When caring for and planning for an individual, we address the financial and legal aspects of caring for a loved elderly one. These planning considerations do not happen in a vacuum. The decisions we make rely on the medical issues, complications and opportunities available to us. Knowing about treatment options and emerging science is critical in planning for future needs. Alzheimer’s disease robs cognitive ability and causes those who are afflicted to need long-term skilled nursing care.
When medical breakthroughs are occurring on diseases the are often require long term nursing care, we must share and learn as to their success and progress. Such studies and advancements are occurring at Butler Hospital in Providence, Rhode Island as evidenced by the attached link to an article published by the Providence Journal.
Promising new research on Alzheimer’s at Butler Hospital and Brown University begins with a simple swab of the cheek
Cognitive impairment such as Alzheimer’s is a prevalent cause for needing long-term care. As the disease progresses, it undermines a persons ability to live independently in the community. Families who are faced with this disease, are a loss as to how to care for their loved ones. Estate Planning is a critical step in this process. Another, is learning and understanding more about the disease and what research is being done around it.
PROVIDENCE, R.I. — The weather one recent evening reflected the nature of the topic when a small crowd gathered at Butler Hospital to learn more about Alzheimer’s disease. It was cold and dark — in a word, gloomy.
Such is the illness, which erases memory and personality while burdening relatives and caregivers on its path to inevitable death. As yet, there is no cure.
But the man who drew these people from the comfort of home preaches hope, in the form of groundbreaking research he conducts with other scientists around the world.
On this evening, Dr. Stephen P. Salloway did more than preach.
Using the military metaphor he favors, he sought to enlist recruits in a new phase of a campaign he likens to the Second World War, when, against great odds, Allied forces defeated a mighty foe.
“I’m very excited that we are building an infrastructure worldwide to fight Alzheimer’s disease,” Salloway said as he began his presentation. “Many of our same allies in World War II are allies in this fight against Alzheimer’s.”
The scientist projected a slide describing research efforts around the planet, with Europe, Australia, North America and parts of Asia pinpointed as strategic centers.
“We are making progress, and there are other initiatives and consortiums, here and abroad, moving this forward,” Salloway said.
On he went, through slides of diseased brains, of German neuropathologist Alois Alzheimer’s first, historic patient, and of the APOE gene, which may indicate increased risk of the disease, depending on which of six possible variants an individual carries. Other factors, including age, diet, lifestyle and overall health, also influence risk.
With researchers elsewhere, Salloway and his team at Butler’s Memory and Aging Program are seeking volunteers to enlist in the so-called Generation Study, for men and women age 60 to 75 who are cognitively normal — but may be at risk, depending on their genetic makeup.
Screening begins with a swab of the cheek, which is analyzed for the APOE gene; eligible candidates may then decide to enroll in clinical studies of new medications, including a drug known as CNP520, which has just entered a trial sponsored by Novartis Pharmaceuticals in collaboration with Amgen and Banner Alzheimer’s Institute.
“Not only can you find out your genetic risk by having the APOE test,” Salloway said, “but then if you’re the right age group and meet the criteria and you’re interested, you could also participate in a prevention trial to try to lower the risk. We’re very excited about that.”
Many in the audience were as well. Eighteen would sign the necessary papers and have their cheeks swabbed. They would become the latest recruits in Salloway’s citizen army — which, when all studies and the Butler prevention registry are counted, now numbers more than 800.
Salloway’s aim is much higher.
Sandra Robinson Gandsman, a Pawtucket resident who spent most of her career in health-care marketing, was among those who enlisted with a swab and her signature. She was motivated, in part, by her knowledge of disease.
“Very honestly, this is more frightening than cancer,” Gandsman told The Journal. “If you get a diagnosis of cancer, there’s a possibility you can be cured. Certainly there are treatments that you can take. But Alzheimer’s — it’s kind of like, ‘Wow, there’s not much there.’”
The work of Salloway and others, she said, could put something there. Lives could be transformed for the better. New generations could escape the threat altogether if promising avenues prove true.
“He’s really on the cutting edge of this research, which is very exciting,” said Gandsman.
Sentiment also motivates Gandsman. She related the experience of a 73-year-old friend diagnosed with early-stage Alzheimer’s — that “mild” first of three phases of the disease characterized by “challenges performing tasks in social or work settings” and “forgetting material that one has just read,” among other symptoms, according to the Alzheimer’s Association.
“I noticed for a couple of years a lot of forgetfulness and repetition,” Gandsman said of her friend.
One day, she stepped on the tennis court with the woman, who had played the game for decades and was skilled at it.
