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How common is it to receive a misdiagnosis of dementia?

A diagnosis of dementia can be devastating, but the damage of an incorrect diagnosis has its own fallout. But how common is it to receive either a false diagnosis of dementia or a misdiagnosis for a specific type of dementia? As those who have dealt with dementia, there are several different types, each with its own set of treatment protocols and expected disease progression.

A recent study conducted by Australian researchers looked specifically at the frequency of misdiagnosis of frontotemporal dementia (FTD), comparing the initial referral data to the final clinical diagnosis, according to SciTechDaily.

The study reviewed the records of 100 patients referred to a memory disorders clinic by specialists. Researchers found that 70 percent of patients initially suspected of having frontotemporal dementia (FTD) were ultimately misdiagnosed.

Insights from the study:

  • 34 patients were accurately diagnosed while 66 were false positive.
  • Researchers determined that misinterpretation of neuroimaging, specifically nuclear imaging, was the primary cause of misdiagnosis of FTD.
  • Cognitive testing also played a factor in misdiagnosis.
  • Patients who presented with prior psychiatric histories were more likely to be misdiagnosed with FTD.

The study was small and based upon cases at a single clinic, so it’s difficult to know how widespread the issue of misdiagnosing FTD is in other countries.

FTD has been in the news this past week due to the ongoing saga of media personality Wendy Williams, who is claiming she doesn’t have FTD after reportedly being diagnosed and assigned a court-appointed guardian. There has been an ongoing controversy about the continued need for the legal conservatorship, and Williams is speaking out, frustrated by the lack of control she now has over her finances and living arrangements. As the above study found in some of the cases it reviewed, it may be possible that Williams was misdiagnosed with FTD and instead experienced alcohol-induced dementia, related to her well-documented struggles with alcohol, or another form of mental illness which had gone untreated. I am not a medical professional, but it seems reasonable that a second opinion and additional testing should be conducted, if it hasn’t already been done. If a celebrity like Wendy Williams can find herself in such a challenging situation, think about regular people like the rest of us who don’t have such a public platform to ask for help.

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New sleep study focuses on REM phase onset and Alzheimer’s link

You don’t have to be a medical professional to know that getting a good night’s sleep is important for overall health and wellbeing. A new study, following up on findings from previous studies, finds evidence of a potential link between a particular phase of sleep and Alzheimer’s.

The study, published in the Alzheimer’s Association Alzheimer’s & Dementia Journal found a potential link between Alzheimer’s and a delay in the onset of the rapid eye movement (REM) phase of sleep. The study was small (128 people) and was conducted in a sleep clinic, which could have impacted sleep quality. Still, the findings were notable due to its focus on REM sleep. According to HealthDay, researchers focused on this key phase of the sleep cycle because its during this period that the brain processed memories.

Half the patients in the study had been diagnosed with Alzheimer’s, and another third had mild cognitive impairment (MCI), while the average age of the study participants was 70.

Two groups were created for the study: those who entered the REM sleep phase earlier (less than 98 minutes after falling asleep), or later than average (more than 193 minutes after falling asleep.) The study found that those with Alzheimer’s were more likely to experience delayed REM sleep. This group also had higher levels of amyloid and tau, toxic brain proteins long associated with Alzheimer’s disease., and lower levels of healthy brain proteins than those with an earlier onset REM sleep phase.

I’m fortunate to never have suffered from insomnia, but I’ve seen the negative impact that being unable to get a good night’s sleep has on the lives of others. My mother had chronic insomnia, though she never developed dementia. My father didn’t suffer from insomnia but he had a sleep cycle that was outside the norm. He worked the swing shift most of his work career, so he wouldn’t get home until very late at night, and then stay up until the early morning hours to wind down. My father also suffered from periodic nightmares. Decades later, my father began having disturbing dreams whose effects lingered long after waking, which coincided with his earliest symptoms of dementia.

As insomnia has seemingly become more common in our society, there’s a lot of resources out there for those who are sleep deprived and looking for better quality sleep. Sleep hygiene has become a popular concept in recent years, which can include everything from diet to bedroom setup. Natural supplements like melatonin may help some, while OTC and prescription medication may be necessary for stubborn cases but come with a host of side effects. Non-medication options include meditation and things like the Calm app’s “sleep stories.” (Check with your health care insurer as some offer complimentary Calm subscriptions.)

