbearably dark for caregivers. Many say they feel like caregiving pushed them off a cliff with no warning. This isn’t something most people plan for. And they have lost control of their lives. Depression. Fatigue. Anxiety. Worry. These are common, and, sadly, little-discussed effects that add up and may even shorten their own lives. The coronavirus pandemic has underscored the huge burdens that women shoulder in caregiving and running extended households composed of multiple generations. Due to a lack of job flexibility, notably in schedules and the ability to work from home, women suffered harsh and disproportionate job losses (the pandemic created what some economists dubbed a “she-cession”). They have been slow to return to work and to get rehired. They may be considering whether they need to care for an older generation, rather than seeing their dads, moms, and other loved ones struggle and die in nursing homes and other institutions. The pandemic also has re-energized discussion about “de-hospitalization” — whether with technological advances and more, it makes greater sense for patients to spend less time in fancy academic medical centers and giant hospitals and more time at home for treatment and recovery. But will health insurers and the federal government pay ordinary folks for stepping up their roles in treating the sick and injured? President Biden has proposed a major increase in federal support for home care, particularly for seniors, the ill, and the injured. Critics say his financial boost is insufficient, and Republicans in Congress are unlikely to support Biden’s plans. But individually, as well as collectively in our communities, we can reach out to better support caregivers. You may find your church or social clubs already do so—or you may want to push them to. You also may want to think about your own circle of family and friends: Are there people close to you who may have disappeared from your life because, quietly, they’ve had to step up as caregivers? You may wish to renew contacts and give these overwhelmed folks more than air kisses, please. AARP, a leading advocacy group for older Americans, offers solid counsel on what you can do, including the good advice to be concrete and specific with offers of help: Don’t just say you’d be happy to assist. Instead, suggest something like: I wonder if I could sit with your mom for an hour on Saturday to give you a break? Or: I know my kids will be going to the same event and wondered if I could spare you an extra trip by ferrying yours? |
Recent Health Care Blog Posts |
Here are some recent posts on our patient safety blog that might interest you:
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HERE’S TO A HEALTHY 2021!
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Sincerely, Patrick Malone |