New Alzheimer’s Vaccine Could Cut Cases In Half

Scientists at the University of Texas, Southwestern have created a DNA vaccine for Alzheimer’s.

It’s thought that the formulation could decrease cases by half.

The vaccine utilizes DNA from Alzheimer’s proteins, from which the immune system learns to fight the compounds and prevent them from collecting in the brain.

The researchers believe human trials are finally in sight.

Dr. Roger Rosenberg, Director of the Alzheimer’s Disease Center at UTS (and also the organization’s founder), said the breakthrough is the result of many years of trial-and-error:

“[It’s] the culmination of a decade of research that has repeatedly demonstrated that this vaccine can effectively and safely target in animal models what we think may cause Alzheimer’s disease.”

According to the Alzheimer’s Association, every 65 seconds, someone in the U.S. develops the disease. 1 in 3 senior citizens die with it or another form of dementia. 5.7 million Americans currently suffer from the terrible condition, for which there are noted risk factors but very little treatment. By 2050, that number is expected to reach nearly 14 million.

Alzheimer's Association Launches Program to Connect Dementia Care Experts with Assisted Living Communities

According to an Alzheimer's Association press release, the Association is launching an innovative pilot program aimed at enhancing the care people living with Alzheimer’s and other forms of dementia receive in assisted living facilities. Modeled after Project ECHO® (Extension for Community Healthcare Outcomes) – a “telementoring” program that uses videoconferencing technology to share information – the new pilot will connect dementia care experts with leaders from assisted living communities across the country. The six-month program will combine bi-weekly presentations with interactive case studies to help enhance person-centered, high quality dementia care in community-based settings.  Go here to see a video describing how Project Echo® works. 

“The Alzheimer’s Association is excited about leveraging the ECHO model™,” said Morgan Daven, senior director, health systems, Alzheimer’s Association. “It allows us to create an ongoing dialogue between dementia care experts and those on the front lines providing care to individuals living with Alzheimer’s and other dementias. Project ECHO provides not only an opportunity for dementia experts to share their insights, but also a forum to explore real case studies from the field to better address the common challenges facing communities providing dementia care.”

Project ECHO, developed by the University of New Mexico in 2003, was first used to train primary care clinicians in rural communities to treat patients with hepatitis C. Subsequent studies found that hepatitis C care provided by Project ECHO trained community providers resulted in outcomes equal to those provided by specialists at a university. Since then, the model has been used to educate providers and improve care for other complex conditions, including: HIV, tuberculosis, chronic pain, endocrinology and behavioral health disorders. This will be one of the first models used to improve quality dementia care in long-term and community-based settings.

“The ECHO model has a proven track record of success,” Daven said.  “It will enable us to disseminate the latest and greatest research and recommendations for dementia care to communities in a timely and efficient manner. Communities will be able to use this information to improve care for people living with dementia. Ultimately, we would like to expand this pilot program across the country.

The six-month pilot program will consist of 12 sixty-minute sessions. Designed specifically for leaders and staff from assisted living communities, the sessions will examine content areas put forth in the Alzheimer’s Association Dementia Care Practice Recommendations released earlier this year. The recommendations, developed by dementia care experts, emphasize person-centered care and are based on a comprehensive review of current evidence, best practice, and expert opinion. Key topics addressed in the sessions, include: 

• Fundamentals of person-centered dementia care
• Detection and diagnosis for nonphysicians
• Person-centered assessment and care planning
• Co-morbidities and medical management for nonphysicians
• Information, education and support needs of individuals living with dementia and caregivers
• Evidence-based nonpharmacological practices
• Progressive support for activities of daily living
• Building and supporting the workforce
• Supportive and therapeutic environments
• Interventions for transitions in care
• Evaluating person-centered practices

The Alzheimer’s Association is partnering with the New York Academy of Medicine (NYAM) to evaluate the initial pilot. NYAM created the first-ever evaluation toolkit and resource guide for users of the ECHO model in 2016. The evaluation will assess key areas including process, impact and sustainability. The Alzheimer’s Association will use the evaluation to inform and enhance future offerings of the program.