While researchers haven’t been able to determine whether insomnia is a risk factor and/or an early sign of Alzheimer’s, good sleep comes with a host of health benefits beyond cognitive function. That’s something worth sleeping on.

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New study sheds new light on cognitive decline’s impact on speech functions

Changes in speech and word recall can be among the earlier signs of cognitive decline. We’ve all experienced this, no matter what the age: “It’s on the tip of my tongue!” While not always a precursor to Alzheimer’s or other forms of dementia, it’s important to recognize changes and talk to your doctor about them.

A recent study, albeit with a small sample size of 125 people, shed new light on what is a frustrating yet common complaint among older adults: difficulty in finding words. Among the findings: “Overall reaction time for word retrieval (controlling for psychomotor slowing) was the best predictor of spontaneous WFD (word finding difficulty) and executive function decline, suggesting processing speed as the key factor, and that verbal reaction time may be an important clinical measure.”

AI software was used to extract data such as speech speed, word variety and pauses in speech, according to The Conversation report. The study participants also completed a series of tasks designed to gauge executive function ability, and the results found a link between age-related decline in executive task ability and speech pace.

The findings are interesting but of course more research will be needed with a larger study group. If confirmed, the findings could help in forming more accurate tests for cognitive decline.

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Study explores link between vision issues and Alzheimer’s disease

A recent study published in The Lancet takes a closer look at a specific vision issue that previous research suggests has a link to Alzheimer’s disease.

The new meta analysis reviewed previous research studies on posterior cortical atrophy. The rare condition causes damage to an area of the brain that results in visual impairment. According to the Alzheimer’s Association, symptoms can include difficulty in “judging distances, distinguishing between moving objects and stationary objects, inability to perceive more than one object at a time, disorientation, and difficulty maneuvering, identifying, and using tools or common objects.” Other symptoms can include hallucinations, and difficulty in performing tasks like spelling and math problems. In the latter stages, memory can be impacted.

Because of the overlapping symptoms of posterior cortical atrophy and Alzheimer’s, there’s ongoing clinical debate as to whether it should be considered a form of Alzheimer’s disease or a distinct disease, according to the Alzheimer’s Association.

The new study “found a strong association between posterior cortical atrophy syndrome and Alzheimer’s disease neuropathology” and “emphasize the importance of Alzheimer’s disease biomarker testing
as part of the diagnostic assessment of individuals with posterior cortical atrophy.” Medical News Today reported that among the study findings, “94% of study participants with posterior cortical atrophy also had Alzheimer’s disease pathology.”

It’s important to note that according to the Alzheimer’s Association, misdiagnosis of posterior cortical atrophy is common as most people would first go to their ophthalmologist if concerned about changes in vision. Those who are experiencing vision issues that persist and who are concerned about their risk of Alzheimer’s disease should seek further testing.

While there’s no specific treatment for posterior cortical atrophy, understanding its potential connection to Alzheimer’s could lead to an earlier diagnosis of the latter. Most of the newer Alzheimer’s drugs on the market are designed for those in the early stages of the disease, so diagnosis timing is critical.

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New survey shows need to increase Alzheimer’s awareness for American women

While it may seem unfathomable to those of us who have seen Alzheimer’s and other dementia touch the lives of our families, a new survey from the Cleveland Clinic suggests that the majority of American women may not be aware of their own risk for the disease.

In what researchers from the Women’s Alzheimer’s Movement (WAM) at Cleveland Clinic called a “startling fact,” 82 percent of women do not know they are at increased risk for Alzheimer’s disease, though two-thirds of cases are women. Only 12% of women who took the survey knew about a potential link between estrogen loss and Alzheimer’s, an area that the Cleveland Clinic is researching.

In other findings from the study, 73% of women have not had a discussion with their doctors about their cognitive health and 62% of women have not discussed menopause or perimenopause. The changes women experience during menopause can impact cognitive health, so it’s important for women to talk to their doctors to learn steps they can take to reduce their risk of dementia.

According to the study, two in five women have dealt with anxiety, depression and/or insomnia.

One not surprising finding from the study: 56 percent of women reported not getting enough sleep. We know that sleep quality can have a direct impact on cognitive health and there is research to suggest poor sleep quality during mid-life can increase one’s risk of dementia. A potential reason for the poor sleep? Over half of the women who took the survey said they cared for others.

While the results of the survey are concerning, researchers said the good news is that women are interested and motivated in learning more about ways they can maintain good cognitive health.

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