The Patient Centered Outcomes Research Institute (PCORI) plans to invest $142.5 million to expand its clinical research network—another facet of a broad initiative that includes major grants supporting physical therapy research.
According to a PCORI news release, the money will be used to establish a second-phase expansion of the National Patient Centered Clinical Research Network(PCORnet), a project that links various health data research networks. The funding will be used in part to expand the number of PCORnet participants from 27 to 34, and will include both clinical data and patient-powered research networks.
The 34 PCORnet partner networks encompass more than 150 conditions, including Alzheimer’s disease and dementia, autism spectrum disorders, heart disease, obesity, Parkinson disease, behavioral health disparities among low-income populations, and health disparities among sexual and gender minorities, all drawn from a wide variety of population groups.
Christmas can be a stressful time for hosts and guests alike, and it’s more so for carers of people living with dementia.
It’s difficult to give general advice about how to get through the holiday season with as little fuss as possible because everyone is unique, and the various types and stages of dementia affect behaviour in different ways.
So I’m going to tell you a story of how one couple is getting through. Hopefully, their strategies will suggest things other families can do for a better Christmas.
Tom and Nola are not real people. Their portraits below are based on my experience working with people with dementia, and on conversations I’ve had with these people, their carers and service providers about how to cope at Christmas time.
Tom was diagnosed with dementia about three years ago.
“My memory is not so good now,” he says. But Nola, his wife and carer, says that he’s still sociable and enjoys food and company.
This has been a month of good news for two of my annoying habits.
The first is my penchant to watch sappy films from Indonesia. I lived in the country after college, and the films help me keep up my Indonesian language skills. A recent review of hundreds of dementia sufferers in India finds that dementia among speakers of multiple languages comes, on average, four years later than it does to people with dementia who are monolingual. Prior studies had found a similar phenomenon, but the new study shows that multilingualism likely postpones dementia regardless of a person’s class or formal education.
My next habit, forgive me, is singing along to musicals. A paper read this month at the Society for Neuroscience meeting in San Diego finds that when nursing home patients with Alzheimer’s disease sing along to The Sound of Music and The Wizard of Oz, they score better on measures of their cognitive abilities.
Monetary, emotional toll
The good news on dementia is a welcome tonic against some overwhelmingly frightening facts. Because we are adding, on average, at least two years to our lifespan every decade, we are all more prone to dementia. One’s chances of dementia double every five years after age 65; one of every two Americans older than 85 is afflicted with Alzheimer’s.
According to the Alzheimer’s Association, there are more than 5 million people in the US living with Alzheimer’s disease. But researchers say they have developed a new model that could improve early detection of dementia, allowing better treatment options and potentially slowing the development of Alzheimer’s disease.
Researchers from the Johns Hopkins University School of Medicine in Baltimore, MD, say the model, based on the reading of cognitive test scores, could determine whether memory loss in older adults is benign or whether it could develop into Alzheimer’s disease.
Although current methods of diagnosing dementia involve cognitive tests, the researchers note that the challenge for doctors is that the majority of normal, healthy people will have low scores in some areas.
They add that this makes it difficult to determine whether the patient has a mild form of cognitive impairment, is in the early stages of dementia, or is free of any cognitive problems.
Besides being able to navigate in two or more cultures, people who speak more than one language have a lower risk for developing earlier dementia, according to a new study published in the journal Neurology. In the study, a team of British and Indian scientists tracked nearly 650 dementia patients, taking note of when each patient was diagnosed with the condition. The researchers found that individuals who speak more than one language and who are diagnosed with dementia tend to receive their diagnosis up to five years later than those who speak only one language.
“We know from other studies that mental activity has a certain protective effect,” study author Thomas Bak, a neurologist at the University of Edinburgh in Scotland told USA Today. “Bilingualism combines a lot of different mental activities. You have to switch sounds, concepts, grammatical structures, cultural concepts. It stimulates your brain all the time.”
The research found that the correlation even extended to illiterate individuals — suggesting that the effect has nothing to do with formal education. When the team compared data for illiterate people, those who could speak more than one language were diagnosed with dementia six years later on average.
For the study, the scientists reviewed the medical records of patients who visited a clinic in the city of Hyderabad, the largest city of the southern Indian state of Andhra Pradesh. The team said that selecting this location was important because residents of the city often speak two or three language – typically some combination of India’s official language, a local dialect, and English.
After being diagnosed with Early-Onset Alzheimer’s Disease (EOAD) at age 57, Rick Phelps was given an Exelon patch and a directive to make a follow-up appointment with his neurologist in six months.