In addition to having ongoing engagement with dementia care leaders, pilot participants will have open access to resources provided during the program and will receive a certificate upon completion. Sixteen assisted-living facilities are participating in the initial pilot, they include: Affinity Living Group (Ahoskie House), Brandywine Living (Pennington), Brightview Senior Living (Canton), Brookdale Senior Living (Westlake, Ohio Clare Bridge Alzheimer’s and Dementia Care Program), The Chelsea at Tinton Falls, Forest Hills of DC/Forest Side Memory Care, Genesis Healthcare (Granite Ledges of Concord), Juniper Communities (Brookline’s Wellspring Memory Care Community), The Kendal Corporation (The Admiral at the Lake), HCR Manor Care (Arden Courts of Winter Springs), Senior Lifestyle (Liberty Heights), Senior Resource Group (Maravilla Santa Barbara), Senior Star (Dublin Assisted Living and Memory Support), Silverado (Kingwood Memory Care Community), St. Paul Elder Services Inc., and Sunrise Senior Living (Brighton Gardens of St. Charles).

The pilot program is offered free of charge to participants. Individual donors Bill and Susan Thomas and Robert and Jill Thomas are funding the assisted living pilot program.  

A companion pilot aimed at health care providers is also being launched. It will focus on resources and information relevant to clinical practice and is aimed at helping primary care clinicians not specialized in dementia care, better diagnose, care and support individuals living with Alzheimer’s and other forms of dementia.

Researchers find Alzheimer's Threat Persistent Regardless of Age; Average Survival Confirmed as 6 Years

According to an article published in McKnight's Long Term Care News, first-ever studies are bringing new revelations about Alzheimer's Disease.  The studies were released as the Alzheimer's Association hosts its 2018 International Conference in Chicago. Among the findings: Dementia survival time is short, regardless of the age at onset.

Aiming to better understand survival times of those diagnosed at a relatively young age, Amsterdam researchers poured over data for some 4,500 early-onset dementia patients in one memory clinic. They found that median survival time, across all age groups, was six years, hardly different from those older than 65.

These findings suggest that, despite all efforts and despite being younger and perhaps physically "‘healthier" than older people, survival time in people with young-onset dementia is not greater and  has not improved since 2000

Another study, of dementia data from 11 countries tied to more than 4,100 ages 95-110 found that prevalence of the disease increased with age in all societies.  On the other hand, though, the risk for dementia and cognitive impairment varied “significantly” from country to country, “suggesting cultural and lifestyle factors play a role in remaining physically and cognitively health with age.  Those with higher levels of education, for one, expressed a lower prevalence of dementia than those with fewer years of education.

In yet another study, researchers from the University of California-San Francisco announced this week that the dementia rate of lesbian, gay and bisexual older adults was about 7.4%, compared to about 10% for the general population, according to study results. It was the first dementia prevalence data from a large population of LGB older adults and examined data from some 3,700 such individuals over age 60. 

The association also announced on Sunday that it is establishing the first-ever Dementia Care Provider Roundtable, as a means to gather thought leaders from across the U.S. to find ways to better treat the disease.  The group, which consists of key players in the skilled nursing and assisted living fields, Genesis HealthCare and HCR Manor Care among them, will meet for the first time Thursday, the last day of the five-day conference.

New Law Helps Prevent Wandering of Impaired Adults and Children; Provides Aid Locating the Lost

Congress recently passed bipartisan legislation to help families locate missing loved ones with Alzheimer’s disease, autism and related conditions.  Kevin and Avonte’s Law (S. 2070), named in honor of two boys with autism who perished after wandering from safety, also supports training for caregivers to prevent and respond to instances of wandering. In response to the massive search and tragic death of Avonte Oquendo in New York City, Lori McIlwain, co-founder of the National Autism Association, assisted Senator Schumer’s office in drafting legislation that would help to prevent similar cases in the future. 

