Category Archives: Alzheimer’s Disease and related disorders

“FDA approves much-debated Alzheimer’s drug panned by experts” – AP

“The drug carries a warning about temporary brain swelling that can sometimes cause headaches, confusion and dizziness. Other side effects included allergic reactions, diarrhea and disorientation.”

alz medPhoto source: Pixabay

by Matthew Perrone

WASHINGTON (AP) — “Government health officials on Monday approved the first new drug for Alzheimer’s disease in nearly 20 years, disregarding warnings from independent advisers that the much-debated treatment hasn’t been shown to help slow the brain-destroying disease.

“The Food and Drug Administration approved the drug from Biogen based on study results showing it seemed ‘reasonably likely’ to benefit Alzheimer’s patients. It’s the only therapy that U.S. regulators have said can likely treat the underlying disease, rather than manage symptoms like anxiety and insomnia.

“The decision, which could impact millions of Americans and their families, is certain to spark disagreements among physicians, medical researchers and patient groups. It also has far-reaching implications for the standards used to evaluate experimental therapies, including those that show only incremental benefits.

“The new drug, which Biogen developed with Japan’s Eisai Co., did not reverse mental decline, only slowing it in one study. The medication, aducanumab, will be marketed as Aduhelm and is to be given as an infusion every four weeks.

“Dr. Caleb Alexander, an FDA adviser who recommended against the drug’s approval, said he was ‘surprised and disappointed’ by the decision.

“”The FDA gets the respect that it does because it has regulatory standards that are based on firm evidence. In this case, I think they gave the product a pass,’ said Alexander, a medical researcher at Johns Hopkins University.”

Read this article at the Associated Press in its entirety, click here.

“‘Ever Forward’ — Leeza Gibbons Talks About Caregiving” – next avenue

“How her organization is responding to burdens caregivers have been feeling, and the lessons she learned from her late mom who had Alzheimer’s”

leeza gibbons

Leezagibbons.com – caregiving videos

by Rosanne Corcoran

“I had the pleasure of meeting Leeza Gibbons through a journaling program for caregivers coordinated by Leeza’s Care Connection, her organization which offers programs, resources, strategies and support for those caring for a loved one with a chronic illness or Alzheimer’s disease. Her work has become her passion and mission.

“Leeza Gibbons might be someone you may feel like you know from her Emmy-award winning television career, her New York Times bestselling books or even from winning “The Celebrity Apprentice.” But that wasn’t the Leeza Gibbons I met. 

“The one I met was a caregiver who understood the sadness, the grief and the longing I feel in the midst of my caring for my mother who has Alzheimer’s disease, because Gibbons lost her mother in the same way. Her positivity and compassion have the ability to just make you feel better, even virtually through Zoom, as I think you’ll see in my interview with her below (it has been edited for length and clarity):”

Click here to continue reading this next avenue article.

“7 Early Warning Signs of Dementia You Shouldn’t Ignore” – AARP

“How to spot early indicators that your loved one may have Alzheimer’s or dementia.”

dementia signsISTOCK/GETTY IMAGES

by Patrick J. Kiger

“From age 50 on, it’s not unusual to have occasional trouble finding the right word or remembering where you put things.

“But persistent difficulty with memory, cognition and ability to perform everyday tasks might be signs that something more serious is happening to a loved one’s brain.

“Dementia isn’t actually a disease, according to the Mayo Clinic. It’s a catch-all term for changes in the brain that cause a loss of functioning that interferes with daily life. Dementia can diminish focus, the ability to pay attention, language skills, problem-solving and visual perception. It also can make it difficult for a person to control his or her emotions and lead to personality changes.

“More than 6 million Americans are living with Alzheimer’s dementia, according to a 2021 report by the Alzheimer’s Association. Alzheimer’s disease is the leading cause of dementia, accounting for 60 percent to 70 percent of cases, but a range of brain illnesses can lead to the condition (see sidebar, ‘Diseases that cause dementia’).”

Click here to read this article at AARP in its entirety.

“Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward”

dementia and caregivers

“At a time when unprecedented numbers of people are enjoying more years of life, this report of the National  Academies of Sciences, Engineering, and Medicine describing a way forward for meeting the challenges of persons  living with dementia and their care partners and caregivers could not be more timely and welcome. A previous  National Academies study addressed the evidence on interventions to prevent or slow cognitive decline and dementia.

“The committee that conducted the present study was charged with reporting on evidence regarding interventions aimed at improving care for persons living with dementia and their care partners and caregivers. Both of these reports emanated from a widely shared desire to avoid dreading living to old age rather than approaching a long life as a reward for a life well lived.