“She didn’t know where she was,” Gandsman said. “She couldn’t keep score, but she didn’t know she couldn’t. She hit the ball and wasn’t sure where she was supposed to stand. I immediately called her husband. I thought she’d had a small stroke.”
“Her husband had been covering for her,” Gandsman said. “I didn’t realize it at the time.”
“Alarming” was the headline on Salloway’s slide listing Alzheimer’s statistics.
It was not hyperbole.
The prevalence of the disease doubles every five years after age 65, reaching as high as half of all people 85 and older. Lacking major advances, by 2050 an estimated 125 million people worldwide will have dementia, a broad category of brain afflictions that includes Alzheimer’s. Health-care costs for U.S. Alzheimer’s patients was estimated at $259 billion in 2017, a figure that does not include the billions of hours of free care, typically accompanied by significant emotional and other stresses, that family and friends provide.
Beyond the statistics is the reality of becoming one, as Salloway’s audience — mostly middle-age and older — acknowledged.
“If you ask older people what disease they fear most, what’s number one?” Salloway said.
“Alzheimer’s,” was the collective response.
“No treatment,” a man said. “You lose brain function. You lose your independence and your dignity.”
But optimism co-exists with alarm, which is another theme Salloway strikes when he speaks to the public, as he does regularly. Building an army is more than a desk job.
“In order to make a difference, we need to find better treatment,” he said. “Congress is getting older and they’re worried about Alzheimer’s, too. That’s one of the few things that Democrats and Republicans agree on: that Alzheimer’s is bad. And so there is now a national plan to fight Alzheimer’s, with a major goal of developing breakthrough treatments by 2025. And we’re working hard to meet that goal.”
Congress has done more than pay lip service, Salloway said, and his slide confirmed it: National Institutes of Health funding for Alzheimer’s research rose from $448 million in 2011 to $991 million in 2016, surpassing the billion-dollar mark last year, when it reached $1.39 billion. This year, research funding is projected to reach $1.8 billion.
“Cancer is $6 billion, so we’re still well below that, but we’re making progress,” said Salloway, a professor at Warren Alpert Medical School of Brown University. “You might have heard that Bill Gates announced he was investing $100 million in Alzheimer’s research. That’s terrific. We’re so excited about that. I think that’s going to stimulate others to donate as well.”
Special-education teacher Donna de Chauny doesn’t have millions to invest; like Gandsman, she answered Salloway’s call out of noble purpose.
“If some of the research that we participate in helps further the information that helps find a cure, then I am happy to participate,” de Chauny said.
Also like Gandsman, de Chauny was motivated by the experience of someone close: her mother, Collene Brinkman Kondratick, who lived with de Chauny and her husband in their Warren home for three years before the disease finally took her in October 2016, at the age of 83.
“When you watch somebody you love go through it, it’s just terrible,” de Chauny said.
Before moving from her home in North Carolina to Warren, Collene’s symptoms had become increasingly pronounced, even as she endeavored to hide them.
“She knew she couldn’t remember things,” her daughter said. “Every time you’d talk to her on the phone, the same things would repeat themselves because she was trying to have a conversation. And she couldn’t really gather the words to react to what you were saying in an appropriate way.”
But she kept trying to maintain a veneer of normalcy, even after relocating to Rhode Island.
“She would pour her coffee on her cereal in the morning and think nothing of it,” de Chauny said. “We’d say, ‘I don’t think that’s going to taste too good, Mom.’ And she’d say, ‘Oh, that’s always the way I have it.’”
Collene was not the only family member to suffer from Alzheimer’s, de Chauny said; all three of her mother’s siblings also died of the disease.
“It’s kind of a little scary,” de Chauny said. “My sister said, ‘Do you really want to find out if you have higher risk?’ And I said ‘Yes, because there are some things that I can do myself, changes in my life, like diet and exercise, to reduce the chances.’”
Salloway spoke to that during the swabbing event, the second held at Butler, saying that remaining mentally and physically active and socially engaged appear to reduce risk, as do “eating a balanced, Mediterranean-type diet,” sleeping well, quitting smoking, maintaining healthy weight and blood pressure, and other measures. All are encapsulated in the mantra: “What’s good for the heart is good for the brain.”
But more than lifestyle is involved in Alzheimer’s, which is characterized by buildups of two proteins in the brain: tau, which forms tangles inside neurons, and amyloid, which forms damaging plaque in connections between nerve cells. The precise mechanism of these protein buildups is not entirely understood, but research has brought advances.
One recent development has been a type of Positron Emission Tomography, or PET, technology that can reveal the presence of plaque years before symptoms of Alzheimer’s appear; previously, a diagnosis could be confirmed only at autopsy, with a microscopic examination of the brain.