The following press release was sent from the Senate Judiciary Committee:

“The feeling of dread and helplessness families must experience when a loved one with Alzheimer’s or autism goes missing is unimaginable. But when communities are empowered to lend a hand, these terrifying situations can have positive endings and even be prevented altogether. This bill, named for two boys – one from Jefferson, Iowa, and one from New York City, improves access to technologies that advance the search for missing children.  It also expands specialized training for caregivers and first responders to help prevent wandering by vulnerable individuals. I’m grateful for all of those who worked together to get this important bill on the books to honor Kevin and Avonte and prevent future tragedies,” Grassley said.

“Families and caregivers should have the support they need to keep their loved ones with Alzheimer’s, autism, and other developmental disabilities safe. This legislation will help to educate and train caregivers to prevent wandering and provide our law enforcement officers with the tools they need to help recover missing loved ones,” Klobuchar said.
“I’m pleased Kevin and Avonte’s Law will become law so we can help save lives and give families a greater peace of mind. This legislation has a deep personal meaning for me, as I was a caregiver for my grandmother during her battle with Alzheimer’s disease. I want to thank Chairman Grassley for his tireless efforts to support this law that will help families and caregivers reunite with loved ones who wander and disappear. Kevin and Avonte’s Law will truly make a difference in preventing tragedies,” Tillis said.

“Making voluntary tracking devices available to vulnerable children with autism or adults with Alzheimer’s who are at risk of wandering will help put countless families at ease. After Avonte Oquendo ran away from his school and went missing, I learned just how prevalent wandering is among children with autism and other development disorders. I am proud to have continued to speak up for those who cannot and to have co-authored this important bill, which will help Avonte Oquendo’s memory live on, while helping to prevent other children and teens with autism from going missing,” Schumer said.

Information on the introduction of this legislation is available here, a bill summary can be found here, and full text of the legislation can be found here.

Dementia Specific Advance Directives More Prevalent

An increasing number of people will experience dementia. Worldwide, the number of people living with dementia is projected to increase from 47 million in 2015 to 132 million by 2050.

Family members and clinicians are often unsure whether the care they provide for patients suffering dementia is the care that patients would have chosen. Across the care spectrum, including skilled nursing facilities, hospital wards, intensive care units, and outpatient clinics, family members and clinicians commonly encounter this dilemma.  

In light of this concern, Paula Span has penned an excellent article One Day Your Mind May Fade. At Least You’ll Have a Plan in the New York Times as part of the New Old Age Series.  The article discusses advance directives for those with dementia.  The article follows a recent article published in the Journal of the American Medical Association (JAMA).  

According to these articles, existing advance directives are not particularly helpful for those with dementia because of the way dementia progresses over time with corresponding diminishing cognitive function.  The New York Times article explains:

"Although [dementia] is a terminal disease, dementia often intensifies slowly, over many years. The point at which dementia patients can no longer direct their own care isn’t predictable or obvious. ... Moreover, patients’ goals and preferences might well change over time. In the early stage, life may remain enjoyable and rewarding despite memory problems or difficulties with daily tasks."

The dementia-specific directive describes the person's wishes  as "goals of care" and offers four options for each stage of dementia, directing the person to "[s]elect one of the 4 main goals of care listed below to express your wishes. Choose the goal of care that describes what you would want at this stage."  The directive divides dementia into three stages, mild, moderate and severe.

The purpose of the dementia-specific advance directive is to express your wishes based on the specific "phase" of dementia you may enter in the future.  The website for this directive is here from which the 5-page directive may be downloaded.  The NY Times article describes that the directive:

"...in simple language...maps out the effects of mild, moderate and severe dementia, and asks patients to specify which medical interventions they would want — and not want — at each phase of the illness."

There are already a number of types of advance directives, with recent pushes for Physician Ordered Life Support Treatment (POLST) and other initiatives, such as the Conversation Project, and the Five Wishes.