That’s it-that’s all modern medicine could offer a man whose world had been unceremoniously upended by a terminal diagnosis.
Alzheimer’s disease has no cure, no effective treatment, and there are few resources to help families deal with the crushing effects of increasing cognitive impairment.
Fortunately for Rick, unconventional intervention would come a few months after his devastating diagnosis; in the form of a furry, four-legged savior named Sam. The spry German Shepard is a member of an elite squad of service dogs specially-trained to assist people with Alzheimer’s and other forms of dementia.
Unlike therapy dogs that assist blind or physically disabled individuals, these so-called “psychiatric service dogs” are patterned after police K9s-conditioned to analyze a situation and make decisions on how best to protect their human handlers.
A new study suggests that taking certain blood pressure medications may reduce the risk of dementia due to Alzheimer’s disease.
When researchers at Johns Hopkins analyzed data on more than 3,000 elderly Americans, they found that people over the age of 75 with normal cognition who used diuretics, angiotensin-1 receptor blockers (ARBs) and angiotensin-converting enzyme (ACE) inhibitors showed a reduced risk of Alzheimer’s-related dementia by at least 50 percent.
Additionally, diuretics were associated with a 50 percent reduced risk in those with mild cognitive impairment.
Beta blockers and calcium channel blockers did not show a link to reduced risk, the scientists reported in the study, published in the journal Neurology.
“Identifying new pharmacological treatments to prevent or delay the onset of AD dementia is critical, given the dearth of effective interventions to date,” said Sevil Yasar, M.D., Ph.D., assistant professor of medicine in the Department of Geriatric Medicine and Gerontology at the Johns Hopkins University School of Medicine. “Our study was able to replicate previous findings, however, we were also able to show that the beneficial effect of these blood pressure medications are maybe in addition to blood pressure control, and could help clinicians in selecting an antihypertensive medication based not only on blood pressure control, but also on additional benefits.”
The chance that nursing home residents with advanced dementia will receive inappropriate care may be related to their insurance coverage, a new study suggests.
Fewer dying people with dementia were moved to the hospital for possibly unneeded care when their insurance coverage paid on a per-patient basis, rather than for every test and treatment, researchers found.
NYU School of Medicine’s Keith Goldfeld said so-called managed care organizations are motivated to stop people from receiving unnecessary and costly care.
People with advanced dementia won’t usually benefit from being hospitalized during the last months of life for acute ailments like pneumonia, Goldfeld, the study’s lead researcher, said. The focus should be on making the person comfortable.
“When the focus is on comfort, the idea is to try to limit the type of care that could be burdensome for the patient and costly,” he said.
Nursing homes may want to send very sick residents to hospitals because it shifts the cost of treating them from the homes to the hospitals and Medicare, the government-run health insurance for the elderly and disabled.
Dementia is a disease that typically affects the elderly. But recently, a new cognitive condition has been discovered that is afflicting people in their teens and 20s.
It’s called “digital dementia.”
A recent study from South Korea found that individuals who rely heavily on technology may suffer a deterioration in cognitive abilities such as short term memory dysfunction.
Dr. Carolyn Brockington from St. Luke’s Roosevelt Medical Center in New York City sat down with Dr. Manny Alvarez, senior managing health editor for FoxNews.com, to talk about this new phenomenon. She said one of the reasons younger adults are suffering from poor memory is because they don’t feel the need to memorize information anymore.
“The problem is that we’re using technology, which is good, but we’re overusing in many ways,” Brockington said. “We’re not relying on our brains to sort of retrieve the information when we need it.”
While elderly dementia is typically a permanent condition, Brockington said that’s not necessarily the case with digital dementia. However, she said these kind of memory issues could affect future generations.
The man complained of memory problems but seemed perfectly normal. No specialist he visited detected any decline.
“He insisted that things were changing, but he aced all of our tests,” said Rebecca Amariglio, a neuropsychologist at Brigham and Women’s Hospital in Boston. But about seven years later, he began showing symptoms of dementia. Dr. Amariglio now believes he had recognized a cognitive change so subtle “he was the only one who could identify it.”
Patients like this have long been called “the worried well,” said Creighton Phelps, acting chief of the dementias of aging branch of the National Institute on Aging. “People would complain, and we didn’t really think it was very valid to take that into account.”
But now, scientists are finding that some people with such complaints may in fact be detecting early harbingers of Alzheimer’s.