In the waning decades of the 20th century, when the research world “discovered” late-life Alzheimer’s disease and the importance of research to understand and address it, this developing field also recognized the need for quality improvement in caring for persons living with dementia, as well as their care partners and caregivers. Early advances  led to findings that essentially helped reduce harm caused by unfortunately common practices in the care of persons with late-stage dementia. Examples included use of mechanical restraining devices (as exemplified by so-called “Geri-chairs”) and chemical restraints, such as harmful overuse of antipsychotics. Today, Geri-chairs are virtually outlawed, and a recent report of the Lancet Commission documents declining use of antipsychotics. Likewise, harmful practices
designed to sustain life, such as the use of feeding tubes and some other forced-feeding techniques, have declined significantly. Yet, while these changes represent progress, they can best be viewed as harm reduction due to existing practices.

Click on the graphic to continue reading by downloading the report.

dementia caregivers

“Even 1 Concussion May Raise Your Odds for Dementia Later” – HealthDay

concussion risk

by Denise Mann

“Sustaining just one head injury may up your chances of developing dementia decades later by 25%, and this risk increases with each subsequent head injury, new research suggests.

“‘Head injury is not the only risk factor for dementia as high blood pressure and diabetes, among others, also contribute significantly to dementia risk, but head injury is one risk factor for dementia that is modifiable by behavioral changes such as wearing helmets and seat belts,’ said study author Dr. Andrea Schneider. She’s an assistant professor in the neurology department at the University of Pennsylvania School of Medicine.

“Dementia is an umbrella term for a group of diseases, including Alzheimer’s disease, that affect thinking ability, memory and/or other cognitive functions.

“Exactly how head injury may lead to dementia is not fully understood yet, Schneider said.”

Click here to continue reading this article at HealthDay.

“‘Providers Don’t Even Listen’: Barriers To Alzheimer’s Care When You’re Not White” – NPR

200489720-001As a researcher at the Allen Institute for Brain Science in Seattle, Alice Mukora says she understands the need to enroll diverse populations in Alzheimer’s research. But that would be more likely to happen, she notes, if people of color had better experiences getting Alzheimer’s care.” – Siri Stafford/Getty Images

by Jon Hamilton

“Many members of racial and ethnic minority groups say they face extra barriers when seeking care for a friend or family member with Alzheimer’s disease.

“Black, Hispanic, Asian and Native American caregivers were far more likely than whites to encounter discrimination, language barriers and providers who lack cultural competence, according to a report released Tuesday by the Alzheimer’s Association.

“‘Among nonwhite caregivers, half say they’ve faced discrimination when navigating through the health care system,’ says Maria Carrillo, the association’s chief science officer. Just 17% of white caregivers reported that sort of problem.

“Black caregivers were most likely to report barriers, followed by Native American, Asian American and Hispanic caregivers.

“One major concern reported by those trying to get treatment or other support for a loved one is that ‘providers don’t even listen to what they are saying, perhaps because of their race, color or ethnicity,’ Carrillo says. ‘What they’re experiencing is actually affecting their care,’ she notes.”

Read this NPR article in its entirety, click here.

Ruth & Erica: “A free YouTube TV series is a realistic story about the struggles, fears, and sacrifices that family caregivers often face”

ruth and ericaRuth and Erica is an interesting and captivating online mini-series in abbreviated less than 10 minute episodes. The comments above are from several of the episodes.

Somehow in the middle of an internet search vortex, we came across the first episode of this captivating mini-series. It is so captivating and well acted that we wound up binge watching the entire series. Know what? We don’t feel at all guilty. The characters are brilliantly cast in a riveting slice of real life for many.

What are the dynamics of aging parents with career focused children? What about the onset of the afflictions of aging? What about the senses of loss and frustration.

Here are a few articles about the YouTube FREE mini-series:

TV show about caring for aging parents: Ruth and Erica  

Ruth & Erica – An Interesting Online Series for Caregivers

Lois Smith in The Americans and in Ruth & Erica


Here are links to the episodes in the entire mini-series. We hope you find the mni-series interesting and thought-inspiring.