Contesting Guardianship or Challenging Guardians Is Problematic

Nina A. Kohn, Associate Dean for Research,  David M. Levy,  Professor of Law at the Syracuse University College of Law, and Catheryn Koss, Founder and former Executive Director of the Senior Law Resource Center, have written an excellent and revealing article describing the challenges for seniors and the disabled in obtaining counsel in modern guardianship cases. The article, "LAWYERS FOR LEGAL GHOSTS: THE LEGALITY AND ETHICS OF REPRESENTING PERSONS SUBJECT TO GUARDIANSHIP, is published in the Washington Law Review.

The article begins by describing the landmark guardianship battle fought in 2012 by Jenny Hatch, a 28-year-old woman with Down syndrome. Ms. Hatch was placed in a group home by her parents, who were appointed as her guardians. Ms Hatch grew despondent about the restrictive placement, the loss of her independent lifestyle, and that she was no longer permitted to work at a local thrift store. She retained an attorney to challenge both the existence of the guardianship and the appointment of her parents as guardians.

She prevailed. In a landmark decision, a Virginia court removed her parents as guardians, appointed Ms. Hatch's close friends in their place, and held that the guardianship itself would terminate after a year. A year later, she was legally reincarnated, restored from being a ward of the state to full legal personhood. The Hatch case was reported on this blog.

The authors next describe why the Hatch case was so extraordinary:

Jenny’s story captured national attention in large part because it is so unusual. Few persons subject to guardianship are able to change the terms and conditions of their guardianships, let alone regain legal capacity after a court has determined that they lack capacity to make decisions for themselves. Jenny [Ms. Hatch] was able to do both.  

A key factor in this success was that Jenny had access to legal representation. Unfortunately, many people in Jenny’s position do not. A major factor contributing to this lack of access is that attorneys are unsure whether they may legally and ethically represent a person subject guardianship.  Attorney reluctance to undertake such representation is understandable.  [emphasis added]. A person subject to guardianship has, by definition, been judicially determined to lack legal capacity and his or her decisions have been delegated to a third party... Through this process, the person has not only been declared by a court to be incapable of directing his or her own affairs but has typically been stripped of the capacity to enter into a legally binding contract. Both may appear to be insurmountable barriers [to effective legal representation]. Attorneys generally can only represent clients who have the capacity to enter into a contract to hire the attorney and the capacity to direct the attorney during the course of the representation. Moreover, in some jurisdictions, probate courts have taken the position that they can prevent a lawyer from representing a person subject to guardianship who wishes to challenge the guardianship.

The authors agree that, especially under these circumstances, guardianship can be a devastating result with significant consequence.  The abstract to the article explains:

Stripped of legal personhood, the individual becomes a ward of the state and his or her decisions are delegated to a guardian. If the guardian abuses that power or the guardianship has been wrongly imposed — as research suggests is not infrequently the case [emphasis added] — the person subject to guardianship may rightly wish to mount a legal challenge. However, effectively doing so requires the assistance of an attorney, and persons subject to guardianship typically have not only been declared by a court to be incapable of directing their own affairs but have been stripped of the capacity to contract. As a result, those who wish to challenge the terms and conditions of their guardianship, or even merely to exercise unrelated retained rights, can be stymied because attorneys are unwilling to accept representation for fear that it is unlawful or unethical.

The aging of the population means the number of persons potentially subject to guardianship is likely increasing. Although precise figures are unknown, estimates suggest that about 1.5 million adults are subject to guardianships in the United States. Many of these are older persons who suffer from Alzheimer’s disease or other forms of dementia. The number of persons subject to guardianship may grow as the number of persons with such conditions increases.  The number of older individuals over age sixty-five in the United States diagnosed with Alzheimer’s disease is projected to reach more than seven million by the year 2025, a forty percent increase over 2014 figures.