Another has been clinical trials of Aducanumab, a drug made by Biogen that has demonstrated success in reducing amyloid plaque. The drug holds such promise that the paper describing the research behind it made the cover of the Sept. 1, 2016, edition of Nature, one of the world’s leading science publications. Salloway was one of the paper’s authors.
A third is a technique being developed by Salloway’s group and a team led by Peter J. Snyder, professor of neurology at the Alpert Medical School and Lifespan’s chief research officer, that could be used to diagnose Alzheimer’s by retinal imaging, a relatively simple and inexpensive procedure that an ophthalmologist could perform.
And there is more promising research elsewhere in the state, including that conducted by University of Rhode Island neuroscientist Paula Grammas, whose work focuses on the role the vascular system plays in Alzheimer’s. Grammas is the inaugural director of the George and Anne Ryan Institute for Neuroscience.
Salloway projected a slide, “Rhode Island as an incubator for innovation in AD research,” that included a photo of Grammas with Governor Gina Raimondo, URI president David M. Dooley, and former CVS Health Chairman and CEO Thomas M. Ryan, who established URI’s Ryan Institute.
“Rhode Island — because of our small size, everybody knows everybody,” Salloway said, to laughter.
But proximity and determination have more than comic value. With both, collaboration can flourish.
“We could really be an innovation center for Alzheimer’s research and prevention studies,” Salloway said.
Without volunteers, innovation would slow. And so, Salloway urged his latest recruits to encourage others to join the army.
“You’re already doing a lot to fight Alzheimer’s,” he said, “but I want you to take the Alzheimer’s challenge. I want you to tell five other people that you came here tonight to find out about Alzheimer’s research. We hope you will spread the word around.”
And also, host “swabbing parties” at homes or civic organizations, with the Butler team handling the logistics.
“This is our second swabbing event and we’re happy to host it here, but we’re not restricted,” Salloway said. “This is a mobile party. We’ll come to you. We’re happy to help you host a swabbing party. This needs to go viral.”
To learn more about Alzheimer’s research at Butler and how to enroll in a study, call (401) 455-6402 or visit butler.org/memory
Alzheimer’s disease research funding
National Institutes of Health spending in 2011
NIH spending in 2017
NIH projected spending in 2018
NIH spending on cancer research in fiscal 2017
Sources: NIH, U.S. Senate Committee on Appropriations
The devastating impact of Alzheimer’s disease and Dementia
A TPT documentary aims the national spotlight on looming Alzheimer’s “epidemic” and its financial and emotional toll on families. The devastating impact of Alzheimer’s disease and Dementia on his own mother — and on his father, who struggled to care for her — first prompted Gerry Richman to take a hard look at the disease. As vice president of national productions at Twin Cities Public Television, he was the mastermind behind a 2004 Emmy-winning documentary called “The Forgetting: A Portrait of Alzheimer’s.” Now, Richman is back with another eye-opening film on the subject. “Alzheimer’s: Every Minute Counts” — airing across the country Wednesday — chronicles the struggles of people living with Alzheimer’s and the emotional and financial challenges it poses for their families. It also forecasts, through interviews with doctors and researchers, a looming crisis for the country as baby boomers enter their senior years and their risk of developing Alzheimer’s increases.
The current numbers are scary enough. More than 5 million Americans have Alzheimer’s — with one new case identified every minute. In addition to the emotional toll, it can cost tens of thousands of dollars to take care of someone with Alzheimer’s, making it one of the most expensive diseases and provoking some health experts to predict that it will collapse both Medicare and Medicaid — and the finances of millions of people. Although Alzheimer’s can strike people younger than 65, it generally occurs in those much older. The risk of developing the disease doubles every five years after 65, according to the National Institute on Aging. It becomes much more common among people in their 80s and 90s. With longer life spans come greater numbers of people at risk of Alzheimer’s. “There hasn’t been a large population of 85-year-olds until this generation,” Arledge said.
The full article can be found HERE.
When you or your loved one is diagnosed with a cognitive issue, planning for how to handle the soon to be increased needs of your loved ones is critical. Discussions as to immediate and long term needs must be had with your medical advisers and with your financial advisers. Financial advisers are as important as medical as there must be a plan in place as to how to pay for the additional services needed.
When you need to develop a plan about how to handle the cognitive issues of a loved one, contact our office for a no-cost consultation to discuss your facts and options.
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About Mathew J. Leonard ESQ.
Matthew J. Leonard's practice is concentrated in business law, estate and asset protection planning, elder care, civil and probate litigation and real estate. He is a member of the Rhode Island, Massachusetts and Florida bars. He is a frequent lecturer and has authored and spoken on in many occasions through the state.