 

 

 

“Tony Bennett’s Battle With Alzheimer’s” – AARP

“For four years, the legendary singer and his family have kept his secret. Now, they’re breaking their silence”

tony bennett(Larry Busacca/Getty Images)

by John Colapinto

“Part One: “It’s Just Another Gift”

“On an afternoon in early November, I arrived at Tony Bennett’s home on the 15th floor of a high-rise on the southern edge of New York City’s Central Park. The sprawling three-bedroom apartment’s wall of windows opens on a heart-stopping view of the park and floods the rooms with a steady north light — “a painter’s dream,” as Bennett once said — which matters, because as well as being one of the world’s greatest singers, he is also a serious visual artist. Over the last quarter century, he has spent untold hours in this sanctuary, a converted bedroom turned art studio where I was brought to meet him by his wife, Susan. This was clearly the space of a working artist: the walls papered with sketches, a messy table heaped with brushes and curled paint tubes, an easel by the window holding a work in progress — a black-and-white drawing of the park, the distant buildings expertly evoked with impressionistic flicks of charcoal.

“Bennett himself was seated at a desk along one wall, his chair turned toward the windows as he paged slowly through a coffee-table book open on his lap. Nattily dressed in a blue blazer over an open-collared shirt, dark slacks and white running shoes, he was, at 94, startlingly youthful in appearance and instantly recognizable: the blue, heavy-lidded eyes, the iconic Roman nose, the coiffed salt-and-pepper hair. Missing, however, was the easy, ever-present smile that helped brand him the nice-guy singing idol of his generation — more approachable than the volatile Sinatra, or the jokily “drunken” Dean Martin. Instead, his expression had a masklike impassivity that changed only slightly to dim awareness when Susan, a slim, fine-featured 54-year-old, placed a hand on his shoulder, leaned over and said: “This is John, Tone. He’s come to talk to us about the new album.” She spoke into his ear, a little loudly perhaps, in a prompting, emphatic register, as if trying to reach her husband through a barrier that had fallen between him and the rest of the world.

“Indeed she was. He looked expressionlessly into my eyes before returning wordlessly to his book.

“Tony Bennett has Alzheimer’s disease, the most common form of age-related dementia.”


“Alzheimer’s is a disease that has impacted soooooo many families and this unvarnished look at the way the legendary singer and his family are confronting the disease is refreshingly revealing. The Bennett family and AARP want to help people who might be struggling with the day-to-day challenges of the disease — and part of that help comes from encouraging people to talk about their shared experiences.

“Carve out some time in your day to read this long piece from start to finish. You’ll be glad you did.” (SOURCE: While You Were Working Smart Brief)

“Review: ‘Supernova’ is a quiet burning star of a love story” – Associated Press

supernova

by Mark Kennedy

“The actors Stanley Tucci and Colin Firth have been friends for 20 years and that is plainly evident watching them play longtime lovers in the wrenchingly beautiful film ‘Supernova.’

“The award-winning duo are like a well-worn sweater onscreen, comfortable and lived-in, showing the kind of tart affection people show when ardor’s lust has given way to the slow burn of adoration.

“In a scene early on in ‘Supernova,’ Tucci’s character asks Firth’s character how things are going. ‘It’s fine for me,’ comes the steady reply. Tucci knows better: ‘Liar,’ he says, simply.

“He’s right because the film is about impending loss: Tucci’s Tusker has early onset dementia and Firth’s Sam is thrust into the position of watching the possibility of his love outlast his lover.

“Writer-director Harry Macqueen’s script is as spare and natural as the setting — England’s Lake District, with its ancient stone walls and rolling misty green countryside. Dementia is never mentioned and referred to only obliquely, as in ‘the bloody thing.’”

Read this film review in its entirety here.


Click here to watch the trailer: https://www.youtube.com/watch?v=I4Vk0CVcDts


IMDB reviewRotten Tomatos review


“Picturing the ‘patience, love, and devotion’ of Alzheimer’s care” – STATnews

alz4My mother is feeding my father. He is no longer able to chew his food. My mother prepares mashed food for him.” – JALAL SHAMSAZARAN/NVP IMAGES

by Alissa Ambrose – photos by Jalal ShamsaZaran

“Alzheimer’s disease runs in photographer Jalal Shamsazaran’s family: his aunt, grandfather, and father, Majid, all have been diagnosed.

“So as he documented the final years of his father’s life, in Tabriz, Iran, Shamsazaran recognized his own potential future.

“’Perhaps the character and behavior of my father is a part of my character and behavior in future,’ he told STAT via a translator. ‘I can say that I am photographing myself.’

“Shamsazaran’s photographs depict grief and loss, but also show the strength and love in his family. In the photo above, Shamsazaran’s mother, Aliyeh, tightly embraces her husband during the late stage of his illness. In another, a portrait drawn by a young grandchild is placed by the elder Shamsazaran’s sleeping face — a reminder of the passage of time that a diagnosis like Alzheimer’s makes all the more apparent.”

Continue reading this article at STATnews; click here.