"Perhaps more importantly, there is a growing recognition that many guardianships have been wrongly imposed or are overbroad."  This recognition, encouraged in part by the United Nation’s adoption of the Convention on the Rights of Persons with Disabilities (CRPD), has, according to the authors, led to increased interest from the disability rights community in restoring the rights of persons subject to guardianship by challenging judicial determinations of incapacity.

For more information regarding guardianship, see the following articles:

• Estate Plans Should Consider and Attempt to Resolve Guardianship;
• Illinois Permits Guardian Authority to Petition for Termination of a Ward's Marriage; 
• GAO reports on Guardianship Abuse;
• National Groups Acknowledge Need for Guardianship Reform;
• Report on Abuse by Guardians and the Guardianship Process Released;
• Another Reason for Guardianship Planning: Guardian Convicted of Homicide in Death of Ward 

Good Care Is the Best Medicine for Alzheimer's

Lou-Ellen Barkan, President and CEO of the New York City Chapter of the Alzheimer’s Association, writing in the Huffington Post Blog, makes a very poignant observation: "in the absence of an effective therapy for [Alzheimer's Disease], effective care remains the best therapy."

She continues:

And providing quality care has never been more important. Today, Alzheimer's disease is the sixth leading cause of death in the United States and the only cause of death among the top 10 that cannot be prevented, cured, or even slowed. Right now, 5.3 million Americans have this deadly disease - more than a quarter of a million right here in New York City. By 2030, without treatments or a cure, nationwide, this number will skyrocket to 13.8 million.

Worldwide, top researchers, scientists, and medical professionals at renowned hospitals, universities, research centers, and pharmaceutical companies are working day-in and day-out to discover the causes, to develop effective treatments, and to find a cure for Alzheimer's and related dementias. Whether they are investigating beta-amyloid plaques, tau protein tangles, genetics, the effect of environment or lifestyle, their dedication is unparalleled. 

And while great strides have been made over the past decade in diagnostics - allowing us to get help earlier to those who need it most - Alzheimer's research remains poorly funded in comparison to other diseases with far fewer patients. For instance, total funding allocated by the National Institutes of Health (NIH) for HIV/AIDS research dwarfed the funding for Alzheimer's in 2014 (almost $2.978 billion vs. $562 million), yet almost five times as many Americans today are living with Alzheimer's than HIV (1.1 million). In the absence of an effective therapy, our focus MUST be on care. 

For more than 30 years the Alzheimer's Organization, nationally, and through Local Chapters like the one headed by Ms. Barkan, have provided compassionate care and life-saving support for hundreds of thousands of  with dementia and their caregivers.  Among these is the groundbreaking wanderer's safety program developed by the Mew York Chapter's own Jed Levine in the early 1990s, which became one of the prototypes for the nationwide MedicAlert® Foundation + Alzheimer's Association Safe Return® program.

Seniors, their families, and caregivers can support and implement these caregiving efforts through good financial and estate planning.   

Scientists have found that non-invasive ultrasound technology can be used to treat Alzheimer's disease and restore memory. Researchers discovered that the innovative drug-free approach breaks apart the neurotoxic amyloid plaques that result in memory loss and cognitive decline.  The Report was published  in Science Translational Medicine,  Vol. 7, Issue 278, pp. 278ra33 (March 11,  2015), and reported in Science Daily.

Early Onset Alzheimer's Information and Assistance from the ADEAR Center (Alzheimer’s Disease Education and Referral Center)

Early-onset Alzheimer's disease, occurring in people age 30 to 60, is rare but complicated. People living with early-onset Alzheimer’s (like Julianne Moore’s character in the movie “Still Alice”) may face particular challenges in dealing with work, raising children, and finding the right support groups.

A new online resource list from the National Institute on Aging’s Alzheimer’s Disease Education and Referral Center may assist younger people with Alzheimer’s, their families, and caregivers to find information and help. Topics include:

• Living with early-onset Alzheimer’s
• Legal and financial planning
• Caregiving
• Clinical trials and studies

All of the resources on this list are free and accessible online.

Visit the ADEAR Center website for other resources like free publications, caregiving resources, and more information about Alzheimer’s.

Share this resource via social media with the following message:

New resource list for people living w/ early-onset #Alzheimers & their #caregivers from @Alzheimers_NIH  http://1.usa.gov/1CiQi0Y

Consumers Benefit from Feds Effort To Reduce Antipsychotic Drug Use in Nursing Homes

Nursing homes around the country are under pressure from the Federal government to reduce their use of antipsychotic medications in treating patients with dementia, including patients suffering from Alzheimer's Disease. This powerful class of prescription drug is meant for mental illnesses such as schizophrenia.  But they are being used on people with dementia and Alzheimer's Disease at startling rates.  

In the United States, 25.2% of all nursing facility residents receive antipsychotic medications, according to data from the Online Survey Certification and Reporting Database (OSCAR) (member login required) from the Centers for Medicare and Medicaid Services (CMS).  .  More than half of nursing home residents may suffer dementia, and while many of these residents experience BPSD (behavioral and psychological symptoms associated with dementia), the preferred therapies for management of these symptoms are non-pharmacologic, including environmental modifications. If an underlying cause or reason for the behaviors can be identified, a non-pharmacologic approach that addresses this underlying cause can be effective and safe.

Some believe that antipsychotic medications are being used unethically to control behavior, in effect, handcuffing patients to wheelchairs so that they won't be a nuisance.  In addition to the ethical questions of simply sedating patients, the drugs have sometimes serious side effects, and can pose a serious health risk.  Some believe that use of such medications can actually increase a senior's risk of injury or death.  

According to The National Consumer Voice for Quality Long Term Care, the misuse of antipsychotic medications in nursing homes can harm long-term care residents in many ways. When used inappropriately among nursing home residents, antipsychotic medications can:

• Place Nursing Home Residents at Increased Risk of Injury, Harm and Death: Antipsychotic drugs, when prescribed for elderly persons with dementia, can have serious medical complications, including loss of independence, over-sedation, confusion, increased respiratory infections, falls, and strokes. In fact, one study found residents taking antipsychotics had more than triple the likelihood of having a stroke compared to residents not taking these medications. Even worse, antipsychotics can be deadly; in 2005, the Food and Drug Administration (FDA) issued “Black Box” warnings for antipsychotics stating that  individuals diagnosed with dementia are at an increased risk of death from their use and that physicians prescribing antipsychotic medications to elderly patients with dementia should discuss the risk of increased mortality with their patients, patients’ families and caregivers. The FDA has also stated that these medications are not approved for the treatment of dementia-related psychosis, nor is there any medication approved for such a condition. 

Alzheimer's: Type 3 Diabetes?

I don't usually include information regarding health care, but some of you might remember that the first incarnation of my website had a page devoted to health and prescription drug information.  But, this article, available online on the Canadian version of Healthzone, is so compelling, I thought I would share it.

Some experts are now calling  Alzheimer's, "Type 3 diabetes" or diabetes of the brain. Here are a few links between the two diseases:

Nursing Home Resident Dies After Wandering Without Ankle Sensor

According to McKnight's, Charles Klaer, a 72-year-old resident with advanced Alzheimer's disease, walked out of a nursing home where he was a resident, and was struck by a car and killed on a highway a mile-and-a-half away from the facility.  Only a few days before, Mr. Klaer had wandered from Willow Manor Retirement Living and Memory Support Center in Dania Beach, FL, causing officials to call his wife requesting consent for an electronic strap around his ankle.

Klaer was not wearing the ankle monitor when he wandered away. Klaer's family hired a private investigator, Robert Myers, who said he found the monitor next to Klaer's bed in perfect working order, without any damages or cuts. A sheriff's office detective is searching to see if anyone was criminally negligent at Willow Manor.

According to McKnight's, Harold Baldwin, president of Secure Care Products Inc., the company that made the electronic monitoring device, said once the filament strap is wrapped around a person's ankle and snapped shut, it stays on permanently, even in the bath. 

For the full article, go here.